SOD Symptoms
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BLOG.THESPHINCTEROFODDI.COM: SOD Symptoms
Pain or "tightness" behind the breast bone radiating around to the back (usually center of back, or straight through). This is what my wife suffered with everyday.
The major presenting symptom in patients with sphincter of Oddi dysfunction is abdominal pain.
Pain/Pressure under rib-cage that can radiate around to your back. The pain is characteristically sharp, postprandial, and located in the right upper quadrant or epigastrium. The pain may be associated with nausea and/or vomiting, may last for several hours, all day, or everyday.
Fever, chills, and jaundice are uncommon symptoms.
Patients may also present with acute recurrent pancreatitis.
SOD can be tricky to diagnose because the symptoms mirror other common, more well-known issues such as: GallBladder dysfunction, IBS, Costal Chondritis, GERD, Esophageal spasms, pancreatitus, and much more.
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How is your wife doing now?
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Heartburn like pain, shooting pain from lower sternum through to back, nausea, occasional sharp pains on upper right quadrant of ab region, did I mention nausea?? Yogurt seems to be a trigger. Fatty foods are OUT.
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Great piece, many thanks. Can you make clear the second part in a very tiny far more detail be sure to?
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My daughter's pain is always worse after she eats. Is this true for most of you?
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Yes--usually sometime within 15-45 minutes after eating--sometime sooner. Had sphincterotomy late October--much, much better!
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Thanks for the information.
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Hi, fellow sufferers! My journey is almost exactly as the one experienced by the authors of thesphincterofoddi.com with a few extra twists.
I'll post my symptoms while they are "fresh". Background of light nausea wakes me up from my sleep early AM and lasts for a few hours or all day, every day. Sometimes it gets worse along with the pain or after meals. Usually gets better by the evening.
Pain is very similar to the heartburn. So similar, that they put me on heartburn medications for a year and finally did a Nissen surgery (in a foreign country!). Later I was told here in the US that I might've not needed that surgery!!!!!! Other pain is burning or searing right under the breastbone, center, left or right radiating to the right shoulder and right shoulder blade in the back. Sometimes it also radiates to the left breast. The pain is not awful but coupled with frequent nausea it makes life not worth living. I can't even play with my kids, work suffers, relationship suffers. I had all possible tests, cardiac, gastro and musculosceletal workups. They even labeled me with anxiety and put on an antidepressant for 1.5 years now. I even went to a psychologist! I have just had my gallbladder removed and to my tremendous dismay and disappointment the pain was exactly where it was as soon as the painkillers wore off. Although the surgeon at the U of M told me that there is a 50/50 chance of the surgery working. My nerves are like tight strings because of this problem. It's been going on for over 3 years now. Fortunately I'm being treated at the university of Minnesota by the top SOD specialists. So the hope is still there. Good luck to everyone and find yourself a GOOD doctor. The morons at Mayo even told me "how well do you want to feel? You are already 36." Don't go to Mayo for this problem they will label you "functional dyspepsia", that's their policy and you'll be wasting your time there. Go to a good medical university.
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What are they doing for you? What has helped?
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Do you see Doctor freeman, I see him also. He is a good doctor. So is Arain. Avoid atom he is the one that nearly killed me. I now gets bouts of pancreatitis all the time. Are you in the SOD study? I agree with about the Mayo they suck. I went there for a second opinion and they told me that I should take tyenol for acute pancreatitis. I went off on them.
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Yes, Dr. Freeman is my doc. They removed my gallbladder 3 weeks ago, but it's evident that it didn't help. Now the pains are even a little worse as well as nausea. I have attacks of pain almost daily. I can barely work and my work is very demanding, although it's a desk job.
Dr. Freeman wants to wait for a few weeks to say clearly that it's not aftereffects of the surgery. It's very hard to wait. The only thing that gives me relief is nitroglycerin.
Attam did my EUS.
