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.

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

"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."

Yes, and it's sad because as a 20-something college student I was telling them this back then. I was so angry. The health department called my house on a daily basis yelling at me to take isoniazid because of a positive PPD just because the induration was big and my GP at the time reported it. I told them the induration was big because they kept giving me the skin test even though I had a history of positive PPDs since I was 16. I refused the drug and avoided their calls until eventually they stopped harassing me. I get the blood tests now, too. My doctor where I live now is educated enough about the truth of that.

Perhaps if my doctors had been willing to give me the biologics in college I would have not been stuck on prednisone for 7 years. For some reason they were okay with broad spectrum immunosuppression with steroids but not with infliximab or remicade? Oookay. Even my stupid self back then could tell this was not logical.

I understand what you're saying about the reality of needing medication, and uncontrolled inflammation causing cancer. I used to be a lot more anti-Western medicine when I was young and I think aspects of that haunt me like little voices in my head. It's like a battle between rational me and emotional me.

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.

Luckily nobody promised me this was the cure and they were very straightforward with me about what the risks are and the long term complications could be. I signed on to surgery because the risks sounded less bad than the severe case of UC that I had. I almost died from sepsis once from a flare up. The only regret I have is doing alternative medicine instead of proper medicine, which was tantamount to doing nothing for my illness which is how the sepsis arose. My UC dragged on for so much longer than it needed to. The "autoimmune response that eats you from the inside out is always lurking" is unfortunately a very scary sentence that, while technically true, helps nothing. I'm sorry that your surgeon wasn't honest with you about the risks. I am in 100% in agreement that prednisone being used the way it was 15 years ago was terrible medicine and I am comforted to hear there are better options should another autoimmune illness arises in my body.

My doctor does research and teaches at a university hospital and I asked her once if pouchitis is the same mechanism as ulcerative colitis. She said pouchitis is not actually an autoimmune disorder -- your immune system isn't attacking your pouch. The best knowledge on it right now says its a combination of a particular unfortunate microbiome plus your immune system's reaction to that microbiome. So your immune system is still overactive but it's not self-antigen. This is probably why Visbiome works for some people but not others, or works less well, and why antibiotics help the condition, and why sharing your microbiome with family doesn't result in giving your pets and your partner and children ulcerative colitis. Both conditions must be present. Antibiotics and probiotics never helped my ulcerative colitis even though some people believed they did.

I guess the knowledge is still unfolding whether in some people there's a risk of the self-antigen response being triggered with too many episodes of pouchitis but we don't know yet what that is I suppose.