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Avatar universal

post cholecystectomy and sphincterotomy

Hello;

I am a 50 year old Caucasian man with a BMI of 30, 50 lbs. over weight (if that matters medically) who has enjoyed good health for most of my life.  Seven years ago, I started having trouble—severe pain in the right upper quadrant and epigastric region that radiates to the back and right shoulder; accompanied with alternating constipation and diarrhea, nausea, and fatigue.  There is no noticeable jaundice, no elevated enzymes, amylase, or lipase from multiple tests.  In the beginning, this was associated with eating greasy or fatty foods.  After an ultrasound during an ER visit, they found a problem with my gallbladder.  As a result, I had a cholecystectomy and an ERCP with a sphincterotomy (in November of 2010).  According to the surgical notes: "Chronic cholecystitis with dense fibrosis, degenerative changes, and cholelithiasis.  gallbladder 9 x 3.5 x 3.5 cm and has multiple yellow fragmented calculi up to 1 cm.  The mucosa is tan-brown and leathery".  The surgeon said "in layman's terms, the gallbladder was leathery and shriveled; it was impacted with stones.  If we had waited much longer it would have ruptured."

I had these two procedures within days of one another.  The sphincterotomy was a surprise.  I had the ERCP on the advice of my general surgeon, to remove any remaining cholelithiasis (gallstones).  As it turned out the sphincter of Oddi was so tight the gastroenterologist had to cut the sphincter to gain access and remove the many remaining cholelithiasis trapped by the sphincter.

Recovery was uneventful.  I was able to return to my life with little interruption.  I now had to watch my diet, low fat high soluble fiber, to prevent obvious problems from gallbladder removal.  Two months later, the severe pain that led me to have these two procedures returned.  It was short lived and the pain did not return (for a while).  Therefore, I ignored it believing it was just a poor judgment in dinner choice.  However, a few months later, it returned.  This time more intense and lasted longer.  This time I did not believe it was any bad choices on my part.  I have been eating a rather bland diet; consisting of mostly broiled or steamed chicken (in pressure cooker) and plain rice, that sort of thing.  I called my surgeon; he referred me back to my general practice doctor.  My GP was unimpressed; by the time I got in to see him, I was symptom free.

Over the next few years, the pain has returned vigorously.  Over time, it has become progressively worse and more frequent.  It has become so intense, the pain is debilitating, I am left immobile and in tears with most episodes.  I have since seen my GP multiple times, several while having an episode.  He now believes my pain is real, I can see the look of empathy on his face; nevertheless he does not have answers.  Therefore, he sent me back to the gastroenterologist that did the ERCP/sphincterotomy.

The doctor I have seen before is now retired; I have seen one of his colleagues.  He has been no help.  I have seen this doctor three times.  The first visit was an oral consultation and to setup a time for the colonoscopy and exploratory ERCP (that did not find anything but one small polyp, the ERCP was normal).  The second visit was for the procedures, and once for a three-month follow-up.  Except for the double procedure, He had not touched me to do a physical exam.  Because of my always-elevated WBC, he ordered an abdominal CT with contrast (three months later I have yet to hear from him).  Because of this wonderful app (MyChart), I was able to see the results for myself, not that I understand it.  The only abnormality was mild pneumobilia is noted in spleen and liver and Vascular calcifications noted.  An ER doctor stated it was not notable, he said the CT scan was normal.

In subsequent test, the only abnormal results are, auto abs polynuc neut is 16.2, and WBC is 19.3, which for me I guess, is normal (because I have had an elevated WBC for years).  The ER doctor believes I have postcholecystectomy syndrome—he says—also known as Sphincter of Oddi dysfunction (SOD type III).  I can only imagine My GP is almost tired of hearing from me.  I do not get to see the new (hopefully more compassionate) gastroenterologist for another few weeks.

