sphincter of oddi dysfunction

[ttcoffin]

Has anyone had the test to diagnose this? I have read alot about it and it seems risky. Says it can actually cause chronic pain and it can cause pancreatitis. I was wondering if anyone here has ever had it and how it turned out? My husband has had a liver biopsy recently and it turned out just confirming fatty liver. HIs liver enzymes are elevated and I read that could be from the sphincter of oddi dysfunction also. He has had CT scans, scopes, colonoscopy's,upper GI with small bowel follow through. He had his gallblader out almost 4 years ago, felt good for about 2 weeks, and then started getting pain in his upper middle stomach area. Not the same pain as the gallblader pain, and not the same area. He has been diagnosed with chrons disease, low thyroid, fatty liver, barretts esophagus,high cholesterol but they still cannot find the cause of this pain. It always aches but hits hard after eating(about 30 minutes). I have thought for along time,that it was his pancreas but his enzymes came back only one point low.(although this was not doen during an "attack"). Someone on here mentioned the sphincter of oddi dysfunction and it sure seems to macth his symptoms. He is also scheduled for a CT scan of the neck and chest next friday, to check for lymphoma. He has lots of swollen lymph nodes! Please let me know if anyone here has had that test. Thank you........Tanya

[Rina]

I am so glad I found this site. I have been having these symptoms for years and I was really afraid to find out what it might mean. I had my gallbladder removed years ago after being told that that was the problem. It was great for about the first month, but then I started getting the nausea and burning in the middle of my stomach again. It was almost always when my stomach would be empty (thank goodness, hate to throw up actual food) sorry for the visual. It has been happening since I was 17 years old, and I am now 36. After it started happening again, I went back to my doctor and asked what could be going on? All he could tell me was that I would probably just have to deal with it for the rest of my life. I asked well why did I even have the surgery for if that was the case?! He couldn't really answer me. Although, I will say that after the GB removal, the burning pain in my stomach and back didn't hurt quite as bad, but was still pretty miserable. I have tried lots of different meds (tagamet, zantac, pepcid, etc) but none seemed to work. I know it sounds crazy and I don't understand what could be the reason, but when I started taking Metabolife (wanted to try to lose a few lbs) I noticed that the pain would stop soon after I would take one, and since usually I was too nauseated to eat (which would sometimes help settle my stomach, sometimes not) it really amazed me that a diet pill would help. I don't know if it has something to do with the fiber maybe? I still wake up in the middle of the night, seems like sleeping sitting up is the only way to guarantee that I won't feel sick in the early am. However, I take a Metabolife and within 10 minutes, I'm feeling normal again. Does anybody have any idea why this would help?
Sorry this is so long, I am just so relieved to find that other people have been going through the same thing I have. PS: haven't lost any weight with the Metabolife, but like I said, it makes my stomach quit hurting so I don't feel like I'm going to throw up.

[Lor]

I have been diagnosed with SOD. The test used to diagnose it is the ERCP with menometry. The test is very risky because it can cause and usually does pancreatitis. For me it was well worth the risk.
I had my gallbladder out in Nov of 2000. The day It was taken out I developed this horrible pain just below the sturnum. SOD can cause pain either when the stomach is empty or right after eating. Mine was always when my stomach was empty. The pain would always come on very suddenly, and everynight between 12am and 4am. I spent a year and a half sleeping sitting up , because when I layed down it would make the pain worse. This pain would cause me to sweat all over my body. There were times when the pain got so bad I would forse myself to throw up just to relieve the pain. It would bore into my back just as bad as the front hurt. I searched going Dr to Dr for someone to tell me what was causing the pain I've had 2CTs, upper GI with small bowel follow through,2 Hida scans, 2 gastric emtying scans, 4 scopes , and an ERCP all normal. One Dr thought my pain just couldn't be as bad as it sounds - 3 others said it was IBS to get me out of their office. Then one had no clue so he refered me to the Borland Groover clinic to see a biliary specialist. BINGO!! He knew when I walked in his office what was wrong. A year and a half later I felt like a weight was taken off my shoulders. I had the ERCP with menometry done found out my pressure in the duct was way high and he made a cut in my sphincter and the pain was gone. I did end up the next morning back in the hospital with pancreatitis for 3 days, but like I said it was well worth it. I am now having some pain again, but not anything like what it was. I might have to go back and have it done again - I sure will if it gets to bad. By the way SOD is usually found in people who had a non functioning gallbladder , and I too had a liver liver test. This procedure works the best with people who have more than just the pain. Pain plus the high liver has better results.

