Pouchitis and Pouch Removal

Hi Doug,

So, I went back and reread your posts from several years ago. I am so sorry that your pouch function has deteriorated to the point that you are considering removal.  I know your were very fearful of this outcome even back then.

As someone who suffers diminished pouch function every now and then, I play out in my head the possible scenarios I would likely be faced with should things go permanently south.

one scenario I think about and keep tabs on, is the conversion/formation to a kpouch.

I know it’s a big deal, and you would have find the experts that can do this, but before you undertake a very tough procedure, it is something to consider?  Pouch removal plus closure of anus would happen in both scenarios.

I hope you find the best solution for you and again I am so sorry you are faced with this outcome.

Thanks.  I appreciate the response.  I have read about the KPouch and although it works well for many, I think the external bag would be better for me.  I am not sure how to read the “history” of one’s posts.  How does one do that?.  It would be interesting to read what I was thinking at various times.  I had a “gut” feeling this Pouch may not work for me from the very beginning, and to be honest I am beating myself up something terrible for making that decision.  I will continue to try to find something to control the Pouchitis- but the side effects of the medication I have tried have been rough.  I primarily been on Metronidazole.  I just want to be at piece for once and for all.

Thanks Doug

Click on your name

then when the box opens up, click ur name again and click the down arrow to the right of where it says profile and change that to posts and you should see all of your posts.

Doug, you’ve really just scratched the surface of pouchitis treatments, and it sounds like you’ve stuck with an unacceptable solution for too long. There are other antibiotics to try (rifaximin, tindazole, Augmentin, etc.), and a variety of biologics that often work better than antibiotics. I don’t know if you’ve optimized your pouch function beyond the pouchitis inflammation (with fiber, bowel slowers, and probiotics), but without tuning those up many pouchers would be dissatisfied.

Do you need a new gastroenterologist? I’m dumbfounded that after all this time you’re having to come here for ideas. This is a fine place for ideas, but it’s best if they supplement the work of a thoughtful GI doctor.

Thanks Scott. I appreciate the feedback.  I will press my GI doctor this week.  He did give me Xifaxin but it did not work for me.  I am already on Stelara. I will work out some other options. I feel like a failure and annoying everyone around me is a horrible feeling.  I just can’t beat this IBD.

Thanks New577.   I now see how to check the posts.  Thanks

@Doug K posted:

Hi All,

It has been a while since I have posted, and I hope that everyone is okay.  I also appreciate all of the support this forum has kindly offered me over the last 4 years.  I had my JPouch construction finished two years ago and I have been suffering from recurring Pouchitis the entire time my pouch has been alive.  I have taken Metronidazole for about 18 months (I am allergic to Cipro).  Now I am getting side effects from the Metronidazole.  Does anyone have other Pouchitis treatment antibiotics or medications that you can recommend? Also, I am seriously considering removing the pouch and going with the bag, does anyone have advice on that big step?.  I am just tired of running after meditation and feeling yucky. I never minded the bag.  I certainly wished I had chosen it from the jump.

best Doug

Try Rifaxin please first

Doug,

If metronidazole helps you, switching to Tinidazole may be worth considering - a related drug with fewer side effects.

I've also questioned my choice regularly. I'll be 2 years from take-down next month and despite excellent surgery, I have struggled with "floppy pouch" prolapses causing difficulty emptying and pouchitis-like inflammation, so far limited to the anal transition zone. I've been on a variety of antibiotics.    Taking low doses of Cipro and Tinidazole now, which gives me many more good days than bad.  Interestingly the thing that has helped me improve the most of late is the FODMAP diet.  Dr. Shen encouraged me to read up on it and try to do it "by the book," given the amount of research behind it. I downloaded the Monash University app. and have really noticed a difference.

I hope you can hang on long enough to find a solution.  But even if you decide to remove the pouch, don't beat up on yourself.  We don't get all the information we need when we are facing the decision and we are told that the pouch is "the gold standard" for treatment by doctors who just have no idea. Plus, the ostomy is not without its challenges. You might always have wondered if the pouch might have been the better option had you not tried it.  

