Attention! - This Is The Very FIRST Blog (Read First)
Hello and boy will you be glad you found this blog-spot!
This blog is created specifically for people that suffer from the Sphincter of ODDI Dysfunction. We can use this blog to communicate symptoms, triggers, treatment, moral support and much more.
Hopefully this blog and www.thesphincterofoddi.com can provide you with SOME relief.
This blog is created specifically for people that suffer from the Sphincter of ODDI Dysfunction. We can use this blog to communicate symptoms, triggers, treatment, moral support and much more.
Hopefully this blog and www.thesphincterofoddi.com can provide you with SOME relief.
======================
Updated on 3.15.2011 - I have made some changes to the blog and added a few new posts. You can still chat here if you like. I will leave this blog here as it contains VITAL information, however I encourage all of you to use the newer blogs created for easier referencing for new users.
Thanks,
Administrator
www.thesphincterofoddi.com
PS - Leave a comment to respond to this blog! IT IS FOR YOU!!
Thanks,
Administrator
www.thesphincterofoddi.com
PS - Leave a comment to respond to this blog! IT IS FOR YOU!!
Posted by Administrator at 4/19/2011 9:07 AM 
Categories: uncategorized
Tags: SOD sphincter of oddi gallbaldder treatment abdominal pain stones triggers
Categories: uncategorized
Tags: SOD sphincter of oddi gallbaldder treatment abdominal pain stones triggers
I'm so glad there is another SOD site!
Reply to this
Well, since my wife had the ERCP done in April of 2009 (this year) everything has been GREAT!
She has discovered that one of her MAIN triggers is Caffeine. Since learning this she's had to quit drinking caffinated coffee, which is an easy trade-off for not being in pain.
The past couple of days, she's had some SLIGHT symptoms that have been around a 1 or 2 in relation to pain on a scale of 1-10. She THINKS it's from some of the food she's been eating but the slight attacks always subside and she gets better.
Reply to this
Hi James, glad to hear your wife if doing well! I'm new to all of this stinking SOD and wondering what your wife was diagnosed with? sod I or II, III? how did her problems start? I had my gallbladder out 6 yrs ago and never had a problem until 5 months ago...everything I read on the internet is people that have continued pain after they have ERCP and have duct cut....I'm suppose to have mine next week sometime....I'm scared it is going to make matters worst rather than better...thanks for your comments
Reply to this
I am so glad to see this site. I have had the spincter muscle clipped (around 3 years ago) and still have issues. I have a flare-up every 9-13 mths. I am going through one now and these two sites are what keep me going. I also have had constipation issues, but I wonder if the hysterctomy could contribute? I have been in mind numbing pain for a week. I am lucky most of our ER docs and my GP believes in giving pain meds. I hate to take them as I hate to be doped up, but this time I took them! I am just sad no one can figure this out. I am 58 and the idea of these things in my 60's and 70's are scary! I could barely keep enough water down to stay hydrated this time and I don't have good veins from so many IV's. Thanks so much for sharing your journey as it keeps me going when I am down!
Reply to this
Donna, my wife also has/gets constipation and to be honest the Dr. that diagnosed her with SOD mentioned that he feels her pain/troubles come from a mix of issue, constipation possibly being one of them from gas pressure. Since the ERCP was performed she's been on Miralax and once you figure out the dosage that works for your, IT WORKS!! My wife used to rely on herbal laxatives daily and would sometimes go as long as 2 weeks without a movement, now, since taking Miralax, she goes every day!! Try getting that under control first.
Reply to this
Does anyone have any experience with probiotics. Does this help sod?
Reply to this
Shelly, my wife has tried herbal supplements and one specifically called MACCA. This provided energy but no relief to the SOD.
Reply to this
I am on align and culturelle and no help.
Reply to this
I have taken a very good probiotic sold online which is sent with ice pack and has 35 billion good bacteria per packet, as opposed to 1 billion for a typical product. It is called VSL #3 and works quickly to normalize either constipation or diarrhea. However, it does not stop Sphincter of Oddi pain.
Reply to this
Sorry, I meant to say the product has 450 billion good bacteria per packet!
Reply to this
First of all, thank you so much for making this site! I hope that with this other people won't have to suffer as long as I did trying to figure out what could be causing all of my problems!
My story begins in the final days of 2002. I woke up the morning of Dec. 30 puking and having non stop diarrhea. It got so bad that I was doing both at the same time. I was 15 at the time and was admitted to the hospital's pediatric ward. I stayed in the hospital for 9 days during which I underwent numerous blood work, endoscope through the upper digestive system, x-rays and cat scans, all of which didn't show any problems. I was given reglan as treatment, but had a terrible reaction where my limbs cramped up and I was unable to move. (I am sure most of you know that reglan is often used to help symptoms, so it was a major blow not being able to take it). I was out of the hospital, but never got a clear diagnosis as to what caused my pain, vomiting, and diarrhea.
I went symptom free (other than dealing with getting a pacemaker, removal of 2 kidney stones by grab basket, and the usual illnesses like colds) for the next four years, but in the summer of 2006 the all too familiar symptoms were back. I was rushed back to the hospital with non stop vomiting and diarrhea and diagnosed with colitis. I ended up being septic and they went in and took out my appendix hoping that would help...it didn't. I was transferred to another hospital where my gallbladder was removed. I had tiny stones in my gallbladder that were not seen on any of the scans, and I finally started feeling better after weeks in the hospital. A few months later I started having pains and nausea (some times with vomiting and diarrhea) and I was in and out of the ER numerous times, but never got a diagnosis as to what was causing it all. To make a very long story short this pattern went on for two more years. During this time I had met the man of my dreams and was married in March of 2007. He is a member of the United States Air Force so a few months after we were married we had moved to Wichita Falls, TX. There I was in and out of the hospital so many times one of the hospitals actually told me NOT to come back because there was nothing they could do for me! I was shocked! My mother actually flew up to help me get to doctors since my husband was in the training phase and living in dorm rooms while I was in a near by apartment. I ended up seeing a doctor who actually had the nerve to tell me it was probably an STD causing my pain even though I told her my husband and I had only been with each other...making me feel like I needed to question my husband, who I know would NEVER cheat. After that I got so fed up that I drove 10 hour back to my home town in Louisiana so that I could get in with a good doctor who would believe me and try to figure things out. ---sorry this is so long, I am going to continue in the next post!
Reply to this
Dont know if you still get on here. But was wondering how you are doing now and had a few questions for you. My e-mail is jestully3@yahoo.com. Thank you so much for sharing your story!
Reply to this
Part 2:
After arriving back in my home town I was able to get to a gastro doc who was very helpful. After doing stool sample tests, upper endoscopes, and trial medications though, nothing was conclusive. It was just IBS to him...& in my heart I knew was the wrong diagnosis. So after a few weeks spent in LA trying to get answers, I had to return to Wichita Falls, TX because my husband was graduating from his training and we were set to move to Grand Forks, ND for our 1st base assignment. Once we made it to North Dakota and were settled I started the process of finding a new gastro doc that would hopefully do what was needed to make a right diagnosis. Long story short...that NEVER happened. The doctors I saw in North Dakota thought I was making it all up, or was sexually abused, or addicted to pain killers...any excuse they could think of just trying to shut me up. One night I was awake at 3am and watching TLC's Mystery Diagnosis...the show was about a girl who had sphincter oddi dysfunction...and I start crying realizing what she had gone through was my story! I went back to the doctor and told them I believed that this was my problem and they told me it is so rare and that wasn't my problem and they were unwilling to help me be tested for SOD. I finally went in one day for an apt. and they told me they wanted to do a quick colonoscopy (I thought they were finally going to start searching for answers so I agreed to do the test right then--without the prep)..thinking they would give me something to block the pain for the intrusive procedure I agreed to the test after 2 enemas, little did I know I wasn't getting anything to help me relax and I endured the embarrassment of having the test done while completely concious. It was one of the most horrifying and traumatic events in my life...and I've been through a lot! After it was over the doctor actually had the nerve to tell me I wasn't worth his time because there was nothing he could do! I was in tears....and so angry! I finally started searching online for doctors who specialized in SOD. I found a Dr. Freeman in Minnieapolis which was 5 hours from where we were living in ND. I was able to get my insurance with the military to cover a trip to see him and I was finally on my way-- Dec. 4, 2008 I had my first ERCP and was diagnosed with SOD--and had a sphincterotomy!! I spent weeks in pain after the procedure, but after that I was feeling better than ever and finally thinking I was going to have a normal life! I was told that it could return and I would have to have it again, but to me that was a small price to pay for what I had endured for so many years! Well 6 months have passed when that all too familiar pain was back! So two weeks ago I had my 2nd ERCP and another cut duct in Wichita,KS where I am living at our 2nd base.
So now I am recovering again & hoping that this one gives me years of relief! At 22 years old I am ready to start a family & live a normal life for a change!
Reply to this
First of all, thank you for sharing your history and experiences. I/we can totally relate to some of what you experienced!!
Secondly, I'm personally very sorry that you had to endure all of what you have had previously done. The colonoscopy alone must've been HORRIBLE.
Lastly, we're about 30 minutes north of Grand Forks and know EXACTLY who Dr. Freeman is!! I'm so glad that you have found a Dr. that helped you AND got your life back. It's really a matter of finding a Dr. that believes in you because SO MANY of them just want to medicate the patient. I hope the best for you AND hope you continue to post your progress here.
Reply to this
Thanks for taking the time to read my long story! I figured if I let everyone know exactly what happened in my case some one would be able to relate in some way and get a solution to their problem. It is such a small world huh? Dr. Freeman was the answer to my prayers for a cure. I would recommend anyone suffering for SOD to him! He is participating in a study for SOD, and is very interested in helping any and everyone in need. I was unable to take part in the study because of a history of depression (which I have dealt with since I was very young, thanks to growing up with a mother who was battling Hep C (she is ok now) and then having to deal with a number of my own medical problems.) I was sad that I couldn't take a part in the study, but still am thankful that he still treated me and gave me 6 amazing months of relief!
Since my second cut two weeks ago I have slowly been getting better, the recovery seems very long lived, I am dealing with sharp pain still, but have oxycontin 30mg to help. Sadly my body has gotten so used to narcotic medication that the drugs barely help anymore. I go in for my follow up apt. with the gastro doc who did my ERCP two weeks ago Monday...I will be sure to keep updating on my story!
Again, thanks so much for making this site! You are a God-send!
Reply to this
If you would like, I can add his name and contact information on the main site. I think it would be a GREAT reference for other sufferers. I'm going to put ours up there too.
Yes, please be sure to keep us updated!!
Reply to this
The absolute best doctor in the country for doing bile duct procedures is Richard Kozarek, MD of Virginia Mason Clinic in Seattle. He is famous among his peers, writes articles on this topic, and is the one who will believe your pain really is that bad when all other GI doctors tell you you have IBS. He is worth a flight to Seattle.
Reply to this
Reading your story made me cry as so much is the same for my daughter-and she is only 19. I hope you get some relief and can live a normal life. Take care. Thanks for your story.
Reply to this
Update - 6.30.2009
Well, the wife is still doing great *knock on wood* and she's had slight symptoms depending on what she eats or drinks. Caffeine from coffee is still a no-go, Coke is also a trigger. Pepsi doesn't seem to bother her as much. High fatty foods, such as Chinease food will also cause some "pressure" or tightness in her chest. Vodka, which was her drink of choice is no longer an option. Beer seems to be okay for her.
Reply to this
Jim, I'm the other way about beer. I can not drink anything with carbonation ,like soft drinks or beer. I do miss pizza and beer. But after a few sips I start to hurt.
Reply to this
James, I'm the other way about beer. I can not drink anything with carbonation like soft drinks or beer. I drink a glass of white Zinfindale once in a while. I do miss pizza and beer.
Reply to this
Well, *knock on wood* everything seems to be great. We had a GREAT 4th of July vacation with little to no problems. She did mention to me that she had too much chocolate causing SOME pressure but after a nights sleep it went away.
She is back to working out with me 4 times a week and starting to get back to normal. Man, what a relief to have my wife back.
Reply to this
Well, I am still suffering from pain after my 2nd sphincterotomy. I have ended up in the ER twice, and after going back to the GI doc who did the ERCP I was told that there was nothing else he could do for me :0( I have an apt. with a psychologist, in hopes to get my depression under control. I have been on zoloft for years, but the depression is still pretty bad, so I am hoping to try something new, and if it helps with the pain too, well that would be amazing! I ended up getting a referral to a new GI doc for a 2nd opinion, because I don't want to live in this pain any longer! The only bad thing is the earliest apt with the new GI isn't until the 28th of this month!
I went to my primary care doc and they gave me a few lortabs, but they don't help much at all, and they were very hesitant to give me more pain pills, so I don't know what to do with myself!!
Has anyone else had trouble getting good pain relief? Any tips for making it happen, I really don't know how much longer I can take being in pain!
Reply to this
I have been dealing with the same type of symptoms listed here since last June. It started out as a sharp pain under my right rib after eating. I went to my family doctor and he thought it might be my gallbladder. I had a gallbladder ultrasound and a HIDA scan which showed no problems. By Sept. of 2008. I had the worse pain of my life, we went to the emergency room and I had a CAT scan which showed no problems. Within that week I was at the ER 3x. The pain feels like there is a balloon in there and I can feel it filling up and it feels like it is going to burst.
I decided to go ahead and have my gallbladder out convinced that was the problem. When they took my gallbladder out in Oct 2008, they found that the walls of my gallbladder had thickened and they felt that was causing my pain. It did not help. I have pain everyday after eating. The only time I am pain free is if I don't eat or drink anything. I have had EGD's EUS, CAT scans with and without contrast, colonoscopy, MRI's. Basically any test you can imagine I have had. My first gastro doc thought it might be SOD so he sent me to see Dr.Sherman at the Indiana University medical center. He wasn't much help since I do not have elevated enzymes levels. He also said I have a large diverticulum around the area and an ERCP would be more difficult to perform because of it. I went to see another gastro doc and after going through all the test again, he came to the same conclusion that it was probably SOD and I was type III. He again referred me back to Dr.Sherman. Dr.Sherman doesn't want to do anything and I am at my wits end. I am tired of being in pain everyday. I take Percocet everyday to keep the pain to where I can function. It seems to be the only thing that works for me. Although I have noticed that sometimes it makes the pressure worse. I have tired all of the others, Elavil, Bentyl,Levsin and they don't help. I am just wondering what you do if you can't get anyone to help you? Certain foods do trigger attacks, like eggs and roast beef send me into extreme pain so I stay away from them. Alcohol does too so I don't drink anymore. I would greatly appreciate any advice anyone could give me.
Reply to this
I had a bile duct stuffed with cholesterol debris before my first sphincterotomy and had no elevation of liver enzymes. An MRI with contrast shows the bile duct best. If they saw nothing on that, maybe your pain is from diverticulosis. My husband had pain for years from that, thinking it was kidney stones. Finally he wound up in the ER with diverticulitis and had to take Cipro. Now he uses VSL#3 probiotics to prevent constipation and has had no trouble for a year. However, if you have sludge in the bile duct, that does have to come out. Most doctors, even GI doctors, know very little about this disease. So they want nothing to do with us because they consider us possible malpractice cases (the surgery is not that easy to do) who will continue to complain of pain even after surgery. I went to one GI doctor crying because of the pain, telling him that 6 previous GI doctors had told me IBS and please don't tell me that again because I don't have that; I have bile duct pain---different symptoms altogether! He was very rude, told me I had IBS and gave me a prescription for 12 narcotic pills. Like that would last long with the kind of pain I was having. I actually fainted from pain, it was so bad! I thought I was dying and said my final prayers a few times. That is NOT IBS! This kind of pain can be equal to kidney stone pain. It is much worse than childbirth.
Reply to this
Hello Jennifer and Ashely.
After my wife's last procedure she's been on Amitriptyline at 40mg's/day. She is no longer in pain and doesn't have any more attacks *knock on wood*.
She has discovered that caffeine, chocolate, and not eating frequently enough can cause "Pressure" but ZERO pain.
She was taking Vicodin to relieve pain prior to fixing it but again, Amitriptyline is used for nerves and depression.
To both of you, DO NOT GIVE UP.....you may have to try a completely different hospital until you find a Dr. that will help and treat you. It's a very strenuous and wearing task but can assure you that it boils down to finding the RIGHT Dr.
Reply to this
The right doctor and a sphincterotomy can give months or years of relief, but the pain can gradually or suddenly come back. I think this is the rule than the exception, and it sounds like it is happening to your wife, though she doesn't want to admit it yet. Hate to break it to you, but I am a 20-year veteran, been through it all. When I have time later, I will write my history and something new and hopeful I found on the internet last night which might be an answer for many of us and doesn't involve doctors, drugs, and surgeries!
Reply to this
My mom has ery similiar symptoms that your wife had. Have you ever heard of this disease beening related to unexplained weight loss as well as all of the above mentioned symptoms?
Reply to this
Hello Andrea: In regards to the weight loss, no my wife did not lose any weight from SOD but mainly because of the various meds that all of the Dr's prescribed her. A common side affect of many, many, medications is weight-gain.
Reply to this
I did lose weight before my gallbladder surgery because I was in so much pain and it hurt more after I ate. A sufferer also cuts back on eating fatty foods since that is the worst trigger. I lost about 30 lb. Your mother should be checked for cancer as that is A reason for unexplained weight loss, but not the only one.
Reply to this
Well, my wife is tapering off of her last medication. Her regular Dr. thinks that it has little to nothing to do with the SOD but moreso for prior nerve damage.
She was on 50mg of Amitriptaline everyday since July. For the past 2 weeks she tapered to 25mg, and yesterday she went to 13mg. Next week she will be drug free for the first time in over a year!!
Please pray for us that this vicous disorder never comes back.
Reply to this
I am praying for all of you as well as my daughter. We are still trying to get in to see Dr. Pruitt in Nashville, TN. Has anyone had any experience with him? Take care and hopefully your wife will be great.
Reply to this
Hi, glad I found this site as I am going through the exact same thing...chronic pain which feels as if my stomach is eating itself! Pain going through into my back, soulder blades and chest and nausea. This would occur on a daily basis and when I wasn't suffering an 'attack' I could feel one always brewing in the background, waiting to make an appearance! These 'attacks' would give no prior warning to their sevrity so daily living was somewhat difficult and my employers started getting annoyed although I would push myself into work even if it meant being taken home or to the E.D. I found that with it being rather sneaky we could never plan a holiday or stuff like that incase it reared its ugly head but I would just try to defy it the majority of the time although it would get its was and win if it could.
I had my gallbladder removed but the pain just got so bad afterwards.
I had to be admitted to hospital, twice by emergency ambulance. I would be kept in given painkillers,anti-sickness jabs, put on a drip and starved to then be admitted home.
In the end I felt I was going crazy but my GP was great and has fought my corner and after 2.5 years
I have got a name for this condition plus awaiting manometry by surgeon in London.
This condition is little known about so thanks for alerting others to the symptoms and everyone whio is suffering...there is light at the end of the tunnel, even though the 'attacks' can make you feel like you are dying just keep fighting and don't give up harrassing your doctor...keep going back and just stand your ground.
Charlene.
Reply to this
Hello Charlene:
I'm pleased that you took the time to blog here and share your story. It sounds identical to my wifes.
Now, the last time I blogged my wife as trying to taper off of the Amitriptaline. Well, she got about 2 weeks off and started having the same symptoms come back but also BAD headaches and sleeplessness.
After some research I found out that Amitriptaline is supposed to not be addictive but many, many, users had withdrawl symptoms
She made it as long as she could but had to go back on. What we decided to do is really a slower and prolonged taper. Instead of just cutting the dosage in 1/2 she's going to stick with the dosage she left off at which is around 15mg but will only take it every two days and eventually every other day until it's out of her system.
Fortunately though, this medication DOES relieve the pain caused by SOD, however, like many other medications, it has some sides.
One day my wife will be free of all of this crap, it'll just take time. One step at a time.
God Speed
Reply to this
hi charlene so glad to hear there is someone like myself ! I have been diagnosed with oesophageal spasms but my consultant also thinks i have sphincter of oddi type 111 waiting to have bloodwork taken to determine which type. could u please let me know the surgeon in londons name as i live in cornwall and things are,nt as fast moving here !! i feel like life has stopped and i am just exsisting i am unable to work at the moment as i feel so ill have always worked so this feels strange, hope to hear from you thanks clare.
Reply to this
Hi Charlene, have you got the name of the surgeon in London. I've had SOD now for over 3 years, in May they injected the SOD with Botox to try and releive the pain, but it's made it a lot worse, I now cannot work I find sitting painful, can't drive, can't eat without pain. I just don't seem to be getting anywhere, just keep having the same old blood tests and scans and nothing ever shows up, I feel like they don't believe me anymore. Cath
Reply to this
Thank you all for sharing your stories. I too have suffered for 3 years. I am going to have the monitoring of the sphincter in Charleston SC next month. The first thing they do is an MRI with contrast and a contrast called secretin. Then they will do the ERCP with the monitoring it is at MUSC with a Dr Peter Cotton. He is the Doctor who discovered the sphincter of odi dysfunction and is #1 in the United States. I am discouraged now after reading your comments but appreciate the truth. I wish you all health!!
Susan
Reply to this
Susan, I had Dr. Cotton do my second ERCP and sphincterotomy. I had just my bile duct cut 15 years ago by another doctor and did well all those years. This last time (3 years ago), Dr. Cotton cut the pancreatic duct. Pain came back in about 5 or 6 months. Have you had your first sphincterotomy yet?
Reply to this
Hi everyone! It has been a while since I have checked back in, because I have been going through so much, partly in thanks to SOD. My 2nd sphincterotomy was in June, and like I said before, I have had little to no relief.
I have had a lot of stuff going on between June's sphincterotomy and my process of getting to a new gastro. dr. to see if I can have number 3.
I am just curious if anyone else has had to have multiple surgeries within a year?! I am going on sphincterotomy number 3 in less than a year! Is this at all normal?!
I feel like since 2 years before someone finally got my diagnosis in Dec. of 2008, I have been miserable, and I don't know how to go about life anymore, even with knowing what is wrong and being able to do something about it, it is constantly taking such a toll on me!
I have thought of filing for disability because on top of SOD, I have a pacemaker, depression, anxiety, an immune deficiency, and so many other problems, and working just doesn't seem like it is going to be an option anymore. Does anyone have any advice about how to go about filing for disability? Any tips or stories are welcome!
Thanks ahead of time everyone! I know someone out there has to have some answers for me! Well wishes to all!
Reply to this
HI I am so sorry to hear about what you are going through. I have been sick for three years, and my first is schedule for November 17. I am going to the Doctor that discovered SOD. He is the on e that invented the procedure. Dr Peter Cotton in Charleston SC. Maybe you should go to him.l Goggle him. He is known all over the world. They are #1 Facility in the United States. I hope you feel better soon!! I share your frustration and pain.
Susan
Reply to this
Thanks for this info. I am in GA and I will call him if my gastro visit tues does not end up with any answers.
Reply to this
Susan, thank you so much for the info.! The first doc I saw and had my sphincterotomy with was one of the guys heading up the research team for SOD to try and prove to people that this is a real, life altering ailment...I would love to be able to head back to him for my next surgery, or even the guy you mentioned in SC, but I fear I won't be able to do that any time soon because of cost to travel, and having a deployed husband. I mean I do have family, but I don't want to put them through any more stress than needed because family illness is kicking our butts right now! I really appreciate all the helpful info. though, and hopefully when the day comes that I am in need of another surgery I can go to the best again!!
Reply to this
Hi I have had upper right quadrant pain and epigastric pain and diarrheah that started 6/08. I was in NC and went to my GP and had all sorts of tests done about 25K worth . Addisons,heavy metals, carcinoid, etc. I went to ER about 15 times or more with attacks. They did a ct and ultrasound it was neg finally told me that they cant help me and just keep following with my gp. She finally did a hidascan which showed 88% which I now know is hyperkinetic gallbladder disease and can be a cause of pain. She however said it was fine and at the time I assumed she was correct. I went to a GI and she did endoscopy and celiac biopsy which was negative. I sort of gave up and stayed home and the pain continued for about 7 months. It started to feel a little better . Then 6/09 it started up again. I was now living in GA. I went to the dr. They tested for c diff parasites bacteria. This was semi normal except one weird bacteria in my stool but they said it should be nonpathnogenic. I was admitted because I had to keep going to ers. They did a sigmoid colonoscopy and ultrasound of GB it was ok. I then went to the gastro who treated me in the hospital. He did a full colonoscopy and found mild- moderate inflammation but said it could be from the prep. I said well what about the pain is it coming from this also. He decided to send me for a hidascan. My GB was found to be only 22% now. I met with surgeon and he removed it on 9.23.09. I was ok for about 3 weeks except for 2 excrutiating attacks . One in recovery and the second the day after surgery. The nurse just laughed when I was begging her to do something. The morphine did nothing for me. I was in a sweat with racing heart and felt like I was going to black out from pain. Both attacks lasted about an hour. I think now that it could have been SOD or pancreatitis but the nurses or drs did nothing and did not even care. They never did any liver or pancreatic tests or CBC after surgery. So when I got out of the hospital I seemed to have a little pain in URQ but not too bad. I had a root canal on 10.8 and had to take erythromycin like 5 days later since my throat and node started to hurt and swell. Four days after to antibiotic I now have a feeling like my stomach eating itself every morning and horrible RUQ pain that does not go away. The epigastric pain spreads to my back. I went back to the surgeon and he said he has seen this about 10 times in 1800 surgeries . He said my bile duct is swelling to take the place of my gallbladder and to just try to eat to improve the symptoms. It helps a bit but I think this may be SOD. I am now starting to feel nauseous all night and in the morning as well. I have an appt tues with gastro again.
Reply to this
I am so sorry you have had such a rough time trying to get to a diagnosis of SOD. Trust me, I know I can relate to the constant feeling that everyone was thinking I was just desperate for the pain meds, in stead of believing me because I was young (19 when it started) and that is what most cases are...people wanting drugs. I am not sure where you are located, but there are many docs around the US getting involved in research of SOD and you can even become part of the study and help others to find the way to feel better and pain free for a change! Just do your best to stay strong (which is way easier said than done) and NEVER EVER let a doctor tell you that you are "ok" when you know in your heart you are not!! I hope they are able to start working toward getting your symptoms under better control! It took me over 2 years to finally figure out what was going on, and I did that by watching Mystery Diagnosis one day at 3am and realizing that was ME! I stayed persistent with the GI doc I was seeing (the only one in the town my husband and I were stationed at in ND) and when he refused to help, I got the help I needed on my own! So sometimes it takes a lot more effort than it should, but if you are lucky, you will find someone who knows what is going on and can work with you to find the correct solution!
Best Wishes!
Reply to this
I am a military wife myself . I am older though 37
Reply to this
Karen
It sound like you experience the same thing as I. When you are in these attacks have they tested your liver functions? Dr Cotton explained to me that have SOD III. The kind that is hard to detect. He is going to do a special MRI with a contrast called secretin. They don't do it anywhere else not even Emory. You can go through his program for free if you want to volunteer. My pain subsides some with an antibiotic called Reflaximine. Made strictly for your intestines. Not absorb into your blood stream just stomach etc. On a scale from 1-10 on my worst day its a 6 but as soon as I take that antibiotic it makes it bearable. I hurt no matter what I eat. Its exhausting but I am use to it. I also do not absorb B-12 or vitamin D now., Please get checked. The injections have helped me alot.
I live in Henry county Georgia and have gone through about 5 Gastro docs including Emory. They are a joke!!
Reply to this
Susan, I am in Columbus GA so we are only a couple hours away. I have been going to st francis hospital. I went to the er about 12 hours after an attack sunday and my enzymes were normal except my ast was a tiny bit low. 14 and range ( 15-41) The er doc said it sounded like pancreatitis or ulcer from my description of pain. I went to GI today and he is doing an endoscopy friday to look for ulcer. If this is neg then I will have to pursue SOD. I was reading the notes my surgeon sent the GI doc about my gallbladder. It said there was chronic adhesions everywhere from my duodenum to gb and something else I cant remember. It said this shows the severity of her condtion. MY GI did not even believe I had a GB problem. He said I should live with it and leave it in after the hida scan. He also mentioned maybe I should go to Emory or another research hospital. What did they say at emory about your SOD? The surgeon notes also stated I had a very small narrow bile duct. I wonder if thats the reason for the pain now and be possibly causing SOD. I have had pain at 10 in the hospital right after the surgery and the next day after surgery. Morphine did nothing at all for the pain. I really thought I was going to black out. The attacks since my surgery a month ago have been about a 6. They really hurt but I dont feel like I am going to pass out. I get my attacks the worst in the am when my stomach is empty but they can happen after eating or anytime also. I just had one 15 minutes ago. I had just eaten some pita chips that have no fat. Funny you mention B12 and Vit D. I am low on both as well. I was tested last year when all this started . I now get a B12 shot every month. I just had one at the GI doc today. I feel really weak and my legs tingle about a week before I get my shot each month. My D was really low when tested last year but I never took anything. I just started taking some spring valley 400 IU D3 4 days ago. I cant find a doc to recheck it now. No dr here wants to order the test. I hope the D3 pills will help. What do you take for that?
Reply to this
Wow you have really been through it too! My husband gives me my B-12 shots once a month. At first it was every day, then two times a week , once a week now once a month. The vitamin D I take with Caltrate which is starting to constipate me. I also take 1 cup of Mira lax everyday doctors order. Emory is clueless on SOD. They sent me to Charleston to Peter Cotton the founder of SOD. You can research him. Do take your vitamins because it can lead to other things. We have to start digesting our food or it can lead to Lupus, MS and other serious things. SOD III is what I have so they think, I will know November 16&17. That is when all your tests are ok. I can be in a full blown attack and my blood work is normal. Lucky me LOL I wish you luck. Please go to someone that knows what they are doing because just by doing the test they can cause pancreatitis. This Dr Cotton puts in stints to try to prevent that.
Reply to this
As I stated above, Dr Cotton did my second sphincterotomy. He did the MRI with secretin beforehand. However, I have also had bile duct MRIs with secretin at two other hospitals. Dr. Cotton's hospital in SC is definitely not the only hospital in the country where you can get that test. The test is not rare. What may be rare is doctors actually ordering the test, because most just do not even consider SOD and come up with all sorts of erroneous diagnoses instead.
Reply to this
I have another quick question, has anyone else experienced extreme weight gain with SOD? I know some of the medications I am on for depression and anxiety (just started in Aug.) can cause it, but it seems like as soon as my gallbladder was removed and the pain got bad, my weight just kept going up! Anyone else have this problem???
Reply to this
I was so relieved to read your post. I too have had weight gain and it seems like everyone else has had wt. loss. I'm not sure why unless its because I don't get enough activity. I'm tired all the time. It seems fairly common to be on meds for depression and anxiety with this condition. I'm so grateful to find this website. I've felt so alone with this condition. I've seen Dr Robert Hawes at MUSC in Charleston. He was great but I don't feel like he is accessible. I have questions that my local doctors aren't able to answer. Oh well, good luck.
Reply to this
Hi Mary Anne
I am going to Dr Cotton the head doctor at MUSC and I speak to his nurse Julie at anytime. Try him. They are wonderful.
Susan
Reply to this
To see Dr Hawes, I have to see my MD here locally, have any testing and then they forward all the info to MUSC. Then I WAIT indefinetly for them to review everything and get back to me with the plan. So in the mean time, I have MD's here that really can't help me because they don't know how to treat me (unless I have a pancreatitis attack with elevated lipase) and I wait for the ones there. Is this the same process with Dr Cotton? Its so frustrating. I just wish this wasn't such an unfamiliar territory for my local MD's. Thanks for listening.
Reply to this
No Mary Anne,
My doctor sent a letter and blood work. I speak to Georgette there to have my insurance approved out of network, and then I speak to Julie Akers his nurse. She has a wealth of information. It really is easy with him. Which he is the head doctor, they even set me up in a hotel with a generous discount. Do you need some numbers. I call and that day they scheduled me. I am scheduled for April 20, and 21
Reply to this
Thats unbelievable. I feel like I have to jump hoops. Maybe they don't feel like the information that my MD sent warrants me seeing the Dr Hawes but if thats the case they should say something. I'm gonna call them on Monday rather than waiting to hear from them. Thanks so much.
Reply to this
Call 1-843-792-6982 Ask for Julie Aykers
That is Doc Cottons nurse. She will help you. That is who you need to see. He is the head Doctor there. If you are going to have the procedure I would do it with the one that invented it LOL!! Let me know if I can help.
Reply to this
Hey Susan
I spoke to Julie yesterday. She was very helpful. I'm scheduled to go down on 4/20 and 4/21. I think its the same days you are gonna be there. I'm seeing Dr Hawes though. Thanks again.
Reply to this
I am glad I could help. Did you call the hospital so they could get you a cheaper hotel room. They do that too! My email is susan57@bellsouth.net if you want to email me and I will give you my phone number. We will stay at the Marriott. Are you going for the MRCP with secretin and then the procedure on the 21st?
Reply to this
Where do you call to get the discounted rooms? Are they nice???
