Chronic pouchitis

So this sounds like many stories of chronic pouchitis, with two considerations: 1) most docs will have even less experience with long-term cefixime than they have with long-term Cipro or Flagyl, and 2) your post indicates that you have cuffitis, but it isn’t clear if that’s being treated.

Finding an effective treatment (or several) is they key to managing chronic pouchitis. I’m glad you stumbled into one!

Scott, I have the exact same issues as Valli, my doctor is suggesting I start entyvio to address the cuffitis. Do you know if this is an effective treatment for chronic pouchitis and cuffitis. I have to figure something out if I will have to have the pouch removed. Cipro and flagyl do very little for me any more.

@Jrt1352 - Plenty of people get good results from one or another of the biologic drugs to treat pouch and/or cuff inflammation. Why not give Entyvio a try? I think there’s a good chance I’ll have to make that transition eventually if (when?) Flagyl and Cipro stop working adequately for me. Others make the transition sooner, because of the uncertainty around very long term antibiotic use. I’m not looking forward to it, mostly because of my concern that I might not have success with any of them, but I’d be delighted to stop taking Cipro and Flagyl if I can get good results without them. I’m happy with my current results, but if I weren’t I’d be searching relentlessly for a solution.

It’s probably worth trying a good range of antibiotics first, particularly Xifaxan (rifaximin), which has a favorable side-effect profile. It didn’t work for me, but it does for some.

Thank you

@valli : I had a similar experience with cefurixime a few years ago. It is the same kind of antibiotic, only one generation before. I noticed my pouchitis symptoms were a lot better. I had to take it because of inflammable skin issues. My GI doc didn't want to give me another prescription because it is not a typical pouchitis med, as Scott already mentioned.

By now I take Cipro and Flagyl quite regularly. I reduce the dosage after some days to have less side effects, now it's been 250 mg of Cipro and 400 mg of Flagyl at late evening for the last weeks.

I took chronic rotating antibiotics for around 24 years (no stoppages, symptoms returned within a week if I stopped).  I eventually had to go on Remicade and I have been on it 6 years now.  The J Pouch and Cuff are in good shape, what inflammation I have is at the J Pouch inlet and above in the ileum.  This is thought to be due to either backsplash stool or some new inflammatory bowel disease process, or both.  I recently developed a stricture at the J Pouch inlet which at the moment has led to treatment of endoscopic balloon dilations and, in addition to the Remicade, Entocort aka Budesonide caps, which is a designer steroid targeted for action in the bowel, with only 10% systemic absorption.

Despite the current situation, my quality of life is excellent and I have no symptoms at all, despite the concerning stricture at the inlet which has made me a walking intestinal blockage waiting to happen (and it hopefully will not between the dilations and adding the Entocort to the treatment regimen).  I eat well (perhaps part of my problem) and have a reasonable number of BMs per day, 5 to 8 range.

My doctor ordered a Remicade blood level test and I am having that later today.  This will measure the level of Remicade in my blood and whether it is at the necessary therapeutic level.  The fact that the J pouch proper is in very good shape suggests to me it will be a shocker if the Remicade test comes back below therapeutic level.  But Doc wants to make sure before making any further treatment decisions.

All of the above is to say you can live with these issues for 30 years and still have a very good quality of life.  It is really quality of life as a result of treatment that is the bottom line.  If you find something that works, stick with it and ride it like a cowboy at the rodeo- for as long as you can before getting tossed by the bull:

Thanks for the insight.

I've had my pouch since 2018 and also have had nothing but issues.  My final surgery was in November 2018 and I started antibiotics for pouchitis in January.  They started with 7 days which worked but the pouchitis always came back within days off stopping the meds.  I've been on Cipro and Flagyl daily since and I still have issues.  I get to the point where I feel like I have to go but hardly anything comes out. So there's constant pressure in my pouch because I can't empty it and it's so uncomfortable.  I've talked to my GI and they keep trying to change the dosage of the antibiotics but it's not helping.  I have an appt September 8th to see if I have any other options.  I hope your doctor figures out something for you to get some relief.

@valli

Have your doctors gave you the option on going to a permanent ileostomy and taking the jpouch down? I’m currently experiencing “mild pouchitis” and doing mesalamine suppositories at nights they are helping with the symptoms but there’s days I feel so crappy and im constantly on the toilet pushing causing very bad pain, I just can’t imagine what your going through… im fairly new to this and I really don’t want to deal with this the rest of my life after takedown.