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I went to the doctor today. My primary left her practice two weeks ago. So I thought I would go down to the University and see their primary docs. That was a joke. He told me exercise 4 or more hours a day as he said that I am not going to get better sitting on the couch. Then he wants to see me in two months. I am so fed up with all of this. Since my last attack of precreatitis 3 weeks ago the vomitting and pain is horrific. I see Freeman on the 8th but that is nearly 3 weeks away. I was doing so much better until then. This is getting really old and I dont know how much I can take. I honestly have thought they are going to kill me before they get me better. I nearly died from dehydration. Freeman gave everyone strict orders to admit after surgery and Attom sent me home so when I needed fluids nobody sent it to my home as I had the feeding tube. I went 9 days without anything all becuase everybody thought I was in the hospital and did not send it to me. I called the clinic everyday. It nearly cost me my life, just because of poor communication between everyone. I have been in tears all day. Freeman is a great doctor but there is not alot of follow up care. I Cant keep going into the hospital getting admitted and they act like it is no big deal. if any of you need anything please feel free to contact me. I can try to help some of you that are going through this. It can be a terrible road to go through. You know that all syptoms are real but it takes a doctor that really listens to you. my email is melmarsh007@gmail.com
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Just wanted to add that I visited 13 different doctors in 3 countries for this terrible quarter-inch piece of flesh.
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I agree 100 percent, this disease is like waking up to a nightmare everyday! I recently had my 2nd sphincterotomy on Dec. 12th and have had no relief. Wondering if it is my pancreas? Have you been checked for that? What surgeries have you had done? Sounds like yours started at the age of 33. Mine started at the age of 32 and have had it for 6mths, cannot imagine 3 years. Glad there is a site for us to talk to each other. Feel free to e-mail me at jestully3@yahoo.com if you would like to discuss SOD further.
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Yeah, they checked me for that with the EUS. Clear.
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I WAS VOMITING RAW BILE EVERYDAY FOR FOUR MONTHS. I FINALLY GOT MY SPHINTER OF ODDI DYSFUNCTION UNDER CONTROL.
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Louis I cannot imagine vomiting bile for 4 months! I only did that once when I got pancreatitis from a ERCP!
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Roman what do they do to check your pancreas? And yours was fine?
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They did Endoscopic Ultrasound. It's probably the most sensitive test for that.
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I WAS SO SICK FROM THE BILE EVERYDAY I CHECKED INTO THE PSYCHE WARD BECAUSE I WAS SO DEPRESSED I DIDN'T WANT TO LIVE ANYMORE. SO EVERY MOURNING I BELGED THE BILE INTO THREE CUPS TO SHOW IT TO MY SHRINK WHEN HE CAME IN. HE TOLD ME HE WOULD GET ME HELP. HE REFERRED ME TO THE BEST GASTRO DOCTOR IN MY AREA AND HE DID TENS OF THOUSANDS OF DOLLARS WORTH OF TEST ON ME. AND WHEN THIS GUY GOT DONE DRAINING ME. HE REFERRED ME TO A GASTRO SURGE0N AND HE DID HIS TEST AND GOT HIS MONEY. AND THEN HE TELLS ME HE WOULD DO A GASTIC BYPASS ON ME A WEIGHT LOSS SURGERY. PRIOR TO ALL OF THIS I HAD ERCP WITH SPHINCTERODOMY THREE TIMES AND I GOT WORSE EACH TIME. I WENT BACK TO MY FAMILY DOCTOR AND HE PERSCRIBED DARVACT AND GUESS WHAT LITTLE BY LITTLE I STARTED GETTING BETTER THE BILE STOPPED THE PAIN STOPPED. AND I STARTED TAKING A PREVICET EVERY DAY AND I FELT EVEN BETTER AS LONG AS I TOOK THE DARVACET EVERYDAY AND A PROTON PUMP INHIBITOR LIFE WAS GOOD I WAS DRINKING COFFEE AGAIN AND EATING JUNK FOOD AND TAKING MY VITAMINS AND HERBS.AND THEN IN NOVEMBER OF 2010 THEY PULLED DARVACET FROM THE MARKET. I WAS CRUSHED BECAUSE I KNEW WHAT WAS GOING TO HAPPEN. THREE WEEKS LATER THE BILE STARTED ALL OVER AGAIN. MY DOCTOR PERSCRIBED VICODIN BUT IT JUST MADE THINGS WORSE IT WAS MAKING ME SICKER. THIS WENT ON FOR EIGHT MONTHS AND FINALLY I FIGURED OUT A SYSTEM AND NOW FOR GOING ON FIVE MONTHS I HAVE IT UNDER CONTROL AGAIN. AND I FEEL PRETTY GOOD. THANKS GOD
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Louis, can ask what you do now to keep it under control? So thankful that you are doing better. God bless you!
