SOD Symptoms

Use this area to discuss symptoms you have related to SOD.


Thanks,
Administrator
www.thesphincterofoddi.com

PS - Leave a comment to respond to this blog!

 
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  • 3/15/2011 3:41 PM Administrator wrote:
    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.
    Reply to this
    1. 12/13/2011 10:57 AM carol wrote:
      How is your wife doing now?
      Reply to this
  • 3/18/2011 11:07 AM Kris wrote:
    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.
    Reply to this
  • 11/18/2011 2:15 PM 1bvlgari cheap wrote:
    Great piece, many thanks. Can you make clear the second part in a very tiny far more detail be sure to?
    Reply to this
  • 12/10/2011 12:35 PM carol wrote:
    My daughter's pain is always worse after she eats. Is this true for most of you?
    Reply to this
    1. 12/23/2011 1:39 PM AK wrote:
      Yes--usually sometime within 15-45 minutes after eating--sometime sooner. Had sphincterotomy late October--much, much better!
      Reply to this
      1. 12/26/2011 10:34 PM carol wrote:
        Thanks for the information.
        Reply to this
  • 1/3/2012 1:58 PM Roman wrote:
    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.
    Reply to this
    1. 1/7/2012 11:46 AM carol wrote:
      What are they doing for you? What has helped?
      Reply to this
    2. 1/13/2012 12:59 PM Melissa wrote:
      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.
      Reply to this
      1. 1/13/2012 8:58 PM Roman wrote:
        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.
        Reply to this
        1. 1/18/2012 1:36 PM Melissa wrote:
          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
          Reply to this
          1. 3/31/2012 4:45 PM Brooke wrote:
            Hi Melissa,

            So, did you have the ERCP procedure and the SOD fixed? I have an appointment with Dr. Freeman on May 7. I am flying from Albany. My background and symptoms story is in this Sumptoms blog. I don't know if he's going to do an ERCP while I am out there, but am hoping so. None of my local doctors will do it--only as a "last resort". Well, after three hospitalizations, being down to 103 lbs, and chronic nausea, I would say this is the last resort!

            Thanks,
            Brooke
            brookevale@hotmail.com
            Reply to this
            1. 4/23/2012 9:34 AM Diane wrote:
              So you suffered for 13 years before this? Were you on medication and a low fat diet during that whole time? I'm trying to find people who were on meds and ALWAYS eating low fat and seeing if that kept most of the pain at bay.
              Reply to this
              1. 4/29/2013 12:56 PM Samantha P wrote:
                I have done the medications (Creon 4x a day) and a low fat/no fat diet. Sorry to say that I still have the pain. It got worse in the end of Jan 2013 and still have no resolve. Switched doctor's too and the new doctor seems to be really on top of this issue. I will be having another ERCP soon. I am just hoping that it works. I am getting very tired of being in pain and unable to eat.
                Reply to this
  • 1/3/2012 2:03 PM Roman wrote:
    Just wanted to add that I visited 13 different doctors in 3 countries for this terrible quarter-inch piece of flesh.
    Reply to this
    1. 1/3/2012 10:18 PM Jessica wrote:
      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.
      Reply to this
  • 1/3/2012 11:30 PM Roman wrote:
    Yeah, they checked me for that with the EUS. Clear.
    Reply to this
  • 1/4/2012 5:40 PM LOUIS wrote:
    I WAS VOMITING RAW BILE EVERYDAY FOR FOUR MONTHS. I FINALLY GOT MY SPHINTER OF ODDI DYSFUNCTION UNDER CONTROL.
    Reply to this
  • 1/4/2012 11:00 PM Jessica wrote:
    Louis I cannot imagine vomiting bile for 4 months! I only did that once when I got pancreatitis from a ERCP!
    Reply to this
  • 1/4/2012 11:01 PM Jessica wrote:
    Roman what do they do to check your pancreas? And yours was fine?
    Reply to this
    1. 1/13/2012 8:51 PM Roman wrote:
      They did Endoscopic Ultrasound. It's probably the most sensitive test for that.
      Reply to this
  • 1/5/2012 12:05 AM LOUIS wrote:
    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
    Reply to this
  • 1/5/2012 8:43 AM Jessica wrote:
    Louis, can ask what you do now to keep it under control? So thankful that you are doing better. God bless you!
    Reply to this
  • 1/5/2012 9:41 AM LOUIS wrote:
    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
    Reply to this
    1. 1/7/2012 11:52 AM carol wrote:
      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.
      Reply to this
  • 1/9/2012 8:23 PM Jessica wrote:
    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.
    Reply to this
    1. 1/12/2012 1:56 PM Carol wrote:
      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
      Reply to this
      1. 1/12/2012 2:22 PM LOUIS wrote:
        HELLO CAROL, I HOPE YOUR DAUGHTERS PROCEDURE IS A SUCCESS AND HER PAINFULL JOURNEY HAS ENDED.KEEP US POSTED, LOUIS
        Reply to this
        1. 1/16/2012 7:31 PM carol wrote:
          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
          Reply to this
  • 1/19/2012 9:11 AM LOUIS wrote:
    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
    Reply to this
    1. 3/31/2012 4:48 PM Brooke wrote:
      Louis,