Reply to this
Hi Alexis
Doctor Cotton is the best. If you call his nurse Julie Aykers she will help you and call the hospital they will book you a room. You can choose from the hotels they use that give you a discount. They are great people. Ask Julie she will hook you up!! Keep us posted.
Reply to this
Karen, When you had your first procedure done did you get pancreatitis? Did it relieve you at all? I don't know right now if it is even worth it!!How bad is pancreatitis?I have a son who is 36 and Down Syndrome with a lot of health issses I don't know if I should take the risk. I had a friend who had it done and it was a gallstone lodge and infected in her pancreatic duct for 10 years, she suffered. It happens after gallbladder surgery. She did fine and never had another attack.
Thanks
Susan
Reply to this
I wanted to find out if anyone else has had 2 sphincterotomies with pain persisting. The first time, in Jan. 2009, I knew in the recovery room. They did not do manometry with that one. Then, after multiple doctors in Denver and Jax, FL, I found a dr who was willing to perform the manometry. About a week prior to the procedure, we were out of town and in the middle of the night, I started throwing up so violently, I could not leave the bathroom for hours. I had unbelievable RUQ pain thru to the back in between the shoulder blades and a headache like a freight train going thru the middle of my head. I waited to go to the dr, since we were so close. I went on Thursday, Oct 22 for the procedure. He told my husband that the bile duct reading was 65 and the pancreatic was 100. Since 40 was the highest, I am thinking both were out pretty high. So, they spliced both, one extension on the bile and an entire new on the pacreatic duct. They placed a stint and I woke up in upbelievable pain, but it did begin to subside a bit. I am now 11 days later and back to the same old pain. It is bad again and I am having difficulty sleeping lyingn down. Chicken, seafood (ie shrimp, crab legs, etc), coffee, wine, cheese, fruit, sugar, water, and a whole slew of other things bring on the instant stabbing pain. I just received a call back from the dr (really it was his nurse)who performed this latest procedure and she told me that he indicated that, while I might have had a mild case of pancreatitis upon awaking from the procedure, that has passed and I need to go back to the dr who referred me to him (in same practice) because it is not SOD causing the pain.
How much more can anyone take of this when doctor after doctor excuse, minimize and devalue my ability to know my own body. I have been accused of fabricating this pain, having IBS, having NOTHING wrong, and so many other conditions in which the true symptoms of those conditions don't even come close to what I experience every day of my life.
I wanted to know from the doctor if I could still be feeling recuperation pain and once again, I am being dismissed and shuffled back to someone else. I have tried so many pain meds, anti spasmodics, anti anxiety and anti depression, nitro-g, etc and nothing helps. Most narcotics actually increase the pain...
Any ideas are greatly appreciated as I back to square one after 14 months of active and daily involvement by myself and self advocacy to find someone who can help. I already know that the Dr is now going to want to do a slew of tests on my small intestine, which is a complete waste of time, energy and resources.
By the way, I am in the Metro Denver area, but will travel anywhere to get relief. The only saving grace is at least I now have medical proof of the elevated pressure readings, of which before I had nothing. Glass half full attempt.
Thanks.
Reply to this
Hi...I'm sorry you are having a horrible time with this...I'm new to all of this. I just had my ERCPw/sphincterotomy last monday. Have you gone on the websites of Indiana (dr cotton) or Uni of South Carolina or John hopkins??...they all have good info...It sounds like you need to go to one of them....also there is a group on yahoo that a nurse runs...her name is Michelle and she is very knowledgeable and helpful...just search for Sphincter of oddi on yahoo. She has alot of good links. Please take care and hang in there...
Reply to this
Hi Laura
Who did your procedure and how did it go? Did you get pancreatitis?
Susan
Reply to this
Your story sounds very similar to mine, as far as having two sphincterotomies with very little relief after the 2nd. My entire story is listed above, but I just wanted to let you know that there are studies going on throughout the country being led by top doctors to prove that SOD is real, and many of us are suffering. For my first ERCP/sphinct. I went to Dr. Freeman, in Minneapolis, MN at Hennepin County Medical Center. Dr. Freeman was so helpful and the first doctor in 2 years to actually believe what I was going through was real, and not IBS, or in my head...as so many doctors before me suggested. He is one of the leading doctors who are preforming the study and he did an amazing job. I had the stint put in after my ERCP and was in a lot of pain so they removed it after a few days, and while it did take me a while to recover from the surgery, I was able to go 6 months pain free, which I honestly believe would have lasted longer if I was able to keep the stint in longer. I highly recommend him, esp. if you are willing to travel any where to get help.
Here are some websites with info. about Dr. Martin Freeman:
http://www.med.umn.edu/gi/faculty/hcmc/freeman/home.html
http://www.ddw.org/user-assets/documents/PDF/01_program/2009/Handouts/Sp468%20Martin%20Freeman.pdf
http://www.joplink.net/prev/200409/14.html
Here is the Clinical Trial Website info. which includes a number of other doctors participating in the same study as Dr. Freeman:
http://clinicaltrials.gov/ct2/show/nct00688662
Dr. Freeman's clinic phone number is(612) 347-6450
Good Luck! I sure hope this helps!
Reply to this
Hi everyone. I'm sorry for those of you having a difficult time. I just wanted to share that I participated in the clinical study listed above. I will not know until a year after my ERCP if I was in the control group (no sphincterotomy) or in the treatment group, but I feel pretty certain I was treated. I was having pain on a daily basis for several months in the right upper quadrant and eventually ended up in the hospital for two days. Since I had the ERCP (and presumably, the sphincterotomy) I have been MUCH better. It's been 4 months since the procedure.
I saw people asking about weight gain or loss, and for me, personally, since this whole thing started last April I have lost about 30 pounds. Even though I feel better, I'm still not very interested in eating, so I continue to lose, but not as quickly.
I hope everyone who is reading this blog checks out the clinical study link. Even if, unfortunately, you personally are not helped by it, at least you know that the results of the study will help people in the future.
Reply to this
Hi Amy
Thank you for sharing your story. Did you get pancreatitis? I have been suffering for 3 years? Also did you have an MRI before the procedure and did they use a contrast with another contrast called secreatin?
Thank you
Susan Bradford
Reply to this
Hello All - Wanted to wish everybody Happy Holidays and to keep your head up.
I'll answer a few questions that I saw from above.
Weight Gain = Yes, weight can flucuate for various reasons. #1 - Medication, my wife is still on Amitryptaline and it's a MAJOR weight gainer. #2 - Lack of eating. When you don't eat properly your body goes into "survival mode" and actually stores fat.
Pancreantits: Yes, it's possible to get but according to our Dr. is treatable and often times, not as severe as most think. It really depends on the success rate of the ERCP and personal choice to continue with the risks.
Repeat ERCP's: Yes, our Dr. told us that it's possible she could need more than one and MAYBE she only needs this one. Fortunately for us, *knock-on-wood* the pain and pressure of SOD surfaces when the following occurs: HIGH Stress levels, I KNOW it's a trigger. Eating fatty/greasy food. Seriously all of you need to make a lifestyle change and start a STRICT/HEALTHY diet.
Learn what your triggers are and get them out of your daily diet. Alcohol - my wife can no longer drink Vodka/Wiskey but can drink beer in moderation.
I hope that some of this information can help you but more important, do not give up.
Reply to this
NO I havent had it done yet. My husbands mother had a stroke and my Dad has been diagnosed with ALS. Lou Gehrigs disease. Not good!! I have never hurt like you though like labor pains. Just a constant pain in my side like a knife jabbing me after I eat. Did you like Dr. Cotton? I thought he was the founder of SOD.I guess I am wrong. What do you think the other Doctor 15 years ago did different and why was it more successful? Did you get pancreatitis from the procedure? Is it even worth the risk? Sounds like its going to come back anyway.
Reply to this
Susan, ALS has been mentioned on http://spacedoc.net as a side effect of taking statins. Has your father been on cholesterol lowering medication? If so, I would advise going to that website (run by a former astronaut/physician) and doing a search on there for ALS. Lots of info there, also, on the left side under "Statin Side Effects". I will never take statins after reading about all the serious side effects that doctors know nothing about.
Reply to this
Susan, are you talking to me? This is sort of a hard blog to follow the way it is laid out. I can see it getting more difficult to follow as time passes. Anyway, Dr.Cotton was OK, but he did not discuss the possibility that he was going to cut my pancreatic duct and put a temporary stent in, or I would not have done it. I thought he was just going to check my bile duct sphincterotomy to see if it was still open. I awoke from the ERCP surprised and a bit upset. I have been worse after the second operation than the first because I believe with the extra cutting, a bigger hole was made and that food now travels up into the bile duct. The reason I had pain after 15 years is that I ate a whole lot of nuts, and the next morning was in excruciating pain. I think a nut had gotten up in there a little ways and then passed back out. But I was so scared of ever having that bad a pain again that I rushed to Dr. Cotton. Now I am worse because of the pancreatic duct being cut. When I vomited about 5 or 6 months after the pancreatic duct sphincterotomy, the pressure blew food up into the cystic stump (from the gallbladder)and I had really bad pain for a month. Local GI doctors refused to believe that could happen, but it can and does happen. Last summer I had to go back and get that cleaned out. I felt OK for a month, but now am hurting again. Do I have food back in there, even though I have not vomited? Who knows? I hate lying on my right side because that hurts more. I picture food flowing up in there after meals and rotting, getting caught in that cystic stump, where there is no flow. After all, the sphincter is there for a reason, and now I have none.
Reply to this
OK, here is my condensed story. Got my gallbladder out at age 43 due to multiple stones. Not surprising since my grandmother and mother had also had gallbladder operations around that age. I had one of the first ever laparoscopic operations, and they did not check my bile duct at the time. Six months later, chronic diarrhea, followed by the dreaded post cholecystectomy syndrome, which affects 20 to 40% of patients. Had a sphincterotomy at age 46, with lots of cholesterol sludge taken out. I had good results for 15 years. Little or no pain. Then sudden excruciating pain one morning after bingeing on nuts. I think a nut got up a little ways and then passed back out. I think I should have just waited a month for the pain to subside, but I was scared and rushed off to have my bile duct looked at to see if it had re-stenosed. Woke up with surprise pancreatic duct sphincterotomy 3 years ago. I have been through the wringer with many tests, bad GI doctors who just throw everybody who has a pain they don't understand into the wastebasket category of IBS. I don't want anything more to do with doctors, drugs, and operations!
So I googled "post cholescystectomy syndrome" a couple of nights ago, and came up with a very interesting article from, of all places, Romania. http://www.jacn.org/cgi/reprint/23/6/745S.pdf I hope that link shows up.
Anyway, is it possible that something as simple as magnesium would cure some of us after the doctors have failed? Yes, it is possible! Apparently, having a cholecystectomy causes the gut to absorb less magnesium, and magnesium is well known to calm spasmodic conditions.
I have also had migraines for 34 years, and they had gotten so bad lately that I was taking Imitrex every day just to survive. I read on a migraine blog recently about magnesium helping a lot of people with migraines. I had tried magnesium oxide earlier in my life for PMS with no results, but I learned that you need to take chelated magnesium (better absorbed) at a different time of day than you take calcium (because magnesium is a natural calcium channel blocker.) I started taking 400 mg. of a Vitacost capsule of chelated magnesium at night and have not had a migraine for a month now!
In this Romanian study of 52 people, 50 were cured by magnesium, but it took about 9 weeks to replete the body's magnesium. The blood tests are not really necessary, I don't think, because you can assume you are deficient since 85% of the population is. The Tiomag used in this study is apparently only over in Europe, but regular chelated magnesium combined with methionine, an amino acid, would be the same thing and is readily available here in the US over the counter. I am definitely going to try this. The only limitation would be getting diarrhea before you can get enough magnesium to help you.
Reply to this
Anomy-mouse I would like to talk to you could you email me at susan57@bellsouth.net and I will call you
Thanks for your help
Reply to this
To the guy who started this blog, thank you. And a word to all women who are menopausal or have had hysterectomies...lack of estrogen can cause many different symptoms because estrogen is involved in over 400 body processes, just like magnesium. Flushing, headaches, depression, insomnia, irritability, muscle cramps, heart palpitations, rosacea, drying out of the eyeballs and vagina, the list goes on and on. I take bioidentical estrogen (estradiol) every day and it has cured a lot of my symptoms, but just not SOD. So consider estrogen before running off for multiple tests and drugs for multiple symptoms. Remember, it was Premarin with Provera that caused the slight increase in cancer, not bioidentical estrogen.
Reply to this
Anony-Mouse-You have been so helpful to me thank you so much. I know this blog is confusing. My email is susan57@bellsouth.net. If you would email me I would love to call you.Please!!
Thanks
Susan Bradford
Reply to this
I'm still lurking and reading all of the reply's.
To clarify, if you're speaking to somebody in general. Use the "Reply to this" link at the bottom of their message and you will quote their message.
God-Speed everybody and keep hope.
Reply to this
At the time I last wrote, I was having pains which I thought were bile duct related, although it was more in the stomach instead of right upper quadrant and back. It felt a lot like the stomach pains I had before my gallbladder surgery. Then I remembered that I had previously had stomach erosions from taking NSAIDs for bile duct pain. I thought I might have gotten erosions again from taking an antibiotic on an empty stomach, so I started Prevacid and the pain immediately stopped. I am going to take it for a couple of weeks, then try quitting. I hate to take it, but it is working. It is not known by most GI doctors, but proton pump inhibitors cause biliary dysfunction even in normal people: http://www.medscape.com/viewarticle/503676
So if you don't absolutely have to take PPIs, quitting might help your bile duct pain.
I am still taking the magnesium, haven't added the methionine yet, and am not feeling any bile duct pain, even when eating peanut butter. However, I sure can't say I am cured, as the condition comes and goes, as we all know.
Reply to this
I am sorry the above link does not work. Guess you have to be registered at Medscape for it to work. Here is another interesting SOD article by a doctor who used to be at Duke:
http://www.nature.com/ajg/journal/v100/n6/full/ajg2005210a.html
Hope that link works. I would warn you to avoid this particular GI doctor unless you want to waste time and money being rudely told you just have gas pains.
Reply to this
I'm not able to access this articla@ Duke? What does it say please.
Suzanne
Reply to this
Great article thanks for sharing. I have type III SOD
Reply to this
You have a wealth of knowledge I appreciate all that you share.
Thanks
Susan
Reply to this
Susan, if you are a type 3 and do not have stenosis (blockage) with sludge like I did the first time, then you would probably not benefit from a sphincterotomy and could be made worse. The question is if you are sure you don't have stenosis. They were not able to tell if I had it until they actually went in and did the ERCP. The MRI with secretin apparently can't tell them this, even in 2010.
If I were you, I would try taking NSI brand Magnesium Ultra from Vitacost, one capsule at night apart from any calcium, antacids, or milk/cheese. Give it a month. If you experience pain during the day, you can take an extra one. I am not sure if the methionine, which is an amino acid, is necessary, or if the Romanian doctors just used a preparation of magnesium that is readily available in that country which happened to have methionine in it. If I do develop bile duct pain again, I will add the methionine to see if that helps, but for now I am just taking the Magnesium Ultra.
I am thinking that this biliary pain and SOD is occurring more now that they have the laparascopic gallbladder surgery. My mother and grandmother had the old operations, of course. Big ugly scars, but no pain for the rest of their lives. Now they put a metal clip on the cystic stump to clamp it tight and just leave it there forever. Maybe that hurts?
I know somebody who had so much biliary pain they tried tube feeding him for 6 months to "give it a rest". He had no pain for 6 months. Then he started eating again and the pain came back. If anybody is ever given this rather drastic option, just thought I'd let you know that it doesn't work.
Reply to this
Hmmm....was doing some research on methionine and discovered that high methionine diets resulted in plaques, both atherosclerosis and in the brain (Alzheimer's). I am not sure why methionine was in the magnesium preparation the Romanian doctors used, but I am not going to take anay methionine. Magnesium is safe, however, and may help.
Reply to this
Thank you so much for that. I do not know if there is sludge or not. My gallbladder was full of sludge when they removed it. I am scared to go to Dr Cotton because I would hate for him to cut it when it didn't need it, like yours. Trust me if its going to happen it will happen to me!! Have you ever had an EUS does that show sludge in the ducts? I dont know who to go to or just deal with the pain everyday. We have a son who is Down Syndrome and 36 and his health is going down hill fast, seizures and stuff, and my Dad and ALS, I would love to feel at the top of my game for my looved ones, but I dont. But I have never felt as bad as you from this, only when my gallbladder was in. I am about a 6 on a scale from 1-10. I will try the Magnesium any other tests or doctors you might can think of. Everytime I here from you I receive a little hope. Thank you for taking the time for me!! Susan
Reply to this
Susan, I never had sludge seen on any imaging even though I had lots of it before my first sphincterotomy. If you have a level 6 pain all the time, you might well have sludge. If so, magnesium wouldn't help because the sludge has to get out. They can stretch the bile duct sphincter and remove it, but my understanding is that the duct soon gets clogged up again due to the narrow opening. It is very difficult to live with that much pain all the time. I had level 8 to 10 pain, but it was relatively brief. I've lived with level 6 pain for months at various times, and it is so wearying.
If EUS stands for "endoscopic ultrasound", I never had that. I had regular ultrasounds and MRIs with secretin. I never had one of these hida (?)scans, either. I was told the best imaging short of ERCP was the MRI with secretin. However, it seems to me to be a waste of time and money, as it doesn't show sludge. However, they all insist on it prior to doing an ERCP.
I do not know if all biliary surgeons automatically cut the pancreatic duct along with the bile duct nowadays, but I feel sure Dr. Cotton would. I feel like the pancreatic duct should be left alone if it is normal, because I did well for 15 years with only the bile duct sphincter cut.
So sorry about the troubles with your father's and son's health. Finding a good doctor is difficult. Duke is not like it used to be when it developed its top-rated reputation. I don't recommend it.
We are pretty much on our own with this condition. I feel angry because doctors should know by now what causes gallstones and how to prevent it. People who are at risk are simply allowed to develop the stones and then told to get the gallbladder removed with no thought given to the fact that 20-40% will continue to have pain for the rest of their lives. What is really bad about this condition is that narcotics usually make the bile duct hurt worse!
Reply to this
Hi there! I would be interested in knowing if there is anyone out there in New Zealand with SOD issues. I had my gallbladder removed 22 years ago - not laparoscopically - and no issues for 10 years when out of the blue had major pain attacks. No known cause. Thank God for pethidine, onlt thing that touches the pain for me. Anyway, have lived with it and 3-4 attcks a year ever since. Copeable with. Went to hospital for something unrelated and was given morhine in Oct 2009. This brought on massive pain attacks in pancreatic area. Since then have been in constant pain and last month had a double sphincterotomy. Hasn't worked yet!! Getting a bit down to it and would love to hear from anyone who has experienced something similar. Drs are doing their best but I am a bit rare apparently.
Reply to this
I go and see a new gastroenterologist soon who sees the most patients in the country for SOD. I am very excited because I might have an answer to my pain! I have been told this is all psychological and that maybe I need to go to a psych hospital. I put my foot down and let the docs know they were wrong and I insisted to get help for this. So, instead of waiting, I took matters into my own hands and found this amazing doctor. I couldn't be more thrilled. I will try to keep you all posted as to what happens. I'm a bit nervous about the possibility of getting and ERCP due to the risks. They are high. I know my new doctor will do what is best for me. We've already been in contact and he seems wonderful. So, wish me luck! And, thank you for this site..what an amazing husband you are!
Reply to this
Melissa I wish you luck. I too have been suffering for 4 years now. I am scheduled for March 16 and 17 for the ERCP. Who are you going to? I am going to Dr Peter Cotton in Charleston SC. I have been told he discovered the SOD..
Susan
Reply to this
Susan,
Actually, the man I'm seeing is named Evan Fogel, he works under Dr. Cotton on the nationwide study going on. It just happens to be that Dr. Fogels center sees more patients then anyone for SOD. I don't know, maybe there are more around here then most places!
I'm so sorry you have been suffering for so long!!! I hope you can get something resolved! My B-Day is March 16 so I will be thinking of you on that day!
BTW, I contacted Dr. Cotton to get Dr. Fogel's info.!
Reply to this
I wrote a post this morning and it doesn't appear on the blog. This is a test if this one will appear. I would love to join your discussions because I am dealing with the same problem. It would be nice to have a support group of people to share our experiences that could help.
Reply to this
Your test worked. Welcome
Reply to this
I made a longer post and it didn't print.I tried to post it many times, but it won't print. I will keep trying again.
Reply to this
I go back to my GI doctor after my pain doctor did a Celiac Plexis block to confim the origin of my pain. I have been luck because they have me on Oxycontin and Oxycodone IMM for breakthrough pain. While it helps after a while, it hurts when I first take it. I can't believe the Celiac Plexis block worked in stopping my pain for 7 hours. First time of no pain for 1.5 years.
I am thinking about going out to South Carolina to see Dr Cotton if this GI doctor still tells me it is in my head (which I am fairly certain he will)
I would love to know who has been to see him and if he was able to help. I have had two sphincterotomies that did not work and when I miss the time to take the pain meds, the pain comes back, so any relief I currently have is purely medicinal and temporary at best.
Thanks for your help. Also, if anyone knows of anyone in the Metro Denver area who is really good, I would greatly appreciate the referral.
Thanks again.
Sandra
Reply to this
Hi Sandra
I am going on March 16 and 17. The 16 will be an MRCP with a contrast called Secretin and then the 17th the ERCP. He is the expert in sphincters from what I have been told. World known. You can google him and see all kind of things he has accomplished. Nice guy. I have met him and will talk to you forever.
Susan
Reply to this
It looks my short letters made it, but the longer one where I am talking about my case, didn't. It was under 3000 words, so go figure. It said it goes for the moderation, but it never made it. Maybe more people have the same problem. I tried many, many times. Lets see if this one will make it.
Reply to this
I didn't see any pending replies. If it was a copy/paste perhaps it was something in the code?
Reply to this
I am getting the e-mails of your posts, but I don't see those posts printed on the blog. This is a test if this one goes through.
Reply to this
I am so glad I found this website. It is giving me hope that I might be able to find an answer to my troubles. I had my gall bladder removed June 17th, 2009 and have had issues like all of you have described ever since a week after. I've basically been eating chicken and rice for 6 months and still get sick. I have gone from diarrhea every day up to 16 times in one day to constipation and bleeding. I've been to 5 doctors and finally a doctor in NYC mentioned SOD. they haven't diagnosed it and they will probably refuse to do the surgery, but I'm still getting sick everyday. I have pain in my upper region plus diarrhea (when i'm eating) everyday. The pain is so bad I've now begun to find pain pills whereever I can and am trying to just live life. I got my bloodwork done last week and I'm hoping when I see the doctor in 2 weeks they will diagnose me with SOD. What should I ask the doctor? Should I get my SOD cut? Has it been successful? how long does it last? Do the antispasmodics work for you? How can I convince the doctor to do what is best?
Thank you so much for your help and hopefully I can find my answer soon too! Being 25 and dealing with this has really put a damper on living and this site has given me a little bit of hope.
Thanks!
Reply to this
I was hoping someone would answer you. I am new to this so I can't really give you any advice. I have been suffering for 4 years and have been diagnosed with SOD. I hope you don't have it. According to the web site and the Doctors it is not easily cured. The Doctor that discovered this and is known around the country is Peter Cotton in Charleston SC. I would travel to see him. He has trained a few other Doctors but according to my research he is the best. I am going to him probably in August. I know someone on the blog that just went and for now she is doing better. Keep writing on the blog . Someone will answer with more experience that I. I live in the Atlanta area and we have EMory and they want touch it!! So go somewhere that is experienced.
Reply to this
I am the one Susan is referring too. I had my my ERCP and sphincterotomy almost 3 weeks ago. I have had very little nausea and pain after the initial recovery. This can be a very frustrating disorder because of the pain and nausea involved. This was my second and will be my last time to get the sphincter cut. I do take antispasmodics at times and have found them to be sometimes effective and sometimes not. Now to your last question, I personnally don't feel like you should have to convince a doctor to do the right thing. I feel like they morally obligated to do the right thing and try their best to find out what is wrong with you. Find a new doctor if your current one doesn't take you seriously. Make yourself informed and they have to listen to you. Try not to get discouraged and I know that it is hard but hang in there. There are several support groups out there that are very informed. Actually, Pancreatitis_a ray of hope on yahoo is a very active chat group with a ton of very knowledgeable ladies that could maybe refer you to a MD in your area that is patient friendly. Hang in there and I will keep you in my prayers.
Reply to this
Thank you ladies so much! I did get diagnosed and I'm going to see Peter Cotton hopefully in August as well!! I found a doctor finally in NYC that was so helpful and told me exactly what you said. I just hope it works. I'm taking the leap. I have been exactly the same on the antispasmodics and percocet is the only thing I can take that makes me not care that my insides are dying...I will keep you guys informed of when I make my appt to see him...maybe we'll be roommates!! Thank you again!
Reply to this
Hi everyone! I am a newly diagnosed SOD type 3 as of about 2 weeks ago. I had my gall bladder removed June 17th, 2009 and have had non-stop problems like everyone else. Upper right quadrant pain, diarrhea, hospital visits, and negative tests up the wazoo. I am finally going to get the sphincterotomy done in the next 3 months by Dr. Peter Cotton. He is supposed to be world renowned and an expert in our little world. What is the recovery time of the surgery? How do you know if it works..is it almost automatic or does it take time? I am a little nervous to do so but with attacks almost 3-5 times a week lasting for almost 72 hours..i need some relief. Is anyone this bad? Are there any herbal supplements out there that help relax the muscle? I was so glad to find this site as well because it's been a really rocky year of this and I just love that there are other people that can sympathize. Everyone can say they feel bad and they understand...but you guys really do understand!!! Hope you are all well!!
Reply to this
Hi, I had the same problem last year like you and I had a sphincterectomy, but after that I got severe pancreatitis and spent 17 days in the hospital, I almost died. Ask Dr. Cotton, if he will put a pancreatic stent in while doing ERCP to prevent pancreatitis.My surgeon didn't do it. Also, if I had to do it over again, I would try amitriptyline first and as a last resort to do the sphincterectomy. The sphincterectomy helped me only for about 4 months and pains came back. Now I m on amitriptyline 50mg and the pains are tolerable, I can eat everything and don't have colic anymore. The non surgical treatment should be always tried first before the sphincterectomy with SOD3. There is no guarantee that the surgeries would help either. There are many of us on the blogs who had surgery and are still in pain.
I hope this goes through this time.
Reply to this
It's such a scary thing...and I just don't know what to do. I'm hoping when Dr. Cotton looks through my records that he will be able to tell me what kind of risk I'm taking. What is amitriptyline? Can a regular doctor prescribe it? What does it do? I will ask him if he can put a stent in to try and avoid pancreatitis. Thanks for your help!
Reply to this
Alexis, I first learned about Amitriptyline on this side. It is a tricyclic antidepressant, known about for 50 years. Lately it is used more for treatment of pains then depression. Lower doses help pain, especially neurogenic pain. In our case, I also believe it has ability to relax SO due to its anticholinergic activity. Unfortunately doctors don't know much about this disease. Some believe it is part of visceral hypersensitivity, when the nerves supplying digestive system go crazy and some people develop IBS, others tight SO, or others tight esophagus. Nobody knows why some people have one and not the other problem. The amitriptyline decreases nerve firing, hence calms the nerves that supply those organs. There are other medications people use successfully to control pains: Cymbalta, Lyrica, Gabapentin/Neurontin. Speak to your doctor about it. One good thing came from having the sphincterectomy and it was that my nausea, that was the most debilitating, stopped. Now I have to deal with pain. Thanks to the moderator here, I investigated about amitriptyline. It makes me angry that doctors, instead of trying the non surgical treatment first, recommend the surgery that carries risk of pancreatitis and doesn't guarantee anything. Let me know how you are doing. I am crossing my fingers for you. I spent weeks and weeks searching internet to find help and some answers. Peggy
Reply to this
I have SOD which I began dealing with 2007. I also had my gallbladder removed a couple years prior. I had 2 ERCP's, acute pancreatitis several times and was stinted twice. The treatment that finally worked for me was taking amitriptilyne or the brand name is Elavil. This has helped me tremendously! I don't take any pain medication. I occassionally take a Zofran for nausea if I ate something that upset my stomach but other than that I have been able to control it with this antidepressant. I know it sounds weird but my sister and 2 cousins (all of us within about 5 years of each other so the same generation) have GI problems and we all take the medication. I'm sure it doesn't work for everyone but coming from somebody who vomited for years in the morning and dealt with alot of GI troubles this has been a God send.
Reply to this
Hi Peggy,
Now I know what you are talking about! I had never heard of that before. yes I've been on Cymbalta (because we went through the whole IBS thing for months) 60 mg and my 4th doctor wanted me to go up to 120mg to try and treat the pain. It made absolutely no difference to be honest...besides the fact that I can't cry lol. Thems the breaks..I've been diagnosed with an anxiety disorder anyway so I'm sure that all my doctors went towards IBS first and kept trying to treat that. My 5th doctor said no way...it's not working...and so the surgery is pretty much my only option I guess at this point. I was nauseaus all last year before the gall bladder was removed...to the point where people thought I was pregnant (which I wasn't)..so maybe that was part of it. I just wish there was a quick fix and I'm scared to death I'm stuck like this. Especially since being 25 I would like to still have kids and I'm getting very scared that I'm going to be very sick during all the pregnancies. thank you so much for your thoughts and as soon as I get word from Dr. Cotton I will let you guys know. I actually gained a sense of community and understanding today knowing that you all are behind me and know exactly what I'm going through! Alexis
Reply to this
Alexis, you are not alone. It helps to speak to somebody who goes through the same thing, because this disorder is so rare, most people don't understand it. I also looked pregnant from bloating before my surgery, this is all gone now and the most important part is that it also helped the nausea. I am sure that Dr. Cotton will help you. I think you are in the best hands with him. After the procedure, stay close to the hospital for about one day. I was sent home, just to be back with pancreatitis one hour later. This is not so common, so don't let it discourage you. The doctor who did my surgery didn't probably know how to put the stent into my pancreatic duct and he wrote that he even couldn't finish ERCP. Why, he didn't say. Maybe he was rushing home for holidays. He didn't even come to visit me in the hospital. After I saw him, he said, there is nothing to help me if it comes back. I found the amitriptyline from this blog and it is helping. The pain relief is not full, but I can live with it now. Before that I was wiling to go through another ERCP, even risking my life. You have to try different medications, some work for some and not for others. You are so young to have this. Most of us are older. When is your surgery? You will be in my thoughts and prayers. Let me know how you are. Good luck. Peggy
P.S. I am glad that my posts are getting through now.
Reply to this
Hi Peggy, I should be scheduling my surgery this week. I am so sorry for everything you have gone through. It sounds so awful and I can only hope that mine will go smoothly. I wish people knew more and understood our disease a little bit more so that we could be taken care of. Even if we are a small population. I feel like we're fighting an uphill battle, I mean we're 1 % of the population...no one cares except the doctors that are like 5. I wish we could form some kind of larger group to help all the other out there..I mean I'm sure our stories aren't the only stories, but they are going to be tough to find.
At this point the pamine(antispasmodic) slows it so I don't have to go to the hospital every time...but the pain is bad and I'm afraid every time I eat. I hope that I even get the surger considering it is a study and they probably won't tell me. I'm scared that I wont get it and then 3 months later I'm going to have to bill it thorugh my insurance and have them do it again. It's a scary thought and I"m a little afraid of that thought. I don't think it's fair that we are all suffering and they can treat us like rats because we said yes to helping them gain research. But o well I guess no other choice. Thanks for being there and I feel like I have somewhere to bring my questions since you guys have been dealing with this longer than me. I just hope I don't have 75 years of this...and having kids should be a joy.
Hope you are well and feeling great! One day they will find something to help us all!
Alexis
Reply to this
Dear Alexis,
I can understand how you feel, because I am going through the same thing. I think you are in better hands then I was last year. Dr. Cotton is an expert on this disease. I had a bad luck and maybe a bad surgeon, who didn't do his job right. I will be thinking of you, let me know when is your surgery and how you feel after.
The problem with this disease also is that it affects mostly women. Maybe if more men had this disease, there would be already a cure for it. If we could make a study to find what connects all of us, we could maybe find a cure. I think there are many factors attributing to this disease. Stress is one of them, then it could be hormones or a genetic factor. I know that in my case when I had a high stress in my life the symptoms appeared. So I am hoping that amitriptyline could help me. We will see. I think everybody is little bit different and for everybody, something else works. It is a shame that so little is known about this disease and we are like guinea pigs to the doctors that are just experimenting on us to see what helps.
I wish you everything best and good luck with the surgery. Hugs,
Peggy
Reply to this
Still checkin in on you guys. As an update my wife is still doing fine but with the prescribed Amitriptyline. She has tapered her dosage to 25mg every other day. She tried to quit it but the pain came back within 5-6 days. When she takes the medication, she is fine, if she goes longer thatn 3 days, the pain/discomfort starts creeping back. We've accepted that this will be a life-long treatment and honestly, it's a small price to pay for her to be pain free. I'm sure much of you understand.