[Lor]

I'm really not sure about the biliary specialist. I happen to stumble across this SOD topic when I was up at night and seaching the internet for answers. I found out about SOD a year before I was diagnosed - then asked my gastro Dr at the time if it was possible I could have it. He told me no. That he didn't really believe that it was a true problem. Another year went by before I heard about it again. SOD and Biliary Dyskinesia (which is sludge) seem to pop up together when you do any kind of search. I was diagnosed with Biliary Dyskinesia when they took my gallbladder out. You may find when you talk with his Dr that she won't have too much to say about it. It seems the Drs tend to shy away from the Biliary tract ,because of the dangers. I can only tell you what happened in my case as far as how long one can go with this. I just got sicker and sicker. My liver was fine when they took my gallbladder out - as time went on the level started to go up. Then my pancreas started to show signs. Here is my theory -  My sphincter had this problem for years before I thought anything was wrong. It was too tight to open up and let the bile out, so it started to back up into the gallbladder. I had my first gallbladder attack when I was 16 (I'm 36 Now). Over the years the gallbladder stopped working. I had it taken out. Then the bile had no where to go ,so it started to back up into the liver and pancreas. This can't be healthy even though when the pain isn't there you feel perfectly normal. I was in incredible pain that was ruining the quality of my life. My kids were watching my go through all this ,because I couldn't hide it. Plus I had put on 30lbs eating my pain away. I was terribly depressed. I had my ERCP with menometry done at the Borland Groover clinic in Jacksonville Florida. They didn't take my insurance - so my Dr worked it out with the office to make it work. Look them up and read about their Drs. borland-groover.com

[Rodriguez91]

Also, when I get the worst pain it is always at night time and the only thing that has ever taken the pain away is sevradol (morphine), however after it has taken the pain away I get another extreme pain caused by the morphine the doctors have described it as a biliary colic pain, has anyone else found this? I also had a major relief of pain when I started taking amitriptoline and the dose is going to be upped next time I see my biliary specialist doctor, has there been any pain killers that you have found to help? I'm sorry for rambling on but I really don't know what to think about the diagnosis and have had no life for months and as I was a nursing student I cannot get back onto my course until I am on no strong painkillers and no pain. If someone could just give me information and how they deal with this I will be so grateful!!! :-)

[Rodriguez91]

Hi there, I am 19 and after having my gall bladder out in April have been in hospital more than out with no answers. I had extreme right upper quadrant pain and elevated lfts, I have finally been given the diagnosis of sphincter of oddi dysfunction and I am just wondering if there is any advice someone could give me who has had the treatments. Also I have had alot of weight gain in the last few months despite eating near to nothing, nearly 2 stone! Has anyone else suffered from this?
Rachel :-)

[Lizbarone]

A related discussion, Sphincter of Oddi Dysfunction brought on by pain meds and might have to have a c-section....HELP! was started.

[Marge1019]

A related discussion, sphincter of oddi dysfunction. was started.

[janeygirl]

I would just like to say that I am glad I am not alone out here. I had my gallbladder taken out in June 2002. I have been having pain in my upper left side and it sometimes pulsates and radiates into my upper back and shoulder blades. I was in the ER one month ago because I could not take the pain any longer. I have been complaining to my family doctor for months that I am in pain. The doctor is just treating me for depression. Yeah, I am depressed, I am tired of being in pain all the time. I was admitted to the hospital the night that I went to the ER and put on a Morphine PCA pump for pain. A gastro doctor was called in and after doing a MRCP that showed dilation of the bilary duct, they are referring me to a Specialist that does ERCP's and special testing for SOD problems. I have been waiting one month to get into the specialist. I am glad that I am not dying of a heart attack. I have had an upper GI, Hida Scan, Abdominal CT, Chest X-ray, Chest CT, Abdominal Sonogram and now a MRCP done over the last 8 months. I think that it is sad that no one takes people like us serious and that we are hurting all of the time. I am tired of taking medication to try to treat a problem that no one can seem to figure out. I have been in pain for almost one year, and I am sick of just taking pills. I know what each and everyone of you are going through and I can very well relate to the pain that you are all feeling. I will keep you all posted. Janey

[janeygirl]

