sphincter of oddi dysfunction

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 (gallbladder) 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 (gallbladder) 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

[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.

[ttcoffin]

WOW! As I read your post, I was amazed just how similar it sounds to my husbands problem. He never had this pain, until he had his gallblader (gallbladder) out. HIs was a non functioning gallblader (gallbladder) also. It took the docs 9 months to diagnose that. We were soo thrilled when they found it out and took the gallblader (gallbladder) out. WE thought that was the end of it all!! It was reall just  the begining. It has been 4 years now and at first, he was told the same thing, IBS and didn't want to mess with it anymore.WE have gone to so many doctors and been told so many different things.I wanted to ask you, is the billiary doc the same as a gastro doc? I have never seen one listed in our book through our insurance. I would love to get him diagnosed. We have a really good gastro doc but even she is starting to run out of ideas. I plan on bringing this up to her at his next visit though. She is trying to chalk up his pain, to his fatty liver. I know and he knows, that it is not that. It all started after they took out his gallblader (gallbladder). I thank you so much for your post. I had my husband read it because he was starting to think he was going crazy. He gets very discouraged. Besides the pain, what can happen if you let SOD go too long?
Sorry for the long post but it sure is nice to hear about people who have similar things going on. Thanks again.........Tanya

[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

[MacyMaid]

Hi........Just wnated to add my 2 cents here.

My SPhicture pain also started right after gallbladder surgery. They said my gallbladder had sand in it.  

What brings my attacks on are medicines, i.e. codeine, vicodin that the dentist gave me, so i was told that i could not take any narcotics as this causes the Sphincture of Odie to clam up and delay the emptying. I have also noticed that at times, aspirin and ibuprofen can bring on an attack.

I had an ERCP done many years ago and the 45 minute film did show the reaction in the sphinture when a narcotic of some sort was administered.  They sufggested going to a place in Wisconsin that takes care of these problems.  I chose not to go as it was to far from home. Now, they have experts around the country that do this.

I a CT scan done of the stomach a few months back.  it showed dialation of the duct.  The Radiologist told my gastro lady to order an MRCP/MRI of the area or an ERCP.  She chose the MRCP.  That showed negative.  She told me that of it had shown something she would of referred me to a Biliary expert.  Apparently general gastroenterologists do not treat this condtion
and besides, this is such a delicate area..one would want to see a good biliary doctor anyway.  Good Luck to you.

[ttcoffin]

Thanks so much. I looked at the website of the clinic you went to and it sounds like a great place. I emailed one of the docs that you can ask questions, and asked if they could recommend any doctors in Vegas, where I live. Haven't heard back yet. This really sounds like what my husband has. He is in pain all the time. It aches all the time and then there are times where it really kicks in. This has been 4 years and I know exactly what you mean about it debilitating your life. My husband basiclly works and comes home,thats it! He is sooo tired of being in pain. I think your theroy on the gallblader (gallbladder) is correct. It makes perfect sense to me. I always thought this pain had something to do with his gallblader (gallbladder) being taken out, because it started 2 weeks later. Iam going to mention this to his gastro doc and his internal medicine doc and see if any one of them can help us. Thanks again for all of the info and I hope you are doing well........Tanya

[ttcoffin]

Thank you for your post. It got my attention because my husband has been taking lortab for his pain, I hope it isn't contributing to it instead. Good luck to you........Tanya

[ttcoffin]

I just want to thank everyone who ever mentioned sphincter of oddi dysfunction. I just got back from the gastro doc, with my husband. At first, when I brought this up, she said he didn't have enough symptoms and I said, "oh yes he does", then she said it was too difficult of a test to do, then I got a little upset and told her that he has been in pain for 4 years and everything else has been ruled out, so he can't live in pain and if he has bile backing up, he can't stay like that!! Then she kind of caught herself and said there is no doctor in Las Vegas,that will do the tests that need to be done, so she is refering him to the mayo clinic in Arizona. I want to say a big thank you to you guys, without being tipped off about this condition and without you guys sharing your stories, I would have never known about this condition and would have never brought it up to his doc. So again, thank you sooo much!!! Tanya

[Lor]

Just wanted to let you know of my experience with the Mayo Clinic in Jacksonville. I went to them Because my insurance company said they did the ERCP with Menometry there. When I got there - I brought all of my records with of every test I ever had done. They insisted on running them all over again to get their own results. In the end I was told I did have all the symptoms either and refused to do the ERCP with Menometry. They then told me they didn't do that test anymore. I walked out of there with a huge bill and no further along than I was before. The only diagnoses I got was IBS. Good luck to you.