      Did you ever have an ERCP or procedure to fix the SOD?
      Reply to this
      1. 3/31/2012 5:16 PM LOUIS wrote:
        BROOKE, AROUND TWENTY YEARS AGO I HAD MY FIRST ERCP WITH SPHINCTEROTOMY. SHORTLY AFTER THE FIRST ONE I BEGGED THE DOCTOR FOR TWO MORE EACH TIME MY PROBLEM ONLY GOT WORSE. OVER TWENTY YEARS I HAD SEEN SCORES OF DOCTORS BUT I JUST COULDN'T SEEM TO GET ANY HELP OR ANSWERS. SO I SUFFERED FOR ABOUT FIVE YEARS AND MY DOCTOR PERCSRIBED DARVOCET AND IT WORKED GREAT FOR YEARS, UNTILL THEY TOOK IT OFF OF THE MARKET. NOW I USE PAIN KILLERS TO MASS THE PAIN. I JUST READ ON ANOTHER SITE ABOUT A GIRL WHO HAD A BILIARY BYPASS AND SHE CLAIMS THAT SHE IS CURED.
        Reply to this
  • 1/24/2012 11:47 PM Shelley wrote:
    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.
    Reply to this
    1. 1/25/2012 3:35 PM LOUIS wrote:
      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.
      Reply to this
    2. 3/31/2012 4:50 PM Brooke wrote:
      Hi Carol,

      Where did you have the ERCPs and sphincterotomy done? What hospital were you supposed to have the biliary bypass at?

      Thanks,
      Brooke
      brookevale@Hotmail.com
      Reply to this
  • 1/26/2012 8:39 AM LOUIS wrote:
    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
    Reply to this
  • 1/26/2012 10:02 AM Denise wrote:
    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.
    Reply to this
    1. 1/26/2012 5:01 PM LOUIS wrote:
      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.
      Reply to this
  • 2/3/2012 1:30 AM Melissa wrote:
    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!
    Reply to this
  • 2/4/2012 1:14 PM DebbieG wrote:
    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!!!
    Reply to this
    1. 2/6/2012 3:11 AM MelissaI wrote:
      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
      Reply to this
  • 2/4/2012 5:38 PM Carol wrote:
    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.
    Reply to this
  • 2/4/2012 5:57 PM Carol wrote:
    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.
    Reply to this
  • 2/6/2012 4:24 AM Melissa wrote:
    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.
    Reply to this
  • 2/6/2012 10:15 AM LOUIS wrote:
    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"
    Reply to this
  • 2/6/2012 4:08 PM Denise wrote:
    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.
    Reply to this
  • 2/6/2012 5:52 PM LOUIS wrote:
    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.
    Reply to this
  • 2/10/2012 12:01 PM Denise wrote:
    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.
    Reply to this
    1. 2/12/2012 3:32 PM LOUIS wrote:
      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
      Reply to this
  • 3/11/2012 11:07 PM Naomi wrote:
    I am surprised to have found this site. I have been researching SOD for about a year now. I would have these painful attacks just below my sternum and they always happen at night. There is no ryme or reason to why they happen and occur every 4-6 weeks. I have had this for about 9 years. The last 2-3 years I finally reached my frustration point. The doctors couldn't find what the cause was and decided to remove my gallbladder. Weeks after my surgery I was back in the hospital with SEVERE pain in the exact same area. My liver enzymes were extremely elevated and felt at this time I had SOD. Months later I had ECRP w/sphincterectomy. Now I am 12 months past with the exact same symptoms. I don't even bother going to the doctor any more. The pain is so intense and always last 6-8 hours. I used to get nauseous only but now am at the point of vomiting bile at the end of an attack. I have no insurance now and have no clue in what to do. Louis I am going to check your blog because I am desperate for relief. I've tried everything I know to try. naomiwilson@suddenlink.net. I would love any input/advice/resources. Thank you!
    Reply to this
  • 3/12/2012 3:38 PM hakrjak wrote:
    Anybody else here noticed that when you are having a lot of pain, your stomach will be pretty silent -- but when your pain has diminished, your stomach is making a lot of noses and gurgling? I think I can actually tell when my bile duct is open, based on the noses I feel and hear -- it's pretty wild. I've been through a lot of tests, and finally going for my ERCP within the next month or so. Hoping that will be the end of this crazy train, because I've been living with this bizarre condition for over 2 years now, and I've had elevated liver enzymes on and off, along with pain that comes and goes. Defiitely seems to be triggered around very stressful times, so I've tried everything to lower my stress from seeing a Psychologist, etc... Sure doesn't help that the doctor has asked me to stop drinking completely since the enzymes have been elevated, and even though they have been normal for 4 months now -- he is still requiring me to be on strict no-drinking restrictions.
    Reply to this
  • 3/12/2012 6:11 PM Denise wrote:
    I had my ercp and sphicterotomy on feb 14 and i am worse now than i was before i went in. i now have daily nausea and horrible horrible pressure in the epigastric and right side. i cry daily and my doctors are bouncing me around and giving me medications that do not work. my husband and i are searching for specialists in our area that really know about sod. we live in the chicago area. if anyone knows of a specialist in this area please let me know. this is a terrible way to live and is very depressing.
    Reply to this
    1. 5/7/2012 12:33 AM MelissaMartin wrote:
      I do not know about the Chicago area but they have a excellent facility at the IU school of medicine in Indianapolis, Indiana. They are excellent doctors would be worth the 2.5 hour drive. I remember them telling me that they were the only one that did the ERCP in the Midwest. That was about 6 years ago i remember my roommate was from Ohio
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  • 3/19/2012 5:45 PM Brooke wrote:
    I had my gallbladder out 13 years ago and had the right side pain, nausea, and weirdest of all, severe fatigue and depression after eating. It felt like my body was overdoing it just trying to digest fats. The pain was debilitating. Had every test done and doctors labeled it IBS. I learned to live with it and with yoga, fiber, meditation, not drinking, smoking, eating right, the pain was definitely manageable, but I suffered on and off for those 13 years. Well, I had a c-section/baby in May and by September I couldn't function. Terrible nausea, pain, no appetite. By the end of September I had to be hospitalized. Three hospitalizations later, loss of 40 pounds (I am down to 100 lbs and am normally 130 lbs) and procedures to no end (upper GI, endoscopy, gastric emptying, colonoscopy, endoscopic ultrasound, CAT scans, xray, ultrasounds, angio CT scan, blood work, stool tests). It is 6+months later and I am still sick as a dog. I have been diagnosed celiac (debateable), gastritis, colitis, chronic pancreatitis (definitely have, but something is causing it). My doctors in Albany, NY don't know what to do so they say "don't eat fat, take the enzymes, you'll feel better". I am now seeing a doctor in NYC who ordered an MRCP (I am waiting on results). He said he can't believe with my history I haven't had an ERCP. He will order this to test for SOD next. Some days I feel like I can't go on. It is so depressing. I fear eating as I know I will have pain and nausea.
    Reply to this
    1. 3/21/2012 12:25 PM Brooke wrote:
      Update since post: My MRCP is completely normal. New doctor in NYC doesn't want to do an ERCP either due to the risks. I am so frustrated! How do I convince these doctors I need an ERCP?
      Reply to this
      1. 3/31/2012 5:10 PM Denise wrote:
        Hi Brooke. You said you have an appt with Dr Freeman on May 7th..I have one on May 9th. I guess we both took Melissa's recommendation. He ordered an Eus and an Mri on the 7th and 8th for me and then I see him on the 9th. I am hoping he can help me without having to go through another sphincterotomy. I really feel the procedure made me worse as I am now nauseous every day and have pain every day where before I just had random attacks. I wish you good luck and I hope we both find healing and relief with Dr Freeman.
        Reply to this
        1. 4/2/2012 5:10 PM Carol wrote:
          Please let us know what he says to do. My daughter just had two ERCP's and is still in pain. They are going to check her pancreas this Friday. She is only 19 and I am depressed from seeing her hurt all the time and nothing I can do. Let me know anything that might be helpful. Take care. Hope things go well for you. We are thinking of you and all others on this sight that are suffering.
          Reply to this
          1. 4/3/2012 11:45 AM Brooke wrote:
            Hi Carol,