On a side-note, if anybody can donate any funds to keep thesphincerofoddi.com and this blog runnnig, please feel free to do so. Donations made here through this link.
http://www.thesphincterofoddi.com/donate.htm
Thanks and keep the faith!!
Reply to this
Just been diagonsed with SOD. Have crappy insurance so can't do all the tests. Right now taking anti spasmotic when an attack occurs. Attacks occur right now about twice a month. The one last night was a killer. I'm traveling over seas in three weeks - I can't not go, I'm the tour leader. What advice does anyone have to try to keep the attacks from occuring? thanks for any help.
Reply to this
Hi Jan,
I have attacks about 3 times a week so I know your pain. At this point the common triggers that I have seen are: empty stomach, too full a stomach, alcohol, sugary foods/drinks and fatty foods/drinks. They say if you try and avoid this stuff it will happen less often. The only thing I do when I have an attack is take percocet or benedryl and wait it out. Unfortunately once it starts its impossible to stop. I take pamine(antispasmodic) 3 times a day to try and help calm the muscles and that seems to make it a tiny bit less. And like Peggy said, an antianxiety helps the underlying tension of your muscles so that might be a good idea too. There is a clinical trial in 6 different locations that would be able to do all the surgery and stuff for you. It is paid for as long as you qualify for the study. You can look it up on www.clinicaltrials.gov I hope this will help. Good luck and we'll be thinking of ya!
Reply to this
Hello Jan,
sorry to hear about your diagnosis. If I was in your shoes, I would speak to the GP about Amitriptyline. I am very upset that the doctors didn't tell me about this medication before I had my healthy gallbladder taken out and they did ERCP which was complicated by dangerous acure pancreatitis. Amitriptyline stopped my colic and tremendously decreased my pains. I can eat almost everything. Before I started taking it, I had to only eat small amounts of foods or my pains intensified. Amitriptyline has side effects like dry mouth, drowsiness and sleepiness, but they get better over time. I started taking 25mg for one week and then I increased to 50mg. Now I am at 75mg and I have a good relief with that. I started taking it before a long weekend, because I knew that initially I will be drowsy and groggy and I won't be able to drive first few days. The symptoms got better over time. The side effects were worse the first week. I know that some people give up, because they don't like the side effects, but I had nothing else, so I didn't give up and I am thankful for that. I wish you good luck. This is my suggestion, maybe others have other things they can suggest. I know that people use different medication and everybody responds to something else. Let us know how are you doing and if you could travel. I used to be a tour co-ordinator and I loved that job and I miss it.
Reply to this
As an update, I've been in touch with Dr. Peter Cotton. He was kind enough to visit www.thesphincterofoddi.com and provide some information for the site. It has now been updated to reflect his suggestions. I'm also quite sure he visits the blog!!!!!!!!!!
Updates can be seen here:
http://www.thesphincterofoddi.com/faqs.htm
Thanks,
James
Reply to this
Hi Ladies,
Just wanted to let you guys know my appointment with Dr. Cotton is scheduled for June 22nd. I booked my flight and everything so I'm making my leap of faith and trying to get better!! Any words of wisdom, places to see, or what I should say to Dr. Cotton??
Thanks everyone!!
Reply to this
That's great news!! I'm certain you'll be seeing one of the best and most knowledgable in this field. Good luck and we'll pray for you.
Maybe ask him to plug the site for us and get it out there for other poor souls suffering with this disorder?
Reply to this
I can do that of course!! hopefully he will help us out! It's so nice to have other people around that know our pain and understand it more than anyone else can!
Reply to this
Thank you so much. My fiancee and I have been going through a similar situation with SOD... having someone for her to read about, talk with, etc., is a huge benefit to us both.
Reply to this
Hey everyone! I was just wondering if anyone else's SOD symptoms started after a major infection (ie mono)?
Reply to this
Hi When mine started my wbc was way up so the drs thought I maybe had some sort of infection but could never pinpoint it. I also developed thyroid problems at the same time.
Reply to this
Mine started about 6 months after I got cured from Instertitial cystitis. I had IC for two years and I was 9 months on Amoxicilyne and that cured it.
Reply to this
Just wanted to update on my situation. I had a bad attack where I was vomiting green bile and in extreme pain and went to er. They gave me dilaudid and my liver levels ALT and AST went to 400 and the Dilaudid made it worse. My dr then finally said probably SOD and told me to see Dr cotton. I was admitted for a few days. I saw Dr cotton after that right before Christmas. He did feel it was sphincter of oddi because of my high liver levels and my reactions to morphine after surgery. I was scheduled to have the ercp on my second day. The MRCP he did looked ok. I decided to opt out on the ercp and wait it out for a while longer since I just had my gallbladder out at the end of sept. He gave me hyomax to take if I wanted to try it. My diarrheah finally stopped around March or so and my attacks are less frequent and not as bad as before. I have maybe 2-3 a month and not severe. I have noticed that every time I get novacaine for a dental procedure I get an attack a few hours later but they have not been too unbearable. I mostly get attacks on an empty stomach in the morning. I can eat most things now which makes me so happy. I am going to postpone an ercp until I feel my attacks are at a point where it is not tolerable.
Reply to this
Cath ans Karen has any one of you tried taking Amitriptyline? I wrote about it earlier, it is saving my life and I was in your shoes not so long time ago. I can eat everything now, but in smaller and more frequent doses and my pains are almost gone. Again, I thank to the admistrator of this blog who wrote about his wife taking it. Last week, I saw my internist who said that I must have a great GP that she figured out to take Amitriptyline. I told her that it wasn't my GP, but I found out about it on a blog. No doctor would suggest this. One said there is nothing they can do. That was the surgeon, who botched up my ERCP and I got pacreatitis after. Then my GP didn't know what to give me, she said there is nothing that she knows about and if I find out what helps, it would help many of her patients. So there. Ladies, try Amitriptyline before you let them cut you.
Reply to this
Hi All, After reading your post about Elavil ....I've seen a few others mention this drug on other sites...just looking on wiki, it comes up...the reference sites a 2006 study.
Approved
Amitriptyline is approved for the treatment of major depression, as well as clinical/endogenous depression and also involutional melancholia or "depression of late life", which is no longer seen as a disease in its own right. Adult typical dosages are 25 to 150 mg daily, with half this dose initially for elderly or adolescent patients.
Amitriptyline is used in ankylosing spondylitis for pain relief and in some European countries it is officially approved as a preventive for patients with frequent/chronic migraines, usually 25 to 75 mg. It is also used as a preventive for patients with recurring biliary dyskinesia (sphincter of Oddi dysfunction), usually 10 mg daily[4].
My Boston surgeon says I was "fixed" and shouldn't be having problems. I recently had a capsule endoscopy which came back "normal". It's so frustrating! I'm now having pain after I eat in the upper left side in the back also in addition to the right side. I have really limited my diet to try to help this, but it is so frustrating when you feel like you are alone with know one helping you!
oh well....thanks for listening
Reply to this
Well, I am writing since today I met my sixth doctor while trying to find an end to this very frustrating condition. I was diagnosed with SOD type III a few weeks ago, but that doctor doesn't do ERCPs so I needed a new doctor. He did not really seem to believe me and I don't think he will help me unless my type III can be upgraded to type II. Anyone else had experiences like this? I am really tired of these stupid attacks, I have them 2-4 times a week and everything about them follow the rome II criteria for SOD. Feeling a little let down here!
Reply to this
Hi all. I wrote something on here yesterday and several weeks ago and my messages don't seem to be going through..but, I do believe it was an operator error..still, I'm sorry that you guys didn't know I was thinking of you and that I had responses for you!
Anyway, Maryanne, I am so sorry. You are living my nightmare. I was worried I would also be diagnosed with Type III but I was diagnosed with Type II and now, doc wants to check for chronic pancreatitis but I don't want him to right now...don't want him to mess with the pancreas because it landed me in the hospital last time!
Anyway, the reason I am writing is to tell you that although I can't solve this problem for you, or take it away, I want you to know that I am thinking of you and you are in my heart. All of you are. I feel like we are an unspoken family. No one else knows how we feel except for each other. It is such a unique and special bond. Does anyone else feel that way? So, Maryanne, just know that you have people who care and keep searching for the doctor that WILL do the ERCP, and, do it well.
Melissa
Reply to this
I am wondering what everyone does during attacks? What methods of relief are out there?
Reply to this
SOD III I am wondering if this problem ever simply goes away, it seems some of this can be related to a hypersensitive ibs issue. Does anyone know of certain exercises that can help? I can get some relief by wearing tight spandex "girding up the right side" anyone else? Could a nicked nerve from previous EGD cause this? Mine is said to be be "billiary pain"....from? HELP
Reply to this
As previouslt described, my pain is almost constant, esp when I eat. I had an EOS and there were no stones of any type and I have my gallbladder. I also wonder if I had the gallbladder removed would it help? But from reading this blog, this is where most of your problem comes from.
Reply to this
I have found that laying flat on the floor with my arms above my head is about the only thing that will make it bearable. Just keeping my breathing low and staying calm for about 4-12 hours until it calms down. I take 325 mg of percocet every 4 hours that helps take the edge off. And I've tried benedryl (it sedates me but does nothing), heatin pad helps sometimes when it's not that bad and at night, and a hot tub helps a little too.
Reply to this
I have type III Spinchter of Odi and have not made it to Charleston yet because our son is so sick, down syndrome having lots of seizures.Anyway if you haven't tried Xifaxian its an antibiotic it is wonderful and works better than any pain killer. You might still fill a twitch here and there but I can eat just about anything I want for about three to four months after 10 days of this antibiotic. It is not absorbed into your blood stream , so you can't be allergic. Its wonderful--much relief. Its called reflaximine, xifaxian is the generic. Any gastro doctors will give you samples its expensive if you dont have insurance. $240.00 for the regimine. Doctor Cotton if the best in Charleston google him.
Reply to this
Regarding this antibiotic......I read that it is for diareah? Does taking this antibiotic make you constipated in anyway? That would make this problem that much more painful. How did you hear about this antibiotic? Thanks for your help. Also, do you know what your common bile duct measurement was?
Reply to this
It is for diarreah also TB. Cedar Sinai Hospital in California discovered it. It does not make you constipated at all. I also take a capful everyday of my life of Miralax . Mark Pimethal discoverd this antibotic for IBS patients. Usually bacteria is involved. When I have my attacks it is said it is because the bile ducts are backing up and then that can cause infection. The antibiotic stops the pain almost immediately for me. I am a Type III, SOD
I havent had my bile ducts measured yet. I cant go to Charleston yet because our son is so ill. This antibiotic is not absorbed in your blood stram, no yeast infections, no allergic reactions--Just no pain and I can eat even a hamburger and fries !! Whoo hoo!! I hope it will work for you. I ususally have to take it about 4 times a year to survice. Gallbladder was removed 4 years ago.
Reply to this
Thanks for the tip. It seems to me that the prevailing problem here with this SOD is that most folks HAVE had their gall bladder removed? And thats what kicks up this horrible problem? I have not had mine removed.
Reply to this
Hi Susan, just picked up the Xifaxan, he prescribed 200mg --take 2 three times a day?
Am a bit concerned about constipation but if it works I'm all for it.
Reply to this
I will pray it works for you. It is a temporary fix, but I will say my attacks are about three a year now. I feel pain in my side everyday, but I can tolerate it most of the time. That is the correct dosage. You take it for 10-14 days. Don't worry you cant be allergic. No side effects. Take Miralax a capful a day if your are constipated. Prayers for you!!
Reply to this
Thanks, I'm still on the side that this whole dang thing IS a bad bacterial infection, which is why this would work. Since I do still have a healthy gall bladder and no bile duct dialation, I cannot see how it could be this horrific SOD thing. We'll see! Here's hoping, and I'll keep you informed!!!!!! Thanks so much for your kind help and imput
Reply to this
Thank you for these 2 tips and I will try the antibiotic. I'm in Scottsdale and have dealt with this "thing" for a year now. Tucson performs the ERCP but I guess I won't be doing it. I am SOD III I presume since his diagnosis was "billairy pain" and every thing else looked normal during the EOS.The doctor will do the ERCP but I can't see the point since he said the warranty is not good, only lasts for 3 months or so. I'm just very curious as to how people develop this horrific problem (the ones who have not had their gall bladder out) which is me. I keep remembering an egd that was performed on me one year ago and I slapped the Dr's arm 3x's while he was taking gut samples. (arms were not tied down) I came home and that afternoon and it felt like a dull knife was being pulled downward in the right side of my stomach but then it was over. So I also wonder if having my gall bladder out would help? I will try the antibiotic. Any other exercise suggestions or meds or food tips will be highly appreciated. Thank you all, reading this blog does help very much and I appreciate it.
Reply to this
Hi Suzanne, I am one of those people who had a healthy gallbladder taken out. I don't regret it, because I would always wonder if it is not my gallbladder or SO. I had HIDA test and it came negative. I had MRCP,CT...everything negative. Occasionally my liver and pancreatic enzymes were elevated. Last month I had another MRCP and it showed there could be divisum of my pancreatic duct. It is something we are born with, that is why I am surprised it didn't show on my previous tests. Once my healthy gallbladder came out, there was no more reservoir of bile and my pains and nausea got much worse. One moth after that I had ERCP with sphincterectomy and got very severe pancreatitis after that, that almost killed me. The effect of the sphincterectomy lasted about 4 moths. I had no pain and, spasm, and no nausea. I ate anything and felt great. In about 4 months, my pains and spasms came back. The pains were exactly the same as you describe, it felt like somebody put a knife through my right upper abdomen. Thanks to God, my nausea didn't come back. To make the story short, I am taking amitriptyline 75 mg now and have almost no pain, no spasms and I can eat anything. I can say, I am coming back to life. I know of many others from the blogs that had many ERCP's and sphincterectomies, with only short relief and more scar tissues. Since it is so little known about this, it is good to be part of support blogs where we can all share our experience and support each other. You have to try different things and see what works for you. I wrote about the amitriptyline in my previous posts so I won't repeat myself.
In terms of exercising, I do very gentle yoga, anything strenuous causes more pain. I love gentle stretches, breathing exercises and relaxation. No sit ups of "core strengthening", that will cause more pains. Good luck and let us know how are you doing. Peggy
Reply to this
Thanks for the reply Peggy. I was just wondering about the gall bladder, but clearly it wouldn't help me to have a good organ removed right? The med you speak of is an anitdepressant? I understand you on the heavy exercise, it does seem to make things worse, oddly. Since this started the only thing I have found to help is .5 mg of xanex (smooth muscle relaxer) but have you tried this antibiotic xifaxian mentioned on this blog? I'm up for that. I just can't get my mind around WHY this has happened....I don't get it.And I don't see the point to the ERCP where they cut the muscle if this only last a short time. How horrible is this. Would losing weight help this? I'll do anything. But, it sounds to me like there is no "cure". Does this antidepressant you take have side effects? Weight gain and such? I appreciate your imput. Suzanne
Reply to this
It is my belief that this was caused by a simple EGD one year ago. I came home and had the knife ripping thru me for about 5 minutes then it went away. But I developed this hideous problem about 3 weeks after that procedure. That's what I believe.
Reply to this
Peggy, when did your problem start? Just one day you started with the knife like pain in your rib cage? There has to be a reason, I should think...
Reply to this
Hi Suzanne, Amitriptyline is the tricyclic antidepressant that in lower doses is used for treatment of pains and in higher doses for depression. I think that this drug has higher potential then doctors think. In our case of SO, it relaxes smooth muscles, decreases pains, it decreases the bad prostaglandins that cause spasms in SO and cause inflammation. It also has antihistamine effect. I figured that later after I was wondering why didn't I had allergy this spring. In my dose 75mg, I am experiencing very little anxiety or panic attacks and no depression. Before I started taking it, I suffered panic attacks because every time my pains got very bad, I got terrified. This disease causes very high stress, anxiety and depressions from feeling as not being in control of our health and feeling of desperation. The surgeon who did my sphincterectomy told me there is nothing that would help. How mistaken he was. Amitriptyline calms the oversensitive nerves hence decreasing the spasms. It is a miracle drug. It is also used for fibromyalgia. It helps me sleep. I no longer have to take XANAX, I used to take it before, but once I went on 75mg of amitriptyline, I didn't have to take one pill of Xanax. This drug is over 50 years old and recently it is used more and more for pain. Because the side effects include drowsiness (only about 5 weeks once you start taking it), some people get discouraged too early and stop taking it. The only side effects that we may not like is dry mouth, which is not all the time, only when I speak too much. I take fruit or candy and that helps. It makes me eat more and I crave sweets. I don't think the drug causes weight gain, it is the craving that makes us eat more. If we can control how much we eat, the weight should be under control. To tell you the truth, I would rather be fat then in pain. Before I started this drug, I was already giving up that there would be anything to help me. I didn't try the antibiotic you mentioned, however you can take amitriptyline for years on, without getting resistant to it or having to increase the dose. I wouldn't want to be on antibiotics for very long, your body becomes resistant to them after certain time and also, they would cause yeast infection. I don't want to say not to use it, because if there is nothing else that helps, then I would try anything.
I am trying to find out what we all have in common, there must be something that connects us, because when we find this, we will be able to cure it.
I don't know what your doctor thinks about the HIDA test to see how your gallbladder is working before you would consider to have it removed. Mine worked fine, I had this problem before and worse after my gallblader came out.
My problem started in 2008, during Christmas time, I ate fatty food and I was going through lots of stress. The pains were worse in the afternoon and evening and I woke up with no pains.
Reply to this
Suzanne, I always had that nagging pain in my RUQ after it started. Sometimes less, sometimes it felt like stabbing. Only when I lay in my back, or when I slept, it was better. At work, I have to walk and bend a lot, so about in 3 to 4 hours into a work day, my mid back muscles went to spasm, in addition to my right abdomen and rib cage pain. It feels like a pinch at first and it got worse about half hour after I ate or as day went by. Sometimes it hurt more, sometimes less. Yesterday was my first day at work without pain or spasms thanks to amitriptyline.
Reply to this
Yes, exactly. What was your common bile duct measurement? That seems to be the rule of thumb for a true SOD patient. It's suppose to be 11 to 12+. Mine is 7 so I keep hoping SOD is not the problem but clearly "billiary PAIN" is just the same, so?
Reply to this
Peggy, oddly when I eat fatty/rich foods I will have diarrea? Which will relive the knife-like pain (for a while)This doesn't seem to be a symptom from all the others on this blog, am I right?
Reply to this
I sometimes find that this is true. It depends on which came first if that makes sense. Sometimes diarrhea ends the attack. I have been getting alot of "IBS" like pains and then diarrhea instead of an attack when I eat fatty/rich foods.
Reply to this
The only biliary duct measurement I got was on CT during my pancreatitis. It was 14mm. That is high. Recently on MRCP, they didn't say what the measurement was, they said it was normal. Before the ERCP and before my gallbladder was removed. , my ducts were of normal size. I was told that after gallbladder is gone, the biliary ducts will get bigger because there won't be anymore the reservoir of bile, that releases the bile only after meals and as the bile keeps going, it will dilate the biliary ducts. This is the cause for worsening of pains if the problems is caused by SO. The bile keeps going and no longer it is kept in the gallbladder if needed after meals. If SO is tight, the bile is backing up back to the liver or the pancreatic enzymes to the pancreas, because SO is not opening the way it should. That causes the increase of the enzymes in the blood test.
Reply to this
I had diarrhea before my sphincterectomy too. That is a sign that the bile and enzymes are not breaking foods. IBS causes diarrhea too, but I don't think that IBS would cause pain in the right upper quadrant.
Reply to this
Thanks for the reply. All my blood work and Hida Scan was normal and common bile duct @7. I guess I am still hoping it is not SOD but all the symptoms are a perfect match. Sharp knife life pain in ribcage and nagging pain underneath right breast bone area. Unbelievable. Thank you again for your help and imput
Reply to this
Hi there
I am struggling with my 2nd attack of SOD and was recently diagnosed as type 2. I wonder does anyone else get pain under the LEFT ribcage as well?
Reply to this
I get a little pain on the left. I think that sometimes everything gets inflamed when you are having attacks.
Reply to this
also, does anyone have any idea who is the best doctor to see here in the UK?
Reply to this
I have my MRCP on Tuesday in S.C. and my ERCP on Wednesady with Dr. Cotton. Anyone know the recovery time or is it different for everyone depending on what he finds and if it works? My liver enzymes showed movement about a month ago (they doubled to 80) so my doctor in NY was very hopeful and excited to see Dr. Cotton at work
Reply to this
Alexis,
Your recovery time can depend on what he does and if you get pancreatitis or not. He explained to me there is a chance of getting a mild case and you would be in the hospital a few days or you could get a more severe case and be in the hospital a few weeks. Some people have no pancreatitis and are sore for a few weeks after ercp. There is really no answer since it is individual. I decided not to take the risk on ercp since I wanted to wait for a while to see if mine would settle down and the Sod could be tolerable. I had liver enzymes at 400 alt/ast a few weeks before I came to see him, constant diarrheah and attacks. I had gallbladder surgery only 4 months or so before seeing him. It has now settled to minor attacks and little diarrheah.
Reply to this
Could anyone tell me how long the Amitriptyline akes to start working I have been taking it for 3 days now with no positive results the doctor has only given me 10mg strengh is this any good. Cath Turner
Reply to this
I started taking 10mg of Imipramine (same sort of drug) about 2 weeks ago and still not had any relief - I think they like to increase the dose gradually thoug because of drowsiness etc
Reply to this
It was a pleasure writing to you too, Suzanne. Let me know how are you doing and what you have tried. Best of luck to you, Peggy
Reply to this
I made a nice long post to Cath about amitriptyline and it wouldn't post. I tried so many times yesterday. Something must be wrong, why sometimes it wouldn't post and othertime, there is no problem.
Just briefly. Cath, 10mg is a very low dose, I started on 25mg one week later 50 and now 75. This dose works for me the best. Taking it only 3 days is not enough time to see the benefits. Right now, you see more side effects then the good effects. Give it about 8 weeks before you would give up. This medication saved my life.
Reply to this
Bless you Peggy for staying in touch even though your SOD is unde control! I have recently doubled my Imipramine from 10mg to 20mg and am feeling very sleepy - did this happen with you and did it wear off after a while? Do you mind me asking if you have suffered with anxiety and if you think this may have contributed, as I think this is the case with me and am hoping the imiprimine will help with this also.
Reply to this
I am curious as to whether I really HAVE SOD III. Since the common bile duct is at 7...... could billiary pain be from something else? Stones and gall bladder problems have been eliminated. I'm going to try the xifaxian and hope it "could" be chronic bacterial infection...any thoughts?
Reply to this
Hi Alex. Is Imipramine the same thing like Amitriptyline? If so, then it works on anxiety, panic attacks and depression as well. I used to have anxiety and panic attacks from this disease. Who wouldn't? You feel out of control about your health and nobody seem to have answer what to do. Since I went on Amitriptyline, I didn't have one panic attack. The higher doses are for depression, the lower doses for pain. I found my dose to be medium and it works well for both, the pain and the anxiety. Maybe one day I will be able to lower the dose, but right now, I enjoy not to be anxious and pains are very much lessened. I was told that 75mg is the maximum dose for pain, after that, it won't make a difference. The effect accumulate over time too. Good luck. Keep in touch.
Reply to this
Alexis, I forgot to tell you that the sleepiness is normal at the beginning. It will last about 5 to 6 weeks and then it will go away. Don't give up on it, it is worth it. Like I said before, the side effects are stronger then the effects at the beginning. It will reverse later. The only side effect that will stay is the dry mouth, but even that is not all the time. What causes dry mouth also relaxes the SO, so it is worth.
Reply to this
Peggy thank you soo much for such a helpful response- it isreally nice toknow thatsomeone else has been through this and found a satisfactory result - so much of what you read is negative / horror stories! Imiprimine is the same as Amitryptaline I think, they are both Tryciclic antidepressants, but Imiprimine is supposed to make you less sleepy. Thankyou so much for your input Peggy, bless your heart x
Reply to this
Alex, you are most welcome. I am happy when I can share what helped me. I am not cured yet, but this is start. When I had bad pains and spasms, I also used peppermint essential oil. I put it over the painful area or spasm and it gave me some relief. It is safe to put 100% essential peppermint oil on your skin. Peppermint, believe it or not, helps to relax the SO and muscles. I tried it (in gel capsules) taking by mouth, but it aggravated my stomach acidity, so I stopped. I hope you will start feeling results soon. What dose of Imiprimine is suggested for SOD? Amitriptyline in Wikipedia says that for biliary dyskinesia it is 10mg, but for me, it wouldn't be much of help at that dose.
Keep in touch, Alex. I find tat it is therapeutic to know that there are other as we are. At the beginning I didn't know anybody who would have this disease and thanks to the internet, we can see that we are not alone and we can share our experiences.
http://www.rain-tree.com/hortela.htm
Reply to this
Peggy,
I probably asked you this before, but did you try Xifaxin (the antibiotic)?
I'm going to try everything before I'll except that I actually have this SOD III
Thanks, Suzanne
Reply to this
Suzanne, I don't know Xifaxin. The first time I heard about it was a few days back when somebody mentioned it on this blog. I read it is an antibiotic used to treat colon infection or travelers' diarrhea caused by E-coli. I tried to look it up with SOD connection, but I couldn't find anything. I agree, we have to try everything possible to help ourselves, I used many things too. Nobody has answers how to treat it, so we have to take it into our own hands and see what will help by trial and error and hope that something will work. Remember that we all are the same, but everybody can be little bit different, so what works for one, doesn't have to work for others. There was time when I felt there is nothing more I can try. I couldn't take nitrates, my blood pressure is already low and Ca blockers didn't help. Antispasmodics didn't work either. I am on amitriptyline now and I am testing my limits in how much I can eat and how much I can do, etc...Good luck if you will try the Xifaxin and let us know if it worked. Peggy
Reply to this
Thanks Peggy and thank you for the link, that is really interesting about peppermint and I will certainly give it a go - I have drunk peppermint tea before but suspect the oil content in that is pretty low. I was already taking 10mg of imipramine to treat muscle spasm in my back following 2 slipped discs 18months ago and it also helps with my Chronic Fatigue Syndrome symptoms a bit as well so my doctor thought it would be sensible to try increasing the dose of this first. I don't think there is a suggested dose, trial and error seems to be the way. Do you ever get to have a glass of wine on the dose you are taking?
Reply to this
Alex, I don't drink any alcohol at all. Since my problems started a few years back, I stopped even one glass of wine. My doctor said after I healed from the pancreatitis that I can take a small drink, but I never did.
Reply to this
I just wanted to post that I did finally get approved to get and ERCP! I am a bit worried and am wondering if people who have had them before could shed some light on post operative symptoms, what can I expect? Thanks!
Reply to this
Hi Mab,
I just had mine 5 days ago. There is about an 8-12 % chance you can get pancreatitus depending on age and health. You are not allowed to have anything by mouth for about 24 hours after to allow your body time to heal a bit. They let you have pain meds about every 4 hours and the pain isn't that awful. You will be sore for a few weeks after and a low fat diet is required. Expect that your energy will be low for the first few weeks because anesthesia takes awhile to get out of your system. The pain is def. different then before and I had dirrhea the first time I ate out of the hospital. They only kept me overnight and made me have some liquids before I left to make sure the system worked.
I'm part of the EPISOD study so I have no idea what they did and if it will work. So i can't tell ya if it's different depending on what you get done.
I know Dr. Cotton has a less than 2% rate of pancreatitis and he's awesome. I liked him alot.
HOpefully this helped you and I will continue to post to let you ladies know my progress!!
Alexis
Reply to this
Hi Alexis, I am glad you have already had ERCP. How are you feeling? Are you part of the study where they compare a sphincterectomy only and sphincterectomy with the pancreatic duct stent? Are they studying if the sphincterectomy with the pancreatic stent has a lesser incidence of the post ERCP pancreatitis?
Reply to this
Hi Peggy,
I am feeling good. Very sore and such but the pain is just surgery pain, I haven't felt SOD pain yet. I am part of the EPISOD study looking at the effects of sphincterotomy of either the pancreatic duct, biliary duct, or both or a placebo of just a stent. They are trying to see if the manometry is indicative of whether or not to do a sphincterotomy and whether a sphincterotomy actually works.
Reply to this
Hi Alexis, that is great that you don't have the sphincter pain. Finally somebody is looking into a study what works and what doesn't. I guess they would tell you after the surgery if you had a stent or not, because they have to make sure it came out by doing X-Ray. Keep in touch. It surprised me when you described that they kept you in the hospital for a day for observation. That is great. When I was in the hospital for the ERCP, that butcher who did my surgery, sent me home immediately I woke up and I was back an hour later with fully blown acute pancratitis. This surgeon was very negligent, he didn't even come to say hello after and during my 17 days in the hospital he didn't even care to visit.
Reply to this
I have just had an appointment with my consultant, who has advised he intends to do an MRCP with Secretin, to get a more definate diagnosis as heis not at all keen ondoing an ERCP due to risk of pancreatitis - has anyone had this or know about this? Is it safe? thanks
Reply to this
Doctor Cotton in Charleston South Carolina usually does the MRI's with secretin. No side effects at all.
Reply to this
I had the MRCP with secretin and ERCP and they were both safe. I had diarrhea after the MRCP and normal surgery recovery after ERCP.
Reply to this
I had it twice and it is safe.
Reply to this
Thanks Alexis
did you find thatthe MRCP with secretin was in anyway helpful? My consultant has scared me off the ERCP as he says there is a 40% chance of pancreatitis and that the chances are higher if you are younger (I am 35). He is considering the MRCP as a safer alternative in a way.
Reply to this
Hi Alex,
I never saw the results of my MRCP because it was just saying that I had no blockages etc. So I can't help that way. I'm 25, they told me the rate was 8-12 % for us "younger" people. Dr. Cotton's rate is below 2 % for ERCP. I understand what you doctr is saying, it is a real concern, but you have to decide if it's worth the risk. DO NOT go to a doctor that has not done alot ofthem. If anything look on the medical university of south carolina website for digestive disease center and talk to april wood williams or julie akers and ask them who dr. cotton would reccommend in the UK. DO NOT go to just any doctor because your chances of pancreatitis goes way up. There are not alot of doctors that are specialized in our area and will do it and you will end up very sick. Please call them and find out where to go. Your success may be based on where you go. MRCP can't diagnose SOD type 3 that well and they can't do any type of sphincterotomy. This is all going to come down to whether you can deal with the pain or not. I can't so I had to take the cahnce.
Reply to this
thanks Alexis, thats really helpful - the support on this site means so much to me as this feels like a very lonely journey! I already have chronic back pain, chronic fatigue syndrome and anxiety so am feeling a little overwhelmed with managing symptoms particularly when they are all invisible. best wishes to you x
Reply to this
Alex, many people with SOD also have Fibromyalgia. It is normal to have anxiety, because we have pain that nobody can diagnose properly and doesn't know how to treat it. We feel like we are out of control over our body.
Reply to this
First, has anyone had any experience with Dr. Shah of University Hospital in Colorado? I am having an ERCP with him at the end of the month. I think he is pretty experienced but I am still worried!
Second, What can I expect during my post operative recovery? I cannot find anything on it and I am wondering how long it will be before I am up and active again, provided everything goes good!
Thanks everyone!
Reply to this
I hate to be writing this right now but I'm on the floor in an attack. So as of right now my ERCP is looking like it has left me in a similar state. Nit sure if the parameters yet but being 25 and stuck with this is really depressing right this second.
Reply to this
Alexis,did your doctor put a stent in the pancreatic duct? If so, is it the one that should come out by itself? I am sorry to hear about your attack, since you just had ERCP, call the surgeon ASAP.
Reply to this
Hi! Yes he did put a stent in the pancreatic duct. He said it comes out within 3-4 weeks and I have to have an X-ray done if I don't see it pass (which I'm a little concerned I may miss it) just to ensure it comes out. Yes I am going to call my Doctor in NY this morning and tell them about the attack. I, of course, tested a little early and had some beer to enjoy the 4th of July. So I am wondering whether that may have triggered it. Also I am part of the EPISOD study so I have no idea what they did. My new goal is that if I have 3 attacks (while being extremely strict with low fat, no alcohol, no trigger eating etc) by the end of July I was thinking of pulling out of the study and going back to Dr. Cotton to do the full sphincterotomy if it wasn't already done. What does anyone think?
Reply to this
I think that would be pretty fair. best of luck xx
Reply to this
Alexis, you should call the surgeon and tell him about your pains and ask if it is normal. Sometimes the stent can cause problems and they have to take it sooner out. I didn't have stent during my ERCP and maybe that attributed to my pancreatitis.
Reply to this
I was wondering how many of you with SOD also have been told you have a hiateral hernia? I am wondering if there might be a correlation with some of the symptoms. Thanks
Dee
Reply to this
I have an hitial hernia. They didnt tell me there was any connection. I have had it for 30 years and SOD for 4 years.
