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I've had occasional pouchitis for the last decade or so, which I always dealt with through a short course of Flagyl. About a year ago I was given a course of Cipro for the first time to clear up an unrelated infection. After I finished taking the Cipro, my pouchitis exploded and ever since then nothing seems to keep it in check for more than a couple days before it returns. My GI and I have gone through about a half dozen different combos of antibiotics, enemas, and other medications but none of them seem to provide anything than a couple days of relief before it comes creeping back.

My wife is 7 months pregnant, so I'm trying to stay strong for her and our unborn daughter, but I feel myself spiraling into a dark place. Yesterday and today have been so bad that I'm starting to wonder how much longer I can carry on like this.

I'm not sure what my goal with this post is beyond just getting some stuff off my chest, but I feel like I can't share any of this with anyone in my life because they wouldn't understand.

I guess maybe I just need a little hope. Has anyone else had a similar experience and come through it?

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Hi Alex,

Sorry to hear that. I have had pouchitis since the beginning too.  Antibiotics will work for a very short time and then it comes flooding back. What I'm doing now is managing it on my own with Pepto-Bismol. I take a small teaspoon almost every day and I do oil of oregano every other day or so depending on the symptoms. And leave it there for a few minutes and then swallow with water.  I also take a probiotic everyday.  I hope this gives you some hope that it can be managed by over the counter items. 

Also, I tried to avoid sugary foods.

I hope this gives you some hope that it can be managed by over the counter items. 

@Alex If you can’t find an antibiotic treatment that does the job it’s likely time to try a biologic medication, like Remicade or Humira. In the meantime I’ve had good luck with adding a high dose of probiotic bacteria to my Cipro+Flagyl antibiotic treatment. I take 4 packets daily of VSL #3 DS. Unfortunately it’s expensive if your insurance doesn’t cover it.

I used to use Flagil. Started to make my feet numb. Started using Cipero. Changed to Remacade. Used for a few years and even with insurance and Remistart it was expensive. Got worried about getting a worse disease because of all the warnings on Biologics. Changed to VSL 3 and then to Visbiome when their lawsuit happened. Have been using it with yogurt every day. Once in a while I start to get a few symptoms of pouchites so I do a week of Cipero.  Has been working pretty well that way.

@Brad T posted:

I used to use Flagil. Started to make my feet numb. Started using Cipero. Changed to Remacade. Used for a few years and even with insurance and Remistart it was expensive. Got worried about getting a worse disease because of all the warnings on Biologics. Changed to VSL 3 and then to Visbiome when their lawsuit happened. Have been using it with yogurt every day. Once in a while I start to get a few symptoms of pouchites so I do a week of Cipero.  Has been working pretty well that way.

Do you eat Greek Yogurt???

Alex, I feel your pain.. I was on Cipro on and off after my takedown in 2016. After doing some of my own research and reading, I come across a lady that started taking Manuka Honey, and her pouchitis symptoms started to dissipate.  So, I gave it a try, and started out on 20 UMF with 2 tablespoons in the morning when I got up, and 2 at night before bed. I have worked down to 10 UMF the past year or so, and I haven't taken any Cipro since the end of 2016. Knock on wood it's worked for me. I use the brand Comvita, and you can get it off Amazon. It is a little pricey, however if it keeps me off antibiotics, then I'm good with it. There are alot of medicinal benefits to manuka honey, but there are knockoff brands out there, that is not the same grade as the Comvita brand who in my opinion are the pioneers of getting it to the market. I'm going to post a link for your reading pleasure below if you want to learn more about it. Good luck!

Diesel

https://www.gaiahealthblog.com.../the-manuka-project/

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