Friday, March 18, 2011

Sphincter of Oddi dysfunction (SOD)

Does Sphincter of Oddi Dysfunction Even Exist Anymore?
Published on Feb 9, 2017
Speaker: Grace H. Elta, MD, FACG
Learning Objective: Discuss the current understanding of SOD in the modern era of evidence-based medicine.
Source: 2016 ACG Postgraduate Course, Las Vegas, NV
https://www.youtube.com/watch?v=78xn5hwEWqk




Diseases: Pancreas and Biliary Tree: Sphincter of Oddi Dysfunction


Gallstones are the most common cause of gallbladder dysfunction and symptoms such as pain and infection (cholecystitis). However, sometimes the gallbladder can become inflamed and partially obstructed in the absence of stones.

The normal gallbladder contracts through muscular activity in response to food, forcing bile through its exit channel (the cystic duct) and into the bile duct for passage into the intestine (through the sphincter of Oddi or the papilla of Vater). If these movements are not appropriately coordinated, the pressure can rise and result in gallbladder type pain.

In this condition, the gallbladder may appear normal on the standard ultrasound scan; abnormalities are only detected when the gallbladder is stimulated to contract, with food or after an injection of a stimulating hormone (cholecystokinin – CCK). Failure of the gallbladder to contract properly, especially if the patient's pain is reproduced, is good evidence of gallbladder dysfunction. This can also be investigated by a special type of isotope scan (HIDA scan) during which the behavior of the bile can be watched and the emptying of the gallbladder measured (the ejection fraction). Patients with clearcut symptoms and positive test results respond well to removal of the gallbladder (laparoscopic cholecystectomy).

Papillary Stenosis: Sphincter of Oddi Dysfunction
The sphincter of Oddi is the muscular valve surrounding the exit of the bile duct and pancreatic duct into the duodenum, at the papilla of Vater. The sphincter is normally closed, opening only in response to a meal so that digestive juices can enter the duodenum and mix with the food for digestion.

Sphincter of Oddi dysfunction and papillary stenosis are conditions which occur when this sphincter (opening) mechanism is disturbed. When the hole is too tight, there is a backup of bile and pancreatic juices. This can cause pain (biliary colic). More prolonged obstruction may result in bile leaking back into the blood stream, resulting in abnormalities of the liver function tests, or even yellow jaundice (discoloration of the eyes and skin). Also, blockage to the pancreatic orifice can cause pancreatic pain or attacks of pancreatitis.

Papillary Stenosis can be caused by passage of stones, or scarring after treatments (i.e. endoscopic or surgical sphincterotomy). Papillary stenosis usually results in sufficient backup of bile flow that there is stretching (dilatation) of the bile duct. This can be recognized by scans (such as ultrasound , CT and MRCP) and various x-rays, including ERCP (Endoscopic Retrograde CholangioPpancreatography). Papillary stenosis requires endoscopic or surgical treatment. The hole is enlarged by cutting, to improve drainage. Occasionally it is necessary to do a surgical bypass (choledochoduodenostomy, or Roux-en-Y hepaticojejunostomy) to insure that drainage is effective.

Sphincter of Oddi dysfunction (SOD)
SOD describes the situation where the sphincter goes into “spasm”, causing temporary back up of biliary and panctreatic juices, resulting in attacks of abdominal pain (or pancreatitis). The pain symptoms are very similar to those caused by bile duct or gallbladder stones. Indeed, sphincter of Oddi dysfunction most frequently occurs in patients who have previously undergone removal of the gallbladder (cholecystectomy). SOD may be one manifestation of other muscular spasm problems in different areas of the body (such as the esophagus, or intestine – irritable bowel syndrome). However, in some patients, it is the prevailing complaint, and requires focal attention.

Diagnosis of SOD
Initially, tests are aimed to make sure that there are no other problems present, like a stone or small tumor. Standard ultrasound and CT scans are helpful, but not very accurate in detecting or excluding small stones. Newer techniques such as MRCP and endoscopic ultrasound are more sensitive, and useful. Most patients are investigated with ERCP, with Sphincter of Oddi Manometry (SOM). For ERCP, the doctor passes a special flexible endoscope (under sedation or anesthesia), to examine the drainage hole of the bile duct at the papilla of Vater. Dye is injected into the bile duct and pancreatic duct to double-check for stones and other forms of obstruction. The possibility of sphincter spasm (dysfunction) is tested during the ERCP by measuring the “squeeze pressure” in the sphincter, with manometry (SOM). SOM is performed only in special referral hospitals. Like all types of ERCP examination, there are risks, particularly the chance of suffering an attack of pancreatitis. For this reason, ERCP in this context is usually done only after other simpler tests have been exhausted.

Treatment of SOD
Mild forms of SOD can be managed by anti-spasm medicines. When attacks of pain cause considerable disturbance with life activities, a decision has to be made whether to cut the sphincter (sphincterotomy), during ERCP. When sphincter of Oddi manometry has confirmed that the pressures are high, sphincterotomy gives good relief in most patients (but not all). The performance of sphincterotomy carries a risk of complications, such as bleeding and perforation, in addition to pancreatitis. There is also the possibility of recurrent symptoms after months or years due to scarring of the sphincterotomy. Further cutting (repeat sphincterotomy) is sometimes possible, but there are limits; surgical treatment with a transduodenal sphincteroplasty may be necessary. Transduodenal sphincteroplasty may also be recommended in lieu of ERCP in patients who have undergone previous gastric surgery.

Sphincter of Oddi Dysfunction is a difficult condition, which should be approached and managed with considerable care. Patients may warrant referral to specialist centers, who often have special research protocols.

76 comments:

  1. NOTHING THEY HAVE FOR SPHINCTER OF ODDI DYSFUNTION WORKS. I HAVE BEEN LIVING WITH THIS FOR GOING ON TWENTY YEARS. IT HAPPENED RIGHT AFTER I HAD MY GALLBLADDER REMOVED. THEY CUT THE THE SPHINTER MUSLE THREE TIMES AND EACH TIME THE PAIN GOT WORST. I HAVE BEEN RESEARCHING THIS PROBLEM FOR ALLMOST TWENTY YEARS AND IT SEEMS TO HAPPEN AFTER PEOPLE GOT THEIR GALLBLADDER TAKEN OUT THROUGH THEIR BELLY BUTTON. I CAN'T FIND ANYBODY THAT GOT THIS PROBLEM THAT HAD THE ORIGINAL GALLBLADDER SURGERY WHERE THEY SLICED THE STOMACH AND TOOK IT OUT. THEM NEED TO MAKE US A MEDICATION THAT RELAXES THE SPHINCTER AND DOSN'T UPSET OUR STOMACHS. DAVACET WORKED WELL UNTILL THEY PULLED IT FROM THE MARKET. THEY WON'T MAKE A NEW DRUG BECAUSE THEY DON'T THINK THEY WOULD MAKE ENOUGH MONEY . PEOPLE YOU NEED TO SPEAK UP OR YOU WILL BE PAIN FOR A LONG LONG TIME.

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    1. Mine was taken out of a incision in my stomach and I was put on amitrypteline I think that's how u spell it and it works great and keeps attacks from happening. This has been the worst pain. Took doctors a year to figure out what was wrong with me. Happened after gallbladder was removed. Goodluck

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    2. After 22 years of suffering from SOD I found relief within 2 weeks.
      No more pain with Max Gxl. Check out the media page and goto "the doctors choice" at www.max.com/cellularharmony.