Reply to this
My son has SOD and is having a terrible time. He has a hiatial hernia and I am wondering about any connection to his symtoms as he has some symtoms that my mom has with the hernia. He has lost so much weight and has episodes of passing out and the terrible pain. He has ERCP done twice. The first time they put the hole in the sphincter muscle and tried to put a stent in the pancreatic duct but were unable to do that and he had total relief for about 3 weeks (after throwing up about a gallon of bile, bright green) then the pain returned and they did another ERCP in which they stretched the opening to the sphincter muscle and put in a stint. He got pancreatitis both times and was very sick. The second procedure has not worked and he cannot find any particular food that bothers him other than caffenated drinks. Dr. Syed Jaffrey from KC did his procedure.
Thanks to all of you who blog as this helps a lot. We are so worried because of his weight loss. This disease or disorder affects the entire family.
Reply to this
Hello Denise, there is nothing worse then to see your child in pain and not to be able to help him. I haven't heared about connection between hernia and SOD. I know how the pancreatitis from ERCP feels. From what I read I know that there are two best doctors who specialize in SOD, Dr. Cotton from SC and Dr. Freeman from University of Minnesota. These doctors are the experts on this problem. Since these doctors are the experts on SO, they also have very low incidence of post ERCP pancreatitis. From other blogs I know that people fly to see these doctors from all over. How old is your son? Has he tried any medication such as Amitriptyline or Cymbalta or Neurontin? If he is under 21, they don't recommend taking some of these medications, because in teenagers, there is be increased rate of suicides. I am on Amitriptyline and swear by it. It is not a cure, but it lowers my pains to minimum and it allows me to eat without pain after. Let us know how is your son doing. I hope that somebody will be able to help him. Peggy
Reply to this
Peggy,
Thanks for writing. He just turned 37 and has been on some anti depressents but not amitriptolene. He got off because of the side effects. He is down to 112 lbs from 134 and we are afraid we might lose him if we can't find anything to try. Has anyone had the camera pill done? We are wanting him to try that and see if it shows anything about the digestion process. His abdomen is very tender and he is having episodes of pain after just about every meal.
Reply to this
No I haven't heard any mention of hiatushernia. I started taking a high dose of magnesium about a week ago and today noticed a reductionin my pain - not sure if its a fluke, but will keep everyone posted.
Reply to this
Well, I am wondering how often people have their attacks. Lately, I seem to be having problems daily, every little thing seems to trigger attacks and I am so tired!!! I am just 3 weeks away from my ERCP, but I am feeling so isolated and frustrated!!! Plus, the side effects from the meds I am taking are making me feel sick!
PS: Yes, I have a hiental hernia too! Not thinking there is a connection, but it is very interesting.
Reply to this
Hi Mary, sorry you aren't doing well...what symptoms are you having? and what meds? Are you on Zofran? Where are you having the ERCP?
I had my ERCP w/sphinc last October...I have periods where I'm doing pretty well and then periods where I'm not. I had terrible nausea before the ERCP and then it was gone after...but recently it has returned again and driving me CRAZY...this is such a frustrating condition and my surgeon says the cut usually lasts 2 years!! only 2 years and then what..have it again?!?!
Hang in there I hope you get relief from the ERCP
laura
Reply to this
Laura,
I am currently taking Zofran, Persocet or Vicoden and Dicyclomene for attacks (almost everyday!). This combo does help take down the pain and nausea but I feel so yucky from it. My ERCP is on July 29th by Dr. Shah of University Hopsitial. I am praying it helps, I don't know what I will do if it doesn't.
I cannot believe that you already have symptoms! This is very frustrating! What are you going to do? When your surgeon said 2 years, does he mean that every 2 years you will need to do this? I know there is only so many places to cut!
Thanks you writing me back, its so nice to talk to someone else who understands!
Mary
Reply to this
Mary--Hang in there..I live with mine everyday. Who is doing your ERCP?? I havent had one yet.Doctor Cotton will do mine when ever I can go. You are not isolated. I am sick everyday. Pain under my rib cage out my back, pain in my chest, sometimes lower stomach, rumbling growling,I am exhausted as well. Then sometimes I have an attack where I bend double and feel like I am having a gallbladder attack. Its been gone for 4 years. It makes you tired. Have your Doctor check your B-12 and vitamin D. It depletes those vitamins and others as well. I take a B-12 once a month now. What are your symptoms??
Eat a bland diet-baked everything, no spices, no oil, butter, no fried, not much fiber. I hope this helps you!!
Susan
Reply to this
Susan,
My symptoms are very similar, usually starting early in the morning with a feeling like I have a big rock stuck in my upper right abdomen. Within an hour or so I start to have waves of pain and nausea and lately it has been everyday. I am so tired I have finally had to ask my family to take care of my children (ages 2 and 4) when my husband isn't home because I can't do it anymore
Mary
Reply to this
I am so sorry. How far are you from Charleston South Carolina. Dr Peter Cotton is the founder of SOD.. Could you go there. He has a 2% pancreatic occurance. He is the best and that is what you deserve. Also try Bentyl its a antispam medication or reflaximine the stomach antibiotic seems to help me. I will pray for you.
Reply to this
I am actually in Colorado and South Carolina is a bit far for me! I am not actually sure but I think the Doctor who will be doing the procedure for me is pretty good, he is the director of pancreaticobiliary endoscopy at university hospital. Plus he seemed to know his stuff when I met with him which was pretty nice since the first GI I met with thought I had just pulled a muscle in my abdomen and told me to take 2 weeks off!!!
If you don't mind me asking, how have you lived with this for 4 years? I have had it for 7 months and feeling like I am dying, at this point it is ruining my life. I have to spend most of my days sitting in a ball downstairs either of mind numbing meds or in pain. I can't imagine doing it for so long, you must be a saint! Thank you so much for the prayers, I am praying for you too.
Reply to this
Mary-I hurt like you the first year. But I guess I am use to it now. I don't hurt like that anymore. Just occasionally. I hurt everyday though, but not bad enough for pain meds. I have a high pain tolerance. When I hurt like you and ball up in pain I take an antibiotic reflaxamine. It saves my life. It is not absorbed into your blood stream. It is wonderful. Please keep me posted on your ERCP. I have had a pretty bad attack this week myself and think I am going to schedule mine soon. I am 53 and I have several fibroid tumors-that I have had for years and sometimes I wonder if a hysterectomy might just make it better! I know young girls that hurt like this and have surgery done for like endometriosis and then they get well!!I dont know.. I hate it. I am sorry you are hurting so bad!!My prayers are with you. It has changed my life as well.
Reply to this
Annonymous, I would really like toknow more about the antibiotic you are taking. I have googled it, but I only get hits for a natural anti acid called reflUxamine. Doyou know if it has another name? bless you xx
Reply to this
It is called rifaximin you have to take two three times a day and for 10 to 14 days. When you read about it -it is for diarrhea which I never have. Dr Mark Pimental from California discovered it and he works at Cedar Sinai Hospital. He had a thing on U tube about this a woman bent over in severe pain. You cant be allergic to it because it doesn't go into your blood stream.It stops my pain instantly. Usually when we have these attacks its because our fluids are not flowing through out ducts correctly and our sphincter muscle isn't working correctly causing bacteria to back up into our liver, stomach and pancreas. The antibiotic is great for me. I hope it would work for you.
Reply to this
Thankyou so kindly- I will discuss this with my consultant. Best wishes xx
Reply to this
Does anyone else use Rifaximin to help with their SOD?
Reply to this
I don't believe I have SOD, don't meet the requirements, etc. still have gall bladder & CBD is 7...but before this good news I took this med and believe it or not it did stop the pain, oddly it caused pretty bad diareaa?? but what the heck, it stopped the pain. I can reccommend it. SUzanne
Reply to this
I have been doing some research online and have discovered that Eostrogen may have something to do with causing SOD as it slows down the motility of the Sphincter of Oddi. I have taken a high Eostrogen based contraceptive pill for 10 years now due to having Polycystic Ovaries. I have also noticed a definate monthly pattern to my pain levels. Does anyone else find thatthese things may be relevant in their case? I WILL find an answer to this xxx.
Reply to this
What does the pattern look like? Are you having attacks before, during or after periods? I have noticed a similar pattern and research shows that women are more prone to SOD. I am researching this now as well!
Reply to this
I havent paid attention to it. It is almost my time I guess-I am 53 so its sometime twice a month. I also have fibroid tumors and possible endometriosis. This is very interesting!! Please let me know if you find out anything. Anybody !!
Reply to this
I have been reading about this online. I think there is a connection with hormones. Every month the week before my period I have attacks and wake up in the morning with that knawing feeling that will turn into a full blown attack unless I eat right then. My attacks then get better a few days after my period and I am fine again until the next month. I may have one small attack in between but the worse are before my period
Reply to this
Here's an update for my fellow SODers. I have been in an attack of sorts since Thursday at 9pm. Not sure from what, or what I did or did not do, but it hurts. It's a different pain than it was before the ERCP. Sharper and confined to just my upper right. But man it's lasted a long time and it hurts. I got bloodwork done on Friday to test my liver enzymes. Is this looking normal after an ERCP? Do you think it will continue? Am I getting dangerously close to a second ERCP? Will this ever stop? I am just sick of being sick...and I am tired of complaining. And I know you guys understand. So any advice would be helpful. I am seeing Dr. Cohen in NYC next Wednesday to discuss what's up.
Reply to this
i HAVEN'T found a correlation to estrogen therapy....have you had your gall bladder taken out? What is the measurement of your common bile duct? Try SOFT GEL capsules of Magneseum, it does help......good luck. This is a very weird problem, I do not believe I have it nor do the Docs, thankfully,...still have my gall bladder which seems to be a criteria and my CBD measures 7...take care and try the magneseum soft gel capsules....I like it and it surely can't hurt you.
Suzanne
Reply to this
I read about it too. There is no doubt in my mind that the hormonal imbalances have effect on tightening the SO. Too much estrogen and low progesterone will tighten SO.
Reply to this
Alexis, I am sorry to hear that you are still in pain. Do you still have the stent in? If the pain is different from the one before the ERCP, have you spoken to your doctor/surgeon about it? My thoughts on it would be that there is something wrong with the stent, or that you may have pancreatitis. In pacreatitis case you amylase and lipase levels would be high. Call your doctor tomorrow, he should already have the results. I hope you feel better soon. Let us know how are you doing. Peggy
Reply to this
Thanks Suzanne - I too still have my Gallbladder as they couldn't find any stones or sludge. I haven't had my pressure taken yet as the doc is not keen to do anything invasive and we are tryingto exhaust everything else first. I am due to have an MRCP with Secretin next week - this was my suggestion and he thought it was a good one. I am already taking 450mg ofMagnesium citrate since about 2 or 3 weeks ago - my nutritionist reccomended them and I do think they are helping a bit. I have definately noticed a cyclical pattern to the pain and will discuss the Eostrogen theory with my doc next time I see him. God bless you all xx
Reply to this
Can anyone direct me to any web sites that link hormones and Sphincter of Oddi? Or female problems that may cause this? I can't find any. Thank you for your help.
Reply to this
For those who are interested in this, I have found research that connects SO function with Thyroxine (Hormone produced by the Thyroid) as well as progesterone. Both of these have a pro-relaxing effect on the SO therefore it is theorized that a lack of either or both could be a problem for the SO. It is a good connection for why attacks may fluctuate around periods and a good reminder to make sure your thyroid is behaving
"Of the steroid hormones, only progesterone nonspecifically
ameliorates SO contractions ex vivo. Because the effect of thyroxine on the SO is prorelaxing,
the lack of thyroxine may result in an increased tension of the SO."
The research is:
Inkinen, J.et al. (2001). Direct effect of thyroxine on pig sphincter of Oddi contractility. Digestive Diseases And Sciences, 46(1), 182-186.
Reply to this
Also, I found another study directly linking Progesterone and bile motility problems:
"The effects of progesterone on the sphincter of Oddi and the gallbladder may contribute to the greater prevalence of gallstones and biliary motility disorders among women."
Tierney, S., Nakeeb, A., Wong, O., Lipsett, P., Sostre, S., Pitt, H., et al. (1999). Progesterone alters biliary flow dynamics. Annals Of Surgery, 229(2), 205-209.
Reply to this
My pattern seems to be settling into a once per month atack around a wek to 10 days prior to my period and it lasts for a few days solid. I was put on Dianette contraceptive pill about 10 years ago for PCOS and it is a very high, eostrogen only pill. I googles about it and there was a study on Prarie dogs which showed very convincing evidence - I am going to follow this up as I really feel Iam on to something - apparentlymore progesterone can relax the SO, so am going to discuss with my GP switching pill.
Reply to this
Same article I read. I am not on the pill but perhaps my body makes a lot of estrogen. I also noticed I get heart palpitations the week before my period as well.
Reply to this
I am looking for the article about estrogen and progesteron effect on SO.
Meanwhile, here is an interesting article talking about prostaglandins and endometriosis. Maybe many of you had painful periods, fibroids or endometriosis. I found that there are many kinds of prostaglandins. One of them are the "bad" ones causing painful periods, fibroids, inflammation and also they tighten SO. There is a possibility that those of us who had painful periods or fibroids or those who suffer endometriosis may have a high levels of those bad prostaglandins. The "good" prostaglandins help to relax SO.
Here is the link:
http://www.endo-resolved.com/prostaglandins.html
Reply to this
Yes that is also true in my case. I have had drs at duke twice try to get me to have lap surgery for endo since they were sure I had it. I also have thyroid issues. I have hyperthyroid.
Reply to this
The flow of bile and pancreatic secretions through the Sphincter of Oddi is primarily a matter of 1) the size of the sphincter opening, and 2) the fluidity of the secretions. If the sphincter is constricted, flow is decreased. Progesterone (and not estrogen, testosterone, thyroid, or insulin) causes a relaxation of the sphincter, thus increasing bile flow. Thus, people with estrogen dominance (relative progesterone deficiency) are more likely to have a constricted Sphincter of Oddi. Perhaps that’s why so many women tell me their digestion is so much better after they correct their estrogen dominance with progesterone supplementation.
The flow of bile and pancreatic secretions through the Sphincter of Oddi is primarily a matter of 1) the size of the sphincter opening, and 2) the fluidity of the secretions. If the sphincter is constricted, flow is decreased. Progesterone (and not estrogen, testosterone, thyroid, or insulin) causes a relaxation of the sphincter, thus increasing bile flow. Thus, people with estrogen dominance (relative progesterone deficiency) are more likely to have a constricted Sphincter of Oddi. Perhaps that’s why so many women tell me their digestion is so much better after they correct their estrogen dominance with progesterone supplementation.
http://www.virginiahopkinstestkits.com/gallbladder.html
Reply to this
Thats really great Peggy - I am going to follow this up with my GP. I sufferedfrom extremely painful periods since my late teens - was finally diagnosed with PCOS in my early twenties and put on a very high eostrogen only pill to control the symptoms.I am now 35. xx
Reply to this
I don't have any issues or patterns with my period. It just happens any ol' time. Maybe it happens more during menopause...I am only on birth control pill and not any other type of hormonal treatment...
Reply to this
Alexis whattype of birth control pill is it? Some have really high levels of eostrogen x
Reply to this
Progesterone alters biliary flow dynamics.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1191632/pdf/annsurg00002-0057.pdf
Reply to this
Peggy, read this article ref. Progesterone. I still don't understand it. Are they saying that Progesterone will aid the flow of bile or compromise it?
Suzanne
Reply to this
I'm confused now myself - I thought Eostrogen was the baddie and Progesterone the goodie hhmm
Reply to this
Thanks to all of you who participated with all the great information on hormones and SOD..Great knowledge.
Reply to this
If I understand this article well, the progesterone slows down gallbladder emptying and slows down the flow of bile. It does however help to relax sphincter of Oddi.
Progesterone is contraindicated in liver disease and can cause cholestatic jaundice and liver function test abnormalities. I remember, at school we learned that all hormones work in balance. Imagine a scale: If there is too much of one, there is not enough of another. Any hormonal treatment should be done under medical supervision.
Reply to this
Hello Denise, I am so sorry to hear about your son's troubles. I am not sure if the test you are describing is the Endoscopic ultrasound? That is when they put a small camera to the duodenum and visualize the whole anatomy. I am booked for this test too. I was told that the test is safe and there is no risk of getting acute pancreatitis. This test will not diagnose SOD, it can only see the ducts, or stones/crystals in them and it can diagnose chronic pancreatitis.
I know of many people from the blogs who are on Amitriptyline for SOD and it helps their pains. It also helps people to gain weight. Speak to your son's doctor about it, because it looks like this medication is the best for our problems. Not all antidepressants work on pain, especially the new ones. Amitriptyline belongs to the group of old Tricyclic antidepressants. The initial side effects exceed the benefits, but in a few weeks the benefits take over and the side effects diminish. That's why people shouldn't get discouraged by the initial side effects and wouldn't quit until they try it for a few weeks. You may want to discuss this with his doctor. You have to try anything to help him. I am wishing to you and to him my best. Peggy
Reply to this
Hey guys! so i'm out of the study. I was in the hospital Saturday and I've had enough pain. I should be scheduling surgery soon.
I read a new study that I saw on the digestive disease center at MUSC. Anyone heard of duloxetine? They are running an open label trial of it. any thoughts?
Reply to this
Hi - my gastroenterologist thinks I have SOD. Just wondered - my attacks are unpredictable (every few months last, only one this year so far) - but have presented either as kidney infections (micro blood in urine which disappears in the lab work), frequent urination, pain in right side etc. Or they start as an IBS attack, with gradually increasing diarrhoea, but more nausea than usual, then the pain strikes.
Gall bladder removed 1997.
Interestingly, I take Duloxetine for depression, and thyroxine. Wonder if the attacks coincide with times I'm not careful about taking them?
Would be really interested to know re the urinary symptoms in particular. No burning or pain on urination - just frequency.
Thanks!
Reply to this
Patricia, my wife had some bladder issues after her hystorectomy. She actually had fluid treatments of a couple of months post op.
Not sure this helps but thought I'd mention it.
God Speed to everybody.
Reply to this
I need some help ASAP Please!!!!
Well about 3 1/2 weeks ago, I have by ERCP complete with the SOM and the operation. I was officially diagnosed with SOD type II and the beginnings of chronic pancreatitis. Because of the procedure I did get acute pancreatitis which lasted for about 5 days although my levels are not all the way down yet.
Although I am aware that some post operitive pain will remain for even a month or more I am getting very concerned. This pain I am having today is really bad and about 20 minutes ago I had what I am pretty sure was a big spasm in the SO. I am very worried that the procedure didn't work. Does anyone have any idea what I should do?! I am really upset here! Has anyone had the procedure not work (I don't me a relapse)? Or am I just being impatient?
Thanks
Maryanne
Reply to this
I am sorry to here about your issues with the ercp . I would call back and see what the doctor recommends.
What did they see to diagnose you with early cp? How long have you had attacks and how often? Was your pain primarily on the right or left as well?
I have been putting off an ercp until my attacks are more than a couple times a month but it does worry me not knowing if I could be developing cp.
Reply to this
Hi Maryanne. I know your pain. I had an ERCP about a month and a half ago by dr cotton. I am part of the episod study. They said that some pain and even an attack are normal up to 6 months. After my 4th attack and a fever they concluded that the surgery didn't work and I'm going back for my 2nd ERCP on weds in s.c by dr cotton again. Relax and keep good notes. If you have an attack go get bloodwork done so they have evidence. You know your body. Keep up your faith. It will work
Reply to this
Well, I did end up going to the hospital and it was an attack. I don't know if this means the procedure was unsuccessful or not. I was never told that I could still have attacks up to 6 months. My doc just said up to 2 weeks. Everyday I have pain, although it isn't exactly like the attack pain, its almost worse. Everyday, al the time. I meet with the doctor next month for a follow up. I am pretty scared since he did say that if I still have pain he might put a stent up into my bile duct (which is small/thin). Since the first procedure gave me bad pancreatitis, I am less than eager to try again, although give the current situation i don't think I have much of a choice.
I am so sorry that your procedure didn't work, believe me when I say I know just had devastating that can be. You are in my prayers and I hope this second one does the trick. Good Luck!!!
Reply to this
Alexis, talk to me! What did they mean when they said it didn't work? When I asked my Doctor if maybe it just didn't work (ie needed a second ERCP) he said no, there shouldn't be a problem with the sphincter at this point. How are you doing at this point?
Reply to this
Hi MaryAnne,
So I'm part of the EPISOD study. I had the chance to recieve either a placebo, half, or the full double sphincterotomy (of both the bile and pancreatic duct.) Since the study is double blind, I don't know what I recieved. After 5-6 attacks and a hospital visit, they concluded that I had not gotten considerably better and that my treatment (whatever that was) was a failure. When I went back to Dr. Cotton in August, he then had Dr. Rumonguolo look me over and decided as a blind observer if I was a treatment failure. After that I was crossed over into the full double sphincterotomy group that I recieved in August. At this point my recovery has been EXTREMELY slow. I am getting better each and every day in new ways, but I still have rectal bleeding, constipation, diarrhea, and pain. Its just better than it ever was. I have not had an attack yet since the surgery and really don't feel as if I might. At this point, last night was the first night I felt real pain and I couldn't tell how much was my sphincter and how much was gas bubbles that were stuck around it. So...we go on each day and figure it out!! it is sooo tricky and confusing...My doctor did say that he could use botox if and only if I had not had the sphincterotomy (or a single sphincterotomy of the bile or pancreatic duct)...what else? What have you had done? What's ur meds? There's a study out of MUSC that is for cymbalta-type med that could help with pain.
Reply to this
Ahh, I see. So far, I have tried meds (dicycolmene for anti spaz) and I have had the procedure which I enjoyed the pancreatisis after! I am currently using the Fentanal patch, some percocet for break through pain, zofran and promethazine for nausea. The patch is helping a bit, keeping the levels of pain down but I would give anything to be drug free! Its kind of hard to do any of the studies since they all seem to take place in the East and I am here in Colorado! I bet you didn't get the sphincterotomy, you were too sick after. I understand how you feel, though. I am so sorry about everything you have, I know its terrible and I really hope it is getting better!
Reply to this
I have had some recent success with, of all things, an anticonvulsant Topimax. While it does not take the pain completely away, I am down from taking approximately 120mg of Oxi ER and 60mg IMM with little to no relief plus 1 week guaranteed a month in bed home, I miss no work at all and am involved in my life with my kids and husband. I am still tired and fall asleep almost every night at 9pm, but that just could be that I have 4 kids and a business and a life!!. Plus, I am down to 30 mg of Oxi ER and nothing else. I am very interested in this information about the Progesterone (sp?) as I virtually produce none, and am going to look into it, but wanted to quickly share this with you. I am in CO and after 2 years of multiple procedures, hospital visits, attacks monthly, surgeries, ERCPs, etc and NOTHING worked, this is such a relief that I felt that I needed to share just in case it might work for someone else. Best of luck and I will let you all know if anything else happens. Thank you all for your continued support. It is so vital!!!!
Reply to this
Where in CO? Who was your Doctor for your procedures? Were you at University Hospital? Your the first person in CO I have heard from! How often were you experiencing pain?
Maryanne
Reply to this
I live in the Denver area. I just started going to dr shah but he has not really done anything other than mentioned the possibility of anticonvulsants. And I will say as I looked back I noticed you have a history of female issues as do I. I am going to very quickly contact my dr to see about the connection between a low progesterone and elevated sod manometry readings. I did the research and it is out there and bothersome that none of my doctors ever asked me about this.
Reply to this
Reply to this
Well, yesterday I met with my Doctor who determined that my procedure didn't work. He is now planing on inserting a stint into my bile duct but I didn't think he seemed too confident about it helping
Reply to this
Maryanne, I cannot believe they did not stent you to begin with! They did for my wife and one passed, the Panc duct had to be removed.
DO not give up or lose hope. If this Dr. calls it quits on you, keep looking.
Reply to this
OMG - I cannot believe after all this time I have only just found this site; and only because I thought I would see if my latest consultant is doing the right thing prescribing me Amitriptyline!! Hurrah!!! it looks like he might be. Thank goodness I am also not the only Type III - Today was the last day I was going to accept any more tests that would always come back 'inconclusive'. But luckily I appear to have hit the jackpot and actually seem to have a doctor who knows what he is talking about - he took me straight off the morphine that I had been put on, which was probably making matters worse as well as leaving me so nauseaus I couldn't get on day to day; and has put me on a 4 week trial of the Amitriptyline (together with something to control reflux); in 4 weeks he is going to reasses and use other 'tricks up his sleeve'. But this has all taken 10 years!!!!! I have not had the symptoms constantly for 10 years, I tend to have them for a few months, then go a couple of years pain free, before the next set starts. Each time we have gone through the same old routine "oh its gallstones, lets scan.. oh no thats clear...lets take bloods... suggest you just take pain killers and waste 3 months of your life not being able to function.. oh and can you keep a diary...- yes, have one for the last 9 years and 6 months, wanna look!"!!! Am still on a bit of a high that I might actually be nearing the end of my journey, and that I am being taken seriously. Yayyy!! Will let you know how I get on - thanks for you blog spot though and hope everyone else is doing well :o)
Reply to this
I am hoping that this will work for you
Reply to this
Welcome to the club Jo. There are many of us suffering the same way like you do. I didn't know about the miracles of Amitriptyline until I saw it mentioned on this side. It lets me live a normal life with SOD. Let us know how are you doing. Peggy
Reply to this
I really hope the Amitriptyline works for you, the doctor try me on this a few months ago, it did take the edge off the pain but I felt like a zombie and boy did my poor husband get it from the aggressive moods. I feel like this will never end. Like you mine attacks used to come and go, but after the surgeon decided he'd inject the SOD with Botox on 14th May 2010 I have been in constant pain, he then thought he'd try a steriod injection into my chest because the pain had extended to the outside area around my ribs (more pain) that didn't work either.
When will someone help us!!
Reply to this
Hi Everyone,
Well it's been a little over a month since I got the "real" ERCP sphincterotomy. This recovery has been alot more difficult, painful, and different. I have been having more trouble eating foods- getting diarrhea, painful cramps etc. and taking pain meds everyday because I am so sore!! It seems that as I got through the day I get more sore...my thought is that the bile going through the open wounds is just starting to wear on my nerves over the course of the day.
2 questions:
1) did you find that getting nauseas started about a month in? For the past 3 or 4 days I have been sooo nauseas and it's not like I'm going to puke nauseas but just uncomfortable painful nausea.
2) How many months did it take before you truly felt better?
Good news I haven't had any dibilitating attacks!!! so far so good...just pain everyday and nausea...guess it could be worse..
I'm just living day by day, minute by minute and trying to be normal a little bit more...How is everyone? any new and exciting news?
Alexis
Reply to this
An interesting fact I found out today. If you recieve a biliary sphincterotomy you will most likely end up with acid reflux in your duct and tracking from the stomach to the intestines because you have free flowing bile. Good to know when you've been nauseas for a week and no other doctor on earth knows anything about this disease. Ladies and Gentleman with this disease...please only talk to people who know what they are doing or have access to a doctor who knows SOD...cuz otherwise they are not going to be able to help you.
I'm done with my rant for the day. Love you guys
Reply to this
Well everyone, last Thursday I went in for my second procedure, designed to put a stent into the common bile duct. When my Doctor went in, on a whim he decided to check out my pancreas and no one here will ever believe what he found!!!
7 cms of stent left over from my previous procedure had broken off during stent removal stayed in my pancreas!!!!! While my doctor doesn't believe that this is was has caused my continued pain its amazing! Therefore, the procedure I went in for 2 hours out patient ended up in a 5 day hospital stay!
Reply to this
Maryanne,
Hi it's Sandra from Denver. Did Dr. Shah do this or is this a new Dr? The meds are still working to keep the pain down at a more managable level, but it is still there. And, lately, I have not been able to eat much without food going right through me. I have lost 20 pounds and 2 sizes (of which I needed to lose none of it). My clothes are falling off of me, I am afraid to eat, I have a pounding headache from not eating, and I am in more pain from not eating, but I don't know what to do...
I am afraid to go back to Dr. Shah because I am afraid of what he will tell me. I feel stuck. How did they decide to check for that, and I wonder about that because they did a stint my first time and I have never had the pain go away since the first sphincterotomy...but I just feel like I am grasping at staws.
Any feedback is much appreciated. Thank you.
Sandra
Reply to this
Sandra,
Dr. Shah did my procedure but he wasn't the one who left the stent in, that was one of the other doctors. I totally understand how you feel, I am stuck too. I don't know if this procedure will actually help, but Dr. Shah didn't seem too hopeful. What did he say when you first met with him? Did he have any ideas because after my ERCP didn't work he seemed kind of resigned. I am on so many drugs and I am so weak after all these months I was really expecting more. I too have lost about 20 lbs to this condition.
Believe me when I say I know how you feel. I am hoping the second procedure this December will be more productive than the last ones because I am just not sure how much more I can take!
Reply to this
7 cms of stent left over from my previous procedure had broken off during stent removal stayed in my pancreas!!!!! While my doctor doesn't believe that this is was has caused my continued pain its amazing! Therefore, the procedure I went in for 2 hours out patient ended up in a 5 day hospital stay!
Reply to this
Maryanne, WOW, I can't believe that they would leave the stent in the pancreas! Didn't they take an X-Ray? How are you feeling now? Is the pain gone after they took it out? I hope you are feeling better now.
Reply to this
The stent removal was done very quickly in a last minute idea on the days I was leaving in August. You should have seen my Doctor's face (who didn't do the removal) when I woke up!! Recovery is long and hard but I am feeling better. I really hope this does the trick!
Reply to this
Sandra, Don't be afraid to ask any questions that come to your mind. Knowing what is wrong is always better then fighting an unknown enemy. From other blogs I know that there are two Drs who specialize in SOD. Dr. Freeman and Dr. Cotton, if you feel that your doctor is not helping you, go to one of these two. I heard only good things about these two doctors.
http://www.med.umn.edu/gi/faculty/hcmc/freeman/home.html
http://clinicaldepartments.musc.edu/medicine/divisions/gi/faculty/cotton.htm
Reply to this
Hello. I am 34 years old and a newly diagnosed SOD patient. My problem started over 6 months ago when I would wake up in the middle of the night with stabbing pains in the RUQ. They would come and go so I thought nothing of it. I had started eating alot of cheese (cream cheese, ricotta cheese, etc) most was fat free but my symptoms seem to get worse. My DR ordered a US and Hida Scan and it showed no stones but my GB was only functioning at 12%. The decision was made to have my GB removed. Wished I would have seen a GI doc first however I didn't and once the GB was removed, about a week later I ended up in the ER with severe pain and nausea. After bloodwork twice, the second showed my liver enzymes were over 1500. I was in the hospital for a day and a half and the GI doc came to see me and said I have SOD. I too have been placed on Pamalor which makes me feel like a zombie. Today is day 6 on the meds. The worst part about this disorder in my opionon is that there is no concrete diet options. Everything I read says low fat but any bit of fat seems to bother me...some worse than others. I have lost 10 lbs but can't really afford to lose much more than 15. I have noticed that white rice and white bread seem to be my friends. Chicken doesn't really bother me thankfully but I have also developed IBS with this so I can't have any beans, etc. Yesterday I tried soy milk (about a cup with some Rice Krispix cereal) and while it didn't send me over to oblivian, the pain was there. Anyone have any diet suggestions? There should be a SOD cookbook out there
Reply to this
Hi Jennifer-Sorry to hear about your diagnosis. I have lived with it for 4 years now. There is a web site www.helpforibs.com 1-866-640-4942 they have cookbooks etc. After reading the blog you will see the top in this disease is Dr Peter Cotton in Charleston SC at MUSC hospital. Its worth the drive, he has helped several people. Prayers and hugs to you! Susan
Reply to this
Susan,
Thank you for your prayers and hugs! They are much needed. I just ordered the IBS cookbook about 4 days ago so hopefully it get's here soon! I have spoken to my husband about Dr Cotton as well as my GI doctor(my husband is a Family Practice Doc) and he has stated that it's always best to try the conservative route first so that's what I'm trying. I've been told that unless I keep getting attacks then it's best not to have any procedures. Guess I just have to take the new diet one day at a time. Makes me sad because I was trying to concieve and now that's been put on hold.
Prayers and hugs to you as well!
Jennifer
Reply to this
Hi everyone,
Just wanted to update you. I am finally off percocet!! yay!! and I'm actually starting to feel better today. No pain in my URQ and just some extra burning from my acid reflux. Saw my doctor in NYC and he has put me on protronix for acid reflux in the morning and Pepcid AC at night. Anyone have anything that worked better? Because by the afternoon I am having some residual burning. He also said that my bacteria in my bowel is overgrowing so I'm antibiotics for 2 weeks and we're replacing it with florastor. Anyone on a different probiotic? Lastly he wants me to go on Ellivil for my IBS and to sleep better at night. Has anyone had the combination of Ellivil and Cymbalta? Is there a better medication to help with the residual pain and also IBS-D???
Lastly, the best part, I have no had an attack since my surgery August 25th!!!!!!!! the second ERCP by Dr. Cotton worked well and besides the diet and some residual pain I really have felt better! How is everyone else? Any updates?
