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post cholecystectomy pain

Lor
I had my gallbladder removed in November of 2000. Right after surgery I developed severe upper abdominal pain. I went from Dr to Dr searching for answers to my pain. After a year and a half I was finally diagnosed with SOD by ERCP with menometry whiched found high pressure in my bile duct. I also had elevated liver ensymes. I had a sphincterotomy done on my bile duct and the pain went away.
Now the pain is back - though not daily ,and by far not as severe. My question is: my pain always starts with an empty stomach. First sign is hungar pains which quickly turns into a sharp pain just below the sturnum. This is the same pain I had before my shincteromy. I am not able to go through the night without getting up to have something to eat. I've had several EGD's that have found no ulcers or gastritis. Is there anyway to stop this pain or how to go about finding out what is causing it? Is it possible the sphincter has formed scar tissue that has to come out?
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Avatar universal
I am so in the same boat with some of you guys.  I swear, had I known I was going to have MORE attacks AFTER the surgery, I would have just kept my gallbladder.  The attacks are way more frequent and more painful that before the surgery.  I break out into a cold sweat with mine and sometimes they are accompanied with fever in excess of 100.0.  I have been back to my surgeon and he gave me Prevacid and pain meds.  I don't have an ulcer, hellllllllllllo.  They did an MRI with a barium swallow and it all came back negative.  I usually have my attacks on an empty stomach and sometimes food helps, sometimes not.  I have tried the Levsin (somebody at work gave them to me and told me to take them at the first sign of an attack).  I still don't know if they work.  If they do they certainly do not work immediately.  Oh well, I have another appt. with the doc next week.  I've been keeping a journal with all my attacks, etc.  I think he thinks I'm crazy.........
Helpful - 1
Avatar universal
A lot of people seem to have this problem. Which I must say depresses me. I had my gallbladder removed in 99 for infection and sludge. No resolve of symptoms. I'm plagued with chronic pain and acute attacks that make me want to die rather than live through the pain. Upper epigastric radiating to right upper quadrant, through to my back and sometimes down my arm. Then I get chest pains and difficulty breathing. I have been subsequently diagnosed by different doctors with different things from spincter spasm, IBS, Endometriosis, Anxiety disorder, Depression, GERD, mild pulmonary hypertension, etc etc. None of them can offer me any relief whatsoever. I'm also very medication sensitive and can hardly eat any kinds of foods or drinks. I am currently considering going to Mayo Clinic but wonder if this is wise considering I'm about to file bankruptcy for being broke because of the inability to work and be this sick, I don't think my body can stand anymore invasive procedures. And I'm worried about all these stories I hear about not being able to help the problem or even making it worse. Email me ***@****
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Avatar universal
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Avatar universal
A related discussion, HELP was started.
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Avatar universal
I too took Levsin for 2 years and it worked fine for me but made my mouth very dry.  Last year, the Levsin stopped working and I was switched to Donnatal.  I take that 4x a day or as needed (during an attack).  It has the same ingredient as Levsin and some other ingredients added.  It works well for me and does not make me drowsy or anything.  It also helps me to stay calm and focused during a severe attack.  Hope this helps.
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Avatar universal
I've been taking levsin .125 sublingual (under the tongue) as needed for about 3 years now. Never anything remotely resembling a side effect.
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Avatar universal
My wife had her gallbladder removed in 1994. She has had infrequent pains on her right side since then, and Soma has controlled it fairly well. But last year she was in a car accident. Since then flair-ups have become an almost every-day occurrence. Pain medications don't do anything except at such high doses that she becomes incapacitated. Soma still works, but she has a tendency to take too much if the pain is severe,  I'm not comfortable with the idea of her being dependent on this medication for the rest of her life. I looked at levsin, but the side effects sound worse even than most pain medications. From what I've gathered by reading this forum and other web sites, there is medically nothing that can be done. Just eat a low-fat, high-fiber diet, and learn to live with it. Is that really the only answer?
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Avatar universal
Lor
I was on questran for about 7 months. It did work for me, but had to stop taking it because I no longer had a problem with loose stools. I've switched to taking metamucil when needed. It seems to bind everything up and give me the full feeling my body needs. I choose not to take it daily - I don't want my body to become dependant on it. My liver ensymes came down into normal range after my sphincterotomy. I went in during one of the attacks and checked out fine. I figure I will let this take its course as long as I can then go in and have it done again. Like I said the pain isn't nearly as bad as it was.
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Avatar universal
I HAVE HAD THE SAME PROBLEMS AS YOU....AND ALSO THE SAME TESTS SINCE MY GALLBLADDER REMOVAL IN FEB.2000. MY M.D. PUT ME ON QUESTRAN LIGHT BID...TASTES TERRIBLE ...BUT IT MAKES LIFE BEARABLE. MY HIDA SCAN FUNTION WAS 3%..SO THEY FIGURE SOD..BUT I WILL NOT DO ANOTHER ERCP...BESIDES ..IT SEEMS EVERYONE SYNPTOMS COME BACK AFTER FIXING THE DUCT..HOPE THIS SUGGESTION HELPS.
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Avatar universal
Have you had elevated liver enzymes recently with an attack of pain?  I'm curious because I just had my 2nd ercp and the dr. had to do a generous sphincterotomy just to access my bile duct.
One hour after I awoke from the surgery I was back in the ER room with a severe attack again!  Of course they thought pancreatitis, as so did I, but blood tests revealed only elevated liver enzymes again.  Of course the dr. was stumped and put me on an anti-inflamatory for 2 weeks, with pain meds.  I feel alittle better each day but noone can explain the elevated enzymes with colic (after the procedure).  The dr. said I should have felt fine.  I should mention also that he had to clean my bile duct too.  There was high grade stenosis. My only conclusion is that my duct swelled shut after the procedure, causing my bile to back up into the liver temporaily. Does this make sense ???
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Avatar universal
Although I have not had the SOM and sphincterotomy procedure, and as such my SOD is presumptive, my symptoms began the day after my gall bladder was removed in 1999 and are identical to yours - excruciating epigastric pain that radiates to the RUQ and back, beginning with hunger pangs about 3 hours after the last meal. I am also awakened most mornings (5-6 a.m.)with a pain in the back that quickly escalates into the usual severity and location if I don't address it. All the scopes w/biopsies and CT and MRCP and liver enzyme blood tests normal.  You might try the couple of things that work for me. At the very first sensation of hunger pang,(if you've learned to live with this you recognize it very easily) drink a tall glass of water. Eat smaller, more frequent meals, rather than 3 regular meals.  If I am stuck without water or food (as I was recently when stuck on a plane on a runway awaiting a delayed takeoff), two levsin, .125 sublingual (under the tongue), at the very first sensation, will work for an hour or so.