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HELLO JESSICA, IF YOU WOULD LIKE TO HEAR MY WHOLE STORY AND SYSTEM. I BLOG ON ANOTHER GREAT SITE CALLED PANCREAS TOMORROW UNDER MY NICK NAME BOB AND HOW I CONTROL MY SHINCTER OF ODDI DYSFUNCTION. JUST ARROW DOWN TO THE LAST BLOG AND YOU WILL SEE IT. IT TOOK ME EIGHT MONTHS TO FIGURE THIS OUT AND IF I FOLLOW IT TO~ A ~T IT WORKS VERY WELL FOR ME. I AM GETTING READY NOW TO START MY DAILY PROCESS IF I DON'T THE SPHINCTER MUSCLE WILL SRART TIGHTENING UP. I JUST STARTED HAVING A CUP OF COFFEE IN THE EVENING WITCH I LOVE. AND JESSICA THIS MAY NOT WORK FOR ALL AND SOME MAY NOT BE ABLE TO TAKE THESE MEDICATIONS. AND AS ALLWAYS WHEN EVER YOU ARE TRYING ANY NEW PLANS OR MEDICATIONS YOU SHOULD ALLWAYS CONSULT YOU DOCTOR FIRST. GOOD LUCK
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Thanks Louis. I will check out your other blog also. I pray that your SOD is under control. My daughter goes in for a ERCP in a couple of weeks. I hope it helps. She is only 19 and in terrible pain all the time.
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Hi Carol, will be praying for your daughter. This is a terrible disease to live with at 32 with two small children. I cannot imagine starting it at 19. Please let us know how she is doing.
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Hello Jessica: I am sitting in the hospital with my daughter as she had ERCP without the dye, but they cut her sphincter. She had a great deal of swelling so the doctor is not sure if the surgery was successful or not. She has developed pancreatitis so she is in a great deal of pain. Don't know what will happen from here. It is scary. She is so young. I hope you are doing better with things and that you are not in pain. The pain causes all of us to be depressed! I can't imagine how my daughter feels with the daily pain--and you and all the others. I pray that all of you get some relief. Take care and thanks for your concern. Blessings, Carol
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HELLO CAROL, I HOPE YOUR DAUGHTERS PROCEDURE IS A SUCCESS AND HER PAINFULL JOURNEY HAS ENDED.KEEP US POSTED, LOUIS
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I am sitting in the hospital with my daughter as she had ERCP without the dye, but they cut her sphincter. She had a great deal of swelling so the doctor had to quit and the surgery was not successful so we are going to have to go through this again. She has developed pancreatitis so she is in a great deal of pain. Don't know what will happen from here. It is scary. She is so young. I hope you are doing better with things and that you are not in pain. The pain causes all of us to be depressed! I can't imagine how my daughter feels with the daily pain--and you and all the others. I pray that all of you get some relief. Take care and thanks for your concern. Blessings, Carol
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I LOG ON TO THIS SITE EACH DAY BECAUSE I WANT TO READ EVERYONES JOURNEY WITH SOD. I HAVE SOD NOW FOR GOING ON TWENTY YEARS, AND STILL I DON'T SEE ANY END IN SIGHT. EACH BLOG I READ IS IS SIMILAR TO MINE. MOST DOCTORS I HAVE SEEN WOULD NOT EVEN TALK TO ME. THEY WOULDN'T EVEN OFFER ME AN ASSBURN. I AM CONTROLLING MY SOD FOR ALLMOST SIX MONTHS. MY SOD GOT SO BAD THAT I WAS BELGING RAW BILE EVERY DAY. I WOULD LOCK MYSELF INTO A ROOM AND I WAS SO SICK AND DEPRESSED I WOULD NOT TALK TO ANYBODY. THE DOCTORS TOLD ME THERE WAS NOTHING MORE THAT THEY COULD DO FOR ME. AND IN REALITY THEY HADN'T DONE ANYTHING FOR ME. THATS WHEN I HAD TO TADE MATTERS INTO MY OWN HANDS. DON'T EVER GIVE UP LOUIS
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I have had SOD type III for 7 years. It started when I had my gallbladder removed. I am suffering with the same symptoms that are mentioned in the blog. I have had numerous ERCP's, sphincterotomy and had so many stints placed in the bile duct to count. I am in chronic pain and fed up with the doctors due to limited research that is available that will help with all SOD suffers. I have been off work for over a year. I have lost jobs due to missing to much work because of this problem. I am a dedicated and hard working person but until I get this resolved I will not be a half of a employee when I can not give a 100% to a employeer. I am so depressed and feel like I do not want to live this life anymore due to the pain I
am in on a daily basis.