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    3. I had my gallbladder removed. .it had exploded. .I had an open cholecystectomy and then I started having a pain that I can only describe as someone doing the wave. My gastrointerologist did cUT it..and it's only an occasional twinge..I ended up having a hepaticojejunostomy. Hope things have gotten better.

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  2. IF ANYONE ANYONE IS SUFFERING FROM SPHINCTER OF ODDO DYSFUNCTION AFTER HAVING YOUR GALLBLADDER REMOVED PLEASE LEAVE A COMMENT.

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    1. I have sod also have had ercp 3 times muscle has been cut 3 times. On average Im hospitalized 7 times a year. For pain management. I wear a 50 mgm fentanyl patch changed ever 48 hours and oral dilaudid for intermittent pain. I too had my gallbladder removed but was to late my gallbladder had not was not working for several months. I had went to a different hospital in December 2009 they sent me home and said I probably had a ovary that had burst. On March 17 2010 I was vomiting bile my husband took me to a different hospital. They immediately took out my gallbladder. 2 weeks later I was back. In hospital vomiting bile again
      Because my gallbladder quit working it damaged my pancreas. I go to a pain clinic for my meds but when I
      Get an attack I'm hospitalized with iv dilaudid and also still have fentanyl patch changed every 48 hours
      I was deemed disabled September 2013 after 3 yrs battling social security. Finally a social security judge declared me disabled
      they back paid me 3 yrs but it does not make up for all the pain I go through. Im only 47 and I got sick at 42 it's taking a toll on my family but they are supportive but its hard when I get sick I'm in bed all day until its to bad then I go to the hospital and I'm in there for about 5 days
      For those that don't know this condition does not get better just worse and only can only be managed through diet and pain meds
      On my papers from the social security it says my disease will result in death very hard to read that
      Thanks for letting me share.

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    2. Had a gastro doc nurse call me up and urgently told me due to a bad tests that was performed this doc wanted me to go to hospital for an outpatient "Endo like procedure". I tried to ask her questions but was abruptly cut off and told to ask the gastro doc before Ercp procedure. I obediently did what I was told and went to hospital. The oppotunity to ask this doc did not transpire as she came in 3 mins before the procedure was to begin but I had a sudden urge to take my semi naked horned body and jump off that table! After 7 days in that hospital suffering death like symtoms of severe pancreatitis! This terrible greedy doctor never told me ANYTHING! I was too sick to talk when she came in my room at Hoag hospital. But my healthy body went from 130 to now 107 and still wasting away with such terrible pain! Back in 2010 I went to a well respected SOD MEDICAL CENTER in OC to have the " experts" examine me to try and relieve my pain! This specialist was supposed to just look to see if this surgical site from the first doc cutting the sphincter was narrowing again. I begged this specialist as I had a bad feeling I wiykd get pancreatitus again not to touch me but try to see what was causing my pains. This specialist tried in vain to convince me that it was the contrast that caused my pancreatitis and he wouldn't use it only 1% would get it. I still had a bad feeling told him I had to absorb the information gained so I could make an intelligent decision! But nooo, he went ahead cut me open again, woke me up and had my sis take me home. After the powerful drugs wore off byb12 mid I say up in bed feeling like death was at my door!i crawled to the bathroom and puked green bike and couldn't stand up! I crawled to my sis bedroom by 3am and asked her to get me back to UCI HOSPITAL. By the time we arrived to ER I JUST PAASED OUT from the horrible pain! I had severe pancreatitis again and had to stay in that hospital 5 days? My kidneys was shutting down! By powerful intercessory prayer from neighbors and family my kidneys for healed I peed gallons of build up water weight for 2 days! Past 4 years been with kaiser who refuses to acknowledge SOD! Refuses to give me pain medication! I look so old and have constant discomfort! Especially eating I pay so I eat enough to stand up. O am venting thru this site! I seen so many docs at kaiser Permanente! The last gastro doc i had to get up as he was litterally telling me there was no such thing as SOD and I needed psych drugs like anti deppressans! I got up and left him sitting there after he said really insulting things personally attacking me! God saw it!FROM these incompetent doctors to now pharmacists who also refuses to fill what pain meds I can get, I am at the end of this long journey. In not blamming God as I understand in this evil world- crap happens! But I don't know what else can be done to repair this mess of scar tissue from 2 surgeries none I wanted nor agreed to! I am not depressed as I believe in heaven and Jesus Christ. I know where I'm going when my Lord calls me home. But what really creates all the physical and emotional pain is the terrible was fact that these kaiser doctors will not accept my issues with a twice cut scar tissue that I am concerned Had narrowed considerably and very sluggish. I am getting out of Kaiser Permanente thus fall. But I need pain therapy desperately and not receiving it like I need to work in my business and pay my bills! I never took pain meds before this crap happened to me so I am not a "drug seeker"! So exhausted with begging kaiser to help me! I am so very sorry for anyone suffering with this horrible SOD! I know your pain! We need good doctors to help us! Now before it's too late!

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    3. I can't imagine what you have gone through. I have suffered with SOD for year as well only told ot's ibs and to try antidepressants. Finally this year was diagnosed and had ercp 3 weeks ago but I am so consumed with the fear of the pain coming back I can hardly function. I am sisgusted by the treatment you have received. I live in Canada and although we probably have longer wait times, I think we may have better legalities with fair treatment, not sure? I wish you could move here. You have to find a better hospital and pain management clinic. I am on an excellent SOD support group that I highly recomend. So much info and recomended Doctor's/pain management clinics. Praying for you!!!!!
      It is called:
      The Sod awareness and education network support group. Facebook.

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    4. I just found the sod awareness and education network on facebook. .thank you

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  3. Look into taking Magnesium supplements. It has helped me. Magnesium relaxes the muscles and the Sphincter of Oddi is a muscle. Take it three times aday and at bedtime. It will also keep the ducts open. Good luck.

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  4. I JUST STARTED TAKING A PERSCRIPTION ENZYME CALLED ZENPEP.I AM GETTING SOME PAIN RELIEF FROM SOD. GO SLOW ONE AT NIGHT WHEN YOU EAT. AND IF YOU NOTICE ANY RESULTS YOU CAN ADD MORE LATER. THERE IS A 50.00 REBATE ONLINE. GOOD LUCK FROM BOB

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  5. THE ZENPEP STOPPED HELPING MY SOD PAIN AFTER TEN DAYS. DON'T WASTE YOUR MONEY ON IT.

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  6. I have been suffering with SOD III for 4 year. I had my gallblader remover with a cut in the stomach and through the belly button. I have had 2 ERCP and been on several medication and NONE of them work.

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  7. I am leaving a comment. cause my doc said that is what i have and i cannot work cause it hurts so damn bad.i am on percocet for the pain its the only thig that gives me relief. i seem to be ignored by my doc about this. i was never told before surgery of my gall bladder that was working at 98% that this could be the results of it. and it hurts worst now then before. i am so depressed cause of it too

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  8. THE SAME FOR ME I HAVE BEEN IN PAIN WITH SPHINCTER OF ODDI DYSFUNCTION FOR ALLMOST TWENTY YEARS. I HAVE HAD ALL TEST AND THREE ERCPS WITH SPHINCTEROTOMY. NOTHING WORKS FOR ME. ALOT OF TIMES I GET ALOT OF RAW BILE IN MY STOMACH. MAKES ME DEATHLY SICK. DRUG COMPANIES,DOCTORS, FDA~ PLEASE HELP US. THEY NEED TO MAKE A MEDICATION TO RELAX THE SPHINCTER MUSCLE AND HELP WITH PAIN AND NOT UPSET OUR STOMACHS." IS THER ANY ONE OUT THERE" HELP~HELP~HELP~HELP~HELP~ THERES ALOT OF US.

