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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

I think you’re more likely to get cancer from untreated inflammation than you are from antibiotics. In particular if the rectal cuff is chronically inflamed the risk is real, though still less than that of ulcerative colitis without surgery.

All of us who take medication wish we didn’t need it in order to be well. All of us wish we’d never been sick. Accepting the reality of our health, whatever it is, and making the best of it is usually more constructive than denial or fantasy. I live a great, physically active, and generally healthy life, but I have to take medication to accomplish that. Without medication my life would be much, much worse.

I am in the same mind as Scott. Taking meds to control my disease is an educated choice. Is it a gamble? I don’t know for sure, but avoiding meds does not prevent cancer. Even without UC and its treatment we are all at risk for a wide variety of cancers just by life on Earth. I have had UC for 54 years and I am 69 now. I also have diabetes, fatty liver disease, mild kidney disease, supraventricular tachycardia, and enteropathic arthritis. Through it all I became an RN, a wife, a mom, and a grandma. I am happy that modern medicine has something for me.

By the way, I developed a positive PPD years ago and did not stop biologics. My rheumatologist rightly surmised that I did not fit the profile to convert to positive TB. I now have blood tests to rule out TB infection. PPD is not very specific.

Yep, I am getting old and broken down, but I am not dead, yet!

Jan

Back when I had my colectomy, Remicade was considered experimental (and not covered for treatment for UC). So, not an option at the time.

I think the best solution is the one you can live with. Maybe the problem is that there is so much information to be had that it becomes a mine field. Hard not to imagine possible side effects as likely side effects. Some doctors are better than others at helping you sort through it all. But in the end, we are the ones that have to accept our choices.

I have no regrets (at least not today)!

Jan

This chain has me thinking back. Many gastroenterologists used prednisone as first line and maintenance therapy for Crohn's and UC back when I was diagnosed, which was routine and routinely bad medicine for many years.  The 5-ASAs were in clinical trials for UC, not super effective, and they came with probably under-reported liquid diarrhea - so what was the point?    6-MP wasn't commonly prescribed.  It was so un-common that pharmacists would question me when I went to fill my script!  So medication, while not perfect, has evolved. And the other thing that has evolved is that surgeons will remove your colon without promising that it is a cure.  Because it is not. The autoimmune response that eats our insides out is still lurking.  So - pouchitis, or cuffitis, or Crohn's. It's all the same.  I sometimes wish I'd been more diligent with medications to have induced a remission long enough that my colon might still be with me.  Or maybe not. Because actually, even with the pouch challenges,  I've been healthier without it.