Reply to this
Alexis, I am happy that you are feeling better. It was a painful road to recovery. Elavil is another name for Amitriptyline. .Both, amitrptyline and Cymbalta are are used to SOD/ pain. They are both antidepressants. Amitriptyline/Elavil(serotonine and norepinephrine reuptake inhibitor) is the the older Tricyclic anitidepressant and Cymbalta is a newer, selective serotonin and norepinephrine reuptake inhibitor (SSNRIs). I would check with your doctor and also the Pharmacist if it is safe to take them together, because they both act on serotonine and norepinephrine and I would worry that in combination they would multiply their effect. I have heard of people taking Amitriptyline and Neurontin(the anticonvulsant drug) together, but not Cymbalta and Amitriptyline.
I am taking Amitriptyline together with Rabeprazole (the proton pump inhibitor, to reduce the stomach acid) and this combination works very well for me. I am now on 75mgs of Amitriptyline and it controls pains well.
Reply to this
well done you - it is great to hear someone finally getting some good news! xx
Reply to this
Hi. Does anyone know if pregnancy can make SOD worse? I was diagnosed with it around September 30th after a trip to the ER and elevated liver enzymes (over 1500). I had my gallbladder removed on September 24th. I am 34 and trying to start a family. I haven't had another attack since then and am following a very strict diet. I have pain but it's a level 4 (manageable). I cannot find any information on the internet.
Thanks!
Reply to this
Jennifer, I would suggest you to contact by e-mail either Dr.Cotton or Dr. Freeman. They are the SOD experts and they know the best if the pregnancy would make SOD worse.
Reply to this
Jennifer my doc told me that the hormones that are released towards the end of pregnancy sometimes cure it! You release strongmuscle relaxing hormones to prepare for the birth and anything that relaxes muscles eases SOD. Ialso find my pain is always worse around ovulation, so no being pregnant I think would be good!
Reply to this
Hi Guys,
Dr. Cotton said that for pregnancy they don't know enough. He said that each person is different and that it can be worse it can be better. I read a blog online (which I don't suggest doing) that a women was in intensive care because of high liver enzymes during her last like 20 weeks of pregnancy. I've also read that some people have had children and been perfectly fine.
I am planning to start trying for a family in May regardless of the side effects. Dr. Cotton said the best thing we can do is try and see what happens.
Couple of questions:
I had my first attack after 7 weeks after 2nd ERCP on Tuesday. Its definitely a different type of pain but it still hurts enough that I need pain meds to sleep and to stand up for longer than 2 mins.
In fact, I'm having an attack now I believe...the pain circles around a 7, but as you guys know our pain threshold is so high I can't really compare it to before because I can tolerate it.
I have such a limited diet right now (mostly starches and only chicken), i'm wondering what I should add in. I've tried carrots and romaine lettuce and both made the pain alot worse (coincidentally i took a long walk on both those days)...any suggestions on something I can add in food wise that I shouldn't have a problem with?
Has exercise caused anyone else's SOD to go crazy? How did you combat this?
My doctor in NYC suggested acupuncture. Anyone seen positive effects for this?
Lastly (I know I"m the question master lately), meds.
I started the amitriptyline on thursday. It has made me extremely tired. Anyone else seen this side effect? When can I feel the effects of the 25mg on the pain? What does it do to your pain?
Oh! also, has anyone noticed that when you eat you have about a 20 minute hiatus of pain for digestion?
Anyway, I'm hoping you are all well.
<3 you all
Reply to this
For eating, My Doctor recommended Ensure to make sure I was getting all the nutrients I needed but the stuff doesn't taste that good so I started mixing it up with some ice cream (make a milk shake). This was an idea my grandma's doc recommended when she couldn't eat much. This has done wonders for me, I was losing a lot of weight and was very sick from the lack of food. I recommend the Ensure Plus (chocolate) mixed with a lower fat ice cream (I do french silk King soopers brand). Let it melt and then mix it really good and drink. Its been very easy on my stomach and my SO and has allowed me to gin back some of my old self!
Reply to this
Hello Alexis,
I am glad you spoke to Dr. Cotton about pregnancy and SOD. I would also try to speak to somebody about pregnancy and safety of Amitriptyline on fetus during pregnancy, just to be sure. I was told that the pain decreasing effects can be going on for 9 months after starting Amitriptyline and then they plateau. I can verify this, because I am on it for 6 months and I can feel that the pain is decreasing even now. I used to have spasms between my shoulder blades and those are also improving, or very minimal. I am not dieting now, I don't have to. I can eat almost everything now. Everybody is different and everybody responds to Ami differently. Be patient with Amitrptyline. Right now, you will feel more side effects then the good effects. In about 3 weeks, it will reverse. Don't give it up too soon. It is normal to feel very sleepy initially. Later on, it will get better. Take it about 1 to 2 hours before you go to sleep. The pain effects of Amitriptyline increase until 75 mgs a day, then the effects are more for depression. It is recommended to increase the dose gradually. No sooner then in a week. I am on 75mgs, because I weigh more. I don't feel any pain in my SO area, only as I said, between my shoulder blades and that is only sometimes. This medication is a miracle and it allows me to live a normal life and eat what ever I want. I gained about 30 lbs since I started taking it. That is one undesirable effect that goes along with it, but that is a prize I pay. I rather be fat then in pain. Every time I increased the dosage, my pains were lessened and now I hardly have them. From other blogs I read that people tried to go off Ami and the pains came back. I don't want to do it now, I want to enjoy it. It also abolished my anxieties that came along with the pain.
I found that I had to quit my member ship in the gym. The yoga, or pilates or any abdominal strengthening didn't agree with SOD. The spasms got worse and once I had flair up for 2 weeks. Now, I found a gentle yoga helps and I tolerate it well. By gentle yoga I mean gentle stretching, relaxation and breathing exercises.
About diet. I used to eat very small portions and only certain foods too. If I wanted to add something new, I ate only a small amount and I was waiting what it will do to me. If nothing happened, the next time I could take more. However, sometimes I ate the same thing and nothing happened and some other time, the same thing made me sick.
Everybody is different. There is no rule that works for everybody. In medicines, foods or activities. You have to try for yourself and it is a trial and error.I found out that taking digestive enzymes right after my meals helped to digest it. Now, I don't need enzymes. Today I ate hamburger, yesterday sausage and I was fine. Without enzymes. I don't think it would work without Amitrpyline. Don't stop taking it, just because it makes you sleepy. Take it 1 to 2 hours before going to bed. Good luck, Peggy
Reply to this
Hi all, it has been at least 6 months since I've posted anything. Since then, I've been diagnosed not only with SOD but also chronic pancreatitis. Needing a second opinion, I went to the Mayo Clinic a few weeks ago. Their standpoint is that SOD is controversial at best, they don't feel it exists and said my doctor is wrong, I do not have Chronic Pancreatitis (they DID test me thoroughly). Their thought is that I have a Motility disorder of the stomach. Specifically Gastroparesis or Functional Dyspepsia. I encourage all of you to research these because it is exactly what I have and without the Mayo knowing so much, I would have known nothing and would have continued down a fruitless path of suffering. I go back soon for the final testing for this (stomach emptying test) and then go from there on whatever treatment they see fit. Good luck to all of you!
Melissa
Reply to this
Melissa this is really interesting and I am so pleased for you. I have never felt completely comfortable with my diagnosis of SOD, but have had extensive tests, including MRCP with secretin. I wonder what your symptoms are and how the illness first manifested?
Reply to this
Alexis,
I am able to eat veggie burgers. I get them at Sam's club (Boca Burger) I believe.
Good luck with pregnancy! It's such a scary thing. My husband spoke with Dr Cotton as well and not sure how we are going to deal with it.
Take care!
Jen
Reply to this
I was diagnosed with IBS ten years ago and then I had some elevated lipase and amylase levels a couple of years ago and then I was mostly fine for two years. All of a sudden, this past January, I got sick in a way I've never been sick before. REALLY nauseated, lethargic, weak and in GREAT pain. I'd rather have ten large babies then suffer that pain (and I have had a large baby...piece of cake). I also had an ERCP and sphictorotomy with stent placement this past April. I came down with pancreatitis right away and then the stent was taken out and my pancreatitis got better. Well, I didn't though. The doctors really felt there was something else wrong and I had an endoscopic ultrasound that showed some signs of pancreas damage, but, though not a lot of damage, I was still diagnosed with Chronic Pancreatitis. Still sick, we decided to get a second opinion at the Mayo and this is where I'm at now. Still sick, told it is NOT pancreatitis, still can't eat much and the Mayo telling me they strongly feel this is a motility disorder of the stomach and they want to do the test to find out if they are right in the next month or so. In my opinion, the Mayo Clinic will not say they think something is what it is if they are not sure. You know what I mean? I have EVERY symptom of Gastroparesis (they think it is this disease) and they mimic SOD. Nausea, vomiting, unintentional weight loss, extreme pain with eating, rapid feeling of fullness that doesn't disapate...etc.
So, I'm so glad my post touched someone because it has been a huge deal for my family and friends.
Melissa
Reply to this
Melissa, ask the doctors at the Mayo clinic what is the root cause of your gastroparesis. I hope you will get some answers soon. I went through similar problems as you and it is very painful and it is very difficult on our families. What are your liver and pancreatic enzymes? What do the doctors say about the damage of your pancreas?
Reply to this
My enzymes have been at normal levels (or relatively close to normal..16-20) since the huge numbers in April. Regarding the damage to the pancreas..they've said there are like seven markers they look at when viewing the pancreas to determine just how damaged it is. They said I have 3 of those markers and that it is not enough to qualify the diagnosis of Chronic Pancreatitis. They also said the Endoscopic Ultrasound that my doc and the Mayo docs used is a very subjective test and that if asked of ten doctors their take on the results, you might get ten different answers...so, the diagnosis is still puzzling. I might have a double diagnosis..as most of us do. I hope this answers your questions.
Reply to this
I have a quick question on Gastroparesis. How does that cause liver enzymes to go through the roof?
Reply to this
Thanks Melissa, I appreciate what a journey you have had. This is really interesting info and I wonder what treatment they will suggest - please keep us posted on your progress and good luck with the last test xx
Reply to this
This is a good question Jennifer. My answer would be that the gastroparesis can't cause the liver enzymes to go through the roof, but high liver or pancreatic enzymes can cause slow motility and stomach emptying by slowing digestive process. I have read somewhere that the Mayo clinic doesn't treat SOD. I don't know why. SOD is poorly understood illness, but it doesn't mean that it doesn't exist. After I had the sphincterectomy, my pains and nausea immediately went away, but they came back several moths later.
Reply to this
Hi...thanks for the question related to enzyme levels and gastroparesis. You asked the same question I asked of the Mayo doctors. They didn't know why that happened and I didn't feel from them that it is related in any way. My husband seems to think that if my stomach was as sick as they say it is/was, then my whole system was probably messed up...which I have read does happen with gastroparesis...that when the stomach is not moving food like it needs to, the whole digestive track gets off whack as well as some of the other body systems. So, in that way, that particular time, I think that is what was going on..but my bout in April, when my lipase was over 1,000 was due to the ERCP...which, the Mayo Clinic told me to never get again. So, I hope that answers your question!
Melissa
Reply to this
Mdaa... not a good prognosis on the ERCP... Hi, I am not sure what I have (no doctors in the world could diagnose me for 2 years) but I in pain RUQ radiates to the back between shoulder blades (Does anyone have that by the way?) right after meals. Can you guy's please tell me if my symptoms are fall into the category? I have no pains when I lay down or sleep at night for some reason. Does this sound like what you have? Only after I eat and if I sit or walk sometimes. Also, cold make it worse somehow. Can't live like that anymore... I am 38 and feel like 88....
Reply to this
Tim, SO pain usually radiates from the right upper quadrant to the right shoulder blade or between shoulder blades. When I had SO pains, they got better when I was lying down or in the morning and got worse with walking and as day went by. My pains usually got worse about 30to 45 minutes after meals, but I had some pains most of the time. If pains are immediately after meals, the food is still in the stomach, pains from pancreas or sphincter intensify about half an hour to hour after meals. After I ate, my stomach got bloated, I had gas and food was sitting in my stomach for a very long time. Melissa mentioned that it is hard to see what the cause of pains is, because everything is interconnected. I agree, because many symptoms are similar for different diagnoses. Also, different people having SOD may present with little bit different symptoms. Good luck to you finding out what your pains come from. Have you had a gastroscopy or an endoscopic ultrasound? What about level of lipase, amylase and liver enzymes?
Melissa, thank you for your response and I hope that you will find soon what the real problem is and will be able to fix it. We have to keep searching and we should never give up.
Reply to this
Thank you Peggy, Yes, slight pain in RUQ is always there but intensify after a meal with bloating and discomfort in whole tors area. I did have endoscopic ultrasound and few gastroscopies and no abnormalities were found. liver enzymes are always normal and pancreas enzymes were good until I believe last time one of them were higher than should be (don't remember which one) and doctors said he is not concerns about it for some reason... like they ever are... No pains at night when I in horisontal position and when I wake up and it starts after my second meal in the afternoons. Is this it??? What you guy's think?
Reply to this
Tim, I had almost the same symptoms. Before the ERCP I also had severe nausea which got worse PM. After ERCP I got severe pancreatitis and when that healed, I was pain free for several month. Then they came back, but thanks to God without nausea. I have the pains under control with 75mgs of amitrptyline. I also got relieve with lying on my back.
Before ERCP when I had attacks, my lipase and amylase were only slightly increased sometimes. SOD doesn't have to have always higher pancreatic/liver enzymes. You can be SOD3.
Good luck and let us know how you are doing. Peggy
Reply to this
Hi Everyone,
Thank you Peggy for your help. I am now on 25mgs of amitriptylase and it is keeping the pain manageable. I have pain about 3-5 days out of the week but with the amitriptylase I don't have to take the strong pain meds thank goodness.
Tim- My liver enzymes were only 80 when I was in an attack which is just double. My only real symptom is the pain in the RUQ and all the negative tests that I've had. They say that the triggers are always food related and occur about a half hour-hour after you eat. We are usually better in the morning because the sphincter hasn't had too much work yet and it seems as the day progresses it gets worse because the build up of bile behind the sphincter is worse.
Peggy is right in saying that lying on your back straight out with your arms above your head has given me the most relief.
My pain radiates from my back to my front and around under my ribs. Sometimes after my 2nd ERCP I can feel movement in my lack of a sphincter spot and then the pain begins. My pain ranges from dull ache to sharp piercing pain. At this point I have developed acid reflux in my duodenum too from the 2nd ERCP.
My doctors in NYC are trying hard to find things that will work. Now I'm on Ellivel or amitriptylase as stated above and they want to try more IBS-D medications that are off label uses. At this point I really feel I don't have IBS, but I guess we have to try different meds because who knows what will work. Hang in there, we all know what you are going through and at least I have the comfort in knowing that there are other people out there that know exactly what I'm dealing with cuz it's lonely when everyone around you doesn't have a clue.
Reply to this
Yes Alexis, I have that movement feeling at the place of sphincter. Annoying feeling. what is it? I couldn't find anything online about it. Like something is moving there on the right side. Does anyone else ever had that? Also, that Elavile thing you all taking (Amitriptylase), I tried that (my doctor gave it to me) but I feel retarded when I take that and will lose my business if I will be on it all the time and I am pretty sure it's not good for health ether. Don't want to end up like MJ honestly speaking. I am trying a lot of things and need to find an answer to that...ERCP don't work very well as we see. It's not somehow related to opening of that SO. How can it be related to opening when you guy's had few cut's and it still not doing what it should? My Gallbladder they say is emptying fine and have no abnormalities. If so, how can this be SO if GB is working and emptying? A lot of mystery behind this...
Reply to this
I have been to so many different doctors and had so many different procedures done and, while they are not 100% certain what is wrong with me, they have found what will help with the meds. And, by accident. Topimax. I am up to 200 mg per day with only 5-10 mg of oxicodone for breakthru pain (which is rare). Yes, the pain is there, but since I was dealing with a daily level of pain at a 6-8 and once a month levels as high as 9-10 that left me curled up in bed for a week or in the hospital for a week or so at a time, this is great. Most days, I have no pain at all. Every once in a while I might have a slight pain. once a month I have the 5-6 level that might have me clutch my side for a minute or two. I will gladly take that over where I was for 2 plus years.
My pain doctor cannot explain it, and to be honest with you, does not really care to worry about why it works, just is happy to have found something that has me basically off of 200 mg of Oxy a day and completely out of life.
Please look into it as it is like a miracle and not one doctor ever mentioned it. He indicated it might work due to some type of pain that might have to do with something else other than SOD, but it worked. He still thinks I have SOD, but it works when none of the ERCPs have worked and no pain meds have done anything to subside this excruciating pain I was in daily.
I hope it helps.
Good luck!
Sandra
Reply to this
Sandra, it's really interesting to me that you have worse pain once a month - my pain very much follows a monthly cycle, with the pain peaking at Ovulation (when oestrogen is highest). I have discussed this with my doctor and am tring to get a referral to an Endocrinologist to explore this further. I also have PCOS and my nutritionist believes I may be bordeline hypothyroid, and I think they are all connected. Controlling the pain is not enough for me, I want to get rid of it and won't stop till I find the answers! I am convinced that there is a hormonal element to this, particularly as I was precribed a high dose eostrogen contraceptive pill for many years. I would like to know at what point in your cycle the pain is worse - is it ovulation for you as well?
Reply to this
Always at end of the month which is when I used to have my cycle. I had a hysterectomy in 2004 due to a severe lack of progesterone and periods that lasted an average of 3 weeks. I was worse than most women post menopausal and I was only 39 . Since I was done having children I said remove my uterus and keep the ovaries. I have the attacks the same time every month the same time. Google it though. There is data out there connecting lack of progesterone and the SOD spasming and it is not new research. I am rather floored that none of my GI drs have never asked me about me hysterectomy because I am going back and asking my dr now to put me on progesterone supplements to see if it will cause the muscle to relax as the research supports. Check it out!
Reply to this
Thanks for that Sandra. I have read that bio-identical progesterone cream may be better than synthetic progesterone which you might get from the doc's - I am sure I am progesterone low as well beacuase my pain is always better when eostrogen levels drop and progesterone rises after ovulation - will be discussing this with consultant soon xx
Reply to this
Sandra,
I tried to look up Topimax. Is there another name for it?
Shelly
Reply to this
The clinical name of the medicine is called Topirimate. It is an antiepileptic. They started me slowly and worked me up to 100 mg per day then gradually worked me up to 200 mg per day. As I said it was a fluke that my pain dr tried this medicine because Dr Shah had mentioned I might have some type of pain (I don't even remember what the term) and so he thought why not be proactive and try this since these types of drugs work on that type of pain and it worked. But the funny thing is that my pain dr still thinks I have SOD. Go figure. Good luck.
Reply to this
hi guys,
tim- i think it is the bile starting to move through your duct that is making that feeling...it feels like a sucking or pressure opening feeling...very odd... and the ERCP helped in the fact that my attacks are not as long, but after less than 1 hour sleep last night and excrutiating pain for 18 hours it doesn't seem worth it.
I went to my docs in NYC today for a followup and here's what we're doing-
1) starting on 30 mg nifedipine which has shown to open up the duct (it's a blood pressure med but can relax smooth muscle)
2) starting ursodiol 300 mg 2 x a day which is to break up any calcium stones that could be forming
both are backed by research to relieve some SOD pain and are better than the placebo.
I agree Tim that I don't want to be MJ but I can't live this way either...i have to try something else...I won't rest until I can live..I'm 25, want kids, want a normal life back...and this is honestly the only way by trying everything once...but we are monitoring everything with bloodwork regularly and such.
The Ellivel will make you feel weird for a couple days but after about 3 days you feel fine. I would try it..alot of people on the blog have had alot of success with it. My docs won't up it cuz I am dealing with the side effects and they said they will get worse if I up it and I can't take more of them--- they are: excessive hunger, excessive sweating, tiredness (although like Peggy said is going away)...
As for pain management...for now I'm staying with perc and seeing one of the top docs in NYC on Monday...I'll update you guys after that.
I see no pattern with my ovulation cycle ladies...but I have heard that some people do.
Hope all are well and getting more sleep than me! Just knowing you are out there somewhere keeps me going
Reply to this
I feel you Alexis. I want normal back as well... There is something is definitely wrong with us and no one really care. Honestly even my family members already fed up of my complains and I don't even talk to them anymore about it. I want kids and get married one day too but really scarred to think about my future due to these things happening... Hope we all be well one day. Nifedipine sounds very familiar. I believe my doctor prescribed this one to me. I have whole house full of meds... Crazy.
Reply to this
Well..back in the hospital. Admitted Monday night after having horrible nausea for 2 hours then the pain came in. Tried to take Zofran...nothing...couldn't keep my bentyl or pain meds down either. After some pain meds/anti nausea in the ER, my GI doc admitted me and my Liver enzymes ranged from 2800 -1000. Even higher than the last time. This has happened twice in 5 weeks. Not sure what's going to happen next but please keep me in your thoughts and prayers. The numbers were down to 1000 this morning and thankfully the pancreas levels were normal.
Reply to this
Dear Jen, you are in my thoughts and prayers to get well soon. I hope they will find what is going on soon. Let us know how are you doing. Hugs from Peggy
Reply to this
Good luck to you Jen!
Reply to this
I've been diagnosed with Crohns since 1992 and have had a colostomy since 1995. I've had increased upper abdominal pain that extends around my back; In Jan/Feb I was hospitalized with pancreatitis. I had additional flare ups in March, May, September, October, and now. I quit eating and things get better. My gastro can't figure out what's going on. Nothing's showing up. My enzymes have been elevated each time except for right now. My gastro is supposed to be getting me in down in Charleston to see if it may be SOD. Some of the symptoms seem to match and then some don't. This has been much more confusing and complicated than my Crohns! Thanks for the blog; if it is SOD at least I'll know more about it from the outset and will have this blog to see me through.
Reply to this
Thank you. It appears that if I have another attack against the liver again (obviously if it's close to this one), I will be the lucky winner of an ERCP!
Reply to this
ooohh lucky you!!
Reply to this
well ladies and gents...I have been backed into a corner on the pain management front and I need your advice asap. I am beginning to get a tolerance to percocet in managment of pain for my attacks which at this point are 2-3 or more times a week lasting for 3-5 days or more a week. So...my docs want me to get a thoracic MRI tomorrow (to rule out pinched nerve or lesion etc.) and then get an epidural nerve block to try and block the pain messages from my sphincter to my spinal nerves and then consequently to my brain. It's this or they said a pain patch or tolerance to the narcotics will continue. Being 25, I have to look towards longevity because I obviously will be dealing with this for at least 50 years or so. (wonderful.) So help. What do you think.
I am currently on Cymbalta, blood pressure meds, urso, elevil etc.
Reply to this
I have been dealing with this for over 2.5 years and my pain doctor finally tried me on an anti-convulsant that is something epileptics take that somehow works on some type of pain (the name escapes me) and it worked. I was, at the time they started me, on upwards of 2oo-259 mg of Oxycontin a day- talk about tolerance. At any rate, the name of the medication is Topimax (it is known as Topiramate) They now have me up to 200mg per day. My understanding is that you do not develop a tolerance and it is NOT a narcotic. I am also down to between 5 and 10 mg of Oxycontin a day- and only at night. There are days when the pain is sometimes worse (the end of the month when it has always been severe) and I could probably take some more, but I have been able to get through the day without building back up.
Check it out with your doctor because for some reason it has worked wonders for me when I have had 2 ERCPs that did not, along with multiple other procedures, tests, etc.
Good luck!!!
Sandra
Reply to this
Since I have last written I have reduced my HRT (by only.25) turned a corner on the rib pain, just don't really have it anymore. However, still cannot tolerate greasy/rich foods, and have itching and extreme bloating and tightness. So herein lies the big question...would removal of gall bladder help my issue or make it worse?
Reply to this
Great question. It may help if the big burst of bile is the problem. But if it isn't and a constant flow of bile is the problem it would make it worse. The bloating and tightness is probably from SOD but I don't know about itching. I don't know what you will ever be able to tolerate greasy/rich foods. Have you gotten a HIDA scan to see what the functioning of your gall bladder is?
Reply to this
What is a "burst of bile"? have never heard of that term...
Have you had you're gall bladder out?
My bad pain in the right rib cage is pretty much gone, I just have this bad bloating, etc, and misery on right side if I eat ANYTHING, particurlay...Italian/greasy/rich foods. Also, if I take more than a half of a pain pill the right side will get tight....why is that? I have had 2 hida scans and passed them with colors. I'm told it still could be the gall bladder. I see a surgeon next week and don't know if I should psuh for it's removal since there is a "chance" it could be worse. If I had SOD III wouldn't I be in more pain? Again, what's the burst of bile?
Reply to this
A burst of bile is when the digestion process starts your gall bladder which stores bile from the liver is activated and when you eat larger, greasier foods that need more bile a larger amount of bile is squirted out into your intestines. I have had my gall bladder removed and it was like opening the flood gates. I never had any issues, was healthier than healthy before my gall bladder started (nausea and some bloating 6 months prior, then 1 month prior bad pain)...my hida scan showed my gall bladder functioning at 12 percent and it was septic. It had gone bad and had to come out. If you don't need it out I wouldn't get it out. It controls the bile which for right now isn't flowing constantly from your liver and leaving your sphincter with less pressure.
If you had SOD III it could be causing some of the discomfort but I don't know if you would be in more pain. I had very little pain up until it happened about 2 years ago. Not sure what to tell ya.
And Peggy. I will be sure to ask all of those questions. Thanks for the guidance
Reply to this
well, If I turn into a vegaterian and eat like Nancy Reagan, I might be fine.
Dang this is mess. So you had no choice but to have you're GB taken out and from that surgery you developed the SOD?
Reply to this
Yeah I wish I could eat veggies. I can only eat some cooked that have already started to break down and if I'm already irritated they start an attack. Yeah I had no choice but to have it removed. They don't know which came first...that the SOD backed the bile back up into my GB and that caused it to go bad or after my GB was removed that the rush of constant bile made the SOD go crazy. There's a 2% shot that someone that gets their GB removed ends up with SOD so they can't tell.
Anyways...off to bed
Reply to this
Thank you the reply. Any advice as to why when I do take a pain pill it causes tightness? It's not as bad as it used to be, but it will bring it on. I think my case is still an unsolved mystery. I'd hate to make things worse but I've been told taking this GB out could help. Who the heck knows.
Reply to this
Hi all...I've said it once and I'll say it again. You need to get to the Mayo Clinic. They are the world's experts in digestive issues. Seriously. They WILL solve your mystery and I can honestly say I guarantee it. After having my gall bladder out, diagnosed with SOD Type II and then, when problems persisted after Sphincterotomy, had an endoscopic ultrasound and diagnosed with Chronic Pancreatitis, was still sick, still hospitalized too many times, made it up to the Mayo, sick as a dog, and they poo pooed on the whole SOD and Pancreatitis diagnosises and got down to the real cause of the pain...a motility disorder of the stomach, which, like people think SOD is underpublicized...so are motility disorders and they know a great deal about them. Please, find a way to go. You have only answers and your life back to gain.
Love to you all.
Melissa
Reply to this
Melissa
That is good information. Do you mind sharing with us what your treatment was and also the tests the Mayo clinic did on you>>>This gives us all hope!!
Thanks
Susan B
Reply to this
For me the Mayo is where my problem began, I had a routine endoscope and everything was downhill from there. No one will take out my gall bladder since I have passed the Hida Scan, and I haven't got true SOD pain. Please share exactly what Mayo did for you're motility disorder? I'm in Scottsdale so going to Mayo is a snap. Thank you for you're help in these "unknow" disorders.
Reply to this
Can you please give me the name of you're Dr. @ Mayo, if you're in Arizona? I had Dr. Fletcher, not the brightest light
Reply to this
Hi Alexis, are they going to use a spinal cord stimulator or what kind of nerve block are they going to use? Did they tell you what nerve root are they going to block? Let us know. Peggy
Reply to this
Hi Peggy,
They didn't give me any of that information. She said it would just be a simple needle to numb the area that sends the nerve receptors signals that my sphincter hurts. She said if it was a pinched nerve she would inclue a round of steroids. But if it wasn't she would just do an epidural.
By the Way--- Our disease was on Discovery Health-Mystery Diagnosis. The girl that couldn't eat was the episode name. I think she had type 1 or 2 but it was on last night!! Look for it!
Reply to this
Hi Alexis, ask your doctor what exactly they will be doing. You don't need any steroids injected to your nerve root, because the nerve root is not inflamed. It carries painful messages from the sphincter to your brain. Ask how long pain relief you can expect ad what are they going to inject you with. Peggy
Reply to this
That happened to me too, Alexis. They removed my healthy gallbladder and because my sphincter was tight, it pushed my bile and pancreatic enzymes back. After my shincterectomy it got better, but the pains came back a few month later.
Reply to this
And the same thing happened to me...GB removed and developed SOD. They think mine is Type 1. Crazy thing for me is I don't have a ton of everyday pain. I do get mild pain that wraps around my back but that's about it. When I am bad it's when I am vomiting and severe pain that takes me to the ER. That's when I have my LE's checked and they are over 1000. My PE's have been normal. So sad and frustrating. And I have discovered that so many young and middle aged women develop this.
Reply to this
My husband was finally diagnosed with sod after 3 1/2 yrs of searching for answers. It started with constant pain like someone's fist was in his side. All scans and bloodwork were "normal." An ER doc suggested it was his gallbladder but because his hida scan was normal we couldn't find anyone to take it out. All this started in 2005. In January 2008, he hit the wall. Couldn't work, in constant pain, nauseated. He asked a local gastro to do a ERCP on him. He refused. Said it wasn't worth the risk of pancreatitis. He did have a MRCP which revealed a "bulge" in his biliary tree. Maybe, could be a choledocal cyst. A cyst that starts growing from birth that eventually has to be removed. So off we went, 100 miles away to Emory University in Atlanta GA. We saw a biliary surgeon who, after two visits and an mri scan, told us to go home & find someone to do an ERCP. On our 4th local gastro, we found someone. He went in and cleared out stones, sludge and puss lodged in the duct. He also suggested removal of gallbladder. We did that. Husband was a little better. A few months later pain returned. Went back to gastro and he did another ERCP. More stones had dropped & needed clearing. About 4 more ERCP's later, no more stones were seen. The gastro suggested that he was well now & his "mind" just needed to catch up with his body since he had been sick for so long. I took my hubby back to Emory, because we knew something was still not right. Emory doc read over records, did a quick physical assessment and declared he had SOD. But, they couldn't diagnose or treat it there. We were referred to MUSC in charleston, SC. We drove 6 hrs to MUSC May 2009, we saw Dr. Hawes. He did a sphincterotomy. One had already been performed by our local gastro. But in a few months (oct) we were back. He started botox treatment. First one didn't take too well and we were back in December. This one was a little better. Next botox treatment was April 2010. Next one September 2010. The septmeber episode was brought on by an episode of strep throat. It was simultaneous. Then, two wks ago, hubby had a severe cold/flu episode. Guess what, he flared up. We've spent all day at a local acute care place that knows his condition. They pumped him w/fluids, morphine, and phenergen. Only things that help. Oral meds don't help flare ups. Scared to contact Charleston just 2 mths after last botox injection. Dr hawes didn't like some of his other treatments not lasting long enought to validate the botox procedure. I'm afraid he'll refer us for surgery (sphincterplasty). My hubby doesn't end up on the good side of statistics usually. He doesn't like the 60-70% improvement rate after surgery. If it doesn't help you're stuck. No more help. He can't work with those symptoms & it would be hard to live in that type of pain & nausea constantly. HE's had 4 botox treatments. We are just hoping Dr. Hawes will continue doing those. We would rather keep trying the more conservative approach.
Reply to this
There has always been a correlation between catching viruses and flare ups. My hubby & I have been married for 17yrs and from the beginning I noticed something was different about him. I would catch a stomach bug and be over it in a few days to a week. He would catch it and wind up in the hospital. Chronic nausea, vomiting and dehydration. He did that with strep before too but not the constant pain back then. Now it seems, any viral or bacterial infection can bring on a flare up. He usually doesn't catch either but it seems to be the cause of his last two flares. He took amytriptilyne (75mg day)for a little while but it was making him feel groggy, sleepy a lot and gaining weight. I suggested to him to get back on it at a lower mg after reading the blog. Constipation a constant issue. Pain on a constant daily basis. He thinks its constant colon/bowel pain because he says the biliary pain is specific. Its hard to know. We have been hopeful every time he's been in the hospital that this was going to be the "last time." But it never is. Already been in the hospital 8 times this year. It looks as though this is a condition you cant quite put your finger on. Sphincterotomies is the ending point for some, which is wonderful. But we are 2 sphincterotomies and 4 botox injections later. I lost my last job because I was out so much with him and only by a miracle has he held onto his. This disorder is very wearing. My poor husband is just tired.