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  9. I have been suffering with SOD for two years. It started just after I had my cholecystectomy (gallbladder removed). And, none of the doctors I saw could tell me what I had. I searched for two years and just recently came up with SOD after searching and searching. All the doctors that told me I was crazy now say it all makes sense! I wish they had never taken my gallbladder out. It turns out that the only reason I was having pancreatitis (reason for cholecystectomy) was due to a sensitivity to codeine which naturally causes the sphincter to spasm. It was prescribed to me for my headaches which I get every day due to an occipital neuralgia because of a neck injury. I kept telling the doctors that I believed that codeine was the culprit, but they told me that that was "impossible" and that it needed to be removed. They said "well if we remove it then you may feel perfectly fine, all back to normal, or you may feel the dsame, but removing it can't hurt you, you don't need it." They never warned me about the dangers. To make matters worse the day after surgery I was hospitalized because of pancrreatitis due to the hydrocodone they gave me. I threw up so much I opened my stitches and bled everywhere and could not take any pain killers after the surgery. I used to only be sensitive to codeine but was able to take other pain killers and now I cannot take any. I can also no longer take SSRIs which the doctors also told me was impossible and could never cause pancreatitis or elevated liver functions, but every time I take them I end up hospitalized. And can't even take over the counter cough syrup (Dextromethorphan). I also can't take immuran, for the same reason. Immuran was for my ulcerative colitis, so now it is harder to control flares, and I am on an even stronger, but different type, immuno suppresant given through IV, with many more and more serious side effects. Now I get upper respiratory infections about once a month and can't even take cough syrup to help. Also the only thing I can take to help with my major depressive disorder is a Neurepinephrine-Dopamine Reuptake inhibitor, which does not work as well. And I can no longer take any pain killers to help with my headaches, I just have one every day, they feel like someone has taken a hot poker and inserted it into my brain, tracing the nerve all the way to my neck. And for the pain of SOD which can also happen seemingly randomly, I have nothing. I have tried antispasmodics and they do nothing. The only thing I can do when an attack occurs is to go to the hospital and get delaudid. It is the only opioid I can tolerate. I learned the hard way that morphine is one of the worst opioids when it comes to causing SO spasms, it only makes my pain worse. I can't afford to go to the hospital all the time, however, so I simply endure the pain, nausea, uncontrollable vomiting, diarrhea, and fever. It is the sickest I have ever been and the worst pain I can imagine, and have ever experienced. It feels like there is acid eating away at my insides, radiating all the way through to my back and up my right shoulder. It hurts to move, breathe, and nothing relieves the pain except delaudid. My colon may have to be removed because it cannot stay in remission (UC), which would mean a colostomy bag for a few months at least or forever if I am unlucky. It also means I would probably have diarrhea for the rest of my life. I am always in pain and get no relief, I am always throwing up and sick. I am only 21, female. I just don't know what to do.

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    1. Please read the blog on
      www.againstallgrain.com

      She has UC and cured it with cutting out grains. You may find that it helps your headaches and SOD. It has stopped my SOD and only when I "fall off the wagon" for grains does my SOD act up. Also, tramadol has been shown to relax the SOD on manometry tests. It can help with headaches also, but changing your diet will likely help so much. Good luck!

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  10. I have had 4 ercps two resulting in hospital stays.

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  11. I too have this condition. I have had 4 ERCPs which each time I wake up screaming after each procedure. In order for me to have a job, I eat low fat yogurt with one rice cake for breakfast & lunch. I have no pain from that. I try to eat a normal dinner but it requires a GI cocktail with Vicodin and lying down with a heating pad. I take GI cocktail for all meals and at bed time. 1/2 a vicodin for morning & lunch with my meals. Mornings are the worst for me. Avoid High fructose, greasy, fruits with skins, dark drinks like coffee, strenous exercising, constipation, morphine (causes more spasms), fatty...in other words live like a VEGAN. But I am a meat eater...so, i will forever be in pain. Ever 2 years I get a expermintal stent put it. It helps but you know when it's time for a new one. Last advise; take a bit for eating the meal. You will know with a few minutes whether you can eat that. GOOD LUCK!! I understand and feel your pain.

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  12. THE SPHINCTER OF ODDI IS A LITTLE IMPORTANT MUSCLE THAT OPENS AND CLOSES EVERY DAY A LITTLE TO LET A SMALL AMOUNT OF BILE INTO YOUR STOMACH TO HELP YOU DIGEST YOUR FOOD. AND WHEN THIS MUSCLE IS POKED, PRODED, AND SLICED, IT ONLY MAKES IT WORSE. THE DRUG COMPANIES NEED TO MAKE A DRUG THAT RELAXES THE SPHINCTER MUSCLE, AND REDUCES THE PAIN, AND DOES NOT UPSET OUR STOMACHS. WE NEED NEW MEDS FOR OUR PROBLEM. AND UNTILL SOME ARE MADE WE ARE GOING NO WHERE. I SUFFER NOW FOR ALLMOST TWENTY YEARS. IF THEY HAD SOMETHING FOR SOD WE ALL WOULDN,T BE ON THESE SITES BLOGGINGS ABOUT OUR DISEASE AND PAIN. TO HAVE SPHINCTER OF ODDI DYSFUNTION IS TO KNOW SPHINCTEROF ODDI DYSFUNCTION.MOST DOCTORS DON'T EVEN KNOW WHAT SOD IS. ITS NOT A REALLY BIG THING LIKE HEART DIDEASE OR DIABETES. DON'T EVER GIVE UP ITS A ROUGH JOURNEY WE MUST WIN AND CONTROL THIS HORRIBLE DISEASE. WRITE THE FDA, WRITE YOUR REPRESENITIVES WRITE THE HIGHER UP SOD DOCTORS. START A DISCUSSION, AS I AM DOING RIGHT NOW. EVIDENTLY WE HAVEN'T GOTTEN TO THE RIGHT PEOPLE YET.

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  13. I HEARD THAT THERE IS A THREE YEAR STUDY PROGRAM THAT PEOPLE HAVE SIGNED UP FOR. THEIR STUDING SPINCTER OF ODDI DYSFUNTION. MAYBY IN SIX TO TEN YEARS THEY WILL MAKE A MEDICATION FOR SPHINCTER OF ODDI DYSFUNCTION. I HOPE I LIVE THAT LONG.

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  14. 41 year old male..been dealing wth this issue for years ever since my gallbladder was taken out..please help..any meds or herbs anyone has tried that can help ..?..ill try anything

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  15. I HAVE A FEW GOOD TRICKS THAT I USE TO CONTROL MY SOD PAIN IF ANYONE IS INTERESTED.

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  16. bob yes do tell your ideas!!! I have had it since I got my gallbladder removed over seven years ago.