            I was having severe abdominal pain under my sternum, in addition to the right side pain and was prescribed pancreatic enzymes. I still have the right side pain, which hasn't been too bad and nausea (which is the debilitating symptom), but the pain I was having under my sternum throughout by abdomen is gone. If I forget to take my enzymes, it comes back. I can't do pain killers as I have been clean and sober for 13 years, plus I have to be alert for work and my 10 month old baby. Maybe your daughter's doctor could at least experiment with the enzymes. That's what my doctor did as my pancreas looks fine. It took about a week for them to fully work. I thank God every day for the enzymes. I am on Creon 24,000, which is the highest enzyme dose.
            Reply to this
  • 3/31/2012 5:37 PM LOUIS wrote:
    I JUST READ ON ANOTHER SITE, THIS GIRL SAID SHE HAD A BILIARY BYEPASS NOT THAT LONG AGO AND SHE CLAIMS THAT SHE IS CURED OF ODDI DYSFONCTION.
    Reply to this
  • 4/1/2012 12:47 PM Denise wrote:
    Does anyone here have esophageal problems after the ercp? I am having a little trouble swallowing and some pain as the food goes down. It sticks in my chest. Pain in the back too. I had an esophageal mamonetry and haven't gotten the results yet. All of these problems seem to have started after my sphincterotomy and ercp but the doctors don't think it has anything to do with that. I have had it. It has been one horrible thing after another with this condition. Just wondering if anyone else has these symptoms after the procedure.
    Reply to this
  • 4/1/2012 4:49 PM highcountry wrote:
    Reading all of your posts gives me hope, but also makes me very nervous. I had my gallbladder removed 3 years ago and have been suffering ever since.

    My GI has hesitated to refer me on for an ERCP or sphincterotomy since my blood levels have never indicated high liver or pancrease levels. However, he has mentioned it is most likely SOD since the first time I saw him post gallbladder removal.
    I was feeling ready to attempt it anyways after so many years of pain, but some of your posts worry me.

    Did many of you actually feel worse after the ERCP rather than better? Did you have an ERCP with manometry? Sphincterotomy? I am unsure what the right course to take is.

    Does anyone have recommendations for a doctor or facility in CA?

    Also, I don't know what the "pain patch" is a few of you mentioned.
    Thank you for your suggestions.

