Post cholecystectomy syndrome

Posted by benevolenterudite @benevolenterudite, Aug 7 6:56pm

I was sick with gallbladder pain and sickness from January until June this year. I had seen at least 12 different doctors. Finally a surgeon in a no name hospital in podunk VT knew what I had was hyperkenetic biliary dyskinesia. I stopped eating almost all foods in April. I lost over 30 pounds in 2 months. I am about 7 weeks post cholecystectomy. My pain started to be alleviated and I was able to start eating again for maybe about a week before I started feeling awful again. I'm back to not being able to eat anything and stabbing, gnawing pain in my right shoulder, right ribs/abdomen, under my sternum, now on the right side of my back. I am losing more weight again. I've seen almost all of the gastroenterologists in my area. Dartmouth is giving me such a hard time and will not help. I am waiting to hear from a 4th gastroenterologist that is an hour away from me to see when they can get me in to see me. I think the next step is an ERCP. I do not want to be on pain pills, or any pills for that matter if I can help it. I just want to be able to eat again. My quality of life is significantly diminished as well as my mental health at this point. I am very very very scared and just don't know what to do anymore.

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I'm sorry to hear what you are going through. When I had my cholecystectomy last October, for some reason I expected immediate relief – similar to having an appendectomy. The slow recovery surprised me. The first time I ate a piece of pizza I was sick for 2 days!

My surgeon was the old school stereotype – operate and go home, let someone else deal with the aftermath. If I hadn't been so miserable before surgery, I would have been looking for a different surgeon. So, I turned to my trusted PCP who explained that chronic gall bladder issues tend your alter your whole digestive system. After surgery your body needs to relearn how to produce, store and release bile to digest food.

She gave me a strategy to try – it took a few weeks, but it got me back on track. I was to eat 1 ounce or less of a low-fat food like 1/4 apple or toast with jelly. Drink a little water . After an hour, if all was well, repeat. It took about 6 weeks, then I slowly increased portions. Now, 10 months later, I can eat nearly anything. Except, some foods like beef, sausage, cheese & ice cream, I must carefully limit the amount. If I have cheese for lunch, no ice cream that day, etc. She also said if I continued to have issues she was going to send me to a dietician who specialized in reintroducing foods.

Have you tried a portion-limited low-fat eating trial?
Sue

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