    Thanks Katrina

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  17. KATRINA, JUST SEARCH HOW I CONTROL MY SPHINCTER OF ODDI DYSFUNCTION AND YOU WILL SEE THE SITES THAT I BLOG ON AND I EXPLAIN MY SYSTEM . ALLSO THERE IS A VERY GOOD SITE CALLED BLOGTHESPHINCTEROFODDI.COM IF YOU GO TO THIS SITE YOU WILL SEE THE MAGNITUDE OF PEOPLE THAT SUFFER FROM SPHINCTER OF ODDI DYSFUNCTION. I HAVE BEEN SUFFERING FOR TWENTY YEARS FROM SOD ASK ME ANYTHING .

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  18. I having been suffering with SOD type III for 7 years. I am having a Sphincteroplasty done on March 29 that will stitch the Sphincter muscle open so it will not have spasms. I also have the same symptoms as everyone else and have been to numerous doctor's trying to receive help. The best place that specializes in SOD is the University of Indianapolis Medical Center. Patient's come all over the world to receive help from this Hospital. My insurance will not cover me to go there for help at the present time. I live 3 hours away and traveled the distance to Indy because the doctor's care was exceptional. I am currently undergoing treatment at the University of Cincinnati and it has taken me a year and a half to receive surgery and it has been an up hill battle. The surgeon has warned me that he is not sure if this procedure will work but my doctor in Indy did recommend this surgery. I am confident that this will work for me. I have no quality of life and am not able to work. I have been off of work now for over a year while fighting for treatment. I filed for disability while trying to get to this problem fixed. My family is struggling while I am not working. I just not able to due to the pain. What are we suppose to do? Keep living this way. NO! I am a fighter and will not stop until someone fixes me. I can get depressed because it has taken so long to find the right doctor. I have a great support system and they keep me going. If anyone would like phone number's of the Indy hospital or even the Cincinnati location let me know. I will post how my surgery goes because I am keeping positive thoughts this will work for me. There is HOPE.

    Shelley

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    1. Shelley how did your surgery go? I am currently fighting the same up hill battle for SOD cat 3 in Liverpool England so unfortunately travelling to where you recommend is out. All i am told by docs is "cat 3 we cant touch there is no evidence that it is beneficial to operate" because of the risk of that could happen during an operation they won't touch me (hope this is making sense!) I am 37 yrs old, I have 4 young children i had my own business, which ive had to close down due to SOD. this is destroying me I like you am in so much pain constantly my docs have me taking a whole cocktail of medications i swear I rattle when I walk!! My doc told me 20-30 yrs we might be able to help you! That look how far we have come with treatments for IBS in the last 30 years fingers crossed if we keep getting more people with SOD we might be able to help cat 3 sooner FFS I don't know how I didn't punch him ���� I really hope you have had positive results Katie

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    2. Shelley. .hopefully you are doing well.I am happy to hear that there is a place to go that is only a few hours from me in the western suburbs of Chicago.

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  19. iam a 37 old female. and have been suffering with sod for 1 yr now. i had a ercp done 6 months ago. had some relief for a couple of months.then recently i have had a few really bad attacks and the only way i get relief, is to take a pain pill. which, sometimes doesnt even take all my pain away. im so depressed over this. i really dont know what to do from this point!! i also had my gallbladder removed almost 6yrs ago. i dont even know when or what kind of food is going to bother me! this is so frustrating!

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  20. I AM DOING WELL NOW FOR EIGHT MONTHS NOW. I HAD BEEN TO DOZENS OF DOCTORS FOR TEST AND PROCEDURES AND FINALLY WHEN I TOLD THE GASTRO DOCS ABOUT THE LARGE AMOUNTS OF BILE IN MY STOMACH THEY DIDN'T WANT ANY PART OF ME ANYMORE. I READ ABOUT ALOT OF PEOPLE THAT ARE BEING REFUSED THESE PROCEDURES BECAUSE THE DOCTORS ARE NOT SURE IF THEY CAN EVEN HELP THEM. I THINK THAT THEY ARE TO A POINT WHERE THEY CAN'T DO ANYTHING FOR ALOT OF PEOPLE WITH STAGE THREE SPHINCTER OF ODDI DYSFUNTION.IF THERE WAS SOMETHING THAT WOULD HELP US WE WOULDN'T BE ON LINE LOOKING FOR A MIRACLE. I THINK THAT FOR MANY PEOPLE THERE HAS TO BE A MEDICATION MADE TO CONTROL THERE SPASMS AND PAIN. I CONTROL MY PAIN EVERYDAY. JUST TYPE INTO YOUR SEARCH BOX (HOW I CONTROL MY SOD PAIN) TRY MY SYSTEM WHAT HAVE YOU GOT TO LOOSE IT WORKS VERY WELL FOR ME. GOOD LUCK

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  21. THERE IS A SIX YEAR STUDY GOING ON NOW FOR SPHINCTER OF ODDI DYSFUNTION THAT STARTED IN 2008 AND WILL RUN UNTILL 2014 AND THEN HOPEFULLY THERE WILL BE A MEDICATION MADE IN ANOTHER THREE YEARS THAT WILL CONTROLL OUR PAIN AND SPASMS AND WON'T UPPSET OUR STOMACHS. I WRITE A LETTER EVERY WEEK TO THE COMMISSIONER OF THE FDA . HER NAME IS MARGARET HAMBURG. BUT I NEED HELP FROM MORE PEOPLE TO WRITE THESE LETTERS IF WE DON'T COMPLAIN ABOUT OUR PROBLEM NOTHING WILL BE DONE. IF YOU WOULD LIKE TO HELP AND WRITE SOME LETTERS I WILL GIVE YOU HER NAME AND ADDRESS. PLEASE WRITE YOUR LETTERS TO (THE HONORABLE) MARGARET HAMBURG,MD. COMMISSIONER FDA 10903 NEW HAMPSHIRE AVE SILVER SPRINGS, MD 20993~0002 LET HER NOW WHAT WE HAVE BEEN GOING THROUGH, AND THAT WE NEED HELP. THANK YOU FROM BOB

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    1. No medication will be created Freon that study. I was a part of it and it was proven that all of their methods only helped an extremely low percentage of people. Fortunately I was blessed and got tremendous relief from temporary procedures and muscle relaxers and then permanent relief from a brutal yet efdecti9 surgery. Due to the results of this study, the leading hospital for treatment of SOD and its related issues, has now drastically scaled back its intervention measures and they are extremely conservative with treatment. I'm so glad I got in when I did. I participated in 4 studies for them as I had suffered SOD for 14 years.