I was scheduled for a biliary bypass surgery today and once I got to the hospital my surgeon said that he felt that this surgery might not be that best plan for me. It is a 50/50 chance it would work. OK would you think he could have figured this out during my consultation in December not the day of surgery. I have to go see another doctor to see if there is anything else that maybe done. You think you are close to being fixed and there is hope for you and then they take it away in a matter of minutes. It was comforting to see other people that has the same problems as I do. God Bless to everyone.
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DEAR SHELLY, I WAS TOLD SEVERAL YEARS AGO BY A GASTRO SURGEON THAT HE COULD DO A GASTRO BYPASS ON ME ALSO. HE COULD NOT GUARANTEE THAT IT WOULD HELP ME EITHER. I DID NOT UNDERSTAND HOW A WEIGHT LOSS SURGERY COULD HELP ME WITH MY SOD PAIN, SO I REFUSED. IT SURE WOULD BE GROUND BREAKING IF IT DID WORK. IF YOU WOULD LIKE TO READ HOW I AM CONTROLING MY SPHINCTER OF ODDI DYSFUNCTION I BLOG ON ANOTHER SITE CALLED (PANCREAS TOMORROW) I BLOG UNDER MY NIC NAME -BOB- ARROW DOWN TO ALLMOST THE VERY LAST BLOG AND THERE YOU WILL READ HOW I CONTROL MY SPHINCTER OF ODDI DYSFUNCTION. WHAT CAN YOU LOOSE ITS WORTH A TRY. YOU HAVE TO FOLLOW IT TO~A~T. IN ALL OF MY YEARS OF BATTLEING THIS BEAST I REALLY HAVE NOT SEEN TO MUCH HELP FOR PEOPLE WITH STAGE THREE SOD. THEY NEED TO MAKE A MEDICATION FOR US THAT RELAXES THE SPHINCTER MUSCLE AND HELPS THE PAIN AND DOES NOT UPSET OUR STOMACHS. GOOD LUCK DON'T EVER GIVE UP ~ THIS IS A TERRIBLE WAY THAT WE HAVE TO LIVE.PLEASE KEEP EVERY ONE INFORMED ON YOUR PROGRESS.
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I JUST MADE A DONATION TO THIS WONDER FULL SITE. WE HAVE TO KEEP THIS SITE UP. AS,THERE ARE NOT TO MANY SITES LIKE IT THAT KEEP US INFORMED OF ANY NEW PROCEDURS OR MEDICATIONS AND TO LET PEOPLE KNOW THEY ARE NOT ALONE. I SUFFER FROM SPHINCTER OF ODDI DYSFUNCTION AND I KNOW HOW HARD IT CAN BE. THANK YOU, LOUIS
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I am suffering with this awful disease too. I had my gallbladder out one year ago due to low function..no stones. I had trouble right after but then had about 6 good months until this past november. I am getting what amount to gallbladder attacks every time i eat. The food squeezes as it goes down and my back and right side have a horrible pressure pain that is hard to describe. I had an endoscopic ultrasound a few weeks ago and they said my common bile duct is dilated so i am scheduled for an ercp on feb 14. Right now they gave me bentyl and vicodin. I am calling back today because I read that vicodin can actually make matters worse. This is a complete nightmare. I have two beautiful teenage girls and a wonderful husband but I am unable to enjoy anything with this horrible pain. I pray the ercp and mammonetry work for me. I see on here that sometimes it doesn't. I can't imaging living like this for the rest of my life. People lose patience with me and don't understand. I am glad I found this site.