    I was also ready to go to the Mayo clinic in Arizona, but perhaps that is not the best choice?
    Reply to this
    1. 7/14/2012 3:36 AM Laura wrote:
      I've had SOD for 2 years, and only once has my lipase ever been elevated (678.0 - I definitely had pancreatitis!). Your bloodwork might not show anything, but that doesn't mean you don't have SOD. You need to find a GI surgeon that performs ERCPs with Sphincter of Oddi manometry to test the pressure of the sphincter. If it's tight, then a dual pancreatic biliary sphincterotomy WITH a stent placement (to prevent pancreatitis) needs to be performed. It's painful, but I had 9 months of being pain free! The only reason why I got SOD again is because my body produces scar tissue like crazy, so the sphincterotomy cut scarred-over, tightened, and closed up again. Dr. Peter Cotton at the Medical University of South Carolina is a genius, as is Dr. Robert H. Hawes in Orlando. It's worth the plane ticket to fly to see either one of them - they can and will help you!
      Reply to this
    2. 7/29/2012 2:24 PM Chris wrote:
      Did you ever find a Dr in Ca??
      Reply to this
  • 4/1/2012 5:40 PM louis wrote:
    I feel your pain, this is a hard,terrible, and painfull disease to live with.and we have very little help and answers. If you would like to read my system on how i control my pain. Just type into your search box (how i control my sod pain)this will take you there read my system i have been controling my sod pain now for eight months. I am in my car right now eating a pizza because i control my pain every day. You got nothing to loose and everything to gain. Follow it to a tee It works for me. Never give up. I will be here for everyone untill we defeat this beast called sphincter of oddi dysfunction.
    Reply to this
  • 7/14/2012 3:29 AM Laura wrote:
    Has anyone had difficulty with being mis-diagnosed with IBS? I've had SOD for 2 years now, with 3 ERCPs and 2 dual Sphincterotomies (with stent placements to prevent pancreatitis). The surgeries gave me relief but it only lasted several months because the cuts scarred-over and the sphincter closed up again. The last ERCP showed that my Sphincter was still open but I was suffering with extreme upper left quadrant abdominal pain (the exact same pain that I have when my sphincter is closed). So, they diagnosed it as IBS, but I don't believe this is correct. Anyone have any thoughts?
    Reply to this
  • 7/14/2012 7:46 AM Denise wrote:
    I was told I had IBS too. I had one ERCP with sphinterotomy back in February..Had some problems after so I went to the Univ. of Minnesota to see Dr Freeman who is very recommended on here. He told me it was either intestinal or possibly the Sod was back. He wanted me to try probiotics for awhile and think about the possibility of another ERCP. He said he wouldn't know if that was the case till he did the procedure. I am terrified of going through that again. It was very painful. I did not get pancreatitis but none the less it was horrible. Right now my symptoms are back pain and tightness after eating, loose stools, and the worst heartburn and indigestion I have ever had. I am trying desperately to use my dexilant and carafate to make it go away. I am hoping it is just a bad case of gastritis or something from all the months of pain pills with the sod. Has anyone else ever had these symptoms? I am scared and depressed to have to think about going through this again. I can't help but think the more they go in there, the worse I could possibly get. Any thoughts?
    Reply to this
    1. 12/12/2012 2:15 PM April wrote:
      hi, this site has helped me alot. to tell you little about my story. 6 years ago I had my gallbladder removed because of pain and stones.. 3 days after having it removed I was admitted into hospital for severe abdominal pain, vomiting an severe diarrhea .. they did I had my c-diff an colitis . was in an out of hospital for 2 months .. . my liver enzymes were really high.. they couldn't explain why they were high .. this was in a hospital in Florida .. they had 8 different specialist working on me.even had a liver biopsy .. still couldn't explain liver emymes being high.. I have seen many specialist .. all classify my pain as ibs .. but can't explain my high liver levels .. after routine blood work an liver levels were 7 times higher than normal my primary Dr referred me to a general seargion .. he reviewed all my records an test i have had done ..finally got a Dr to listen to me. an not try telling me my pain diarrhea an liver levels were all in my head .. he told me he thinks i got sod .. but the hospital in my town doesn't have the means to perform the ercp test. he referred me to specialist about 4 hours away who can .. waiting to see that Dr.. Hoping this time i find a Dr who will listen to me an try helping me.. this is ruining my life i got a husband an 6 children that need me an because of the way i feel with all the pain getting sick every time i eat . they have suffered cuz i don't want to leave the house ..
      Reply to this
    2. 1/16/2013 8:52 AM debbie wrote:
      Denise - how are you doing now? I have the same symptoms after gall bladder removal in November 2012. Carafate isn't helping much. Doc says its Gastritis and prescribed acid reducer and carafate which are not working. In fact, I am worse than I was 5 days ago when I started the meds. Please get back to me. My email address is az1sweetlady@cox.net.
      Reply to this
  • 8/6/2012 6:59 PM LuAnn wrote:
    burning started in center of upper abdomen, then felt like bits and pieces floating in chest, then swallowing problems candida of esophagus, then severe pain under right shoulder blade and 13% gallbladder function, gallbladder removed but under right shoulder pain remained and after every test under the sun for spine, nerves in back, many emergency room hospital visits for constant pain under right scapula, FINALLY after 14 months of tests with no outcome my dr. ordered the ERCP w/Spinchter of oddi, scared but went through with it, 3 steps, 1 to check for gallstones, 2 to check pressure in bile ducts and my pressure was almost double, skilled dr. needed, he cut the SOD to release pressure AND FINALLY I HAVE RELIEF from terrible pain under right scapula, no other tests revealed problem, scary step 3 to go by my pancreas was not needed when step 2 revealed all the pressure. THANK GOD this test was finally done, ERCP with SOD!!! My husband and I were not giving up and it took 15 months of emergency room, hosp. visits, pain patches and meds, tests, blood work, gallbladder surgery, nothing showed so they warned us of the big possibility of pancreatitis from this test, i was scared but went thru with it because I trusted the trained specialist for this test. It's been the longest i've ever had a problem with my health without any evidence to take care of it, eating made the pain much worse and carbs but still very constant, nothing helped it, worse at end of the day or with exercise, etc. I could go on and on. After cutting the SOD, it took 4 weeks to really notice the relief. Today, 8/6/12, I can barely feel the pain under the right scapula!!! AMEN, I have my follow up visit on 8/10/12, I have ?'s as to what caused it, is it hereditary, and what does the future hold now, hopefully it is gone!! My husband was amazing thru it all, and my family physician stood by me knowing there was a real problem to the very end (thank God for him knowing I had something wrong and never went to him all the time with issues until this all started, he stood by me trying until he found it!) My hips hurt and burned too, with some chills and i had bronchitis 2x throughout this, which I never had before, coughing up ALOT of yellow mucous, a rash, spasming one night in upper mid stomach to hosp. for that. Every test under the sun for my spine, heart, etc. etc. I also started menopause, 1 entire yr. without a period May 2011??, not sure if that could cause the pressure??? I am 52 yrs old and really was not sick too much of my life, except for normal stuff, but not even that very much. Feel free to ask me any ?'s, I'd love to be there for anyone who needs my input for this, I was ready to give up and take pain meds and continue to slap a patch on to deal with it, I did not know what to do anymore!!! and FINALLY releasing that pressure gave me relief!! It could have been a much worse outcome, but it was constant pain every single day for over a year very appreciatiative daily
    Reply to this
    1. 8/10/2012 5:55 PM LOUIS wrote:
      LUANN, HOW LONG HAVE YOU BEEN PAIN FREE?
      Reply to this
  • 9/25/2012 9:13 PM Mindy wrote:
    I have a 16 yr old daughter who has been having stomach pain for the past 10 yrs off & on. Just this past summer it has started to come to a head & she has been miserable off & on. For the past 2 months she has been in constant pain & had a ct scan, ultrasound & hida scan & a scope down her throat. Everything was normal except her bile ducts were enlarged & the scope showed severe gastritis. Dr decided to remove her gallbladder. After the surgery he said it was cronicly inflamed but everything else looked normal. It has been a week since the surgery & she has progressively gotten worse & worse. Yesterday we were back in the hospital since she was so dehydrated. She is constantly nauseated & throws up when the pain gets so bad. Last night as she was crying & begging me to stop the pain & saying that she couldn't breathe I called the dr & he said he didn't think her pain was "real pain" & it was maybe from anxiety or from narcotic withdrawal. I have a Dr. friend who just went thru all this same thing & ended up going to Indianapolis to have surgery. I called him & he got me into a gastroenterologist who is supposed to be the best. They are suggesting we have a feeding tube put in & a colonoscopy. I am wondering if we should just go somewhere to get this sphincter checked out & not mess around with all of this. She had another bad attack tonight & had to give her more Tylenol with codeine along with Advil, which I know isn't good for her gastritis. I would love to have feedback about what you think I should do. I just know she can't deal with the pain anymore & we need to do something quickly!
    Reply to this
    1. 9/26/2012 9:16 AM Brooke wrote:
      So sorry to hear about your daughter. GI pain is so hard to deal with and determine its origin. My experience has been that GI docs don't jump right into testing for SOD as the ERCP w/sphincter of oddi manometry test is invasive and carries risks of acute pancreatitis. I think it is always helpful to first rule out other issues by getting a CT scan, MRCP (special MRI),colonoscopy, etc. For example, my friend had SOD-type pain and it turned out there were complications from the gallbladder surgery. Narcotics actually worsen SOD spasms. My SOD developed after gallbladder removal. The pain was incredible. I ended being misdiagnosed with IBS for 13+ years. I learned to tolerate the pain w/o narcotics. I finally was diagnosed 8 weeks ago with SOD through ERCP--and a severe case it is (sphincter basal pressures are supposed to be less than 40, mine were 170). The doctor cut my pancreatic and biliary sphincters. I was one of the unlucky ones who got acute pancreatitis and was hospitalized for a week. I starting feeling better, but two weeks ago I went back to the way I felt pre-procedure. Now I am considering a full-on operation (transduodenal sphincteroplasty). I see a surgeon on Friday. Best wishes and prayers to you and your daughter!
      Reply to this
  • 9/27/2012 7:09 AM Mindy wrote:
    Brooke, Thank you so much for responding. It's so good to talk to others who have gone thru this before. We are getting the colonoscopy this morn & I think it was the worst experience of her life having to drink the bowel prep last night, her pain was excruciating! They found blood in her stoop test yesterday morn so have scheduled her quickly. Next we will be getting the feeding tube. It absolutely breaks my heart to watch her go thru this. I don't know how to make her go thru this without narcotics, how do you do it? Now I am wondering if we have made a huge mistake by getting her gallbladder removed. Is that going to make her have probs with SOD now? It's so hard to know what to do!! We are very religious & prayed & fasted about this decision & felt very peaceful that it was what needed to be done but now I am doubting myself! I honestly was so depressed after reading this blog. I don't know how you guys live with this!
    Reply to this
  • 9/27/2012 7:40 AM Brooke wrote:
    Hi Mindy,