Reply to this
Hi everyone. I went to the Rochester, MN Mayo clinic and because I have been diagnosed with Chronic Pancreatitis, I was seen in the pancreas division by Dr. Clain. (You know they have different areas of specialty within the GI department such as pancreas, stomach, intestines, liver, etc.) In my first appointment, just by looking at my records without any testing they were able to tell me for certainty that I don't have chronic pancreatitis, as my previous physician had thought. Although I have 3 of the tell tale signs, they felt that wasn't enough to confirm that diagnosis. So, they performed an endoscopic ultrasound (which is what I had that DID diagnose me with the chronic pancreatitis but they wanted to do their own test because they said they perform more than anyone in the world) and also did an EGD and tested for celiac disease. As a side note, I've never had a colonoscopy to rule out Chrons disease but HAVE had the blood work which has come back negative. Anyway, the day after the tests, I met with the doctor again and again they said they are certain it is not the pancreatitis, and that they feel SOD may not be a true disorder (they are big into research regarding this and I felt most of the way positive about their feelings) and that they feel it is being misdiagnosed in many people who may be suffering from something else altogether. I asked him why then did my mammotry (sp?) readings come back as though my ducts were narrow and pancreatic enzymes were not flowing properly and they said my doctor did not read the test correctly and that tests for SOD and pancreatitis for that matter are very subjective, even for them, but because of the volume of people they see for this issue, they are very confident in their feelings on the issue. (It might help each one of you to hear this information straight from one of their doctors because getting it second hand from me may not sound as conclusive as it did when I heard it face to face). Also, they said that motility disorders have gone misdiagnosed for a long time and they are finding more people are actually suffering from this type of disorder than they thought. A motility disorder has to do with how fast or how slow food is moving through your system. If it is the stomach that is having the trouble moving the food then symptoms can be weight loss, nausea, extreme pain after eating or shortly thereafter and spasming, vomiting, and diarrhea. Sound familiar? So, they said they felt I did have a serious gastrointestinal disorder in the form of a motility disorder and they felt I needed a gastric (or stomach emptying) emptying test to measure the rate of digestion. They also wanted me to have another test and the paperwork is upstairs and I've got to hurry to my son's Kindergarten class so forgive me for not providing that information now. The Mayo is the only place that I know of that performs the four hour emptying test whereas other locations that even do it (there are not many)
Reply to this
Oops, too long, it cut me off...anyway, most places that even perform the test such as the Cleveland Clinic, the University Of Michigan and some others only perform the 90 minute test which is the standard. The Mayo goes above and beyond to really get an accurate reading. I could go on and on about what a motility disorder is, what it can do, what are the causes but if you're like me, you'll be on the internet researching this in no time. Please do. I want you all to know, I'm not the expert, I don't know what the Mayo knows, or what any other doctor claims to know for that matter. All that I know is that they gave me confidence and I trusted their expertise. I asked them why I should believe them over my own gastro doctor back home and they kind of looked at me and said, you're at the Mayo Clinic and we do more GI testing by volume than anyone in the world. We research more than anyone in the world and we feel very confident on our decisions and advice. So, there you have it. Since then, I have managed to stay out of the hospital...which was rare before I saw them as I have been hospitalized half the year for this condition and I also found out I have been eating all the wrong things. I have been eating for the pancreatitis and the foods for that are COMPLETELY different than the foods for a motility disorder so in essence, I was making myself sicker and putting my own self back into the hospital. My doctor is elated. He said he never would have guessed this diagnosis and is thrilled I went to the Mayo..as are my family and friends.
My love to you all,
Melissa
Reply to this
Melissa,
Thanks for sharing your story. It really helps to hear all sides. Just out of curosity, did you ever have elavated liver enzymes and or pancreatic enzymes during this time.
Thanks!
Jen
Reply to this
Yes, I did have three or four instances of elevated levels...but only one the doctors agreed was a true acute attack of pancreatitis as my levels were in the thousands. This was after an ERCP with sphincterotomy and pancreatic stent placement. So, my enzyme increase was due to the ERCP..which, the Mayo said I should never have had.
Reply to this
Thanks Melissa!
Reply to this
Hi all, I am really struggling lately and am looking for some support/ideas. I was diagnosed SOD 2 back in June and prescribed Imipramine (tofranil I think in the US) as a muscle relaxant. This works a bit, although I still get pain and then I take a Diclofenac. Anyway lately I have started to become increasingly constipated, also upper GI pain and acid, burping and generally feeling like nothing i 'going through'. I have explained all this to the doc who now wants to give me Fibogel for the constipation and Omeperazole for the acid and then see how things go. I am concerned that it might be a motility disorder (and the Imipramine is known to cause constipation etc)but they won't entertain referring me for a second opinion on the SOD until I have tried these other meds. I am sick of taking meds which cause other symptoms only to take more meds etc etc. I am also trying to cope with chronic fatigue and chronic back pain. This new problem means that I can't take the Diclofenac when the pain gets unbearable but they didn't tell me what I could take. When my doc examined me she thinks I may have developed an ulcer from all the stress of it all
Reply to this
Alex,
I am so sorry you are hurting. This is a mystery disease/diagnosis at this point as docs all over the world are trying to figure out what this is and what is going on. I know the pain and the struggle to find something that will work. I also understand the reaching out to try to find answers. I have decided I don't have any magic answers for anyone but I can tell people that I am truly empathetic and really do understand. You have people 'out there' who are with you in this struggle...just never stop fighting to find an answer!
Much care and concern,
Melissa
Reply to this
Thanks Melissa, it's so important to be able to talk to people who understand, there's a limit to how much friends and family can empathise. I guess I am not very good at dealing with uncertainty and literally haven't had a pain free day for about 3 years now, so sometimes it just gets the better of me and my resolve cracks. Thank you for your kindness XX
Reply to this
I wanted you to know (and I am sure we can all be empathetic towards this point) that I understand about the lack of pain free days.
Did I mention that you should look back to some of my previous posts from a couple of weeks ago regarding my story...you might benefit from the info. so scroll up until you see two huge posts from me!
Take care of yourself...don't give up!
Reply to this
Thanks again Melissa, I am so pleased for you, you have had a terrible time. I wish we had somewhere like the Mayo clinic here in the UK, but unfortunately not, I am having enough trouble just getting my GP to refer me for a second opinion, but I will keep trying. Take care and thanks for he support xx
Reply to this
Melissa is right. You have to keep pushing and make it known that you are not happy with the answers. Maybe do some research and show her the paperwork that you found that says you may not have SOD 2. But we all have down weeks where it seems like there is no end...I've had plenty...but we have to be there for each other to say keep going.
I am having an EUS (endoscopic ultrasound to put in a celiac-plexus nerve block to block the entirity of my sod's nerve signals to my brain) done in the next 2 weeks and I'm not expecting the world. We have to accept that we are probably going to be in pain for a considerable amount of time. But if we don't self-advocate and make a name for ourselves, no research will be done and we will be stuck. So get out there and find a way to get a second opinion. I always tell myself that today I can be upset and cry hysterically for 3 hours...but tomorrow has to be a new day and that it will be better and I'm not allowed to cry more than 1 day straight.
I know that we are all are there for you and you can write everyday about how you are feeling cuz we're right there with you...it blows being sick and in pain all day everyday...but at least we're alive and get to watch some great tv
hope you are doing better today!
Alexis
Reply to this
Thanks Alexis, I am a fighter and usually never back down but my GP is really grinding me down at the moment, they just treat you like you are stupid and patronise you by saying you are really vulnerable to getting your hopes up etc - I saw a different GP last week and he said that I was on a wild goose chase trying to find a 'magic pill' and wanted me to go anti depressants! It's the first time I have felt like I am running out of fight, because they just don't listen - especially if I say I have read something online, they just assume it's all wrong and I am srupide for believing something I've read on the net. Anyway, I'm sure I'll get my kickass back in a day or two. Thanks for your support I really appreciate it and it really helps. Love to all xxx
Reply to this
Help , I have been diagnosed with SOD and they want to do an ERCP with Sphincterotomy and no meds tried yet?
Reply to this
What type do you have? You could try meds but if you have 1 or 2 they say the ERCP is much more effective than type 3...type 3 is usually where you see the meds being used.
Reply to this
You should challenge this decision if you think it is wrong. I have type 2 and my surgeon is not at all keen on surgery unless it gets to the point where I can't take it any more. I agree with this as the outcome of this type of surgery is not always positive and it carries a lot of risks (which increase the younger you are strangely). You should ask to try meds irst and leave surgery as a last resirt in my opinion. Best of luck xx
Reply to this
My Alt and my GGT were elevated. I itch sometimes. The pain in my Ruq and in back come and go. I have Steorrhea. I don't know what stage I am in. I am a RN also. But not working now. Staying home with 10 y.o. I am so scared, it looks like nobody ever gets relief. It reviewed the best Gastro. Dr. online in the US and came up with Mayo clinic. This is a risky surgery.
How are you feeling and what happened with you?
Reply to this
I wonder if they are also looking for chronic pancreatitis with the ercp since you mention the bowel issues. How is your pain and how long are your attacks? How often do you get attacks? If it is not an everyday thing and you can function then I say wait. I have chosen to do that . I get attacks a couple times a month. Some are for a few minutes and not too bad and some for 30 min where I think I will die. I can deal with this so I will wait to see if it progresses to more before I choose ercp since it is so risky. I have visited DR Cotton in SC. I believe he is one of the best for this surgery.
Reply to this
I agree with Alex. Try the medications first and then if nothing works, then do the surgery.Had I had my amitriptyline before the sphincterectomy, I wouldn't have had acute pancreatitis. Is the doctor who would do your ERCP surgery experienced with the sphincterectomies? How many does he/she do a week?
I went see Dr. Freeman's lecture. He is one of two top experts on SOD. He said that the classification of SOD 1,2,3 is not accurate and many people who do have SOD don't fit the classification. . He also said that to have a sphincterectomy, we have to find somebody who is an ERCP expert. Not all doctors are trained or they practice the spincterectomies often. It is a very fine surgery and those who are not experts could have about 20 to 30% risks of pancreatitis. He also said that the surgeon should make the cut as big as possible, the small cuts tend to overgrow with the scar tissue.
Reply to this
Janet, I heard that the top experts on SOD are Drs Cotton and Freeman, not the Mayo clinic. Good luck to you.
Reply to this
Does Kidney stones go along with SOD? I have had many this entire year before they figured out I have SOD
Reply to this
Do kidney stones go along with the SOD? Dr. Freeman doesn't work at the Mayo Clinic? Isn't the Mayo Clinic the best for this? Did Dr. Freeman train with Dr. Cotton? Which one do you recommend? Sorry for so many questions... I am so scared. Is this going to be a life long problem? That is what one Dr. told me.
Reply to this
Dr. Freeman is not working at the Mayo Clinic. He works at the University of Minnesota and his speciality is SOD. There are 8 centers in the US that study SOD. None of them is at the Mayo Clinic. Here is an article that Dr. Cotton wrote. It tells you about SOD and the centers and what doctor is conducting the study.
If I had a choice to chose the endoscopist to perform my sphincterectomy, I would chose either Dr. Freeman or Dr. Cotton. They perform it all the time and their rate of the acute pancreatitis after the procedure is close to 0 to 2%. The average with less experienced endoscopists is between 20 to 30%.
Here is Dr. Cotton's article:
http://www.endocenters.com/vol20/Post-Cholecystectomy.pdf
Reply to this
I do not think they go along with Sod but I did have kidney stones a few times when all this started!
Reply to this
Thanks to all of you! Right now I have the ache in the RUQ to that back. I have had it severe enough I had been to the ER several times. My Alt and GGt levels were elevated slightly. I have the Steorrhea. I went to see a Physician at U Of Michgian. He of course wants to do the Sphincterotomy. He rate of success is very low. I sometimes have a burning sensation in that RUQ. I don't know if I shouldn't take Miralax??? Could that be causing all my problems? This all started In DEc. of 09. I had multiple Kidney Stones stent placement for kidney stones. Had severe constipation... NOw this RuQ Pain is driving me nuts. I have been taking Mild Thistle per Dr. Ng . He is a Holistic Dr. but is a MD. Milk Thistle is supposed to clean your liver. That is when you take it at bedtime. Thank goodness for all of you.
Now I don't know which Dr. to see, Cotton or Freeman??? There must be something to this... All of us are suffering. Do you have a clip where they did your GB removal? I do... just curious.
Reply to this
OOps.. forgot I had a Ultrasound showing my Bile duct is 12mm. The MRCP showed normal but Bile duct Prominent.. whatever that means.
Reply to this
OMG! I am in so much pain and having fatty stools. (sorry you don't to hear that) I made an appt with my primary Dr. I called Dr. Cotton office and sent my medical records.. What do I do now? I am worried I have pancreatitis. Do you go to the ER? What can they do?
Reply to this
Janet, I am sorry to hear about your pains. Go to your GP and ask to take the blood test for pancreatic and liver enzymes. It should be taken during the attack. If your pains are severe, go to the ER, but stay away from morphine, it is know that morphine tightens SO more and it doesn't touch the pain. I heard that people get injection of Dilaudid and it helps. Some are on Oxycodone for pain, others on Amitriptyline, Neurontin, or Cymbalta. There are options there. You have to see what works for you.
I am sure you will be in good hands with Dr. Cotton and he will find out what is the cause of your problems. He will probably do an endoscopic ultrasound before he would do ERCP. You already had MRCP. There are criteria for the chronic pancreatitis that can be evaluated by that.
Let us know how you did. I wish you everything best. You are not alone, we all are similar, yet little bit different.
Reply to this
To anyone out there. I went to the Dr. my labs were normal. But yesterday no pain. Today pain. The U of Michigan Dr. would not give me a antispasmodic. He wants me to have the surgery there. I am not having surgery there. His risk are very high. Then refers me to I
BS clinic. Very frustrating. Does this surgery help? Is this my hormones or lack of hormones. I am 45 y.o. I feel they are missing something. Was anyones Bile Duct dilated with this disorder?
Reply to this
Okay, how is everyone? I am now vomiting with this. Does this usually happen? Why?
Reply to this
Just wondering and worrying, Would the MRCP show if I have cancer? I am getting concerned because I am having Nausea and Vomiting. I had the MRCP showing my Bile duct is dilated. Does anyone know?
Reply to this
Try not to worry, I know it's hard but the chances are very low and your symptoms are FAR more likely to be caused by something far simpler. Nausea is very common with SOD and allsorts of other GI problems. Worrying is likely to make this worse as well. You are strong and you WILL get through this, but you need to learn patience with this illness. ((((BIG HUG)))) be strong x
Reply to this
Hi Janet, Did you doctor give you anything for the nausea?? I have Zofran which helps. My duct was dilated to 11, I had the ERCP w/spinc --they cleaned out the sludge and stones and I started to feel better. I have to say it took 7-8 months to recover. The nausea went away quickly but some of the other GI issues took much longer.
Hang in there!
Reply to this
Thanks Alex. Is that your picture on the website? Geez I am such an idiot.. just figured this out. You guys are great for having the Website. I can't thank you enough. God Bless you both. I will quit whining now.
Reply to this
No hun, that's not my picture! I am just a fellow SOD sufferer (in the UK). You are not whining so don't be hard on yourself, this is a place to seek and give support to people who have this in common. Hang in there, things have a way of sorting themselves out - a friend recently said to me that the darkest hour is before the dawn. xx
Reply to this
Laura,
Thank you for your advice. I do have a prescription for Zofran. I don't like to take it though... but will. May I ask who did your surgery?
Reply to this
Hi Janet...you are not whining..this is a frustrating condition, since alot of doctors don't seem to understand it. I had my surgery at Beth Israel Hosp in Boston by Ram Chuttani. What area are you located? If the Zofran helps you then take it...getting the nausea under control can make things more tolerable.
Reply to this
Laura,
Thank you so much. Did you taste the Bile you your mouth? Sorry to be so gross. I am supposed to fly to Florida for two week Vacation. Ha... I live in MIchigan. The pain is there even when I don't eat anything in the morning??? Did you have this. MY MRCP said normal but bile duct prominent. I am afraid I won't meet criteria. I can't get my family Dr. to prescribe a nitrate or Levsin. U of M won't either. They don't do that. I guess they don't think it works??? I am so frustrated... I think they should just admit me and go with the bad DR. who has a 20% chance of dying and or having pancreatitis!!! OMG... I am so miserable but know others are far worse than me. I just can't get the help I need. I called Dr. Cotton. They said it would be six weeks. Then Freeman. My husband and kids are soo looking forward to going to Florida and I have to ruin it. Sorry...
Reply to this
Janet, this condition is very frustrating, because most doctors have no clue, what it is. The only ones that understand is Dr. Cotton and Dr. Freeman. Try which one will take you first. Have you spoken to your doctor about amitrityline? Some of us take it with a good success. Dr. Freeman said he disagrees with the classification of SOD as SOD 1,2,3, so don't worry about meeting the criteria.
I can tell from my experience that the nausea is the the worst thing while dealing with this disease. Mine went away after the sphincterectomy, but my pains came back a few months later. Amitriptyline helps to keep them under control and it allows me to work and to live a normal live.
Do you have a gallbladder? I wish I knew about Zofran, I heard that it really works on SOD/nausea. You need something for pain when going to Florida with your family. I went there last year and that is when I got my pains back, because of the long travel in the car (SOD doesn't like long trips or sitting, it is squashed). Also, your diet will be different and you have to be careful not eating fast foods that are deep fried and you have to eat small amounts of non greasy foods more frequently. Take digestive enzymes with you, try to get Zofran and pain medications that don't contain codeine(that tightens the SO even more).
Good luck. Peggy
Reply to this
Hi, Guys.
I seem to have fixed up my SOD.
I cant seem to find where I can post a new thread, however.
I had my Gall bladder out, thought it was back pain had X- Rays etc etc. You all know the story.
Enlarged main tube from Liver to SOD muscle etc etc.
At the time of my op, I had no pain, then next day the pain was back, it went like this for ages, my surgeon told me he had the machine trapped up my tube, as the Odi muscle clammped down hard on it.
Then I got to thinking, not having a bladder the muscle refusing to open etc. Maybe if I sleep on an angle?!?
THIS IS IMPORTANT BIT: Next day I had reduced pain, then the pain started to die down, I slept on about6 pillows keeping my head and chest area about 6-8 inches above my pelvis. I then tried a control of sleeping normally next day intense pain.
NEXT IMPORTANT BIT: My pillows started to squash and get lower and the pain crept back in.
NEXT NEXT IMPORTANT BIT; I then made some wooden blocks to JACK up the head of my bed, its about 8 inches tall. and MY PAIN HAS GONE!!!
I read this website months ago looking for a "cure".
THIS WORKS FOR ME, TRY IT, IT WONT COST YOU ANYTHING TO STACK UP A FEW PILLOWS, I have found you need at least 6 inches.
Dont know why etc etc. But thought I had better tell you guys about it.
Reply to this
CURE FOR SOD.
Guys I dont want this to look like spam, but if my homemade cure works for just one person , then you need to know about it!
Read my post above, if it works for you spread the word.
I'm not a net junkie so probably wont check her much but will try and get on over the next few weeks to offer more advice.
a. Yes your body will have kink while you are sleeping.....didnt affect me
b. Yes your partner may be put out, if you permantly lift the bed.
c. You will slowly sink to the bottom, but you will automatically drag the pillow with you, you feet stick out the end of the bed in the morning.
I have had the bed raised permant for a month now and all syptoms have gone, pain in URQ, nagging during the day, morning pain, I can even eat a large chinnes dinner and KFC.
JUST TRY IT FOR A FEW DAYS...it works for me...for the last 6 months now.
Reply to this
hi, i am concerned that i may possibly have SOD. i had my gallbladder removed about 9 years ago. since then, i have been symptom free with the exception of stomache accidity which i take omeprazole for. my symptoms now that i think started about 3 years ago. very random sharp pain upper right abdomen. sometimes lasting a day. since then, i had a bad attack ended in the ER had pain upper abdomen radiating towards my back and burning lower back. very uncomfortable. the ER results showed everything normal with exception of a trace of protein in urine which the Dr. credited to possible dehydration. the pain i feel is upper abdomen sharp on the right, but occasionaly dull ache radiates towards the left upper abdomen. any ideas? please help.
Reply to this
Sounds like it, same pain I have, SOD cant be treated 100% different people have different solutions, mine is controled by sleeping on an angle see my posts above. It works for me, if I sleep in a normal bed 100% I will have URQ pain for the rest of the day. I think it might have something to do with the juice from your liver etc backing up during the night....dunno.. try it, it cant hurt
Reply to this
Michelle,
Levsin helps but I am looking for a surgeon who takes care of this via laporascopy. ERCP is to risky for me.... I am in the same boat.
Reply to this
Hey Everyone!!
I need help asap. Had a celiac plexus block endoscopicly last monday. Have been in severe pain since Friday (that's almost 6 days straight) How do I know the difference between a SOD attack and pancreatitis? What should I do? Ultracet is doing nothing, dilaudid is barely making it tolerable...and I can't sleep at all.. help
Reply to this
Dont know what Celliac block is!? But it sounds like a doctor thing ...get to a doctor quick.....dont mess around.....pancreatitis can kill you in days.....get back to the doctor ASAP.
Reply to this
I don't know what Celiac Plexus is... but Dilaudid is a strong drug. If you have Pancreatitis it show up in your blood work usually. If your taking this kind of drugs with no relief, you should go to the ER.
Reply to this
Tried to leave comment on site a couple days ago and it is not here, testing to see if this goes through before I type out again.
Reply to this
Tried one more time to post and it still does not show? What am I doing wrong?
Reply to this
This is working for me!?
Reply to this
CURE FOR SOD.
Hi, Guys.
I seem to have fixed up my SOD.
I had my Gall bladder out, thought it was back pain had X- Rays etc etc. You all know the story.
Enlarged main tube from Liver to SOD muscle etc etc.
At the time of my op, I had no pain, then next day the pain was back, it went like this for ages, my surgeon told me he had the machine trapped up my tube, as the Odi muscle clammped down hard on it.
Then I got to thinking, not having a bladder the muscle refusing to open etc. Maybe if I sleep on an angle?!?
THIS IS IMPORTANT BIT: Next day I had reduced pain, then the pain started to die down, I slept on about6 pillows keeping my head and chest area about 6-8 inches above my pelvis. I then tried a control of sleeping normally next day intense pain.
NEXT IMPORTANT BIT: My pillows started to squash and get lower and the pain crept back in.
NEXT NEXT IMPORTANT BIT; I then made some wooden blocks to JACK up the head of my bed, its about 8 inches tall. and MY PAIN HAS GONE!!!
I read this website months ago looking for a "cure".
THIS WORKS FOR ME, TRY IT, IT WONT COST YOU ANYTHING TO STACK UP A FEW PILLOWS, I have found you need at least 6 inches.
Dont know why etc etc. But thought I had better tell you guys about it.
a. Yes your body will have kink while you are sleeping.....didnt affect me
b. Yes your partner may be put out, if you permantly lift the bed.
c. You will slowly sink to the bottom, but you will automatically drag the pillow with you, you feet stick out the end of the bed in the morning.
I have had the bed raised permant for a month now and all syptoms have gone, pain in URQ, nagging during the day, morning pain, I can even eat a large chinnes dinner and KFC.
JUST TRY IT FOR A FEW DAYS...it works for me...for the last 6 months now
Reply to this
Hi Steve, thank you for sharing your experience with us. I am glad that you found solution to your pains. It sounds like the gravity helps to drain the bile and pancreatic ducts while sphincter relaxes in the up right position. People who have the esophageal reflux find help to sleep up right too. Everybody has to find what helps to them. There is no single answer to SOD. In my case, I am very grateful to have found amitriptyline. Without it, I don't know what I would do. Going through another sphincterectomy and risking another acute pancreatitis could kill me the next time. That is what my doctors told me. Before finding about amitriptyline on this side, I was in so much pain, that I was ready to risk it again. I am glad I didn't have to. Thank you for having this site and I wish everybody pain free rest of Christmas.
Reply to this
Thanks Peggy,
It really does help me 95% of the pain goes away.
By the way.
What is amitriptyline?
Whats does it do?
Can you get it in Australia?
It took me 2two years to narrow down, what was erong with me, X rays on my back, Chiro.
They took my Gall bladder out..and now to find out its inoperable just puts the cherry on the pie, I hope the angled bed works for me long time, but my partner now sleeps in other bed.
Reply to this
Peggy, How much Elavil do you take? I am on 50mg. It helps somewhat but not all the time.
Reply to this
Hello all,
I have the taste of bile in my throat and mouth. I am not scheduled for surg until Jan. 31st. Anyone else have this horrible bile taste?
Reply to this
Has anyone thought this maybe due to a wheat allergy? Dr. Gott wrote an article regarding flour causes the SOD to spasm. I know I have a wheat allergy and used to not eat wheat. I am going to try this, but I don't think it helped. Anyone know of a miracle cure for this? I tried elevating my bed and it hasn't worked for me. Hopefully all you have other things to do on this New Year's EVE! Happy New Year everyone and God Bless you!
Reply to this
Happy new year to all of you!
I have been trying to post and answer Steve's and Janet's questions, but after many and many attempts I gave up.
Reply to this
Your post went through. Give Peggy and I some answers please.....
Reply to this
Hi Everyone!
Hope you had a good new years. I spent mine on the floor...my favorite place. I have had a rough rebound from the celiac-plexus block. Which is basically a shot above the nerve base in your bile ducts area of anastethic and anti-inflammatories. It totally went the other direction and i have been in pain and such since I got it 3 weeks ago. I have found just living difficult. I went to charlotte, nc for new years and my poor friend was stuck in the house with me because I just wasn't up to anything. Thank goodness I had off of work for the week and a half because I did nothing...I literally sat in a chair and didn't move. I saw my pain management doctor in NYC. She started me on topamax instead of elavil because the elavil had too many side effects for me...i went on a muscle relaxer instead of narcotics for the bad attacks (aka when breathing hurts) and no more shots of anything. I have tried a wheat free diet and other food diets and found that the attacks come on just the same and really have no difference. The only difference is staying away from triggers and fat. My attacks have really started to string together and I'm having pain almost non stop and can't figure it out if it's a rebound from celiac plexus block...any advice??
alexis
Reply to this
I have been having trouble posting here. I don't know if this one will print. I have written several posts and they didn't come up.
Steve, look up Elavil on Wikepedia. I don't know if they have it in Australia, maybe it is called differently, but it is known for 50 years all around the world.
Janet, right now I am on 50mgs of amitriptyline/elavil. You can go up to 75 mgs for pain relief, but it also has more side effects.
Alexis, I am sorry to hear about your unsuccessful celiac block and the pains you are going through. I also have side effects with Elavil, but I rather have those then to be bent over in pain and be not able to work and travel. I hope you will feel better and will find something that helps. Peggy
Reply to this
Peggy and Alexis I hope your feeling better guys. I am having a endoscopy with ultrasound tomorrow at U of M. If you ever see Dr. Goo of West Bloomfield, don't go. He does not spend anytime with you his office gal is extremely rude. They were supposed to order an H. Pylori test and they did not. I asked why, she didn't know why. He doesn't spend anytime with you in the office or even when you have a procedure. He didn't have a good patient /Dr. relationship. Save yourself. Dr. see Dr. Goo of Westbloomfield,MI . He is associated with DMC hospital. Really poor care.
Reply to this
Janet, I am so sorry that you had to go through a bad experience with the doctor. Some of them are like that.I hope the one you have tomorrow for the endoscopic ultrasound will be a different one. You could ask him to take a biopsy for the H. Pylori while he is in your stomach. Biopsy is the best and most accurate diagnosis for H, Pylori. I did have it done and it did show H. Pylori by biopsy, but not in my blood. I got cured from it by antibiotics.I had the endoscopic ultrasound not that long ago and it is nothing to worry about. Good luck and let us know. Peggy
Reply to this
Hello everyone in Oddi space. Sorry, dumb joke.I had my endoscopy with ultrasound. Everything is absolutely normal. My bile duct is now only 8mm. They can't tell me why it went down. I am doing slightly better since I have been on a antibiotic for a ear infection. The new GI Dr. said that I probably bacteria overgrowth. Geez.. I begged my other GI fellow to give me antibiotics. I have gone through a lot of pain, loss of time with family, money and time with Dr's and a lot of radiation! Anyone else gone through this. People... before they cut.. get antibiotics..
Reply to this
That's great Janet - really pleased for you and long may it continue.
Reply to this
Very interesting...hmmm...been on antibiotics for about a month...things are a bit better...hmm...you might be on to something here!
Reply to this
Hello everyone..I posted about antibiotics some time ago. Reflaximine is the antibiotic you need. It is for your stomach not absorbed into your blood stream. I am Type 3 ..It works for me and I can now after 4 years of living with this eat hamburgers and french fries.Not all the time...But if I have a flare up 10 days worth and it is over..The best medicine in the world!!! Hope it works for you...
Reply to this
Thanks Alex and all of you. Thank you for the information regarding reflaximine. I hope my DR. will prescribe it. My Father has been searching for years and he says he feels better with antibiotics. Anyone know what to take for IBS? I have the severe constipation type. Just now have this since I turned 45. Weird.. huh? Guess I better look at another website.
Reply to this
Dear Anonymous, Is this an add for refaximine? It tends to look like viral advertising.
Reply to this
NO its not my email address is susan57@bellsouth.net...Just a REaltor in Georgia and a Mom with 4 children..I promised I feel like it saved my life!!
Reply to this
Susan, Thanks so much. My husband said it looked like a viral email. Thanks so much and sorry... I will try this because I always notice antibiotics help. I sorry my husband was skeptical I will forward him the email and say "I told you so!" I am ordering right now. Thanks again, Janet
Reply to this
I just lost another long post I sent to you. I don't know why some posts go through and some don't.
Thank you anonymous for the information about riflaximine.
Janet, read this about SIBO and riflaximine, it tells it all.
http://www.ibstales.com/mark-pimentel.htm
Reply to this
OMG! SIBO and Reflaximine! why hasn't a GI Dr. told me about this. They want me to come back and do a breath test after I have been off the antibiotics for 2 weeks. But think it is for H. Plyori. Hopefully University of Michigan has the breath test. Is reflaxmine prescription only? I seen something like this on Amazon. Does it help with IBS with constipation? That is the kind of IBS I have.Why don't they tell you this? Why? I have suffered, my family has suffered. I hope you can write on here everything you know. I so appreciate it. I think I will send you a payment. More advice on here than any Dr's.
Reply to this
How can I get REflaximine. I thought you could order this online... refluxamine. I am so stupid. So, can I just ask the G.I. dr's???
Reply to this
Rifaximin is currently sold in the U.S. under the brand name Xifaxan by Salix Pharmaceuticals. Ask your pharmacist if you need a prescription.
Janet, have you read the above article about SIBO? It is very interesting. You will find many answers what you are looking for in it. I wonder if there is also a connection to SOD and small intestine bacteria. I am on antibiotics for UTI now and my SO pains are gone.
http://www.ibstales.com/mark-pimentel.htm
Reply to this
Anonymous, could you tell me what dose of rifamxamine do you take to control SOD and how long do you have to take it?
Thank you. Peggy
Reply to this
Hi guys
I did the breath test for bacterial overgrowth or lactulose. Mine was borderline and we did xanifan for 2 weeks. It made no difference. If anything it made me alot worse. I avoid antibiotics like the plague. Like make my SOD symptoms go crazy and IBS goes nuts. Just saying be careful and don't expect a cure. Sorry to be a negative Nancy.
Reply to this
Nancy, Did you try the antibiotics with probiotics? Did you try the drug reflaxmine (can't spell) like the others have said? Just curious.... I agree antibiotics play havoc with normal flora of the intestine but when you have a overgrowth, possibly due to overuse of antibiotics, this is another story.
Reply to this
Hi Janet,
Yes I have used a probiotic since I got diagnosed. They had me on one which I'm blanking on the name and now I've been on florstor. I have been on refluxamine and I have also been on other antibiotics but my sod seems to not be responding to anything. If you have felt better when on antibiotics go for it. Xanifan can't hurt I just wouldn't get your hopes up for a cure.my doctors are now pushing for the old school sphincteroplasty which is what they used to apparently and it is very invasive. I am in pain almost 7 days a week now and my life has taken a big hit from it. I go to work and come home. I do nothing else. So who knows. I'm just trying to live right now.
Reply to this
Alexis, what is the sphincterplasty? I am so sorry your in so much pain. I will pray for you. Do you have a good Dr.? They say Dr. Freeman is good.I really think you should exhaust everything before surgery. I don't know how long you have been dealing with this. It has been a hellish year for me. How do you work? Do you have family? Oh gosh, I am asking too much. I am concerned. How can all of us help you?
Reply to this
Hi Janet,
A sphincteroplasty is basically them cutting the entirity of the sphincter from an opening they cut in your intestine from what Dr. Cotton's PA explained. I have had 2 ERCP's and loads of other meds pumped into me. I have had symptoms for 2 years but only been diagnosed for 10 months. I went down to SC to see Dr. Cotton in both June and August. At this point I am a special ed teacher with kids with autism and I'm not sure how I go to work with 45 minutes of sleep sometimes. I just do it and work through it. Right now being 25, I guess I can do it, but I'm not sure how much longer I will be able to depending on how much the disease takes out of me. I have a husband and he is a saint. He does so much for me and I depend alot on him. I'm worried that alot of the surgeries are better for when you are in your 40-50's because you don't heal as fast, and that is why I am very concerned about getting this sphincteroplasty right now. The studies I read about it say that the younger you are the less chance you have that it is going to work. I read the same thing about celiac-plexus block and I had an awful rebound from it and the pain is/was unbearable from it. So just being there and knowing you guys are here and dealing with the same thing is help enough. I would like to have a family sooner rather than later...have you done this yet? was it before SOD or after?