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WHEN I WAS FIRST PERSCRIBED VICODIN IT DID MAKE MY SOD WORSE UNTILL I LEARNED HOW TO USE THEM. DON'T THROW THOSE VICODINES AWAY YOU WILL NEED THEM.
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I feel all of your pain. I know that this can seem like a horrible nightmare. I am also having terrible set backs. I have had 4 ERCP/3 shincterotomys, they ran some more tests last week. I had an MRCP last week and yesterday I had an EUS, and pancreatic function tests. My sphintcer were open as of 6 weeks ago, the test reveal that the sphinter is closes and there is stenosis. I had a scope down my throat for over 3 and half hours yesterday. I woke up during the middle of it. That was horrible. Today I was rushed to the hospital by ambulance. I started puking up bile and blood a bunch of time. They did not even examine me at the hospital. With SOD unless the doctors know what to do many of them with disregard what is going on. They instead dealt more with the guy in the next room to me who drank over a liter of vodka. I know you fellow suffers do everything possible to try to feel better. I can tell you th more support you have it does make things a litter better to cope. It never gets easy, just take one day at a time and dont forget to breathe! I see my pancreas/SOD speacialist on Wed. So I am hoping we can figure out what the next step is. It can sometimes be a crapshoot when you go to the doctor if they dont understand how it affects a person. If you all ever need anything dont hesitate to email me at melmarsh007@gmail.com. I know this website helps me just knowing that there are others out there like and I am not the only feeling like this. God bless all of you and I hope that you are all doing ok or having a better day than most!
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I too have this pain and have been to 9 different specialists and am no closer to finding the source of this pain. Has anyone experienced this pain but without the nausea part? Everything written abour SOD matches what I'm feeling with exception to nausea/vomiting. I'm so desperate to find pain relief beyond percocets. I'm in Utah and could use a strong referral to a specialist out here who understands SOD does anyone have any names they could pass my way? My email address is Giambrone@q.com Thank you so much for any insight and your stories, I know I'm not alone!!!
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I see my top notch specialist on Wed. I will ask him if there is anyone out there. He has prefected the treatments for this disease. I will also look and see what I can find you. I am nausea all the time now but in the beginning I wasnt that much. All my doctors believe that *Dilaudid* is the best pain medication for SOD, it is one of the few that dont make it spasm more.That is what they give me in the hospital but I know there is pill form. Morphine makes me hurt worse. I also use deep breathing which helps. You can always call me at 612.272.3489 or email me at melmarsh007@gmail.com!
Melissa
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My daughter has SOD and not the nausea (Maybe a little sometimes) nor the vomiting. She has finally found a doctor in Nashville, TN. Dr. Pruitt.
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I am praying for all of you. I know this is a horrible disease. My daughter is dealing with it daily as we wait for her to have surgery--again. She is only 19 and I do not want her to have to live like this the rest of her life. All our lives have been affected by this. Don't give up. I know the pain gets to you at times. I have been depressed just dealing with my daughter. At times I can't stand it so I know it is hard for you that have this. We are all in this together. Any information I find out, I will list here. Please do the same. There is a little bit of research going on dealing with SODs. One person put something about enzymes or hormones being the key to this. We will keep trying to figure this out. Take care everyone.
