Has anyone ever had pouchitis turn back into ulcerative colitis?

I have had this experience too. I remember telling someone the pouchitis felt like UC again. I have a BCIR, so I wasn’t running to the bathroom like I did with UC. My pouchitis was more cramping and major gas pains.  I finally went on IV entivyo 3 years ago and got off antibiotics. The antibiotics resulted in C-DIFF. (Which helped me make the decision to try entivyo) The entivyo was suggested by Dr Shen, but prescribed by my local GI. I have had NO side effects and have not had pouchitis in 3 yrs. I do occasionally have cramping, but it could be SIBO—so I take xifaxan (generic from Canada) for 2 weeks.
As far as apples, when Dr Shen did my last scope he did see apple skins! So I will probably peel my apples  next time!

Ulcerative colitis in a J-pouch affects only the rectal cuff, and is generally called cuffitis. It’s more likely, though, that if the pouchitis worsened it would develop into antibiotic-dependent pouchitis. If that’s the case it’s not the end of the world, but you would need to stay on treatment to keep symptoms under control. The time frame you describe is a little confusing, though - I know I’d get in trouble if I went ham on a mess of apples, so perhaps this is temporary for you.

I guess I can be considered one of those “converts.” My GI says that after all these decades of UC, then a j-pouch, then occasional pouchitis, then enteropathic arthritis, then chronic pouchitis, there is some argument that I have Crohn’s of the pouch. He immediately followed up with the statement, that it really does not matter because the treatment is the same. I am doing quite nicely now on Remicade, Imuran and sulfasalazine.

First order of business is to not beat yourself up about your diet. If you find that you function better by eating or avoiding certain foods, that is fine. But you don’t cause pouchitis with apples. But, I get it. We all wish we had more control than we do.

Jan

It really amazes me how okay everyone here is with going back on all the heavy drugs. Maybe someday I'll be there, it's amazing what you can get yourself used to if you have to. I already hate taking metronidazole and wellbutrin. I wish all I took were vitamins. I think this is largely psychological for me...still wishing I'd never been sick and believing somehow there'd be a way for me to be like the people I know who never had health issues and just eat food without thinking about it and only going to the doctor once a year or less and not having to ever go to a pharmacy or worry about dying young.

I'm afraid all the antibiotics over the years are going to give me cancer. 7 years of prednisone in my 20s did me no favors. I used 6-MP but only for a few months. I never used biologics because it was back when doctors thought if you had a positive PPD that taking a biologic would give you TB. So much agony for nothing over that one.

What are the risk factors for pouchitis turning into a new autoimmune condition like crohns of the pouch or cuffitis? Is there research on this?

What's the evidence for long term cancer risk for people with J pouches who take antibiotics daily for years? Those drugs were not really designed for daily use so it wouldn't surprise me if we do find out there's a cancer association.