Pouch ulcers and nodular gastric mucosa

Long-time lurker here, with a long-time pouch: I had my surgeries 25 years ago, when I was nine. My diagnosis, given six years before that, was UC. Now I'm wondering if that's about to change.

Biopsy results are still pending, but my most recent scopes showed all kinds of unpleasantness, from "nodular mucosa in the gastric body" to pouch ulcers and anal stenosis. I assume things are now moving in a Crohn's-ish direction and would appreciate stories from anyone familiar with such results. An H. pylori test was negative in January but will be checked again with the new biopsies.

A CT scan earlier in the year was clear and an MRI from a few weeks ago was fine. I've had pouchitis and cuffitis in the past and recently switched GIs after my last doctor showed no interest in figuring out why I'd lost a dangerous amount of weight in a short time and was suffering from terrible nausea (along with diarrhea that left me so dehydrated I've needed IV fluids twice).

Thanks for reading!

Original Post

To update this, my GI is still trying to figure out what's wrong. The H. pylori test was negative again, Celiac biopsy was negative, the upper GI scopes showed inflammation throughout the stomach but didn't provide a cause, and the pouch biopsies showed acute and chronic inflammation. 

The doctor thinks the severity of my current bowel problems suggests something more than just pouchitis is afoot, so there will be more tests. In the meantime, I'm taking antibiotics for the pouchitis and a double-dose of anti-nausea pills.

The long-delayed conclusion to this saga: Antibiotics and steroids were minimally helpful in resolving the pouchitis, so now I'm on Humira. My doctor was very thorough, ran a ton of tests, and none of them told us anything we didn't already know (that I'm inflamed, going to the bathroom way too much, and was chronically dehydrated).

He brought a nephrologist on board to get my hypokalemia under control and I'm expected to remain on high doses of potassium indefinitely. The UC diagnosis remains unchanged for now. Hopefully the Humira will help!

Edited on 11/13 to update: The Humira has been helpful so far. The GI now believes that I have possibly have Crohn's. We'll discuss it more in early 2018.

I am curious about your test results as I may be on a similar path with ulcers and waiting on biopsy results. Currently on prednisone and am feeling better but who knows.

how expensive is humira ? I figure I may end up paying about $1000 per month with my mediocre insurance. Doc recommend it.

thank you



Hi, Marc. My test results, and there were tons of them, were almost comically unhelpful. Nothing pointed to a definitive diagnosis. I was scoped twice last year and besides the pouch ulcers and stenosis, inflammation was found in my stomach and esophagus, but none of the biopsies came back with anything specific.

The way my IBD specialist explained it is that pouch ulcers can have various causes, the most common being backwash ileitis or Crohn's. He arrived at the conclusion that I probably have Crohn's based on the severity of my symptoms and my responses to the medications we tried, which included several antibiotics, Entocort, Prednisone and Humira.

If you end up on Humira, be sure to sign up for copay assistance if you're eligible:


Thanks to that program, my copay is $5 per month for a drug that costs my insurance company several thousand dollars. There are broader services offered by Humira Complete that can help patients navigate insurance issues. The nurse I was assigned has told me that if I ever run into problems with the copay card not covering enough of my costs, she can put me in touch with other Humira resources that might offer financial assistance:


My experience with Humira has been great so far. Last year was miserable: I was going to the bathroom sometimes 20+ times a day, felt nauseous all the time, and felt full after eating just a few bites of food. I rapidly lost 40 lbs (too much for my frame) and my potassium levels were so chronically low that it caused a lot of scary problems.

These days my appetite is back to normal and I'm no longer losing weight or taking anti-nausea pills. An added benefit is the Humira also helps with my psoriasis and spondylitis. 

Thank you for the tips. I was diagnosed with Pouchitis, which makes me happy that there was something wrong as I have been struggling for the last year, getting increasingly worse.

On Pred which is also working so now they want me on Humira so lets see if I can afford this.

Thanks again.

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