[ttcoffin]

Oh great! Here I thought we were on the right track. Well, I don't know if we have much of a choice, to start with. Our gastro doc said the the mayo clinic in Arizona, does that test. Well, thanks for the heads up and atleast we will know what we might go through. Thanks again

[viola]

I have been waking up from pain in my stomach area and throat for the last six months. I had stomach ulcer before but was treated. I had a gastroscopy 4 months ago and it showed no ulcer but minor chronic gastritis, which my doctor says it shouldn't cause the pain at night. I had a HIDA scan 2 months ago. It showed that the emptying of gallbladder was quite slow. But they didn't tell me a percentage. My doctor said the next step would be ERCP to investigate that but I heard of the risk of pancreatitis as well so I'm reluctant to do that. I did an ultrasound which showed no stones in gallbladder. Bloodtest shows liver is functioning fine.

My question is: does SOD's pain come up to your throat? My doctor said it shouldn't and the bloodtest shows normal liver function so he said the pain shouldn't be to do with gallbladder. What are your opinions? Before you took your gallbladder out, how did you find out your gb is not functioning? Did the bloodtest show any abnormal liver function?

Thank you very much! Waking up three to four times every night is just so tiring and debilitating. I get tired really easily as well. Any answer is  much appreciated.

[ttcoffin]

When my husband had a non functioning galblader, it took 9 months to find it and in that time, he was getting very sick and was tired all the time. He never had pain in his throat but everyone is different. His liver enzymes were fine back then. I don't think gallblader (gallbladder) problems would make your liver enzymes high but Iam not sure.My husband went to the ER one night because his pain got so bad and the doc there, thought for sure, that he had gallstones and was all ready to take him to the OR, then the U/S came back showing no stones and he sent him home. I remember asking the ER doc, if there was anything else that could be wrong with the gallblader (gallbladder), to make it hurt and he said no! Finally, my husband had a hida scan and thats how they found out. You should find out what percentage your gallblader (gallbladder) was functioning at though. Good luck

[viola]

Thank you very much for your post. I asked my doctor for the percentage yesterday but somehow when I did HIDA scan, they didn't do a quantative one so there is no record of percentage. But my doctor's office told me that there is definitely nothing wrong with my gb's function. The slow emptying could be some narrowing of the exit and he can't find out more unless doing an ERCP. Knowing of the risk, I'm not particularly keen on the procedure. The doctor is not either and said the narrowing could just be temporary and he doesn't think this is the cause of my pain anyway. Have you ever heard of this (temporary narrowing of the exit from gb to small intestine)?

[ttcoffin]

The only thing that I have heard of,that it might be, is that the ducts can be clogged with slug or stones. Maybe thats what he is talking baout?? Sorry I couldn't be more help to  ya but Iam glad your GB is ok. I almost wish we had never had my husbands taken out but we had no choice. Take care

[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.

[krisg]

Hi Lor:
Sorry but I could not help posting a note.  I have been reading these posts for about a year now and have posted from time to time.  When I read your recent post on SOD and your symptoms, I had to look at the nickname to see if it was me.  I too have had the same thing for 4 years now.  It started about 5-6 hours after my gallbladder surgery.  I awoke with this horrible pain up under my sternum and could not talk, breathe, or move.  I thought I was having a heart attack. I stayed an extra day in the hospital and all the dr. said was that I had a rough night!  He had no idea!  I had these attacks for 2 years (always during the middle of the night) and would occassionally see my regular dr. and he would adjust my prevacid and said it was severe acid reflux.  I didn't beleive him at the time.  Anyway 2 years ago I had my first attack during the day(while I was driving with my kids).  Luckily my mother was with me and ruched me to the hospital.  It took them approximately 4 hours of demoral and ativan shots to calm down the spasms. After blood tests and ultrasound he concluded I have SOD dysfunction.  I had an ERCP done 2 months later but the specialist said my pressure reading was only 30 something and I needed to be 40 or higher to cut the sphincter. I was so upset because I really thought I had found a cure (even a temporary one).  You said you had an ERCP that showed nothing too. (your first one)  How did you go about getting ahold of this borland groover place and making an appointment etc.  I hope you don't mind me asking these questions.  I too sleep upright and have been for 3 1/2 years now. I still get the onset of these attacks but I take Donnatal and it keeps my pain about 6-7.  The medication keeps me out of the ER room so I take it, till a dr. can put an exact label on what I have.  I truly beleive I still have SOD with severe spasms.  Sorry for the long note.  I just could't beleive someone else on earth was going through the same thing.  Thanks.

[msliny]

Thank you all for writing about this disorder- I

[5fan]

I just recently saw my GI doctor and he is sending me to Shands in Gainesville for testing for SOD.  

When he came in to the room for my appointment he sat down and said "I'm sorry I can't tell you what you want to hear - I don't know what's wrong with you".  