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I completely understand when you say it is hard on the entire family. I am so thankful that I have a great husband that is by my side through all of this. He gets really frustrated and sad too. It breaks his heart to watch me suffer every day. It is really affecting my daughters too, a couple of months ago my 4 year old daughter looked at me with tears in her eyes and said “I don’t want you to go to heaven like grandma Dorothy”, I have spent nearly 80 days in the hospital since July 2011. I feel terrible that my family has to go through this. I am in the SOD study at the University of Minnesota. They are conducting this study to try and figure out what are the causes and what ways are best to treat it. The worst part is the study doesn’t end for 3 years. Once it is over they will compile all their findings. I say prayers for all of you. Finding this support group really helps me. It helps knowing that we are not alone. This disease is like a nightmare that never ends. You are afraid to go anywhere or even eat food most days. If any of you need anything let me know I am always available. I have SOD and my pancreatic ducts are hardening and bile is backing into my liver, I also have brittle diabetes and I get pancreatitis all the time. They think that it is turning to chronic pancreatitis. I will find out on wed since I just had a bunch of testing all this week. I try and stay positive and set goals for myself. It helps me stay sane and have a good outlook or this will tear you apart.
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DEAR MELLISA,YOU ARE IN OUR HEARTS THOUGTS AND MINDS AND WE WISH YOU AND YOUR FAMILY ALL OF THE BEST. THANK YOU FOR THIS INFORMATION. THIS IS WHAT WE HAVE ALL BEEN WONDERING ABOUT,THE STUDY,AND ANY MEDICATIONS THAT WE CAN TRY AND IN GENERAL "HOPE". BUT WE NEED MORE THAN HOPE WE NEED RESULTS. I HAVE BEEN SICK WITH SPHINCTER OF ODDI DYSFUNCTION FOR TWENTY YEARS AND I DON'T THINK I CAN TAKE THE TOLL OF ANOTHER TWENTY YEARS.I BELIEVE IF WE ALL STICK TOGETHER AND KEEP BLOGGING, ASKING QUESTIONS,WRITING LETTERS, AND GETTING INVOLVED AS YOU ARE DOING MELLISA, AND KEEP DEMANDING HELP. AND KEEP ASKING THAT QUESTION, IS THERE ANYBODY OUT THERE? WE NEED THOSE NEW STUDIES, PROCEDURES AND NEW MEDICATIONS.I AM GOING TO START WRITING LETTERS TO~~(THE HONORABLE)MARGARET HAMBURG,M.D. COMMISSIONER FDA 10903 NEW HAMPSHIRE AVE SIVER SPRINGS, MD 20993~0002~~~ AND TELL HER ABOUT OUR DISEASE AND OUR HEALTH CONCERNS. SHE SEEMS LIKE A REALLY NICE LADY. I THINK SHE CAN HELP. MELLISA PLEASE KEEP US INFORMED ABOUT ANYTHING YOU CAN FIND OUT AND YOUR PROGRESS. YOU ARE A RAY OF LIGHT FOR US WHO SUFFER FROM THIS TERRIBLE DISEASE SPHINCTER OF ODDI DYSFUNCTION. "THANK YOU"
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I also forgot to ask if anyone has normal, dark brown stools with this. My problem is the common bile duct being dilated, not the pancreatic one so even though the pain is horrible, so far the stool color is normal although I do get constipated from this condition. Just trying to compare notes with everyone else that his this condition.
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NEXT TIME IN THE MOURNING AT AROUND NINE OCLOCK AM BEFORE YOU FEEL THE SPHINCTER MUSCLE TIGHTENING UP TRY TWO EXTRA STRENGTH TYLENOLS WITH WATER AND CRACKERS AND SEE IF THIS RELAXES YOUR SPHINCTER MUSCLE.
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Does anyone have the horrible upper abdominal bloating and pressure constantly in between pain episodes? I am at my wits end. I am starting to get pressure and pain in the left side now a long with every thing else. I have my ercp this tuesday and it can't come fast enough.
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YES DENISE, MY PAIN STARTS AT THE SPINCTER MUXCLE AND THEN GOES ACROSS MY STOMACH AND THROUGH TO MY BACK AND I FEEL BLOATED. IT'S STRANGE HOW PAIN CAN RADIATE TO DIFFERENT PLACES. GOOD LUCK WITH YOUR ERCP. KEEP US INFORMED
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