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Hello, 

I've had a j-pouch for 12 years, and UC for 24 years (since the age of 2). After my surgery I had minor flair ups, usually treated effectively with cipro/flagyl. 2 years ago I was hospitalized with severe abdominal pain, and some weight loss (10kg in 2 weeks). They found an abdominal abscess, treated for 3 days on IV antibiotics, and sent home with some oral, it seemed to clear it up.

About 6 months afterwards I started having extremely severe abdominal pain (usually slightly above my belly button). My washroom frequency changed from 4x-7x to 10x-20x, sometimes feels very urgent with very little excretion, my stomach started rumbling constantly, painful rumbling, very gasy stools, my stomach hurts most severely after waking, and after eating.

I've had 4 sigmoidoscopy's in the past 18 months, 3 rounds of antibiotics, 4 tapering rounds of prednisone. My doctor and her colleagues keep telling me there pouch inflammation in the scope, and ct scans, the prednisone usually calms it for a month. Their theory was calm the pouch and it would work itself out.

Now I'm in the hospital, my GI doctor is working the ward all week, my scope today showed little to no inflammation (I'm still on prednisone). She had a very difficult time moving the scope from my pouch into the small bowel however, her theory is the opening to my pouch may be too small, bent, trapping gas and matter in my small bowel to cause the symptoms. I currently have another barium enema tomorrow for the doctors to hopefully see it better.

Has anyone experienced anything like this?

Any good questions, or tests I should ask/request while I have the opportunity?

And how would this issue be corrected?

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I have the exact same symtpoms due to a stricture at the anal anastomosis connection. Been fighting it (and surgery) forever with dilations under anesthesia, antibiotic courses and now cortisone enemas. It is extremly frustrating and very painful with chronic pouchitis from it, intense cramping, trapped gas and increased bathroom trips due to inability to pass stool due to the narrowing of the anastomosis.

My next steps are strictureplasty, I am not sure what they do for the upper anastomosis other than possibly a balloon dilation, I am certain others have experienced this and can comment on it. Possibly you have scar tissue build up there and they can correct that by releasing it or if it is inflammation, they may just need to find a better combination of meds to help?  I would want to know if there is any inflammation above the upper anastomosis as well. 

 

 

 

Last edited by jeane

I was a little loopy post anaesthesia yesterday for asking about inflammation locations, but I'll ask when I see her (she'll start in approximately 4 hours). The symptoms seem too align with yours. I've had rheumatoid for 16 years as well, Enbrel was my miracle for 10 years. A year ago I switched to Humira, no change, and 4 months ago I began Remmicade. The were supposed to help both diseases, but seem to have little impact (remmicade infusions help my joints for 2 weeks, no stomach relief however. Likely switching back to Enbrel when this nightmare is over so I can exercise and walk normally hopefully again.

I will see what the dr says when she rounds.

Thanks for sharing your experience,

-TP

An experienced general surgeon watched while the radiologist performed the barium enema. The pouch filled with nothing going into my small bowel, even raising the bag on an extendable pole didn't move any contrast into my small bowel. Looks like it isn't a stricture that can be fixed with the balloon or stint. Have to have an X-ray while I have a bowel movement now, but it's sounding like they might need to re-attach the small bowel to my pouch.

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