Pouch ulcers and nodular gastric mucosa

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

marc

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:

https://www.humira.com/humira-complete/cost-and-copay

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:

https://www.humira.com/humira-complete

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.

Just had my first scope since starting Humira in October. My pouch looked great, finally (and my spondylitis has never been better), but there were cuff ulcers this time around. It's always something.

For the first time in years, I just had a good scope! No pouchitis or cuffitis. My diagnosis is officially Crohn's now and the Humira has been a great help. Hopefully it keeps working.

Hope all is well and things have continued to go well on Humira!

@fenderpfunk44 posted:

Hope all is well and things have continued to go well on Humira!

Thanks! My 2020 scope was delayed by the pandemic, which was just as well because I had some mild pouchitis symptoms early in the year that required two rounds of antibiotics. By the time I was scoped in September, all was good. The Humira's still working for now.