I would just like to say that I am glad I am not alone out here. I had my gallbladder taken out in June 2002. I have been having pain in my upper left side and it sometimes pulsates and radiates into my upper back and shoulder blades. I was in the ER one month ago because I could not take the pain any longer. I have been complaining to my family doctor for months that I am in pain. The doctor is just treating me for depression. Yeah, I am depressed, I am tired of being in pain all the time. I was admitted to the hospital the night that I went to the ER and put on a Morphine PCA pump for pain. A gastro doctor was called in and after doing a MRCP that showed dilation of the bilary duct, they are referring me to a Specialist that does ERCP's and special testing for SOD problems. I have been waiting one month to get into the specialist. I am glad that I am not dying of a heart attack. I have had an upper GI, Hida Scan, Abdominal CT, Chest X-ray, Chest CT, Abdominal Sonogram and now a MRCP done over the last 8 months. I think that it is sad that no one takes people like us serious and that we are hurting all of the time. I am tired of taking medication to try to treat a problem that no one can seem to figure out. I have been in pain for almost one year, and I am sick of just taking pills. I know what each and everyone of you are going through and I can very well relate to the pain that you are all feeling. I will keep you all posted. Janey

[Lor]

Sure I have heard that, but really what is the alternative? My pain was to the point that I really thought it would kill me at some point. Either by liver problems or taking my own life. I just couldn't imagine living like that the rest of my life, and have it be called normal or IBS. I think if you get a Dr who knows what they are doing. You are much better off. My Dr does this daily - he does nothing else.The only long term effects I walked away with is diarrhea. Which I take questran for and is working great.

[lychick]

I guess you are referring to a GI Dr. My experience with them has not been good. Even my local GI Dr. sent word through my PCP that there was no reason to come back to him because he didn't know what to do for me--the continued pain after the sphincterotomy (CP). I am happy with my PCP and have learned more from him and have had better explanations. As far as alternatives, I understand what you mean. There was a period that I too wondered if I wanted to live like this. I work in an area that deals with the terminally ill so I cannot escape the daily challenges of providing and hoping for a good quality of life. Thanks for your responses.

[lychick]

In the resource manual I like to use it describes CP as falling into 2 patterns. One the person will have persistent midabdominal pain that will vary in intensity. I believe this is the one I have. I have some pain all the time and eating anything causes more pain.

The second pattern is when a person has intermmitent pain like with acute pancreatitis.

I feel extremely fortunate to have a diagnosis made in only 8 months. I can only imagine what some have been through waiting for years and not knowing.

Lor--have you read anywhere (I have) that a spinchterotomy can cause longterm problems with, for lack of a better word, splashback of the partially digested food and juices into the ducts?

[Lor]

I really think you hit it right with the Chronic pancreatitis. Although Chronic pancreatitis is very hard to diagnose. People with CP often show nothing with blood tests. Even at the time of an attack. The Dr who did my ERCP with menometry said the only way to truly find out if CP is your problem is the measure the pressure in the duct that goes directly into the pancreas. Which they don't like to do because of the risk involved. When they do the ERCP with menometry they like to only measure the common bile duct, and avoid going in further. They will go futher if the shpincterotomy doesn't help reduce the pain. Mine did help me for awhile. I really think CP is now my problem. After having pancreatitis and knowing what that feels like. I'm pretty sure the pain I experience from time to time now is my pancreas.

[nadia]

Thanks for the info.. It does help.  I do take vioxx the odd time for fibroid pain, but never thought to take it for this abdominal pain.  I cannot take any acetaminaphen because I become severly nauseous from it, but maybe the oxycontin would help.

[lychick]

Initially I was prescribed oxycontin because my Dr felt I was having pain in my spine d/t my neck problem.It took time for me to convince him otherwise. I continued on that even after d/c form hosp for pancreatitis. My local Dr. wanted me to come off of that, which was fine with me. Withdrawal was awful. I now take Lorcet prn and usually (unless having an attack)don't need unless at night. I have more problems at night, after lying down. I also have Ambien, for sleep, if I need. I believe the Vioxx I take helps also. Lorcet does have acetaminaphen in it which is not good to take with biliary problems.I try to cope with alot of the pain because of my line of work. Eating lowfat helps alot also. Hope this helps. Your Dr should ask you to rate your pain and treat based on rating. Hope this helps.

[lychick]