Let me know what you have done and I can kinda give you what I have done in a timeline to give you some more options...they have shoved so much down my throat. I have 2 very good GI doctors in NYC that are up on all the research and speak with Dr. Cotton on a regular basis and I have 1 pain management doctor that speaks with my GI doctors. So maybe I can be a little resource as well
Thanks!
Alexis
Reply to this
Alexis you are so young to need this type of surgery. Do you suffer with IBS also? Have you got a second opinion? Our bodies sometimes have a way of healing themselves with time.I don't know what kind of medications you are on but process of elimination sometimes helps. Always know a surgeon is always ready to cut on you. They were going to cut on me but I insisted I have a endoscopy with ultrasound which showed I was completely normal. My bile duct went down to 8mm it was 12mm. I am sure Dr. Cotton will do a thorough exam on you before doing this proc. but please, please exhaust everything before letting them cut into you. Your colon? wow... I am not a Dr. but really think about this. But then again, I don't know all your history and meds you are on.But I do know your in good hands with Dr. Cotton. If you can, keep me posted. I will continue to pray for you.
Reply to this
Hey everyone, I just wanted to post an update since it's been a while. In December I had my third procedure (expanding my bile ducts and ballon dilation as well as completing the sphincterotomy from July) which included yet another hospital stay! I have another procedure in march and to be honest I am reaching the end of my rope on this. I am in constant everyday pain/nausea and I am so tired. Recently, my pain doctor decided to try neurontin (anti seizure med) to see if some of it is nerve pain but all it's done is made me very sick. The symptoms are killer. I know everyone has been talking about different antidepressants, something originally avoided due to my bipolar disorder but I think I don't have a choice and I am wondering which ones people have had the most success with? I don't know what else to do, I am one a lot of narcotics and anti nausea meds. Just pasted my one year mark for being sick with this and I am so sick of this!
Reply to this
Hi Mayanne, so sorry to hear of your terrible trials, it is so frustrating and tiring. I get a great deal of reliefe now by taking Imipramine 25mg oper day. It is closley related to Amytriptaline as they are both Trycyclic antidepressants, but for me this one caused less drowsiness. I have suffered from depression and started taking this whilst already taking an SSRI, so I am sure it is OK - bear in mind that the dosage for acting as a muscle relaxant is FAR lower than for antidepressant - for example, I take 25mgs per day but the lowest starting dose as an antidpressant is 100mg right up to 250mg. Best of luck, stay strong x
Reply to this
Has anyone heard of a Ileocecal valve dysfunction? Now a Dr. says I have this instead of SOD. But U of M says I have an overgrowth of bacteria. I feel for you Maryanne, I know what you have been through.Do you have a good Dr.?
Reply to this
I've been reading this blog for a few months now as I'm suffering the same as most of you.
It started in May, 2010 w/ a trip to the ER with chest pains and severe nausea. I left with a diagnosis of chostochrondritis. I was given steroids to treat this and went downhill fast from there. It's all a blur at this point. Ongoing chest pains, lump in throat, burping, nausea. List of procedures and each diagnosis: EGD found mild gastritis, MRCP, HIDA scan, gastric empty study, and EUS found nothing. Blood work would randomly show elevated pancreatic enzymes. Luckily, all along I had an GI doctor that didn't think I was making it up, so he persisted with testing.
Let me not forget all the meds I tested. PPIs, amitriptyline, dicyclomine, anti-nausea meds and so on. PPIs seemed to wreak havoc on my system. Amitriptyline lasted one dose - it was like the worst drunk and hangover all wrapped in one. Dicyclomine didn't seem to do much.
After the EUS, he suggested I had SOD. At that time, he mentioned an ERCP with manometry, but refused to go 'there' without more blood work verifying the acute recurrent pancreatitis. 'Luckily' getting those bloodwork results wasn't a problem for me, so I was scheduled for the ERCP w/ manometry. At the same appointment the physician assistant also suggested that I try nortriptyline (milder version of amitriptlyline) I do feel this was beneficial in the limited time I tried it prior to the ERCP but went through with the ERCP anyway.
So, 1 week after my appointment I was in the hospital for the ERCP and manometry. (3 days ago) Let me tell you, not a pleasant experience at all. The doctor did find my sphincter pressure was at 100 (vs the norm of <40) My bile duct was cut and stented. I ended up in the hospital for 3 days. First night was purely for observation, 2nd night was because I registered a low grade fever during a checkup. I'm finishing my last day of the clear liquid diet today. I will then be on 2weeks of low fat diet (<20 g fat). I have to take 7 days of two antibiotics. Right now, I'm sick to my stomach. Who wouldn't be, living on clear liquids while taking two meds.
So, there's my story so far. I hope my information helps others as the other entries have helped me. I will continue to update my story to let you all know how the sphincterotomy and stent works out for me.
Reply to this
I FINALLY got my gall bladder out and am great.........I suggest you do the same
Reply to this
Hi Kris...Where are you located and where is your dr from..lucky you have a Dr that listens! I had 4 months of hell before they figured out that I had a stone stuck in my duct--that was 14 months ago. I did ok for a while...not totally without gi symptoms and then Jan 2 I woke up in the middle of the night violently throwing up and terrible pain within 6 hrs high fever. Admitted to hospital and had emergency ERCP w/sphinc AGAIN stayed in hosp for 4 days. My doctor doesn't believe in stenting....which I was wondering, do they leave that in? and if so, for how long?? I didnt have any stones this time, my bile duct had totally shut down. and I'm not getting any answers on what do we do if it happens again....
I do have on and off nausea and some nagging pain, but I guess that's to be expected. I am hoping to talk to people that have had this done multiple times.
Please take care and feel free to email me JanesMa357@yahoo.com --Laura
Reply to this
I'm in the St. Louis, MO area. The doctor treating me is in Belleville, IL - about 15 minutes east of St. Louis. According to the staff that worked with me before the procedure, some of the hospitals in St Louis send their patients to this doctor, and the doctor himself said he's done about 5000 of these procedures. (I had my husband verify I heard correct because I was surprised by that).
The stent is left in and is supposed to pass on its own. I have to schedule a follow up x-ray for that today, as a matter of fact.
Today is my first day on real food - be it a fat free diet. I'll take that over clear liquids anyday. I have 5 more days of two types of antibiotics - I know part of the reason I'm still nauseaus is that. Me and meds do not play nice.
Overall, I can't say the procedure was a success yet. I know I need to give it a week or two to let things settle down. I appreciate seeing everyone's updates on here, so I will continue to update as well.
Sending nothing but positive vibes to all the other sufferers out there.
Reply to this
Just an update - one week down since the procedure. I'm feeling better than I have since the procedure. Still have some pain in the upper abdomen and chest, but it's improved. I'm using Culterelle to counteract the nausea brought on by the antibiotics and that definitely seems to help. Here's hoping next Friday I'm still continuing to see improvement.
Reply to this
It took a while for mine to feel better. Unfortunately I had to have mine cut 3 times within weeks to months of each other
Reply to this
11th day after the procedure. I'm definitely feeling some improvement. I'm still on the strict low fat diet for another week, so that probably helps. It's great to be off of the antibiotics.
Jenny, I hate to hear you had to have 3 procedures, and it sounds like you may need another?? I hope that's not the road I'm heading down. Good luck!
Reply to this
Regarding what triggers URQ pain etc.
I have noticed in my case, I get it after about 3 bottles of beer. Or a large bowl of pasta....could it be wheat is the trigger as some one commented earlier?
ANyone else got a similiar reactions?
So far the inclined bed keeps my digestive probs at bay, but the beer and pasta are now known triggers for me.
Reply to this
I get it but it's the alcohol and the fact that it's a large bowl vs a small bowl of pasta for me. I do not touch alcohol at all and I eat very small meals and I'm fine.
Also not eating, exercise, carbonation sometimes, can all be triggers.
As to the inclined bed. You may want to try protronix because I have acid reflux of the duodenum not the stomach/esophogus and it's taken that burning sensation away. Attacks are always around, but with the protronix and pepcid ac at least i'm not burning.
-alexis
Reply to this
Does anyone know the name of a good probiotic called Flores.. or something like that? Is it a prescription?
Reply to this
Florastor perhaps? There is an adult version and children's version. No prescription. We've used the children's version for our kids - it works wonders quickly.
As for me, I'm using Culterelle right now - working great to counteract the nausea and endless bathroom usage brought on by the antibiotics I'm taking.
Reply to this
Oh my goodness. There is people out there that I can realte to. I also have SOD Type III. Ilived with the pain for a year before I was diagnosed from a wonderful Dr. in Royal Oak, MI. My famile DR. had me on Vicodin, Xanax, & Paxil I don't blame him either for that because we really had no idea what was wrong with me. I went threw Lab work, HIDA Scans, Ct Scans you name it I had it. Then finally I went to a Gasteronolgist who at first put me on the normal upset belly medicine and I just knew it wasen't going to help and it didn't finally my family Dr. called him and asked him to perform an ERCP thank goodness he did it I had 2 stents put in 1 in the common bile duct & 1 in the pancreatic duct and he cut the sphincter muscle YEAH
Reply to this
get your GALL BLADDER out...it saved me
Reply to this
Jenny, I live in Novi, Mi. I have been through the mill with Dr.'s... Psych drugs etc. Stopped them. Except now I have Nausea??? This is a new one? Do you usually have nausea with this? My Gallbladder removed many years ago. 1991
What is the best probiotics. Thank you who ever mentioned florastar?... thank you
Reply to this
Nystatin!!! Has helped me after the antibiotic! Pain and nausea relieved at the moment. Even though I had been to the ER two days prior. Does anyone take some kind of natural laxative? Miralax bothers my SOD.
Why doesn't the ER Doc's tell you when your liver enzymes are up again and when the bile duct is quite promient on the CT Scan???? Sorry, so many questions.
I hope everyone is doing better on this site. God Bless all.
Reply to this
I came upon your website a few days ago. It has been helpful
Any advice, input, general help would be greatly appreciated!
Thank you,
Toni
Reply to this
Hi Toni, I like you experience pain that wraps around my right side as well. It almost feels to me like rib pain b/c I can push on spots in the front and back and they are very tender. That was actually one of the first pains that I experienced with this whole SOD thing. It would come and go and then I had my GB removed (before I was diagnosed with SOD) b/c my ejaction fraction was 12%. Hard to say whether it should have been left in or not, but unfortunately I now have SOD Type I or II, not sure which yet.
When I saw my surgeon he said that SOD, Gastroparesis and IBS all overlap each other and he was the first to say that to me. It is soo true. How can someone have their GB removed and now be even more constipated than I was before! I've lost 25 lbs and can't afford to lose more. The Gastroparesis makes this even worse because if I am not having a biliary attack the GP has a hold of me. Thankfully mine is mild but here is what I do know for me:
1. Before every SOD attack that sends me to the ER (just had my 3rd Monday) I am constipated. I end up drinking a bottle of mag citrate once I am released to clear the bowels so I can eat. Sometimes I wonder if there is a hormone that is released somewhere in the gut that triggers the spasm's and then it just heads to the Biliary Tract and stomach. My liver enzymes have ranged from 1200-3000 for all 3 of my attacks, however, this last attack I was able to eat a small amount of chicken and white rice 24 hours later.
2. In between attacks I deal with nagging pain on my right side and around my back. I have felt pain on my right side kind of near my ovary. I can't be certain whether this is SOD spasms (I have had my LE's checked during this pain and they are normal) or if it's my IBS/constipation pain. In the end I really think it's my constipation and IBS because when my Spincter goes hay wire I'm a wreck!
The constipation is the worst. I drink mirilax (sometimes 2 times a day) and the Gastroparesis and IBS make it very difficult to drink alot of water thru the day but I have started trying really hard b/c I know it's making my constipation worse. I also just started using fleets liquid enema's because if I get backed up I do beleive it's going to be proceeded by another SOD attack, plus if I don't, I can't eat.
My surgeon has said that he will perform a spincterotomy however, my husband and I have decided to hold off. There is no guarantee, I could get pancreatitis even though they still use a stent, or I could have the same issue in 6 mos. I had my GB removed in September and it is now almost February. I have had 3 attacks but they are getting further apart. This last one was not quite as bad however it could be that I am recognizing the difference between SOD/IBS/GP and immediately went to the hospital for meds/fluids.
I can't look back now! I find massage is very helpful when I have the right/back pain, if you haven't tried it
Reply to this
Hi! I'm very interested to hear if you have any more information on what your surgeon said in reference to gastroparesis, SOD and IBS being related. I also have all three and have always wondered if that could be in relation to each other but have had no doctors mention this. Any information you can provide would be very helpful!
Thanks so much!
Melissa
Reply to this
Melissa,
I'm curious how you're doing since your trip to the Mayo clinic and diagnosis of gi motility issues. Have you been able to get relief? If so, how? My case seems so close to yours, I'm just curious as to how you're fairing.
Reply to this
Me too. How are you Melissa? What did you do that might help?
Reply to this
Jen,
I have every symptom you have and diagnosis but my last trip to the ER they noticed Diverticulosis. Probably due to constipation. I am just curious how old you are??
I am 45 and going through early menopause and think this has much to do with it. I canceled my sphincterotomy, which I am glad I did. Have you noticed a majority of us are women?????
I take Miralax also, I am so sick I can only eat soup with white rice. When I try to eat right it gets worse. I now have thrush due to the antibiotics they gave me. I get the RLQ pain so bad I thought I was having appendicitis. The Dr. at the Diagnosed me as FOS. Full of S.Literally. Talk about embarrassing. Well, can't help it... try.There is more to this than people know. Please let me know what you find out. I am still in misery and now I am having bright flanks of red blood in my stool. Called the Dr. of course. I don't have Crohns or UC.
Anyone out there have answers?
Reply to this
Hi Jen,
Wow! I am simply overwhelmed by the responses I have been receiving! I truly felt that I was alone in all of this. To answer your question on my age..I am 48
Toni
Reply to this
Hi Janet, I am 35 years old. I have to say I have been very fortunate to have found a reputable local GI doc who has referred me to a larger medical facility to talk about my SOD. If it wasn't for him, I think I would be devastated. He believes in SOD, he treats SOD and has even gone so far as to give me a letter to take with me wherever I go that states what my condition is, how to treat it, and how to reach his on call service if necessary. I keep print outs from all of my attacks and carry them with me so that if I do have an attack, I can head to the ER, give the doc the papers, and feel relief that I am not a pain med seeking druggy. My family prac doc is also on board. In my opionion, you should surround yourself with physician champions. If you don't have this kind of support from your GI or GP then it's time to find someone who will give you this treatment. I could not take Elavil or Bentyl due to reactions to the drugs. However, I am considering taking Erythromycin 1 x a day maybe for a week on/week off to see how it helps with the horrible constipation that I get. It's like a vicious cycle but I feel like if I can keep regular, my GP and constipation will get better.
I haven't had a colonoscopy yet however I don't have any of the symptoms for diverticuli disease. Unless you have internal hemmrhoids, it would be wise for you to get seen by your GI doc ASAP for the bleeding...just my opinion.
Reply to this
Thanks Jen,
Called U of M and they haven't returned call yet. I don't know if I need another round of reflexamine. That is a good idea to carry around papers. What does your Dr. say about causes of SOD, IBS etc? Some say it is all a infection.
Reply to this
I am 8 weeks post op from gallbladder surgery and have right sided rib pain that radiates to the back. This started about two weeks after surgery. I've been reading all the blogs and believe I have SOD. During my gallbladder surgery, the surgeon saw 4 small stones in the common bile duct. two days after surgery I had a ERCP ( I think the dr used a balloon dilation, but found no stones) Two weeks later, I began belching after eating and drinking ( I had this before the surgery too) After eating I had right rib pain that radiate to my side and back. I also found that driving I really felt under rib pressure more so. I had an MRCP done two weeks ago and small amount of sludge was seen in the common bile duct! Does this sound like this could be SOD? The dr has discussed another ERCP w/ sphindertomy (sp?) Any suggestions on what I should do?
Reply to this
Lynne, I too finally had my gall bladder out after suffering with horrific pain in right rib-cage for 18 months. No stones, so considered billiary dyskinisia. I am almost 2 months post-op. I am 85% better after this surgery, but it still is a little tender at times and sometimes maybe more. I feel in time it will pass, I hope. I'm sure there is a little SOD going on too, but in my opinion the "cutting" they do on the sphincter is not the answer after eading on here that the majority go back to have it done again and again, that can't be a good thing. Try eating small slices of apple throughout the day. Try a mild tranquillizer/muscle relaxer i.e. xanes and exercise. I would really think hard before I had the pancreas cut on. Just my opinion. Take care.
Suzanne
Reply to this
Meant to say xanex. Also try taking Metamucil mixed with 2 tsp. of Miralax daily. This helps too. My severe PAIN is so much better after the GN surgery, but now I still feel it over on right rib cage more like a swelling. I'll take that. But I see no evidence where cutting on the pancreas has helped anyone and I just don't think it's safe or by that I mean the true answer.
Reply to this
I too had biliary dyskinsia, low ejection factor on the Hida scan. But I'm feeling worse from the surgery, especially in the morning. As the day progresses I feel better. I was hoping I'm still recovering from surgery, but as time goes on I'm having my doubts. I have pain all day long but it does subsides during the evening. I've been really watching what I eat, beacuse any fat I feel pain in my back and under ribs, almost like a burning feeling. I'm very depressed and uncertain what to do
Reply to this
Refaximine girls... it has helped me so much but I am not 100% yet. I am taking nystatin for the Candida overgrowth. Looking into a more natural way to control yeast. Don't let them cut on you. I was desparate and ready to have surgery but really think you should find out what foods your allergic to and stay away from them. I am allergic to wheat and dairy, many people are. It is amazing how much better I feel but I am still having some bad days but don't always believe in allopathic medicine. They just want to give you a pill and make it go away. They don't get to the root of the problem. Keep studying and looking for answers. Surgery is not the answer.
Reply to this
Janet, how often and how many of the Refaximine do you take? I too am allergic to wheat. I still have a bottle of these meds....so let me know how you use them
Reply to this
I passed my hyda scan twice. Finally opted for the GB surgery as the surgeon said I couldn't get any worse. And, luckily I have been so much better. He did say my odds were only 70% that the removal would help. GB was infected. I have read that it can take 6 months for the full effect. My choice was the right choice and the ghost pains I'm still feeling are way better than before surgery. I would make SURE you're getting enough fiber (movement) in the a.m. My surgeon (as 60%) of Dr's well "say" that he is not sure that SOD is a true diagnonsis. I asked, if not then what are all these people suffering from, he's response was....epitheleal cell change...who really knows. I just don't see any evidence that having you're spincher CUT resolves the problem forever? So, I wouldn't opt for it until further evidence is known on this. I think you need to up the fiber (big time), try warm/hot showers on the right side and try taking a magnesium (soft capsule) once a day also. This is a screwed up deal. I do agree that gastroparisis and a little IBS combine to make this "weird" problem and SOD is the end result. You're only 2 months post-op, so I would try these suggestions and give yourself more time, while uping you're fiber (not hard raw veggies).
Take care and hang in there.
Suzanne
Reply to this
Refaximine, you mean the anti-diareah or travler's diarea med? I tried that 6 months ago (before they took out my infected gall bladder) oddly it caused diareah,(while in bed), but it must say I was pain free. I'm much, much better without the GB, so if I should get in a "state" again, I will take it again. I AGREE with you totally, DO NOT LET THEM CUT ON YOU'RE pancreas, because they will just have to do it again and it's not the everlasting answer. I will never have that done. I'll see how things progree for me and maybe try a round of the reflaximine again here soon.
Reply to this
Thanks so much for your replies. I will use Metamucil and Miralax a try. Why do think there is an allergy problem? This is the first time ( this blog) someone mentioned a food allergy with SOD. I have been diagnosed with IBS years ago, could this be contributing to my problem? Yes, the dr did mention to give it more time before doing the ERCP, but I see no improvement as time goes on and I don't know what to eat, since almost everything especially fats really bother me.
Reply to this
Fats will bother me too now withou the GB...eat lots of fruits and steamed veggies, I eat chicken a lot & fish. There's lots of things you'll find good that are fat free or low in fat. I do the VERY best when I eat small/little amounts throughout the day. As time goes on you can ease into some heavier foods, stay away from cheddar. Simple blood test will reveal allergy to food. Just remember the ERCP & cutting the spinchter is NOT the cure. If you feel there is a stone lodged in bile ducy an endoscope with ultrasound can be done, it's relatively harmless. Wholefoods make a fantastic glueten free sliced bread. Be careful on chips,I have trouble with them as they are greasy buy baked.
Reply to this
yes, another nice lady suggested on here. It has helped but now I have yeast like crazy. I am hoping to get it under control. I had my GB out in 1991, I do not think that is a mistake. I have Magnesium 200mg capsules they gave me. How much should I take? I know that and Vit. C in large quantities help move the bowel. They gave me a powder type. Yes, that is the traveler's diarrhea drug. I am so grateful to eveyone on this site. I am taking a pro biotic but I read where oregano oil helps with yeast also. Anyone know about this?
Reply to this
Suzanne, I took Refaxamine 550mg twice a day. It made me nausated though but I think it was because I was on numerous antibiotics for a whole year for uti's and kidney stones.
Reply to this
I am most certainly not a Dr. but they checked my blood levels for allergies to wheat and casein. I am highly allergic to both. The Dr. said this will cause IBS if I continue to eat these foods. Many people are allergic to this. That is why some drink Rice milk and have a gluten-free diet. But others stay away from milk because of the hormones etc... which also play havoc with your system. Meat also does many things to the bowel if they have hormones... I feel like it is a no-win situation but I am feeling better already, since I have cut this out of my diet for a week. I also give myself B-12 injections. When your bowels are all messed up, you cannot absorb nutrients like you are supposed to. The fatigue has left. I don't know what is the exact solution but I am trying girls. If anyone disagrees or has any other ideas, please let me know.
Reply to this
Thanks Janet, yes 200mg is best/ as less is best. Haven't heard or read anything else you're asking about. This is a very informative site. I'm into fruit SO much more now and if I don't overeat I do very well.
Reply to this
Hi all, my SOD is much better these days, here's what I have done:
Saw a good nutritionist who advised to cut out all gluten and cows milk. My doctor had already tested me for allergies and given me the all clear HOWEVER all blood tests done by GP's have a very broad range of what is 'normal' which might not be normal for you.
I take Imipramine (muscle relaxant) similar to Amitryptaline, this helps relax the SO.
I eat little and often - eating too big a meal or getting too hungry makes it worse. I never go more than 3 hours without eating something.
Cut out all junk food, caffeine, alcohol and sugar (including a lot of fruits).
Relax as much as possible and keep hopeful.
Take Magnesium to help with anxiety.
Take Diclofenac when the pain is really bad.
Take Milk Thistle with Artichoke and Turmeric, to support my Gallbladder (which I still have) and liver.
I also came off my contraceptive pill as for me there was definately a hormonal element and I am very Oestrogen dominant.
I take Movicol sachets for the constipation as this just gets water into your bowel - no chemicals for you liver to deal with and therefore no side effects.
Make sure I eat some 'good' fats every day, with lots of salads and veggies. This can be in the form of organic eggs, Virgin coconut oil, extra virgin olive oil or a small amount of organic butter from grass fed cows. Contrary to popular belief, the body does need some sautrated fat, just stay clear of anything heated/processed ESPECIALLY sunflower/vegetable oils, which so many people think are better for you. See Dr Mercola's website for more info on that.
Despite all this I do have medium upper GI pain now, with heartburn and reflux, but I would live with that over the SOD pain and being in hospital again any day.
Reply to this
Alex, I am so happy to hear that you got the SOD under control. Thank you for sharing it with us. I am still on amitriptyline, but it causes lots of water retention and weight gain. I have to see my GP about it, maybe she will prescribe some diuretics. I have a good pain control with it too. I think the wight gain is the prize I pay. It is still better then to be in pain. I take 20mg Rabeprazole (proton pump inhibitor) with each dose of amitriptyline and it keeps my reflux/heart burn at bay. Keep in touch and good luck.
Reply to this
all good info here. where do you find Movical sachets? Never heard of these?
I just take the xanex for the relaxant as the ones you mention are anti-depressant, but the xanex wrks fine. Let me know on the Movical, thank you
Reply to this
Hi Suzanne
Yes the Imipramine is an antidepressant (tricyclic) but only in doses of 75mg + per day (and more ususally 100mg+) In low doses it really has no effect on mood at all, just muscles and pain.
I am in the UK which may be why you haven't heard of Movicol. The ingredients are:
Macrogol 3350, Sodium Chlordie, Sodium hydrogen carbonate and potassium chloride. Perhaps you could ask a pharmacist to recommend something similar.
Another thing I forgot to mention earlier is to definately never drink anything carbonated.
Best wishes x
Reply to this
I have been suffering from SOD since sept 2009 following gall bladder surgery. I've had a sphincterotomy and for the past year have been having stents placed in my common bile duct to hopefully stretch the duct and keep oddi from spasming. I've been on all the medications and followed all the diets. Im only 32yo and under the advice of 2 different doctors have decided to have surgery to bypass the common bile duct and sphincter of oddi altogether - which will basically kill oddi. I am an RN so I have increased knowledge on the risks and benefits and have decided I can't live my life in constant severe pain so surgery is a go. The surgery in called a choledochoduodenostomy.
Is anyone had or know of someone who had this procedure?
Reply to this
That's amazing? Please let us all know you're outcome. In what part/what state are you living? You must have some very good Dr's there, good for you. When will you do this surgery? I know of no one on this site that has had it done.
Reply to this
I live in the New York City/NJ area and am fortunate to have wonderful GI's and surgeons available to me. I am also fortunate to have the knowledge as a RN to get me though this. I'm not gonna lie - I struggled to get the diagnosis of SOD and was labeled IBS by my 1st GI. Well when he told me to "live with the pain" I fired him on the spot. So I will be having surgery in the next couple months. My GI and heptabiliary surgeon both agree this is the best option and both are well known in their fields. Hopefully I can bring back good results to this group! Fingers crossed!
Reply to this
I live in the NYC/NJ area as well and after 2 ERCP's in South Carolina by Dr. Cotton they have all given up. I am now doing just pain management. Please let me know what doctors you are seeing so that maybe I can get some relief as well. I am just desperately looking for someone to give me some hope and more options! If you want to do this by more private email I can give you my email. Thanks! Alexis
Reply to this
Alexis - definitely send me your email address and I will give you all my info. I know doctors in NYC, North Jersey, and Central Jersey that I can recommend to you - all of who are WONDERFUL and will NEVER make you live in pain. My biggest problem was that I had 2 surgeons who wanted to do 2 different surgical procedures and I had to choose which one to have! I'll fill you in on all my specifics and get you to the right doctors who can help. You should NEVER be told to "live with the pain."
Reply to this
Hi Donna!!
It's like it was meant to be!! You have no idea how excited I am.
I go to Dr. Weber with Concorde Medical Group out of NYU. My Pain Management Doctor is also out of NYU and she is Dr. Selassie.
I can tell you what I have had done and all the stuff I'm on and maybe we can fight this together!!
My email is: alexissomers85@gmail.com
Talk to you soon!
Alexis
Reply to this
Alexis - I literally have tears in my eyes knowing someone might possibly understand exactly what I go through every day of my life - and lives close by too! I'll sent you an email now. We WILL fight this!!
Reply to this
onna,
I am a 24 year old female who lives in NJ is it possible for you to email me those doctors you sent to someone else above. Thank you so much!!!
I am almost two months post gallbladder removal, ever since my surgery my RUQ has been excruciating. I have been through numerous tests, including an ERCP which revealed Sphincter of Oddi dysfunction, I had a sphincterotomy done and had relief for about a week, the pain is now bad. I have a constant RUQ pain, upper under my rib cage, that gets worse when I eat, or if my stomach is completely empty. I am a 24 year old otherwise healthy female. I have lost 20 lbs in 6 weeks, and I am now underweight.
Reply to this
Hi Felicia!
I am so excited that there is another person in our area (NJ) that has our disease...well of course not that you are suffering but that we can discuss and deal with it together. Email me at alexissomers85@gmail.com and I can share the doctors and stuff that Donna gave me and I will add you to our emails.
Hope to hear from you soon!
Alexis
Reply to this
Good luck with this procedure. It does sound intriguing.
Alexis, maybe this is what the doctor orders for you? I hate to hear how you continue to suffer.
Reply to this
What fruit do you eat? I have been using apples in my pressure cooker.. kind of making applesauce. I see some are on Impramine? Is this better than Prozac? With less side effects?
Reply to this
Main fruit is apples as the pectin under the skin is supposed to be very good for you and I notice a good difference. Great when you're out in and to busy to eat, you can grab one, since skipping meals is NOT a good thing. Grapes do well for me too.
Reply to this
Have been tested for Candida
Reply to this
Janet, are you still on the antibiotics? What dose are you taking? How long are they supposed to be taken to have an effect on SOD?
Once, I used to be on long term antibiotics for another illness. I remember the fight with yeast very well. Nystatin didn't help me. Make sure you take lots of probiotics between the doses, at least one hour after the anitibiotics, otherwise the antibiotics will cancel the probiotics. My solution was Fluconazole pills. Here, in Canada, they can be bought over the counter. I took them every day for 7 day, then every 2nd day for a week and then once one week. It is a very strong dose, since they normally give to the patients only one pill. I was under supervision of NP. I also took Monistat cream vaginally. Nothing else worked. I tried almost everything. Good luck. Peggy
Reply to this
Apples help to soften the bile. I drink acid free apple juice. It is great.
Reply to this
Came from the G.I. Dr. I showed her my yellow tongue... she said not thrush but another Dr. says it is? Anyone else have this? Sorry to be a pain. She also said you just have IBS and deal with it. She said to take Metamucil instead of Mirlax. She said you probably had a episode of
SOD but not now... Just talked to me like a dog. Asking me if I am under stress.. etc. Yeah.. when I am in pain and feel like crap all the time.. Can anyone help me? I am so frustrated now.. They make me feel like I am the crazy one. These symptoms are real. I have a wonderful family and have the normal stresses everyone else has... They put me on Prozac 20mg.. should I go off this stuff??? Can anyone understand me? sorry...
Reply to this
Dear Janet, I completely understand how you feel - you are not mad, it seems that most docs feel prozac is a cure all and often go down this road when they can't come up with anything else. I have Chronic Fatigue Syndrome, Slipped discs, SOD, and PCOS and without fail, for every single condition at some point the doc has suggested Prozac!! There is a HUGE difference between clinical depression and reactive low mood/sadness and frustration caused by being in a difficult situation - you wouldn't be healthy if you didn't feel p*ssed off about being in pain!! There is a definate clear mind-body-spirit connection in health - and you can work on this by reading great self help books, meditating, relaxaing and finding what helps maintain this balance for you as an individual. There are also side effects of all medications to consider and the effect on your liver. I chose to come off my SSRI shortly after my SOD diagnosis, despite having recently lost my job and dealing with all my other health struggles and I feel better for it. Anxiety is definately a contributer to SOD for me, but I use Magnesium supplements to help witht that and most of us are magnesium deficient anyway. Spend some time with your 'self' - work out what will improve your own balance and don't let anyone make you think you are mad just because they can't help you - that's just overinflated ego at work in my opinion. Keep strong, this is a journey and you will learn a lot about yourself from it. xx
Reply to this
Hi Janet,
I agree with Alex. You need to go to another doctor and just move on. This doctor is obviously completely whacked. A lot of doctors don't understand our disease and put up a facade and medicate us to make themselves feel better and to cover their own *ss. She's 100% right in saying that anxiety plays a huge role in our disease so you need to let go of what this doc said and move on. Keep strong, move to the next doc and find someone that is willing to research and treat you, not dismiss you with drugs and a nasty taste in your mouth. We're here for you and you can do it!!
-alexis
Reply to this
Thanks Alex... needed that. They have discovered Mold... bad.. in my Master Bathroom. The Dr.'s say this is what is causing most of my problems. Sounds like a Sci-FI channel. Coming today to see how to clean it up. How do you go off these SSRI's? What natural antidepressants are there?
Reply to this
Hi Janet,
One thing that I have learned about this type of illness (as with the chronic faigue I have), is that it is as individual as the sufferer. As many different causes as there are cures. I believe it is a massive challenge that the universe had created for those people who are capable of dealing with it, learning and ultimately growing from it. In a way we are privelaged to have this opportunity! The journey to recovery will therefore have different answers for all of us and what works for one may not work for someone else. I strongly believe that the answers are within us all (not ego driven doctors), but we have to prioritise finding those answers (not always easy) and 'life' gets in the way of doing that sometimes. In the meantime we can all support each other when the challenge is getting the better of us, until our answers come along.