    Many people have their gallbladders intact and have SOD, so don't beat yourselves up over that. I would keep pushing, though, to have her tested for SOD. There are some non-narcotic solutions that help SOD but don't know much about them. There are also two support groups on Facebook for SOD. The links are: http://www.facebook.com/groups/18147345653/ and http://www.facebook.com/groups/SODSupport/. There are a lot of experienced members in these groups. I will pray for you and your daughter! Keep in touch.
    Reply to this
    1. 1/3/2013 3:24 PM Diane wrote:
      Brooke, I started doing acupuncture and taking chinese herbs and became 95% better. I also eat very low fat all the time!! I read you were better for a while and then got really sick. Were you still doing acupuncture, etc when you got worse. I am starting yoga and meditation. What worries me is that it sounds like it's not a long term fix. Have you heard of anyone doing all of this stuff and being fine long term??? I have to have hope or I'll go crazy.
      Reply to this
      1. 1/4/2013 3:15 PM Brooke wrote:
        Hi Diane,

        I had SOD pain symptoms from 1998-2011--only the pain. I did all of the holistic things--yoga, didn't drink alcohol, breathing, massage, limiting fat, acupuncture. These things definitely helped. I really learned to live with and accept that pain in my side. It wasn't until Sept. 2011 when things got so out of control that I couldn't eat, vomited constantly, had severe pancreatic pain, and was down to 90 lbs. by May. It was awful. I wish I only had the SOD pain to deal with. I'm better now that I've had a transduodenal sphincteroplasty surgery Oct. 3. Still recovering, though, very slowly.
        Reply to this
        1. 2/1/2013 12:58 PM Casey wrote:
          I am supposed to have a sphincerpolasty consult done- have had very large problems since 2011- do you recomend it? How long off work?
          Reply to this
  • 10/21/2012 3:38 PM Rhonda wrote:
    I'm asking and praying someone can help me. My husband was diagnosed with SOD Sept of 2011 after gall bladder removal. Automatically they started him on dilauted and ativan pills at home. Over time his body has built up a tolerance so they keep giving him more and more. We went to Indianapolis in May this year and had the ERCP done, it was not successful, so we came back home and the narcotics continued. It's really bad. He takes anywhere 8-16mg of dilauted a day, 3-5mg of Ativan. The addiction to these medications is growing. We have tried to stop the addiction by holding his pills and limiting how much he gets, but he just tears the house apart, breaks into my in laws house or buys to feed his addiction.It has become so extreme that he has started melting the pills down and injecting them into his veins. I need help please!!! We are wanting him in rehab but I am so scared, because when he goes without the narcotics, he starts vomiting bile/pain. We end up at hospital where they give him iv dilauted/ativan/phenergran and fluids then send him home. At times they have even put him on a pain pump where he has recieved as much as 22mg in 1 day. We are scared that if we do a rehab, that the pain and vomiting is the sod not just withdrawls. His dr here in TN just wants him to continue on the dilauted the way he's doing and I dont feel that is right, we have 5 kids ages 7,5,4,2,and 2 months, and I'm needing him as a father/husband. Please any advice would be appreciated please. You can email me too at rhondasholt@yahoo.com
    Thank you and God Bless all of you guys going through this. My thoughs and prayers are with you!
    Reply to this
  • 2/1/2013 8:46 PM Brooke wrote:
    I am replying to the question about sphincteroplasty. I am so grateful I had it. But, it is MAJOR surgery--I repeat--MAJOR. I lived with the annoying pain of SOD for 12 years. I was able to manage it with relaxation and breathing. However, after having my third child, the SOD became completely unmanageable--vomiting, significant weight loss (had to get feeding tubes), SOD pain AND pancreatic pain, inability to absorb nutrients, chronic nausea. I had a sphincterotomy and it didn't work. Sphincteroplasty saved my life. I have been disabled for seven months--had sphincteroplasty four months ago. I will be disabled for a while longer as the SOD did major damage to my pancreas, liver, muscles, nervous system, etc. I was in the hospital for a month after surgery as I was very underweight, had uncontrollable diarrhea, and ended up in ICU with a bacterial infection and 106 degree temp. I am doing much better, but still not completely well. I finally got my feeding tubes out two weeks ago.
    Reply to this
  • 2/16/2013 3:16 PM Greg wrote:
    First time poster, and I'm hoping this information may help someone. I'm a 35 year old male, no previous GI or psychological problems. Had gallbladder removed six-month ago because it was low functioning. Like many of you the pain became constant and worse. Went through CT, EGD, Colonscopy, US, EUS, gastric emptying study, and multiple blood tests all negative. Finally had ERCP and pressures were borderline, but based on symptoms sphincterotomy performed. No change in symptoms. I was told I had a chronic pain condition, no organic cause could be found. Frustrated and depressed a GP from my church agreed to look at all my records. Looked at the blood work and liver/pancreatic enzymes very consistent (ER or standard draw no variation). Looked at EUS, ERCP reports, both grossly normal. While looking at a disc of my CT scan his face went a little funny and he said "hmm". I, of course, was very curious. He asked me if I'd ever heard of a condition called Celiac Artery Compression Syndrome. On the CT scan my celiac artery looked cloudy and distorted, where as the other arteries coming off of the aorta were bright white and smooth. The celiac artery supplies blood to parts of the stomach, liver, duodenum, pancreas and spleen. Compression of this artery can cause partial ischemia to those blood vessels resulting in chronic epigastric abdominal pain and weight loss. About 10-25% of the population has this anatomic abnormality, and it doesn't usually become symptomatic unless you experience some sort of trauma (injury, abdominal surgery, etc.). Look it up and read about it, when he first brought it up I shook my head. But after doing a little research it seems like a real possibility. It can't be conclusively diagnosed via CT, but based on what he saw he's referring me to a vascular surgeon for the appropriate work-up. It's not that rare, but it is rarely diagnosed. I've read some comments from people who were cured after many years of suffering. Response to surgical treatment is between 75% and 90% based on what literature you read. However, unlike sphincterotomy if this is your problem those who benefit typically have COMPLETE RELIEF OF ABDOMINAL SYMPTOMS. If you have unresponsive SOD, especially type III with normal scans and blood work this could be you. Furthermore, a radiologist typically wouldn't note this in a CT unless they were specifically looking at it. More than likely they were looking at your organs. I just an MD looking for the strange and unusual. Symptoms include post-prandial epigastric pain, weight loss, nausea, and at times an abdominal bruit can be heard via stethescope (but not always). Hope this information is helpful to someone! I pray healing for all of you.