I have been reading the forum since February and I would like to tell those of you with SOD and pancreatitis what I have experienced. I am a 43 y/o female. I work in the medical field but not in GI services. I had my GB removed 2 years ago, for nonfunctioning GB, based on the HIDA scan and symptoms. No stones. After the surg I gave up beef, pork and fried foods. No problem until Feb this year. Experienced same pain, in same location as the GB. Thought I had an ulcer due to taking Vioxx 50 mg a day for 9 months--have cervical spondylosis. My primary care physician and I see each other several times a week and he is very attentive. After 3 weeks of pain and wt. loss, could only eat bread and water:)I was in constant pain. I was hosp. for 4 days having upper & lower scopes, CT scan and repeat HIDA scan, nothing found, labs OK. GI Dr. suspected SOD--although I had already suspected that from reading the forum. I never had the gripping, bendover pain that I see described. Anyway, appt made at major teaching hosp in my state. GI wanted me to go to MUSC but insurance said no. At my appt. the intern who saw me first said I was not a candidate for ERCP, the Dr. came in and said I was. I wondered if my agreeing to participate in a study made their decision to do the ERCP. Had ERCP with manometry and sphincterotomy. Pressure was 60. Later that day I went to the ER at the same hospital and was hosp for pancreatitis for 7 days.  I continue to have pain and I have since been referred to another teaching hospital due to lack of folloup care, even by my local GI--Procedures seem to be the big thing--from my prospective. It now seems that I have CP--req copy of my rec and noted calcification in the head of the pancreatitis. Makes me wonder if CP was the cause of pain all this time. Anyway I have been told to remember that SOD is not one isolated problem, that my whole biliary system is involved. I have been thru all of Kubler-Ross'emotions. I have "attacks" around the time of my period and at other times. They last 4-7 days then I'll have 5-7 days with minimal pain. I gain a few lbs and lose a few. Have lost 40 lbs so far.By the way Pain meds do help me. Sorry this is so long. Forum has helped me greatly. Thanks! Esp Lor and Nanny!

[nadia]

I am having similar pain to that described in your posting. I am curious what kind of pain meds are helping you.  My doctor does not giving me anything but suggests advil, motrin.  These do not help me at all.  Any help is appreciated..Thanks..

[Lor]

I saw Dr Etzkorn. The ERCP with menometry is the only precedure he does. I felt comfortable with him from the beginning. He called me back into his office. Then took the time to put my old xrays up and tell me everyhting he saw. No Dr before him had done that. If you are married he wants your spouse to be there, so he can help them feel at ease with everything.

[krisg]

Thanks for the info.  I'll post when I get back from PA in November and let you know what the doc there says about all of this.( I'll be there for the first 2 weeks seeing the specialist and some friends and family).  If I am disappointed again then I'll be calling the borland-groover clinic. Do you plan to contact these docs. again and have another ERCP?  I agree with you, I would go through a sphincterotomy every 6 months if it ment that I would not have these attacks! Maybe this doc. in PA will just cut the darn thing and see if I can have some releif!   You also may want to try Donnatal whenever an attack hits.  It takes about 30 minutes to work, but if you take it with the first pang of pain it may help alittle.  It has helped me somewhat, meaning the pain is now around a 8 on the scale 1-10.  I hope you feel better (with no more attacks). Although I know all too well, these things can lay dormant for months and then resurface fiercely.

[krisg]

Thanks for the info.  I go through the EXACT same thing when I have these attacks.  Almost like being punched in the stomach by Mike Tyson.  When I first went to the ER with one of these attacks (on 7/00), the gastro doc. there suspected SOD.  He then sent me to a specialist for ERCP with manometry.  Of course the specialist said everything was fine and sent me home.  Since then I have been searching for clues and more clues to what is actually happening to my body, and why?  I haven't quite figured it out, but I'm like you and highly suspect SOD dysfunction and spasms.  After my first recorded attack (7-00), they said anything could have made my liver enzymes go high.  Then I didn't show any signs again of high enzymes until this July when I had another attack (that I mentioned).  I called the hospital and asked them to fax me my blood work and bingo, They actually ran a liver panel and my enzymes were up again and my glucose.  I feel that there is some connection and I hope this dr. I am going to see will help put the puzzle together, or at least put a few more peices in place.  I feel like a detective desperately trying to solve a mystery!  If this dr. gives me the old IBS or any other ridiculous diagnoses then I'm off to FLA. If I need to travel the US then so be it!  I also saw you mentioned in another post that you get more severe attacks close to your period.  So do I!  I am also a 35 year old female.  I don't know if the period has anything to do with aggravating the condition but I assume when one part of the body goes into spasm or (contractions) then it can trigger spasms in other parts (maybe)?  Anyway can you mention what dr. you saw at the Borland-Groover clinic?  I don't know if we are allowed to mention dr. names on the site or not?  Hope you don't mind writing but I finally feel that I am NOT the only one on the planet with this condition, even though the dr.s make you feel that way.