Reply to this
Hi Everyone, Hate to report, but I ended up back in the hospital 2/9. My liver enzymes were elevated again, so another ERCP with balloon dilation and an EUS. My pancreas was fine but my duct in very severe stenosis. I was discharged the next evening, but within 24 hrs had a 102 fever and had to go back to hospital. Liver enzymes elevated so back to surgery again. This time they said they found blood clot stuck in there causing problems. I came home yesterday and have nausea and some pain. I'm so sick of this! I'm missing work and worried about my job. The Dr is saying this can keep happening because my duct is so stenosed
Reply to this
Laura,
I am so sorry dear. Are you feeling any better? Is your fever down? What can I do to help you? I have had a dreadful weekend but not as bad as you. My liver enzymes are going up, pain and nausea so intense. I found out I have mold in my house and they say this can cause liver,IBS,nausea etc. They are checking my blood levels now and I won't know for 10 days if I have the antiboties. This pain and nausea is so dibilating and I am afraid my husband can't hang on much longer. It has put such a strain on my marriage.
Is there anyway you can go on disabiltiy? I so understand your suffering. I am up at 4 am this morning with pain and nausea.
I just don't understand Laura, why so many of us are suffering with the same thing??? Really.Why?
Hang in there and I will add you to my prayer list. Is anyone helping you? My family all live far away and feel so alone because my husband travels alot.
Reply to this
Just an update 3 weeks post sphincterotomy. I had my follow up with the GI doctor yesterday. I had been improving at a slow base, but put myself back a few steps by eating fats (how could I resist - I was making sugar cookies with my daughter, and well, it went down hill from there!)
I'm back to strict low fat again - for 2 months, and also taking nortriptyline - 10mg, nightly.
So far, do I think the procedure was worth it?? I don't know. I think, perhaps, going super low fat and trying the nortriptyline for 2 months prior to the procedure might have been a better route, but there was miscommunication between me and the doctor's office after my bad luck with amitriptyline. (as in, I didn't know I had another option for a lower dosage)
The doctor is very encouraged with how things are going for me so far, so I'll take that as a positive. I can say for sure the nausea is not near the problem it used to be. My husband says I'm even fun now.
The doctor did say that it would not be surprising to see I need another procedure in a couple of years, and he's hoping that he does not need to make any cuts on my pancreatic duct.
As always... I'll post with any updates as they come.
Reply to this
Does anyone have or had breast implants on this site? I do have Saline implants put in 3 years ago. They now say I have asthma. Never had this in my life. I am seeing a Dr. who was on ABC New regarding the dangers of Saline implants and how it can cause IBS also... I am such a fool. I am so scared also. My Pulmonary function test is really low. I hope there is someone out there like me....
Reply to this
Does anybody have increase pressure under ribs while sitting and if you do what causes this? I have this and it's driving me crazy, this happens especially when I drive. Any answers will be greatly appreciated
Reply to this
Donna,
I am a 24 year old female who lives in NJ is it possible for you to email me those doctors you sent to someone else above. Thank you so much!!!
I am almost two months post gallbladder removal, ever since my surgery my RUQ has been excruciating. I have been through numerous tests, including an ERCP which revealed Sphincter of Oddi dysfunction, I had a sphincterotomy done and had relief for about a week, the pain is now bad. I have a constant RUQ pain, upper under my rib cage, that gets worse when I eat, or if my stomach is completely empty. I am a 24 year old otherwise healthy female. I have lost 20 lbs in 6 weeks, and I am now underweight.
Reply to this
Christie, your story is very similar to mine. I am also taking Amitriptyline and it is controlling my pains to some extend. What dose are you on? Do you have water retention? Do you have any joint or muscle aches from it? Peggy
Reply to this
THANK YOU!!!!! I'm in shock. I found a site that has described my life for the past 8 months....with a few exceptions. I was told by one dr. i had a brain tumor and a possible stroke....that was fun! Geesh!
I'm still recovering and trying to figure my "triggers". I'm tired...alot of the time. still can't eat meat and part of the time i'm afraid to eat. I vomited for 3 months straight. really kills the dating life! LOL! Not alot of men want to kiss you after you've barfed the meal they just bought you! hahaha!
My faith in God has got me through
all of this. If it wasn't for Loving, Fantastic merciful God, my wonderful parents, children and extended family and friends, I NEVER would have gotten through the hullabaloo of this miserable illness.
I've exhausted my finances, time and the patience of my boss, coworkers and carpet cleaner! I have became a vegetarian, wear a smaller size, and have very thin hair. I've made friends, enemies, made drs and nurses mad because I'm mouthy and really just don't care anymore when someone tries to tell me how my body feels.....I'm the one wearing this body! Ive had veins blown, tubes in my nose, throat, up my butt, so doped up i couldn't sit up, woke up crying over a baked potato in a place I don't remember going to, passed gas in front of strangers and barfed in church. it's be lovely.
But I'm alive.
No, sometimes life isn't fair and there is no answer why. And if I knew why,would it change anything? who knows, and really who cares.
you can accept what life hands you, or fight kicking and screaming and waste the energy you have for recovery on fighting or you can pick up, re -adjust and go. Take the advice of a GPS on this life journey- recalculate!
I know there are days ahead where staying in a horizontal position will be the smartest thing I can do. but at the same time there will be days I'm the ole run yourself ragged till you drop goof ball.
Someday I will buy stock in my favorite Grits company, Ensure Company, and market my mothers noodle soup that I have survived on.
I'll wear a two piece swimsuit at Myrtle Beach this year and laugh at my saggy belly and butt, tempt fate by eating something wild and puke my guts out for a night, and lick the carmel out of my favorite candy and throw away the chocolate covering that makes me so sick.
I'll hug my big handsome sons as leave for their homes, laugh at the 6 nieces and nephews and dream of grandchildren. I'll kiss a man ...without barf on my breath and not fear having dinner with friends. I'll enjoy sunsets and stars, butterflies and flowers and the nuzzle of the dog....that hogs my bed.
And I'll thank God everyday....for oh ...so much.
Reply to this
Hello All, hope all of you are doing okay and still checkin the blog of www.thesphincterofoddi.com
Today I made some changes to the blog and added a couple more blogs for you guys to use.
Lastly, the Dr. that operated on my wife found the site and sent me an e-mail, nearly 3 years later. Wow, what a great guy! Keep the faith people.....God is good.
Thanks,
Administrator
www.thesphincterofoddi.com
Reply to this
Thank God I actually found a website about SOD! All I can ever find is info about what it is and that all is well after an ERCP and sphincterectomy. Well all is not well after I went through mine, and I can't find any more info. I was diagnosed last year after a CT scan showed a dilated pancreatic duct and pancreas. Apparently I had pancreatitis after major spine surgery and it went untreated. I was in alot of pain and the MD thought I was just a drug seeker who wanted to continue her post surgery meds. Well my sphinchter cut just scarred over and I am in the same place as last year. It took me a whole year to pay off what I owed from the last surgery. I have been taking propranol for spasms and it helps a little. I also started taking dandelion and burdock root infusions, as it helps clear the liver and is a spring tonic.It helps me feel less toxic. Can a person die from SOD? It is really making me unable to finish nursing school and I feel awful. Thank you for a space. Diane
Reply to this
I wanted to know if anyone has the symptom of pressure pain in the abdomen. I am not 100% sure that the continued problems I have is from the SOD or what. I had my sphinctor muscle cut and a bile stent placed this past January. I have not had the severe pancreatic attacks I used to have since those procedures, but I do still have the pressure pains that begins when I am up walking around. I do have "spells" where the pain is worse and I am taking 2 mg of morphine for the pain, sometimes just 1 pill a day and sometimes 3 if it gets really bad. I have read the posts here and I'm not sure my symptoms fit what everyone talks about, but I just very confused in general. I can not get any of my doctor's to answer my questions because I have 3 seperate "unique" issues going on. I have had portal vein thrombosis and have extensive canilation, which is very good! Then I have the new SOD issues and then the bile strictures. I believe the bile stricture is from the damage from the portal vein thrombosis and the doctor's do not know if the SOD is what created the portal vein thrombosis (when I was pregnant I found out I had Factor V Leiden) or if the clots created damage to the SOD and then caused the damage to the liver. I don't know. It is all very confusing. I had the stent placed at Mayo in Rochester in January and am scheduled to return to Rochester at the end of this month to have the same procedure that had the stent placed. I was in the hospital for 8 days last time. I'm thinking that since the SOD is still bothering me (not as bad as before, but still bothering me) that I will still have a reaction to the procedure, but prayerfully not as bad. Any suggestions or comments would be GREATLY appreciated.
Reply to this
Hello everyone. I am glad to have found that I am not the only one suffering from this! I believe I am suffering from SOD and have been diagnosed with gastroparesis(slow gut). I have been "dealing" with this pain for the last 15 months after my gallbladder was removed. I had episodes prior to this since I was 19...I am 38 now. I noticed the episodes came on with fatty foods. However, nowadays everything and anything triggers the pain. I have seen 3 GI docs, 2 of which were military docs, being that I am in the US Air Force.
Main triggers are: Stress, fatty foods, any kind of exercise (even walking very slowly), foods high in fiber, caffeine, sugar, carbonated drinks, sitting in certain positions, and anything that raises my heart rate it seems. Nobody should live like this and was wondering if anyone else felt this way. I barely go to work. My daily life seems to be me sleeping most of the time. There are times when I feel alright; pain is tolerable at a 1-6 for me. Last 3 weeks it's been anywhere from 6-9. Not sure why it's flared up, but it is very uncomfortable and I don't know what to do!
I have had a long list of tests: 2 EGD's, colonoscopy, MRI's, another scope with Ultrasound, capsule endoscopy, ultrasounds(too many of those), MRCP with dye, liver biopsy, and countless blood tests. Most came back inconclusive, with the exception of the blood tests which came back with elevated liver enzymes. The other test that had some results was the endoscopic ultrasound; showed that I had stippling on my pancreas, doc said it looked like I had pancreatitis, but I don't??!! Not sure what to make of that. Liver biopsy showed that I had a fatty liver, diagnosed with NASH (non-alcoholic steatohepatitis. I also had the stomach emptying test, which showed I had gastroparesis. Been on several drugs, mainly for the gastroparesis and it just made things worse. They were basically to help the motility of the food by causing the intestines to spasm to move the food along (something like that anyway). Have not found any meds that work yet. I used to be on Elavil, didn't notice anything. I have been on morphine and it made things worse. Been on Dilaudid, helped take the edge off, only when it was given by IV in the ER, but it also caused me to throw up a lot! Was given the pill form and it did nothing for the pain. I do take Ibuprofen 800mg for the back pain, it helps a little. Tried Prevacid...nothing. Narcotics generally tend to make it worse.
I have tried lots of things. Even tried acupuncture...nothing unfortunately. I was really hoping that would work. The pain is so excruciating that I cannot have anyone touch around my ribs and around my back (no massages for me!). Hurts worse after being touched, esp breast bone area.
Anyone found a diet that worked? Being sent to another GI doc for a second opinion, UC Davis this time. Hope everyone gets the help they need soon! This is horrible! Good luck!
Darlene
Reply to this
Darlene,Have you ever had your home or apartment tested for mold. I was getting ready to have a sphincterotomy and found antibodies of mold in my blood. My house had mold:Aspergillis... main one which cause GI problems. I am a RN and never would of thought of this. I have suffered so long. It is worth a shot before letting a Dr. cut on you. You must find a good Scientist though. Many don't know what they are doing and take your money.
Reply to this
Jan, I haven't, but I have moved a couple of times. So I didn't even consider that. I definitely don't want to be cut unnecessarily. Do you still have pain all of the time or did you find that the mold was the root of your problem?
Reply to this
Darlene,
I have no pain at all now. None! They even considered IBS with this. You need to find a good enviromental Dr. for this. There are few in the U.S.
Reply to this
Jan,
The docs ran several panel and several times to rule out heavy metals and molds/allergens. Came back clean for the most part. Some metals, but it's mainly due to my liver not filtering as well as it should. It's not doing so well...I can feel it. Shouldn't be able to feel that, at least I don't think so. Anyway, I am being scheduled for an ERCP to have all of my ducts cleared of any sludge or stones. Doc is really good and does them on a pretty regular basis when necessary. His rate of pancreatitis is 3% versus what the 30% for the military docs. Hope this works...I am crossing my fingers. If not, then it is onto different things as I will no longer be able to be in the military. Hope all is well with you!
Reply to this
What is the name of the doctor that has that 3% success rate? You mentioned UC Davis, thats where my 17 year daughter was referred to but the doctor there told her pain management was all she could hope for. This website and blog has been a blessing, we have just started searching the internet since her GB removal 6 months ago failed to stop her pain and nausea. Thank you.
Reply to this
His name is Dr. Prindiville. I've only seen him once, but he seemed to be very knowledgeable and has been a GI doc for some years. He is located in the Sacramento UC Davis GI department, off of J Street. What level is her pain at? And where is it located? The reason I ask is that it makes a difference on how some doctors treat an individual. Your daughter is way too young to be going through this! I hope she gets a good doc and soon! It took me a year and a half before I saw a doctor who could offer me something. Good luck!
Reply to this
I HAD MY GALLBLADDER REMOVED TWENTY YEARS AGO I HAVE SOD I HAVE HAD THREE ERCPS PAIN WORSE EACH TIME I HAVE HAD ALL TEST AVAILABLE. I WAS TOLD THERE IS NOTHING THEY COULD DO FOR ME GO HOME LEARN TO LIVE WITH THE PAIN . HAS ANYOME EVER CONTACTED A LAWYER TO SEE IF ANY MALL PRACTICE CAN BE BROUGHT AGAINST THIS PROBLEM.
Reply to this
DAVACET WORKED GREAT FOR SOD PAIN. ONE PILL A DAY PAIN ALL GONE AWAY. AND THEN THEY PULLED DARVACET FROM THE MARKET NOW PAIN IS BACK AND ALL I HAVE IS TYLENOL. SIGN THE PETITION TO BRING DARVACET BACK. WHY HASN'T THERE BEEN A MEDICATION MADE FOR US THAT SUFFER FROM SOD AFTER ALL OF THESE YEARS. ONE DOCTOR TOLD ME SOD WON'T KILL YOU,BUT YOU WILL JUST BE IN PAIN ALL OF THE TIME FOR THE REST OF YOUR LIFE. WE NEED A MEDICATION TO RELAX THE SPHINCTER MUSLE AND NOT UPSET OUR STOMACHS.
Reply to this
God led me to this site today. Have been sick since this past Feb. and just got back from Mayo in Jacksonville with a follow up appt. to come. I know this is what I have and I think he does to as he was talking about my sphincter and doing the MRCP and ERCP. I have not been able to eat and am currently on TPN feedings for 10 hours a day. Thank you for your site, your bravery, and for you encouragement to all of us who are still searching. And most of all thank you for using this site as a tool to help others in need. God bless you and your family.
Reply to this
THEY GOT NOTHING FOR SOD THEIR STROKING US. SOD HAS BEEN AROUND FOR ALLMOST TWENTY YEARS THEIR TREAMENTS DON'T WORK AND THEIR NOT EVEN MAKING A NEW MEDICINE FOR US. THEIR TRYING TO PUST OFF OLD MEDICINE LIKE CALCIUM BLOCKERS AND SPASMATICS AND THEY DON'T WORK DARVACET WORKED AND ITS GONE
Reply to this
Bob - I was diagnosed in 2009 with SOD and was well managed on medication. However I decided to have surgery to put an end to my pain forever. So far so good. There are options out there - you just have to find the right doctors who want to help. That's half the battle. Keep fighting.
Reply to this
Joyce, what surgery did you have? I have type III SOD, and had an ERCP with sphincterotomy in May, I have had weird spasms since and was told this is part of the healing. my original pains are starting back up.. I have other symptoms that I also get that include bad stomach aches/pains cramping and boughts of diarrhea. sometimes the stomach pains get almost as bad as the pancreatitis I had after my ERCP's. guess you could say I got almost 6 months of relief from the pain. Anyways I am thinking of having a transduodenal sphincteroplasty.. was wanting to hear from anyone that may have had this procedure. I had such great relief from the stomach pain and RUQ pain that I want it back..
Reply to this
I as well went ahead with the ERCP and sphincerotomy. So far, so good. I do have some soreness and large meals are not good, but other than that, I feel great! I couldn't do anything...walking hurt! I wish I would have done it sooner. They also found some stones and sludge. I hope that everyone can find some relief! This is no way to live! Like Joyce said "you have to find the right doctors..." They are out there!
Reply to this
I have been recently diagnosed with SOD. It has been a struggle to get this diagnosis. I had my gallbladder removed in 2005. The surgeon told me at that time I had a bile duct dysfunction, but gave me no indication that that I would need follow-up care. In 2009, my husband and I were on an airplane traveling to Las Vegas. I had a terrible flare-up of debilitating pain. Our trip was nearly ruined by this unknown cause of pain. I returned to the same surgeon who ordered a CT, of which nothing was found and he told me "I am sorry there is nothing I can do for you." Since 2009 been dealing with abdominal pain, constipation/diarrhea and tried to eliminate causes to which I could find no common trigger. In July 2011, had similar episode of the pain in 2009 and went to OB/GYN who ordered a battery of tests, of which, nothing was found. He says "there is nothing I can do for you." I am going to refer you to GI doctor, Dr. Rofail, Richmond, IN. He finally gave me a diagnosis of SOD. In 6 years, I am so glad to have a diagnosis!! He has me on medication called Librax and a Irritable Bowel Syndrome diet. I can say I feel better than I have ever felt, but still have flare-ups and the medication makes me so thirsty and a double dose puts me to sleep. I have read about the surgery and am very hesitant to undergo such a risky procedure. Please share comments with me to this blog or find me on Facebook, Jo (Lizak) Shaneyfelt
Reply to this
I use Librax also and I find it helps as a preventative. It also helps me to take beet pills, and Dr. Oz's flat belly shakes in the morning. It seems to keep me out of the emergency room.
Reply to this
Hi , I am 37 Years Old and for the past year anda half i have been suffering with what i am thinking and hae been told by the 4th gastro doctor i seen is that i have this . I had My gall bladder taken out over a year ago and it had no stones just non functioning i was so severly sic they thought thats what it was , here i am a year and a half later still dealing with a constant BURNING type horrible pain and diareha . One Gastro keptgiving me PPI's WHich did not help cause it doesnt feel like heartburn , its very severe . I was just sent for a Cat scan , will this show some answers as to if i have SOD?? I also had bloodwork . I am very scared cause i have been in a major flairup for almost two weeks of intermitten nausea and pain , its horrible . Anyone with any advise please contact me and reply . Thank you
Reply to this
I am glad I ran across this site!! (at 2:20 a.m.) I've been dealing with pain and nausea off and on for quite some time now! I have had MANY tests done. At first one doctor thought it was my gall bladder but all the tests came back negative. The first doctor did say he felt there could be something wrong with one of my pancreas valves. Long story short, I am about to see a doctor in Cincinnati, OH for an ERCP, manopentry and possible Sphincterotomy. I have to say, I am nervous! But none of the medications the first doctor prescribed, were working. The pain and nausea seems mild off and on daily but I have days where it becomes extreme and keeps me in bed. I take anti nausea meds and pain medication when this occurs. The pain will be in my right upper abdomen, in the middle, to the back. Sometimes it is a throbbing pain, while other times it feel like shooting sharp pains. This condition has caused me to lose my job while I was on Family Medical Leave Act papers from which I recently filed a complaint against. I only know of two other people with this type of condition and one of them is now on full disability. I really don't want that to happen to me and pray this procedure helps with feeling pain free and nausea free. I hope to meet more people with this condition.
Reply to this
I can't believe how many of us there are suffering from this disease. I was beginning to think i was some kind of alien!!! Of course after searching for over a year and 4 hospitals..make that 5, i was diagnosed this year in January, Happy Freakin New Year!!! I just had my last ERCP done Sept. 8th in Indiana (I live in Ohio) and September 9th I was in the hospital with pancreatitis. Still feeling ROTTEN! and trying to work fulltime. yes, that's a lovely combination. Has anyone applied for disability with this disease? I have missed so much work since June I've used up all vacation and sick days. Now there's NO off time to take. I'm single, and no income means no bills paid, and of course none of our lovely bland soft food!
Also, I went to see a Dr. in Cincinatti last week for another opinion and he's telling me no more ERCP's. my pancreas had actually formed an edema around it and he said according to the CT Scan it's very scarred. I was also told there is nothing more can be done. If I lay on this couch much longer they're going to draw a white line around me!! I wish you all luck and lots of prayers. any suggestions would be great and btw....THANK YOU FOR THIS WEBSITE. SOD Aliens Unite!!! LOL! Gotta laugh...beats crying. Have a good day!
Reply to this
I am so sorry you have been through all of that. The pain is the worse and no one undertands unless you have been diagonised with SOD. I have a wonderful husband and two children. I am sorry you are going through that alone. I have been really relying on my faith and my church family. Incresing your faith can do wonderful things for you. Let me know if u need someone to talk to.
God Bless and Prayers
Reply to this
I am new to this blog. I have had my gallbladder removed, one sphincterotomy and still suffering. I have to believe that with prayers and faith that god will heal us. I have two small children, aged 2 and 5 and I will not give up. I am going to enjoy there lives pain free someday. And has we all know we will never take our health for granted.
God Bless and prayers to all of u
Jessica
Reply to this
My 22 year old son was diagnosed with SOD just over a year ago. He has been suffering with the daily pain for over two years. He is in the hospital now after his second ERCP with pancreatitis. I don't know what to do for him. Watching your child go through this is horrible. He has been it the ER for pain management about every 5 weeks. He is trying to go to school and find a career path But it almost seems hopeless . He can not be a medic or firefighter if he is on narcotics . We are from Columbus Ohio and I think our. Next move is Indiana university. We have been told they are the best in our area. I am at a loss. I don't know what to do next. It is horrible to see the pain that you all go through. Brandon has type 3, all lab are always normal, he only gets pancreatitis with an ERCP, he is just in con rant pain. And right now I want to hit the nurse that just came in an said he really didn't need to be on this amount of pain meds. Any advice please let me know.
Reply to this
I was suffering 4 years (type 3) and recently my condition are improving.
I had one ERCP - dr. Cotton. From my experience you need to be on amitriptyline (at least 10 mg/day).
Try to avoid any stress and rest well.
Try to sleep longer than usually. Try to avoid any constipation - regular every day bowel movement is necessary.
I also went for food intolerance test.(they found allergy to cow's milk, yeast, white egg)
Now the diet - I found that alkaline diet works with me. You can search on internet.
I will list food which goes well with my sphincter: Balkan style plain sour yogurt, pears, whey protein, green salads - apple cider vinegar and olive oil as dressing, leeche jelly.
It is very complex disease and I hope something will help your son.
Reply to this
Hello Everyone,
Been reading posts on this website for awhile and all have been very informative. Had gallbladder removed Feb of this year and started experiencing SOD pain (type 3) just after. Went to several GIs and had all the fun tests and procedures like everyone here has. But I have one major difference that I don't see mentioned anywhere. When preping for my colonoscopy I had to stop taking my multivitamin supplement 5 days prior because it contained iron and vitamin e which was a no-no for the procedure. After about 2 days with no vitamin I started to feel incredibly better and the SOD pain started to go away on it's own. I went back and forth with the vitamin for a few months but I feel worse when I take them - dizziness, cramping, IBS, fatigue, trouble sleeping. Very weird. I could take multivitamins no problem before the gallbladder came out, but for some reason now I hyperabsorb these man-made vitamins and my body has a hard time dealing with them.
I still have loose stool because of extra bile in my system and can lack iron from time to time because of this. But anything I try naturally or medically (vitamins, herbs, minerals, medicine) to help with the loose stool doesn't work and I feel whacked out with all the same weird vitamin symptoms again.
Has anyone else experienced this? Any doctor reading these posts ever heard of this?
It's driving me nuts!
It is 3 months now with no multi-vitamin supplement and 95% of the SOD pain has gone away but I still have loose stools and can't seem to take anything to help with that.
Any help or comments will be much appreciated. Thanks!
Reply to this
Hi Victoria,
I have experienced this before and have stopped alot of my vitamins. The docs that I talked to thought that it was probably because I couldn't break it down. I was vomiting it back up, nausea, diarrhea etc. They said it was most likely my body wasn't able to digest it because of the lack of bile/pancreatic acid and that was why my body wasn't having any of the vitamins I was taking. I have alot more triggers so this was just one of them, but you may be experiencing trouble with your bile being too viscous (thick and mucousy) and not being able to digest the pills because there is no chemical to break it down. I would look into asking your doctor about a bile absorbant and then taking bile pills to give your body good bile that will help you digest better.
Hope this was helpful.
Alexis
Hope that helps.
Reply to this
Hello Alexis,
Thank you for your post! But I seem to have the opposite of what you experienced.
I can break the vitamin down just fine with no nausea or vomiting - I just hyperabsorb the vitamin, meaning I absorb 100% of it very quickly. I can't even take children's vitamins because they are too strong for me. And these mega multivitamins on the market right now with 1000% to 5000% of some ingredients send me into toxicity levels. That's what causes the dizziness, cramping, fatigue, sleeplessness, extreme headaches, etc.
I'm guessing that's why most of my SOD pain has gone away since I stopped the vitamins - toxic levels are no longer being pumped into my muscles.
I'm trying to stop the daily loose bowel movement but this hyperabsorbtion is making that rather difficult.
Anyone have any thoughts or ideas let me know.
Thanks!
Reply to this
Good info regarding the vitamins. I am now wondering IF Prescription Vitamin D could have an effect? It's done well with me but I don't take it weekly as prescribed,?? Thank you
Reply to this
Hello SOD Community,
I am seeking answers to my symptoms that keep me in a state of misery. a 8 year post-cholecystectomy patient. I began experiencing an intolerance to narcotic pain
killers 6-8 months after my gallbladder was removed. Anytime I would take codeine or any other narcotic drug, I would get the most horrible pains in my upper gastric area right in between my ribcage. The pain radiates throughout my back. I also get very nauseous and sometimes have a bout with diarrhea afterwards. I've noticed that the last couple of spasms began after I started having a feeling of emptiness or hollow sensation in my stomach? So I've been able to somewhat predict when the pain would strike and plan to be at home for most of that day
Reply to this
I feel your pain. You are not alone, their are thousands of people suffering like we are. I had my gallbladder removed on July 3 and continued to have constant epigastric pain, chest pain that radiates through to my back everyday since. I have been diagnosed with SOD. I had a sphincterotomy on Sept. 16 which has provided me with no relieve. Taking some diff. medications that have helped some lately. I actually have an appt. tomorrow with my SOD doctor at I U Medcenter in Indianapolis. I know how you feel that it has taken over your life but you cannot let it. Let God be there for you and lead you through each day. When I find myself in severe untolerable pain I ask for him to ease my pain and he does everytime. Ask your family to pray for you and that you receive guidance on what to do next. Praying for you.
Jessica
Reply to this
Are there ANY success stories out there? Any????? Has anyone had an ERCP w/ sphincterotomy and found relief?
I had ERCP with spincterotomy about 4 years ago and got limited relief. I gained back about 10 of the 15 pounds I had lost, but it took almost 3 years to do so. And the pain in my right side got better but NEVER went away.
The only time I ever felt "good" was when I had a virus that caused loose bowels for 3 days. After that, my side, stomach, and upper back didn't hurt for almost 6 weeks. Then I got a UTI, they put me on Macrobid and Motrin. Within 3 days I was back in the ER, in agony with symptoms of pancreatitis, even thought my labs were normal.
Lately, I have been having fewer bowel movements, leading to more SOD pain, on top of what I get if I eat anything sweet or have coffee. I finally gave up coffee and sweets 3 weeks ago because I just can't handle it anymore.
I saw the specialist yesterday in FL that did my ERCP and sphincterotomy and he wants me to have an EUS next week and then send me to Indiana for Manometry of the pancreas.
I have never gone the route of drugs. Not pain-killers, not anything for spasms, not Amitriptyline
... nothing. I've just eaten small meals, haven't had a drop of alcohol in 5 years, never smoked and limited sweets.
I think the Macrobid and Motrin really messed me up. I never take antibiotics or anti-inflammatories. I barely take Tylenol.
I had my GB removed in '96 (keyhole surgery) and my thyroid removed in '04. I think the thyroid is a big piece of the "SOD puzzle", because even though my GB was removed in '96, I never had problems like this until they took my thyroid.
While I don't agree with the Mayo clinic and their belief that SOD is a unicorn (doesn't exist), I do agree that constipation makes it much worse (hence, their low "motility" theory).
Reply to this
Hello , my name is Jessica. I have been diagnosed with SOD, and had my 2nd sphincterotomy a week ago, which I did get pancreatitis from. Still having same symptoms as before, wondering if any can tell me if this is normal?
Reply to this
Hi everyone, I have had 8 ERCP's all with sphincterotomys, one with a stent and two with botox injections. I have wrote here before about every medication I have tried obviously resulting in failure. In Jan 2011 I had my gallbladder removed and all hell broke loose, in Feb 2011 I had my first ERCP w sphincterotomy and I got severe pancreatitis, however that procedure lasted me until August of this year. From August until this very day I had 7 more procedures. This disease is a nightmare.. I tell people unless you have this disease you can never fully understand. The botox injections have given me a better quality of life, i am able to eat a meal which took 9 months to happen. It does not last long, but 2-3 months of a somewhat decent life, most of us can say is a God send. I do take cymbalta 20 mg at bedtime for the pain also, however I want to come off of it because I do not think it is helping much anymore.. It is a long journey but I just wanted people to know the botox injections do help for a little while.
Reply to this
So sorry to hear that you have suffered for so long with little relief. I cannot believe what an awful disease this is and most people have no idea what it is. I have two small children and have a very hard time caring for them. I am so depressed most of the time because the pain is unbearable. I will pray that God sends you the strength to get through this. And continues to heal you.
Reply to this
Thank you I hope the same for you. It is hard, but I try to look at it as there are people out there who are much worse off then me. It is extremely hard but I have no choice... Good luck and feel well. Happy New Year.
Reply to this
Thankyou. I feel the same we have no choice but to keep going. If you would like to discuss SOD further and medications. Email me anytime at jestully3@yahoo.com
Reply to this
Thankyou. I feel the same we have no choice but to keep going. If you would like to discuss SOD further and medications. Email me anytime at jestully3@yahoo.com
Reply to this
I AM TRYING TO GET SOME IMFO ON BOTOX INJECTIONS.
Reply to this
SPHINCTER OF ODDI DYSFUNCTION IS A TERRIBLE DISEASE I AM HOPING THAT SOMEDAY THEY MAKE A MEDICATION THAT RELAXES THE SPHINCTER MUSCLE,AND HELPS WITH THE PAIN AND DOESN'T UPSET OUR STOMACHS. I BELIEVE THAT HYDROCODONE CAN BE USED TO CONTROL THE PAIN IF USED PROPERLY, UNDER A DOCTORS SUPERVISION.
Reply to this
Howdy there. That's just some really nice web site. I enjoy it a lot and will show up here much more regularly from now on. It really is all about the looks anyway, therefore I believe your site rocks in that part. I am learning for a term paper and the information right here has assisted me a great deal Non-Plagiarized Term Papers
Reply to this
I haven't posted since November but came back to say that I started taking Pearl probiotics and they have helped ENORMOUSLY!!!!
Reply to this
That is some great material written right here. I appreciate your good content. I 'm publishing a research paper with regards to national healthcare and your site helped a great deal for Argumentative Essay Help
Reply to this
I've found this website great for my daily life. It is especially amusing and exciting. By the way, did anyone see the Australian Open women final currently? That had been quite a fantastic match. Maria Sharapova got her ass knocked by a young girl out of Belarus who will be the world number 1 following the win. That is certainly something. The next day is actually destined to be an awesome day for tennis. Hence whoever's interested by sure to check it out cliff notes.
Reply to this
It's unfortunate that this seems to be an overlooked problem. I
continued to have severe attacks after my gallbladder was removed in
June 1996. After several doctors, emergency room visits &
hospitalizations I finally found Dr. Sung Yang @ Beaumont hospital,
Royal Oak MI in 2003. After 7 long years, problem solved w/ the
sphincterotomy procedure. Fast forward to Jan. 2012, I have to have
the procedure repeated. Dr. Yang did tell me in 2003 that it might not
be a permanent fix & he was correct. I'm scheduled for 2/1/12.
My symptoms were quite different this time, more like IBS than
gallbladder attacks so it never occurred to me that Oddi was the
culprit. A HIDA scan w/ CCK confirmed Dr. Yang's suspicion that the
Sphincter of Oddi is malfunctioning, again.................
Reply to this
I BELIEVE THAT THE DRUG COMPANIES NEEDS TO MAKE A MEDICATION THAT RELAXES THE SPHINCTER MUSCLE AND RELIEVES THE PAIN AND DOESN'T UPPSET OUR STOMACHS.THAT IS WHY WE ARE ON THESE SITES FOR SO MANY YEARS AND WE ARE STILL SUFFERRING WITH NO ANSWERSS TO THIS TERRIBLE DISEASE.
Reply to this