    Greg
    Reply to this
    1. 2/16/2013 6:34 PM Mindy wrote:
      Greg, Do you just have pain after meals or is it a constant pain? Your story sounds very similar to my 17 yr old daughters. She had her gallbladder out in Oct with no relief, a sphincterotomy in Nov with relief for about a month & then she was back in pain again. Now they are wanting to do another sphincterotomy but I do not want to go that route. I've been reading about Celiac Artery Compression Syndrome & it sounds like the symptom is pain after meals though, her pain is constant. I would be interested to know how things turn out for you. Thanks,
      Mindy
      Reply to this
    2. 2/16/2013 8:50 PM debbie wrote:
      Greg - thank you so much for your post but I also wonder if the pain is after you eat? I had my gall bladder out November 2012 and have been suffering with pain upon eating ever since. I've lost 32 pounds. Last Thursday my Mayo Clinic doctor said they give us...they can find no reason for my continued pain and said the only thing left is to put me on a de-sensitizing drug for the rest of my life. I don't have nausea but the pain is so bad that I sometimes struggle to catch my breath. I have had two unexplained severe vomiting episodes however. I will be doing some further research on Celiac Artery Compression and will be calling my doctor next week to discuss the possibility! By the way, I've had everything you had including two sphincterotomy's with no success. Thank you again!
      Reply to this
  • 2/28/2013 7:31 AM Greg wrote:
    Mindy,

    I had the vascular ultrasound on Wednesday, and it confirmed stenosis of the celiac and superior mesenteric arteries. The ultrasound technician, radiologist and my GP couldn't believe it. I'm seeing a vascular surgeon on March 4th.

    And yes my pain is constant. Worse after meals, but sometimes worse for no reason at all. I've not had a pain free moment for six months. I've had an EUS, CT, ERCP, Gastric Emptying Study, Hydrogen Breath test, and etc. All grossly normal. A big part of this problem is PAIN OUT OF PROPORTION TO CLINICAL FINDINGS. It is difficult to diagnose because it mimics so many other things. Everyone will present a little different. Just like like SOD, pancreatitis, Gallbladder disease, etc. Talk to five people who had heart attacks and they'll give you five different sets of symptoms. But to answer your question my pain is constant, with periodic ups and downs.

    Debbie, if you've had all that with no relief please have them check. I don't even have the compression, just a blockage. I have two out of three abdominal arteries involved (Celiac and SMA). Like I said my GP couldn't believe it. They'll do a vascular ultrasound of your stomach. Peak systolic velocity of over 275 cm/s in the SMA and 200 cm/s in the celiac indicates a problem. PLEASE, PLEASE CHECK! If that's the problem and it's corrected relief should be complete!!!!
    Reply to this
    1. 3/2/2013 5:43 PM debbie wrote:
      Thank you for checking in with me. I researched the compression and it sounds like that is exactly what is wrong. I faxed it all to my doctor but he never responded. I am angry beyond words that he couldn't even send me a short email. Mayo Clinic here is supposed to be the best and it's sad they have just given up on me...especially after $39,000 worth of medical bills since November I did have 2 days this week that were pain free, but probably because I ate very little those days. My weight is holding steady now after losing 32 pounds. I force myself to eat just knowing that I will suffer pain for 1-3 hours after eating anything. I pray for all of you on here and that you find relief! *hugs*
      Reply to this
      1. 3/3/2013 4:38 PM Brooke Schewe wrote:
        Debbie,

        I am hearing over and over that the Mayo Clinic is giving up on folks with suspected SOD. What happened in your case? Can you email me at brookevale@hotmail.com? Have you had the ERCP w/manometry and sphincterotomy?
        Reply to this
  • 2/28/2013 7:52 AM Greg wrote:
    Mindy,

    I read some of your previous posts and my heart just breaks for you. I have twins (boy and a girl). I couldn't imagine watching one of my children go through this.

    Is your daughter really thin? The fact she's had tummy aches for years and some of the other symptoms you describe really make me think it could be MALS/CACS. I'll say again, my pain is constant/night and day, but eating makes it worse. What's really strange about this is that none of the standard things doctors try work. Another big clue. Does she burp a lot with zero relief? Shortness of breath? Pain out of proportion to clinical findings? Aggravated with exercise? It is a simple noninvasive test to check. Do not let them touch her bile ducts again unless she has elevated liver or pancreatic enzymes. Celiac artery compression can cause a low functioning gallbladder. If blood supply is low the body will send it the most important organs first. It can also cause gastroparesis, etc. No doctor could figure out why I was in constant unremitting pain, and my blood work and scans looked like they came off a 5-year old. However, the systolic velocity in my SMA and celiac artery were grossly abnormal. The ultrasound technician though the was doing something wrong at first. My e-mail is greg11477@yahoo.com, and I'd be happy to pass you my phone number if you have any questions.