Although I have had the pain intermittently for the past 7 years, the past six months the episodes are much more frequent—I would also like to note that I have lost 40 pounds in approximately three month without trying.  The previous month, I have been having very intense pain; still in the ruq and epigastric region radiating to the back (an almost constant pain in the back) almost daily; with episodes lasting from 30 minutes to six hours.  I only take Prilosec OTC for heartburn. I have tried morphine but it adds to the problem it does not make it better.  I take Hydrocodone 7.5-325 only when I cannot take it anymore.  However, it really does not do much but make me dizzy, lightheaded, and nauseated (I dislike the side effects).  Time is my only friend.  In an hour or more (sometimes much more) it will go away.

I have been having very loose stools for the greater part of the previous 30 days.  The past four days I have had green stool (still loose to watery) and urine.  The stools have varied from very dark to light green (at times a grey mix), while the urine is a very faint hint of bright green.  I have not been eating many green vegetables, nor have I been drinking things like red pop (things I have read that can make stools green).  If food were the cause, I would think it should be red—I have been eating many beets, bananas, rice, applesauce, and toast (B.R.A.T diet suggested by GP).  He also recommends I drink Carnation Breakfast Essentials three to four times a day and lots of water.

I guess this rather went a little out of control.  To get back on track, is it normal to have a constant (dull) pain—mid back, green stools and urine with SOD III (if it is in fact, SOD), and if not what should I do?  I have an appointment with the gastroenterologist in a few weeks (the earliest they could get me in).  My GP does not know what to do for me.  The episodes have been so frequent I have not been able to work the past four weeks.  The way it is going, it does not look like I will get back before I see the specialist in a few weeks.  Does anyone have any suggestions or thoughts?  

Thank you for taking the time to listen (read) to the ramblings of a desperate man looking to get his life back!
4 Responses
Avatar universal
Typical GI's don't have a lot of experience with SOD and may order more ERCPs which can be contraindicated in some cases.

When you had your ERCPs done, was manometry a component of that test?  

If the GI person you've been referred to isn't a specialist in SOD, find someone who is and see that individual. There are a few centers around the country that deal with this problem, and that's where you want to go. Get your records together, send them to a center for evaluation and follow-up that way.

In most cases of SOD, the type of food you eat isn't the 'cause' of the pain any longer. The big problem is the 'true cause' of SOD isn't known and how to treat it is still a problem.

Narcotics are problematic in those with SOD. They can increase the pressure within the sphincter/common bile duct and bring on pain or more severe pain. Have you considered asking your doc to try some of the anti-spasm meds that are of possible use in SOD?
Avatar universal
Thank-you very much for your answer; I know my intimal post was very long winded.  Neither doctor did a manometry.  In fact I did not know what that was until recently (reading these post).  My GP has prescribed Bentyl and the first GI doctor increased it.  Bentyl “is used to treat bowel problems including irritable bowel syndrome” (CVS Pharmacy).  Both doctors say this Bentyl is an anti-spasm medication that should help; but it does not.  I just got back from a visit with my GP he has prescribed Ultram: Oral tablet (50mg), which is a non-narcotic pain reliever.  Ultram treats moderate to severe pain in adults.

The doctor I see on the eighth (of June), is listed in the top 15 GI doctors in the country.  One of the doctors I have seen listed as a good SOD doctor, is at IU Health in Indiana.  I have given some thought of seeing this doctor at IU Health after the eighth, if the doctor is not well versed SOD.
Avatar universal
I got to see the new gastroenterologist today, well yesterday in South Bend, IN. I am up late just after another episode of pain. The doctor is the best I've seen to date. He admittedly does not know much about SOD. However is referring me to a specialist one of three places (Mayo Clinic, Indiana University Health Gastroenterology, or Gastroenterologists and hepatologists at Cleveland Clinic). He said these are the best clinics for SOD.
Avatar universal
Good luck. I know from personal experience with another person with SOD who went to Indiana that they're great.
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