Hope this is useful.  What the previous poster said about scarring of the sphincter causing restenosis following sphincterotomy is reported in the SOD literature.
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Avatar universal
a certain percentage of sphincterotomies will scar down over time; another ERCP might be able to determine this. It can become a difficult problem, because SOD is still not fully understood, and manometry, etc, are only partial indicators. So when symptoms persist after treatments such as you have had, it gets increasingly difficult to pinpoint the cause. However, having had what sounds like an improvement from the sphinterotomy, one might consider looking into the anatomy of the area again.
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233190 tn?1278549801
MEDICAL PROFESSIONAL
Hello - thanks for asking your question.

I have researched previously on SOD and post-cholecystectomy syndrome.  I will reprint my research here.

The term postcholecystectomy syndrome (PCS) describes the presence of symptoms after cholecystectomy. These symptoms can represent either the continuation of symptoms thought to be caused by the gallbladder or the development of new symptoms normally attributed to the gallbladder. PCS also includes the development of symptoms caused by removal of the gallbladder.

Two types of problems may arise. The first problem is continuously increased bile flow into the upper GI tract, which may contribute to esophagitis and gastritis. The second consequence is related to the lower GI tract, where diarrhea and colicky lower abdominal pain may result. This article mainly addresses the general issues of PCS.

PCS reportedly affects about 10-15% of patients. A wide range of symptoms occurs. Symptoms are sometimes considered to be associated with the gallbladder. Colic is found in 93% of patients, pain in 76%, jaundice in 24%, and fever in 38%. The cause of PCS is identifiable in 95% of patients.

The workup for PCS is variable. An extensive study of the patient should be performed in an attempt to identify a specific cause for the symptoms and to exclude serious postcholecystectomy complications. Surgical reexploration should be considered a last resort.

The treatment depends on what is found on evaluation - it will vary depending on what the cause of your symptoms are.

My previous research on SOD can be found here:
http://answers.google.com/answers/main?cmd=threadview&id=119275

I stress that this answer is not intended as and does not substitute for medical advice - please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

Links:
http://www.reginadoctor.de/pch.htm

eMedicine - Post-cholecystectomy syndrome
http://www.emedicine.com/med/topic2740.htm
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