    Greg
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  • 2/28/2013 8:26 AM Greg wrote:
    Mindy,

    Sorry I keep posting, but your daughter's story just gets to me. I had more than one doctor tell me my pain was psychosomatic or that I shouldn't be in so much pain. I'm a 17-year career military officer with five combat deployments, a beautiful family, and a life I love. I wouldn't just suddenly fall apart unless I was in true pain. I researched, read medical journals, studied medication and physiology, and finally found a doctor from my church willing to sit down with me and brainstorm. When the vascular ultrasound revealed stenosis in 2 out of my 3 main abdominal arteries he couldn't believe it took so long to figure out. Especially when this alternative diagnosis should be considered when the pain is out of proportion to clinical findings. The "it's in your head" diagnosis is crap. I see the vascular surgeon Monday, but this past week has been an emotional roller coaster. I think of every doctor that looked at me like I was nuts, or didn't even examine me properly and assumed I was a head case. I think of what my family has been through, and how they even doubted me after so many negative tests. All I can say is don't give up and don't take no for an answer. Believe in your daughter! The lowest time for me is when my family started saying it was in my head and I need to snap out of it. I'll be praying for your daughter.

    take care,
    Greg
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  • 3/16/2013 9:53 AM Brooke wrote:
    I encourage anyone interested in seeking info about SOD to visit/like my Facebook page on SOD: www.facebook.com/sphincterofoddi. I am still adding information but there's basic info there.
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  • 7/27/2013 9:59 AM Lesley wrote:
    Hi there
    I have had pain for the last 13 years and had every test there is but all negative, my liver enzymes are always raised and I have had my gallbladder removed. I have now lost so much weight, is weight loss one of the symptons to havingSOD?
    Reply to this
    1. 7/27/2013 3:29 PM LOUIS wrote:
      I HAVE HAD PAIN FOR OVER TWENTY YEARS. BUT I HAVE BEEN CONTROLLING MY PAIN NOW FOR ALLMOST TWO YEARS. HAVE YOU READ MY BLOG ON HOW I CONTROL MY SOD PAIN. IF NOT JUST TYPE INTO YOUR SEARCH BOX HOW I CONTROL MY SOD PAIN AND LEAVE SPACES IN BETWEEN THE WORDS AS I HAVE ANS THAT WILL GET YOU TO MD JUNCTION READ MY FINDING. AND WITH THE GRACE OF GOD YOU MAY GET SOME RELIEF FROM THIS TERRIBLE DISEASE WITH NO CURE. GOOD LUCK FROM LOUIS P.S. DON'T EVER GIVE UP EVERY LITTLE BIT HELPS
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  • 7/27/2013 10:44 PM Anonymous wrote:
    Louis,

    You repeat over and over how you have your SOD under control and to go to Pancreas Tomorrow under "Bob". However, there is no "Bob" on that blog and I know the page administrator. Also, you mention Darvocet as part of your "cure". Narcotics shouldn't be recommended on an SOD blog, especially opiates as they are known to exacerbate SOD spasms in most people. Plus, Darvocet is not available in the U.S. anymore. Stop spamming.
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  • 7/28/2013 12:42 PM Debra wrote:
    I've been suffering for 1 year now. Went through all the testing that resulted in no findings. Docs when in last December and removed my gallbladder and appendix (both turned up healthy). 6 weeks later all the pain was back in force. It took two months to get it under control and I wanted to share how I did it and how I manage daily. (this is not to say it doesn't creep up mildly when I deviate from the following).

    - To clear it up I went fat free, gluten free, alcohol free, and spicy food free. Basically ate salads for 6-8 weeks. Loaded with veggies and fruits. I certainly did not starve.

    - Probiotic daily (75 Billion - highest strength). I've been using GNC brand. has changed my life.

    - Keep things "moving". Dulcalax / Metamucil as needed.

    - Ongoing - Heavy veggie diet. Gave up red meats completely. I can eat Chicken (not fried or breaded) and I have a new love for Tuna. Tuna salads loaded with veggies and use a spicy/sweat mustard instead of mayonnaise. Creative meals and keeping the fat content at 0 or under 5. No cheese. No pizza (crying). No fast food. Fat-free milk only. I'm okay now with breads (gluten). Back on my spicy foods (salsas, spices, etc).

    - Keep food quantity within reason. Over eating aggravates it even if its healthy.

    - Alcohol. I gave it up for a while but am okay now to have my wine on weekends.

    - no ibuprofen or pain medicine.

    While its under control, it creeps up now and then when cheat. I've been feeling like a million times better for 4 months now after that 2 month 'cleansing'.

    I'll just add.... THIS SUCKS and it bums me out at times that this is something I'll likely have to deal with my entire life.

    Take care everyone. I hope this info will help you.

    Debra
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  • 7/28/2013 10:55 PM Brooke wrote:
    So sorry you're going through this. Unfortunately all of my tests came back normal. It wasn't until I had an ERCP w/manometry that I was finally diagnosed with Sphincter of Oddi Dysfunction (after 12+ years suffering). During the ERCP the GI doc cut my biliary and pancreatic sphincters. The relief from this didn't last and I ended up having a transduodenal sphincteroplasty where my sphincters were permanently sewn open. Today I have few symptoms and am enjoying life. Just knowing what I had after all those years of "normal" tests gave me relief.
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  • 7/28/2013 11:00 PM Brooke wrote:
    Lesley,

    I went undiagnosed/misdiagnosed with SOD for over 12 years. I had pain under my right rib after gallbladder removal for about 12 years, then after having my third son I couldn't eat, had chronic nausea, and the pain radiated to under my sternum. I went from 135 lbs to 90 lbs. I ended up on a feeding tube but was FINALLY diagnosed by having an ERCP w/manometry test by Dr. Martin Freeman at U of MN. He cut my biliary and pancreatic sphincters. The relief was temporary and my weight was dropping again so I had a transduodenal sphincteroplasty where the surgeon sewed the sphincters permanently open. That was 10 months ago. Today, I am up to 130 lbs, experience very little pain or nausea, and am enjoying life.
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