He said I fit one of the criteria for SOD to a T - the pain.  He said he is a little concerned because I do not have elevated liver enzymes and my bile duct "isn't any more dialated than you would expect to find in a person who had their gallbladder out"

My history goes pretty much like this:

I just spent 6 days in the hospital (beginning 09/26/02) for pain - URQ, follows the rib cage up to the middle of the body and then radiates into the back. A lot like the attacks I had when I went to the ER with pancreatitis and gallbladder.  The best way I could describe it to the doctors is having someone punch me in the diaphragm and then not removing their fist. The pain is worse with food intake - ususally starts like spasms in the right and then the pain increases from there, turning into stabbing pain.

I was put on morphone because the GI cocktail, Demerol and Phenergan didn't touch the pain and nausea. I was admitted so they could "find the problem" without having to endure the pain for the time it would take to schedule the tests outpatient. At the time I went to the ER I had not eaten since the day before and was vomiting bile. I have been living on Coke heated in the microwave and then stirred until it is flat because it seems to be the only thing that helps settle my stomach.

I was on either on a clear liquid diet or NPO (nothing) for five of the six days I was in the hospital. Only the last day was I given a "liquid diet" for two meals and then solids for the last meal.

My amylase and lipase levels were not elevated, my hepatic function tests were normal as was my urine sample. I went through abdominal x-rays, gastric emptying test, small bowel follow thru, and a MRI that zeros in on the bile duct (MRCP I believe). They were all "okay".

Unfortunately (or fortunately, depends on how you look at it) my Gastro practices in a group with three others. I never did see my specific Gastro in the hospital. I did see all of his partners.

Once they ruled out that there wasn't "sludge" blocking the common bile duct (by the MRI) they seemed to decide that that was the end and they would discharge me.

I did ask the Gastro who visited me about chronic pancreatitis but he just pushed me off saying that my A&L levels and hepatic functions were normal and that "you don't want chronic pancreatitis". I guess since I have "perfect cholesterol levels" and am not a heavy drinker he feels that this is not a possibility.  I had pancreatitis when I presented to have my gallbladder out - it took four days to control it and I was questioning if it was possible the pain was from Chornic.  I had read you didn't have to have elevated enzymes.

The pain still continues. The admitting MD finally put me on Reglan to try to get me to keep three meals down without vomiting. Once that was accomplished I was discharged. I was at the point I would have lied and said they stayed down even if they didn't because it was obvious the doctors I had were not going to go any further. They want to blame it all on the severe gastritis I was diagnosed with. They have increased the meds I take to: Nexium 40mgs 2X a day; Librax 5X a day (for IBS); and added the Reglan (1/2 hour before every meal).

The surgeon who did my gallbladder surgery (in July 2002 - I spent six days in the hospital then too, due to pancreatitis)(he's a colon and rectal specialist) seemed to be more interested in what's wrong than the doctor's in the hospital did and he really doesn't have a lot to do with my care at this point - the surgery is over. He did want to review my latest CT himself and wanted me to return in four weeks (I saw him 3 days before I ended up in the hospital).  He asked me if I had had an ERCP done and I told him no.  He said something just wasn't right.  I did have a nicked artery during surgery so my recovery was a little different than most.  He also check for a hernia and said he didn't find one.

I cannot tell you now happy I was not to hear the GI say "you'll just have to learn to live with the pain" and "IBS".  He still thinks that I present a pretty clear case of IBS, but he also feels that there is something else wrong that is causing this pain.  He also now feels that whatever is wrong is what most likely caused my gallbaldder and pancreatitis problems.  (Basically, they were just a flag of something else being amiss).

After such a long post - I hope it makes sense - I tried to cut and past from other posts so I wouldn't have to type as much.  I'm a legal assistant and by the time I get home typing is one of the last things I want to do - my question for you is did you have more than one criteria for SOD:  pain, elevated enzymes and/or dialated bile duct?

My doctor did give me Davrocet for the pain because I had been taking so much Advil, Alieve, etc. he doesn't want me to damage my kidneys or make my gastritis more severe.

Also, at times did your pain feel like muscle spasms/contractions?

My GI was go impressed by what I already knew about SOD when he was explaining it to me he asked if another doctor had discussed it with me.  I told him that I had been on a message board for GI complaints and that I had done a little research - believe it or not he was actually HAPPY!  He wanted to know if I had any questions about what I read that he could help answer.  He wasn't offended at all - I expected him to be - you know how some doctors can be.

SORRY FOR SUCH A LONG POST, BUT SOMETIMES I THINK YOU NEED AS MUCH OF THE PICTURE AS POSSIBLE TO RESPOND.

THANKS,

5FAN

[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"!

[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]

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]

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]

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]

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.

[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..

[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.

[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.

[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.

[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]

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.

[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

[Marge1019]

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

[Lizbarone]

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

[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 :-)

[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!!! :-)