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  22. I have had sphincter of oddi for 12 years. It cost me my job and many good things in life. I have been to the ER probably 100 times. I have had 2 major back surgeries without any pain medication. I have pain all day everyday. I have migraines and back pain and an autoimmune disorder. I cannot believe what this condition has done to so many of our lives. When I had my gallbladder removed 12 years ago, the attacks started within a week. Severe abdominal pain. I couldn't lay down, couldn't stand, couldn't walk. I always say its like your a fish out of water. I crawl on the floor bent over. Kneel with my head on the couch. It is the most horrific pain one can have. The back pain comes close but the sphincter of oddi is killer. After my surgery no doctor knew what was wrong with me. I would go to the er and they would give me morphine. Talk about suffer. It made the attacks worse. Any pain medication would make the attacks worse. Bentyl, aciphex and levsin will help if your lucky. And at times it takes more of them to help then you should take. The levsin can bother your heart if you have to take too many. NuLev was quicker acting buy of course they took it off the market. I've come to realize over the years that there are many people out there like me. One would think someone would come up with a medication we can take for pain. I literally can handle nothing but tylenol which does nothing for me. What happens if one of us need chemo. Will that cause attacks too. I would bet on it. It is a huge fear of mine as I have been taking my mom for her chemo for a long time now and wonder what happens if I would ever need it. There are a few things I have noticed in the articles I have read. I feel bad for all of you hear as I know the pain. One person says they can take a vicodin and another says they take percoset. These are two meds that cause serious attacks. I would check further to make sure that you indeed have SOD and not something else. These pain meds work my causing small spasms in the body thus reducing pain. These small spasms is what sets off the sphincter of oddi that is destroying our lives. I pray for a solution for all of us.

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    1. I don't know where you live but Im in the Minneapolis area my surgeon is Dr Martin Freeman he is one of the top 5 best Sod surgeon in the US
      He sent me to a pain clinic I'm allergic to most pain meds I take levsin Fentanyl patch dilaudid nortriptyline
      It helps but as I said im in a previous text it's not a cure its a baind aid

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  23. YOUR SYMPTOMS ARE THE SAME AS MINE, IT'T HARD TO BELIEVE THAT PEOPLE ARE STILL GETTING THIS DISORDER AFTER ALL OF THESE YEARS. I HAVE SOD FOR TWENTY YEARS NOW AND I HAVE BEEN THROUGH HELL. DAVOCET WORKED GREAT FOR ME FOR YEARS AND THEN THEY PULLED OFF THE MARKET IN 2010. MY DOCTOR TOLD ME THAT SOD WON'T KILL ME BUT I WILL BE IN PAIN FOR THE REST OF MY LIFE. MY PHARMACIST TOLD ME THAT THE DRUG COMPANIES WON'T MAKE US A MEDICATION BECAUSE THEY WOULD NOT MAKE ENOUGH MONEY OFF OF IT? THERE IS A GREAT SITE CALLED BLOG.THESPHINCTEROFODDI.COM WHERE YOU CAN MEET AND TALK TO ALOT OF PEOPLE THAT SUFFER FROM THIS DISEASE.

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  24. I too have SOD after having my gallbladder removed. I cannot take any NSAIDS, antibiotics, or any pain medication (dilaudid, percocet, etc.)- they all cause attacks. Too much alcohol also causes attacks. Donnatal works to stop the spasms. Recommend trying if you haven't already.

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  25. Wow...I am reading the story of my life here over and over again. 15 years ago after many, many tests and persistence on my part, a test was finally performed showing my gallbladder not functioning properly and had it removed. The pain came right back within the year. I assumed that this was just my new way of life and that I had to just live with it. Fast-forward to 2 years ago. I was suffering with pain on my side and terrible constipation. Again many, many test showing nothing. It was to the point where my primary doctor was telling me that maybe this problem is in my head and perhaps I may want to see a psychiatrist. Well, turns out after more persistence and a risky test (ECRP w SOM), turns out my pressure was more than 3X normal in my bile ducts. The GI doc made a cut to relieve the pressure. I have been fine now up until 2 month ago...pain returns and now back to the docs for more testing. I'm sure it's the SOD again. I'm so frustrated and fed up with living with this pain!

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  26. I am another SODs III, newly "suspected". I am working with the University of Washington in Seattle. All of my other doctors told me I was faking, doctor shopping and a drug addict, pretty much. Oh, they don't come right out and say it; but nevertheless, you know what they are thinking. You have seen their eyes cloud over when you speak of your pain, over and over again. I am at my wits end with this absolutely horrible disease. I did NOT have my gallbladder out; I had an endoscopic procedure to look for a gastric bleed. The doctor went down into my duodenum. I suspect he "zapped" my Sphincter of Oddi at that time. It's all been unbearable pain and illness ever since. I started by vomiting bile violently without being able to stop. I had to go to the ER on a Saturday to stop the vomiting and put myself out of pain. For the last 6 months now, I have had biliary colic on a constant basis. There is no “pain chart” for this pain. On the normal scale, I figure this rates about a 20. 10? Who are you friggin kidding? It really only abates for a day if I'm absolutely lucky. I have not had a "not so bad day" in months. I don't know why I am in constant spasm, no one can answer that. At least I am under treatment with doctors that are taking me absolutely seriously now. At least that feels good. This has been the most demoralizing experience of my life. I have never been accused of the things I have been accused of with this disease. The doctors need to understand that depression and anxiety are part of the illness as well. My pivotal point with my new GI doctor on my depression was when I challenged her to go through what I am going through on a daily basis and to NOT be depressed or anxious. The next time I saw her, I felt as if I were working with another doctor completely, one that really understood what I was going through. What a change. The doctors need to understand that we never could have imagined being in this type of pain on a 24/7 basis, it is unreal. I am a 48 year old woman and am one of the strongest people I know, this illness has brought me to my knees. The only combination that has worked for me is Vicodin and Levsin. One without the other is not so good. Together they shut my spasms down for 3 - 4 hours at a time if I’m lucky. My doctor is prescribing 6 Vicodin a day, 12 Levsin a day, and 4 anti-nausea a day. I take these every 4 hours exactly, except the anti-nausea; she will only allow 4 of those per day. When I say I take them every 4 hours that means without fail, even in the middle of the night. Do not allow this pain to get ahead of you, ever. If you do, it’s pretty much a trip to the ER. If I stay the course nice and steady, I can work for the most part. When the bile and pancreatic fluids back-up into my biliary system, I am in bed for 5-7 days at a time. These fluid back-ups are every 4-5 weeks. I know exactly when they are happening. Sometimes they shoot fluid into both sides of my chest; sometimes they just “bloom” in my chest for lack of a better description. I can feel the hot liquid. Every time they cause me to become extremely ill. Sometimes I can feel a “dripping” or “dribbling” sensation in my back or chest directly beneath my breast and usually on the right side. I know when my kidneys are being pounded that my body is trying to process out the toxins that have made it into my system yet again. I always have blood in my urine now. I have had a complete workup on that as well. According to all of the doctors, I am the absolute picture of health, except for this one horrible thing, SODs Type III. I expect that I will be fully disabled within the next year. I don’t say this to garner sympathy; this is a statement of fact. I hope everyday that someone, somewhere will come up with a better drug therapy or a new surgical procedure. I know we feel hopeless and helpless as well. I know I can do this damn thing, but I hate every moment of it. I am furious with the doctor and angry at the pain.