[Lor]

In a heart beat I'd do it again. I ended up in the hospital the next morning with pancreatitis from the precedure, but still feel it was well worth it. I accually knew what was wrong with me a year before any Dr could tell me. I searched and seached the internet for answers until I came up with the Sphincter of oddi dysfunction. I questioned one Dr about it -he said " No way , I don't even believe that is a true illness" A year later another Dr I saw for the first time asked me if anyone ever talked to me about SOD?
Having elevated live enzymes if your pain is from SOD - is a clear indication something is going on in there. In fact gives you a much better chance of recovering from having a sphincterotomy done. My 2 attacks I had recently were just like the ones I use to get. I started feeling almost like a bubble was forming just under the sturnum. Then wham the pain started and so did the sweat. The first one I was driving my car with my kids I had to stop at a gas station and get a coke to help relieve the pain. The next one was in the middle of the night and just seemed to last forever. That was 2 weeks ago and haven't had any symptoms since. I've tried levsin,elevil, demerol, percocet nothing helped.
By the way my glucose levels were raised also. I haven't figured out if that is part of it or not.

[krisg]

My only ercp was with manometry.  I just received my medical records from that procedure yesterday.  The time I had the ERCP with Manometry done I had been on demoral pills from my hospital visit in July 2000.  My family doctor put me on the demoral until I could get in to have the ERCP (2 months later).  I really feel that the test results were not accurate because of this.  My ERCP was done 9-00 and I had been symptom free for 2 months. (probably from taking the demoral). I was scared of having another attack and so my (ex) family physician put me on demoral 4-6 times a day. After the ERCP, the dr. put me on Levsin and elavil. I took that for 2 years.  It seemed to help and keep any attacks from sending me to the hospital. This past July (2002), I was folding laundry and an attack came on, so I took my Levsin and then more Levsin and then more Levsin.  The attack did not stop and I ended up in the ER room for 6 hours.  I went home thinking it was a fluke.  I stayed on the same meds.  Well, 4 days later I was falling asleep and started in with another attack.  I ended up in the ER again and it took them a couple shots of morphine to calm things down.  I mentioned I was heading to a new gastro dr. in the PA area.  My only clue I can put together is three blood tests results that come back high.  My glucose, sgot, sgpt.  I know the second two are liver enzymes.  I am hoping this dr. can at least put a name on what is going on.  Although I have a pretty good idea.  My questions are, Would you have another ERCP with Manometry done?,  and What were your last 2 attacks like?  Were they as painful as before the sphincterotomy?(spelled right?) .  Sorry again for the long post, but I am determined to find something out after 4 years of --LL.   Thanks  

[Lor]

I too found my information from someone on this site, and there are a lot of people who disagree with this here.I don't know where I would be if I didn't come across this forum. I was in horrible pain. I know horrible is one of those words only people who have been burned should use, but I was. I'm one of those people who goes everyday of my life with a headache and no one knows. I just don't tell people when I'm hurting. This SOD pain was horrible and everyone knew about it. I can remember dropping suddenly to the floor in a dripping sweat ,because it hurt so bad. Craweling to the bathroom to force myself to throw up just to get a few minutes of relief. I really thought it would kill me at sometime. I went to Dr after Dr for answers and all I got was IBS, gastritis, or gerd. They were so wrong. I came aross Borland Groover searching the web. Then went and talked to my Dr about them because we live within an hour from there. He agreed that I most likely had SOD and refered me. The Dr I saw there worked with me on insurance issues because they didn't except mine. In the end he did. It took 2 months to get an appointment, but he was ready to do the ERCP with menometry 2 days later. People travel from all over the country to have this done there.

I did have an ERCP previously, but it didn't have the menometry part to it that measures the pressure in the bile duct. Find out if you had the "ERCP with menometry" or the "ERCP". There is a big difference and most places can't do the menometry. My liver was elevated slightly. You have a better chance of cure if your levels are even slightly elelvated. By the way I saw a Dr last year at Shades in Jacksonville. He told me he believed my pain was brought on by me thinking I would have pain in the middle if the night. Then when he heard that my more severe attackes were right around my period. He said I should start taking birth control pills. Needless to say I never went back.

Since I had my sphincter cut in April. I have had 2 attacks just recently. I thought I would have to go in and have it done again, but it since has gone away. I feel so much better. Still have alittle discomfort when my stomach is empty, but it just doesn't compare to what I had gone though in the past.

[krisg]

Me again.  I can't beleive all of us are going through this horrible pain and not one dr. can come up with a solution or even a semi-solution. I went on the borland-groover.com web site and found alot of interesting information! Thanks everyone and anyone who posted that site.  It has alot of good reading material.  I am going northeast to see another gastro. dr. (a friend of mind swears he is the best on the east coast). I don't know about that, but anything is worth a try!  It seems that we all are trying to find a happy medium (with medication) until we can get a definite diagnoses or cure.  This SOD seems to be alot more common than I knew about.  It's weird that it hits people who have had their gallbladder out.  If my Northeast visit doesn't pan out, then my next step I think will be Florida.  Like Lor said, " keep searching until you find a dr. and cure"!