Hi AMB,

Thanks for taking the time to offer some advice, wisdom and compassion.  I will suggest Tinidazole to my GI.  I have read a little about the FODMAP diet, as well as the specific carbohydrate diet (SCD).  It sounds like they help a lot of people.  It is worth a try.  Bo Shen is an expert for sure and if he believes in it, it can’t hurt to try.  It also leaves me somewhat empowered.  I was sick for 25 years with a bad colon, I was hoping this JPouch would bring me peace.  I don’t need or expect it to be perfect, but this Pouchitis I have feel an awful lot like the Colitis that plagued me for so long.  I got some good advice from this chat and I am going to run with it.  I may also look to connect with Bo Shen.

Hi

I suffered for 3-4 years with pouchitis (k-pouch) and ended up with c-diff from the antibiotics. Dr Shen said I could try entivyo and it has been working great for 3 years. I don’t know if that is in the same biologic family as stelara? There are NO side effects for me with entivyo. I heard there might be different method of getting entivyo in the future (like humira  is taken now)

dr Shen does video appointments. Not sure how that works for new patients, but it might be worth checking out.

I also felt that having pouchitis was like having colitis!  ( tremendous gas pains from pouchitis with a k-pouch )

Hi Doug,

I will agree with all the comments already written here. Maybe time to get a 2nd opinion from a new Dr. I’ve been through several with changes to insurance and overall dissatisfaction.

Ive had great success with Xifaxin and more recently Budesonide for pouchitis. I do take VSL # 3 twice daily and eat Metamucil wafers daily. I have used the Fodmap diet when things aren’t going well too.

Best of luck to you my friend. I hope things turn around.

Doug - private messaged you w/ contact information for Shen's office should you decide to connect with him. -A

Doug, hope you're doing ok friend. I've had pouchitis beginning two months from my takedown which was January 2021 and last year I developed a fistula. I started tinidazole and got on Humira, about a year ago and I got my life back on track, almost where I was before my IBD diagnosis. I've noticed no side effects to either. Please feel free to message me with any questions.

Thanks so much.  That is great news, I am happy you feel well.  I had some reactions to Metronidazole and had to stop taking it, it was working for me, but I was getting horrible bladder pain from it.  I have a bladder disease also.

Is there a reason they put you on Tinidazole rather than Metronidazole?Maybe that could be an option for me.  As far as the Humira, did you try that back in your IBD days also, or was the first time you used it for the Pouchitis.  I used it unsuccessfully for my colitis 15 years ago (I tried every biologic), but it may be something I should consider trying again.  The only thing that helped me was steroids - which I was crazily on high doses for 20 strait years.  

Thanks Doug, I really appreciate the kind words. I did courses of cipro/flagyl but the pouchitis became chronic. Dr. Shen put me on the daily tinidazole because he's seen patients have good long term results (ie. no loss of efficacy) with no terrible side effects. The only biologic I tried before my surgeries was Remicade. I was so far gone that it didn't work. Had the surgeries, got the pouchitis, and did Entyvio for a few months but that didn't work either. Thankfully Humira is working now, I know at some point it may not so I'm just enjoying life day by day and living in the moment, so to speak. The silverlining is there are so many IBD medicines out there and being developed.

Thanks so much.  I appreciate the help.  I may consider another biological drug.  It’s seems like you are doing really well.  Thanks for sharing.

Hi Doug,

I’m so sorry you’re not doing well. So much of your story resonated with my experience. I struggled on and off w pouchitis (that eventually changed to a Crohn’s dx, my original IBD dx) that felt like my pre-surgical disease for 17 years after surgery.

I didn’t respond well to all sorts of antibiotics, biologics, and steroids during that time. Eventually I landed on Stelara, didn’t initially respond that well, increased dose to every 6 then 4 weeks AND quit the antibiotic and have been symptom free (knock wood) for the last 5 years. While my providers don’t necessarily agree that my discontinuation of antibiotics was the thing that made the difference, I am not convinced  (and wonder if other biologics I tried during that time would’ve been successful sans antibiotics) .

I didn’t think I’d ever feel this good and realize it may not last forever, but am certainly grateful for the last 5 years and wanted to share to offer additional ideas and some hope .