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  27. I HAVE BEEN DOWN THIS SPHINCTER OF ODDI DYSFUNCTION ROAD FOR OVER TWENTY YEARS. I HAVE BEEN TO THE HOSPITAL SEVERAL TIMES AND THEY HAVE ALWAYS SAID TO ME, WE CAN'T FIND ANYTHING WRONG WITH YOU. IT HAS NOT BEEN A HAPPY TWENTY YEARS FOR ME USUALLY I JUST WISH FOR A GOOD DAY WITHOUT PAIN. I BLAME ALL OF MY MENTAL DEPRESSION ON SPHINCTER OF ODDI DYSFUNCTION. THE DRUG COMPANYS NEEDS TO MAKE US A NEW MEDICATION TO CONTROL OUR PAIN. I KEEP SAYING TO MYSELF' TAKE THE PAIN LIKE A MAN,WHAT DOSE THAT MEAN. I ALLSO SAY TO MYSELF, LOOK AT ALL OF THE PEOPLE THAT ARE DIEING FROM OTHER THINGS LIKE CANCER SO I AM LUCKY BECAUSE I ONLY HAVE TO HAVE THIS PAIN FOR THE REST OF MY LIFE. READ MY SYSTEM ON HOW I CONTROL MY SOD PAIN FOR ALLMOST ELEVEN MONTHS ON A SITE CALLED. MDJUNCTION OR JUST SEARCH~ HOW I CONTROL MY SOD PAIN ~ AND LEAVE SPACES INBETWEEN THE WORDS AS I HAVE. GOOD LUCK DON'T EVER GIVE UP

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  28. Hyomax works awesome for me when I feel an "attack" coming on. I have amitriptoline (sp) as well but stopped taking it cause it made me too tired. I pop a hyomax under my tongue and within a few minutes everything calms down. THANK GOD!!!! Those attacks of SOD are the worst pain ever!!!!! I've ended up in the ER several times due to the flareups and it literally doubles me over in pain and really messes with my breathing too. Hyomax I believe is my savior and my husband even makes sure they are close by at all times! It scares the bajesus out of him too when it happens. I wont have the ERCP due to the risks. Hope that helpful hint about the hyomax helps someone out there. So glad to know I'm not the only one out there with this weird thing. BTW.....Hyomax is very cheap too.

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  29. I have had trouble with colics as well. Gallbladder removed year n half ago, but the pain never stopped completely but it was bareable, then 8 weeks ago full on attacks happened again , after i got an increase of my morphine.

    For now I am not sure if it is SOD, Had an MRCP today to check if there r any stones left in my galways.

    The major thing I found is that the morphine I was taking was making it all worse.. so some good advice, even though the pain is indeed 20 on a scale of 10 as someone wrote above..morphine will only make it worse as it builds up the pressure in the gallways.
    Many docters dont know this and its time they do..

    good luck everyone, i myself am just hoping the MRCP will show something and I wont have to go through the trouble of finding a place where they do ERCP with SOM.

    also its bad that docters treat me and as i read alot of others with major stigma..they dont realise how bad the pain is.

    take care
    J

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  30. My daughter is suffering and she is 21 years old. She's been on constant pain meds. Can anyone tell me if we can sue the hospital or Dr that removed her gallbladder? She also had hers removed through the stomach and has been in and out of the ER several times for the past 2 months in severe pain.

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  31. ANOTHER THING I JUST DISCOVERED THAT THE SPHINCTER MUSCLE DOSE NOT LIKE COLD STUFF, LIKE COLD WATER , ICE ,SLUSHIES, COLD ICY POP~ DRINK YOUR LIQUIDS AT ROOM TEMPERATURE.

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  32. I've had my gallbladder removed two years now and I get really bad pain in my upper right stomach and I feel like I'm having a gallbladder attack just with sharp pain in my abdomin. I can't lay on my right side, back, or stomach without feeling nauseated. I can't eat ANYTHING without feeling like I'm going to vomit. I've been in the ER several times, gone to 4 doctors including a specialist and all they tell me is that it's the clamps they used for my gallbladder removal and give meds and IBS then give me medicine and send me on my way. The medicine is NOT working. I finally had enough and went back to my doctor and told her I believe I have SOD and she doesn't know too much about it so she referred me to U of M, but I have to wait until May to go. Day after day I fight pain and nausea and no one knows what is going on with me. Does it sound like I could very well have SOD? My liver enzymes are elevated, there's foods that I absolutely can not eat or ill be in the hospital, and I can pinpoint exactly where the pain is when I have it, it's where the spincter oddi is. I'm scared about the tests ill have to go through but I've been through MCRP (I think that's it) blood work, ultrasounds, X-rays, plenty of meds and nothing shows up as of stones in my bile duct, tumors, etc. I have literally exhausted all but SOM test and it scares me!

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  33. ALONG WITH MY SYSTEM ON HOW I CONTROL MY SOD PAIN I JUST ADDED A MEDICATION CALLED CLONAZEPAM (KLONOPIN) 0.5MG TABS . THIS MEDICATION WORKS QUITE WELL FOR ME, IT SEEMS TO RELAX THE SPHINCTER MUSCLE AND RELEIVE THE PAIN. I ONLY USE IT A COUPLE TIMES A WEEK WHEN THE PAIN IS SEVERE. I WON'T GIVE UP AS SOON AS I GET IMFORMATION OR ANYTHING NEW FOR OUR PAIN I WILL LET EVERYONE KNOW GOOD LUCK

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  34. I had my gallbladder removed Jan. 2010. My recovery was hard, I slept in the recliner for 2 weeks. I never had the "run to the bathroom after I ate". In May 2010 I had a "gallbladder" attack but no gallbladder. I went to the ER and they could not figure out what was wrong. I went back to the doctor that removed it and she ran every test under the sun. I went from May 2010 to Nov 2010 till she gave up and sent me to a specialist. He diagnosed me with reflux and ulcers. Well needles to say my pain still has not stopped. After multiple CT scans, MRI, EGD, and 14 times being tested for hepatitis no one could figure out why I was in pain (upper right where gallbladder was and around to my back). January of this year I had an attack that lasted for 2 days. I went to my gastro doctor and he sent me to get a MRCP, then from that they thought it was Primary Biliary Disease. Then I started having itching that is unbearable. Then I had liver biopsy cause they thought it was another disorder. Then I had a ultrasound, well thankfully the tech took her time and noticed I had bubbles in my liver which indicated it might me SOD. My gastro doc sent me to a specialist about 2 hours away and he sent me last week to have a MRCP with secretin and contrast. Well at least now I know what I have SOD stage 2. He is very cautious and he does not want me to have ERCP unless I go to stage 1. So I have to have more blood work to make sure I don't have liver cancer and meet with him the first of June. I don't like the thought that I will be stuck with this, but I am thankful that after 3 years of pain I now know what is wrong with me.

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  35. It has been since Jan 2013 that I have had a major attack, I have had daily pain but i have learned to manage that. Saturday (yesterday) I was woke up at 430 am in pain and the attack lasted till Sunday (Today). I meet with my specialist in 2 weeks, but I am refusing the ERCP, it is just to much of a risk.

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  36. My attacks started 5 yrs after by gallbladder was remove laproscopically. Just 3 tiny holes no cutting. I had my hips replaced the year before the gallbladder in 2001. I have had back surgeries and another hip replacement and I am on very high doses of pain meds, Fentynal 100 mc and up to 120 milligrams of oxycodone. I get these attacks about 2-3 times per year and when I do it is agonizing, even with all the pain meds. I have to go to hospital and the dilauded will calm the pain I have a prn for dicyclomine which is an anti spasmodic made for gastro spazams and if taken second it starts is last about 1/2 hour or less if even that long. I am very surprised no one has even mentioned the medication I definitely know an attack will happen after having ongoing stress for weeks. I'll even tells ones around me I am going to have one a week or two before I do. I have learned to minimize the stress and it has been over a year since my last one. 2summers ago I had an attack that lasted 5 days. I lost 13 lbs. I have been to the surgeon and after hearing the odds and especially after reading this, I will not get any surgery for this. Any way try to reduce your stress. upset stomach and vomiting are physical reactions to high stress So for me letting the stress go is working, I take a Klonipin at night to help me sleep, But will try one the next attack along with the dicyclomine .-

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  37. I did not mention I am 56 yr old, and my dr. sais it is papillary stenosis., I also had a gastric bypass in 2008, so an ercp is out of the question. They have based their findings in that gallbladder had been removed and having several ultrasounds and changes to the duct and description of what is physically going on during an attack. Well good luck every one, and check with your DR about the the anti spasmodic medication. O yeah I describe the pain as a women having very bad contractions. instead of the uterus

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  38. My daughter is 15 and is dealing with the same pain as all of you with what I believe to be SOD III. She had her gallbladder out at age 12 due to it not functioning and Dx of biliary dyskinesia. She has had constant bile dripping and causing diarrhea and lives on 4 to 6 Immodium daily to control this. the right upper quadrant pain hospitalized her in May and that is when I really started finding out about SOD. She has had 2 colonoscopy, 2 endoscopy, 2 capsule endoscopy, MRCP, CT scans, Ultrasounds, MRI, X-RAYS, lactose and other intolerance testing, biopsies for Crohn's disease, Barium swallow upper GI studies, and multiple ER trips. I tried homeschooling her for 8th grade year because the schools were so fed up with her illnesses that no one believed us about how sick she gets. She is having another attack from this right now and we have no idea how long the pain will last. She screams and cries from the pain, and no pain meds seems to help. The doctor gave us Donnatal to try in hopes of a solution, but it did not help either. I am trying to get a referral to a specialist that does ERCP to get a consultation for her...this is worse than when her gallbladder was still in tact. If I could re-do the choice of having it removed, I would never have allowed it. She had this done laparoscopically as well and had a terrible time recovering. I don't understand where all this bile is coming from and why the doctors love to insist that she is having mystery "functional abdominal pain". it is very clear after reading all of your personal testimonies that this is a REAL problem. you all have my prayers.

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    Replies
    1. I'm so sorry to hear about your daughter. Has she tried tramadol? It relaxes the SOD. Also, the diarrhea could be excessive bile salt and there is a medication for this. She can also take a calcium supplement to soak up the extra bile. I'll put her in the prayers of my heart.

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  39. I have been dealing with SOD for 3 years I take hyoscyamine sulfate with a meal to control the spams I can not take any narcotic pain relievers but with above mentioned methods I can take ultram. When I have a severe episode I gave found that chugging water or decarbonated beverages while rubbing an IceCube across my belly neck and face my attacks last around an hour or more of extreme pain. I can not even draw a breath. That is All that helps me. Try it!

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    1. Try dicyclomine. It works much better than hyoscyamine. I take it as soon as I start having an attack and within 5 minutes it relaxes the muscles and the spasm stops.

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  40. I have had SOD for 12 years. In those 12 years I have had 6 bouts of pancreatitis, several ERCP's, a sphincterotomy, and more meds that should be consumed by one human and no relief. I go the day after tomorrow for another ERCP with sphincterotomy as my bial duct is dilated again. This is the most depressing illness. The pain is unbearable and there never seems to be a light at the end of the tunnel. I hate to read so many stories of other who have SOD, especially the younger patients, it breaks my heart.

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  41. I have had SOD off and on for 50 years, and am just now finding out what the problem is. Fortunately for me, 1 mg. of Valium = diazepam every three hours or so keeps me pretty much pain free. Everyone who has posted here please at least try VALIUM!

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  42. I'm having an ERCP and having my sphincter of oddi cut plus a stent put in my pancreatic duct end of August at Cleveland Clinic. I was diagnosed with type 3 in 2012 but had a bad episode this June 2014 & was transferred to Cleveland Clinic via ambulance and after local ER gavel me morphine pain got worse but when I.got to CC they said morphine made sphincter contract making it worse. I'm glad they could come to a diagnosis but terrified to have the procedure... anyone else have words of wisdom or advice? I'm terrified

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  43. Scared please give any input if you have had procedure too

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  44. I was diagnosed with this condition in 2010, I've been struggling with attacks for years. I never had my gallbladder removed, so that can't be the only risk factor. I had ERCP in 2011 and it significantly reduce my number of attacks. I've only had to be hospitalized once in the last three years and I'm able to control most bouts of pain through taking Levsin and following a low FODMAP diet

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  45. Had the gall bladder removed 10 months ago. There was an additional scar, 4 instead of 3. The post op pain still lingers, however I have had 2 SOD attacks. So painful for 2 hours, lots of water and walking and curling up on the floor.

    The common link between the two episodes is codine.

    I do not take codine, except when I have extreme joint pain. However the joint pain is nothing compared to the cramps.

    Please check with your doctor regarding other irritants of the SO.

    Good luck

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  46. I had gallbladder removed on Feb 17, 2015 in emergency surgery. I was having chronic acute attacks for quite awhile without me having classic symptoms. (pains before eating) At the end of March 2015 started having attacks worst than the one that got me to the hospital. It lasted about an hour. I was able to handle it.

    However, they came without warning during early morning hours 1-2am way after eating. On the 8th attack they changed and lasted hours and the next day so nauseated I could barely stand. A week later had my 9th attack even longer, ready to go to ER but the person did not show up. I am already disabled since 1993 and dealing with other issues and of course on fixed income. I decided not to the call an ambulance because of bills. I started researching what this could be as ... why these attacks ... which led me to SOD.

    My symptoms fit perfectly... just need the blood work done in the time frame. Reading your posts is scary but I going to stay positive that this will stop and I don't have to take some drug. I really against taking drugs as weaning off of them with all their side effects. But I can't stand anymore pain at this level on a weekly basis... especially when it take 3 days to recover. I read 2 Alka-Seltzer would stop pain. Well I drank 1/4 tps of baking soda with water and it did nothing. I cut out fats, sugar, oatmeal... whatever. Now I weigh 111lbs (5'7") and continue to lose weight which I can't afford but afraid to eat because it might trigger an attack but I still eat just very little. This is definitely not helping my bone density. Next attack probably won't have to wait long... I'll go to ER and suggest there may be a stone left or SOD.

    Thank you all for sharing your stories. I pray that all you and myself find some answers.

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  47. Does anyone have SOD type 3 without having gallbladder removed? I have epigastric pain for 3 month, that's worse after eating or when laying down, and all my results and scans are normal. Doctors have no clue whay's happening to me. I'm a 33 y.o. female and the pains started appearing after a couple of big stresses. I also lost weight. Sound familiar to anyone?

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  48. I had my gallbladder removed in 1998. About 2000 I started having horrific upper abdominal pain with vomiting, that sent me to the ER. This happened about every 2 months and went on until 2005 when the local doctors finally gave up and sent me to UC Hospital in Denver. One appointment with doc and he knew immediately what it was...SOD. Dec. 27th I had a stent placed and spent the next 11 days battling pancreatitis. That was absolute hell. Then I went back and had the stent removed a couple of weeks later. I had 9 years pain free. But, about a year ago I started getting these short spasms that passed very quickly. Sometimes they would take my breath away, but easy peasy to get thru. Last night I got hit hard with one that lasted much longer and felt like the old "episodes". So, I'm pretty sure the SOD is back again. I just went thru cancer treatment last year and am not looking forward to having another stent placed...or worse. Waiting to hear from doc about next steps. Sigh....I just want my life back.

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  49. i had my gallbladder out in 2007 since then i have had times when the pain is severe and went to the ER thinking i was having a heart attack , now I have a new GI dr and he perscribed Desipramine to use as neeeded, I tried Levisin didnt always work, will try it tonight . Has anyone been on this medication for spasms...... and this does suck you get your gallbladder removed thinking the pain would go away and still have it ...ugh!

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  50. I had my gallbladder out in 1994, I started having "attacks" a few years ago. I've had 3 ERCPs and one stay in the hospital for pancreatitis and post-sphincterotomy syndrome. My last ERCP was this past September. About October I started having an odd flipping kind of feeling in my right upper quadrant. Peculiar but not really painful until today. Today I had that flipping feeling which felt like my guts were being yanked out and left me with a dull ache and a few more spasms. Has anyone else had episodes like this? Am I going crazy? It's making me very nervous.

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  51. BOB please email me at bluewriter24@yahoo.com. I am without hope from this.

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  52. I have also been in frailty mine and magnesium supplements for over a year. Thankfully I have not had a severe attack since and although my pain is not totally gone my quality of life is much better. I have found that physical activity such as exercise greatly increases my discomfort. The less I do the better I feel. This makes me sad as well as I enjoyed running and weight lifting but can no longer partake. My discomfort has been increasing lately and I pray that a cure/remedy is found for all of us. Thanks for sharing... Sharing is so important. Good luck to all.

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    1. Keri what type of magnesium supplements do u take for this? Willing to try anything!

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  53. I have been told by my consultant i have SOD 3 and theres nothing they can do. but i noticed pretty much everyone on here has had their gallbladder removed. I havent and they say mines normal. my gran, dad, auntie, and sister have all had theirs removed due to stones and none of them have developed SOD. Im confused and in agony. Does anyone else still have their gallbladder and got SOD?

    thanks

    Julie
    Wigan, UK

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  54. I had my gallbladder removed 18 years ago and have been having pain ever since. About a month after the surgery I thought I wax having another gallbladder attack, but I didn't have a gallbladder ! !! All kinds of tests have been run since that time, and 18 years later I live in fear that I will have an attack. Luckily I somehow manage to only have one 2 times a year, but have had up to 6 in one year. The horrifying thing is that no gastrointestinal Dr ever even mentioned SOD to me....I am self diagnosed, because I have every symptom and fit all criteria. I am so disappointed in our medical care.

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  55. This comment has been removed by a blog administrator.

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  56. I had a couple episodes of pancreatitis with no known cause in 2008. The removed my gallbladder in hopes it would stop this from happening. I ended up in the hospital in and out for weeks at a time with whose pancreatitis after the removal. No one will explain this to me. I still to this day have such pain I am considered disabled and the only thing that works is pain medications. Every gastrointestinal doctor I see has the nerve to tell me nothing is wrong without even doing any tests. I can't find a single one who will listen to me. I found this site trying to find a possible answer on my own. If I ever find a doctor who will listen I will bring this up but hey seem to hate it when I have my own ideas. I am constantly in such pain I can't even describe it. Stabbed in chest would be the closeat I can come up with. Thanks you all for posting your experiences because they have the hope to at least give what I have a name. I can't take these pancreatic flare attacks anymore. It hasn't been 20 years but being since 2008 seems like an eternity. I pray for all of you. I don't wish this kind of pain on anyone.

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  57. I have been suffering with stomach "attacks" since 2004 and went through tons of medical test. It wasn't until I was watching a strange diagnosis show and a guy kept having the same thing I had been suffering from and he was diagnosed with SOD. I talked to my GI and they didn't know much about it. They removed my gallbladder removed in 2012 and didn't help at all. I started taking magnesium for xhronic constipation in 2013 and stopped having the attacks. In 2014 I was training for a 1\2 marathon and had to stop taking magnesium due to loose stool and with in 2 days I started having the attacks again. It seems every time I miss a night of mag I have attacks again. I am doing a test right now to see if it has been a coincidence or if magnesium is really helping. I'm scared because the attacks are so painful and usually increase my pancreas enzymes, but I really feel like beings the Dr's aren't helping I need to know. I will keep you posted.

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  58. I've been have "attacks" since 2004 and went through may test and ended up having my gallbladder removed in 2012 and got no relief. I started taking magnesium pill form for constipation in about 2013 and quit having the attacks. I started training for half marathon in 2014 so I quit taking magnesium because of loose stool and with in 2 days I started having the attacks again so I have been so scared to not take them. I am testing to see if there is a link between magnesium and my attacks. I also self diagnosed myself with SOD and I think 4 GI's later they are starting to realize I am right.

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  59. Worst pain of my life. I've given birth 4 times and have had a kidney stone....they were nothing compared to this pain. I'm a 53 yo RN and at least now I know why I have these episodes. I can now look back and it all makes sense. One of the first episodes was in my 30's after drinking 1 Mikes's Hard Lemonade on the golf course. Some possible pertinent hx: I had vaginal hyster in 2006, after which I hemorrhaged internally (shock sbp 60) with 4 units of blood in pockets under my liver and in my pelvis that later turned into abscesses. After I became septic, drains were inserted under my liver via anterior/lateral approach and into my pelvis via the posterior approach. I was hospitalized for 17 days on IV atbs and TPN and Morphine PCA. After this last episode, I'm not sure I can live through another; the pain lasted about 3hrs. My latest "episode" started after I was prescribed Guafenesin AC (Robitussin with Codeine) for a cough associated with a sinus infection. I had taken 2 doses, the last approx 1 hour prior to the episode onset. I was drinking a Dr Pepper (caffeine) and eating popcorn (fat) at a basketball game (?stress). I grabbed a bottle of cold water, thinking it might be a kidney stone (no-pain was up too high under my R medial rib cage) and drank the water- pain unchanged. I chewed a pkg of Rolaid's Advanced on the way to the ER-at times they seemed to take the edge off and other times they did nothing, but they did more than Tums (?the calcium, the magnesium and or the simethicone?). If I drank water after the Rolaids the pain got worse. I was given IV Morphine in the ER and the pain got worse. The "GI Cocktail" of lidocaine and MOM or Mylanta? helped some--or had the codeine worn off? The CT with contrast showed my common bile duct was enlarged ( I had a lap chole in 2006 after my hyster for delayed emptying and cholesterolosis), and mild to mod intrahepatic ductal dilatation. I was sent home with oxycodone rx to fill (knew not to fill), told to start omeprazole (Prilosec), told to eat low fat diet, not to take the guafenesin AC, and told to see my my PCP early next week. When I'm referred to our research hospital, I don't think I'll let them do an ERCP. I hope there's a way to rule out a stone another way (?US, MRI ???). I hope this helps medical professionals in developing treatments/plans to improve the quality of life for those suffering with the biliary colic associated with these conditions. Thanks for letting me share my pain.

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  60. Try looking into Vitamin B12. I have suffered with SOD since my gallbladder removal in 2013. Just last year my doc found that I was deficient in B12. Since taking B12 supplements it has significantly lowered my episodes of SOD attacks. I have found that people with gastro intestinal problems absorb very little B12 in foods, thus the need for a supplement. Maybe ask your doctor for a blood test to check for this. Hope this helps someone out there.

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