Hi, all,
I've been on this site for years, (I had my jpouch built in 1996). I took a break, and now had to log in anew, as I couldn't remember all my info.
In any case, like many of you, I have chronic pouchitis, with no pain. Just a lot of urgency, mostly at night. This, as you know, makes me unable to sleep,. I also often have accidents.
Antibiotics don't work anymore--I can't tolerate cipro and flagyl, and I've tried others and they either make me nauseated, make the urgency worse, or do nothing. (I'm resistant to bactrim, which I was using as I found it helped when I used it for something else.)
The doc says Remicade or Humira are the next step. But there are just so many risks. Also, I think it breaks down the immune system significantly. And because I'm not in pain, I feel like it's not worth it.
I'm trying a gluten free diet, which I think helps. BUt it's not changing anything dramatically.
Any ideas? How do you weigh the risks? Has anyone tried Naltrexone and does it work for jpouchers?
Thanks in advance for your help!

Hi Mads,
Have you tried irrigating the meds directly into your pouch (lavage?) therefore bypassing the digestive system and getting the whole immune reaction problem out of the way?
Ask your doc if he can have the Pharmacy prepare an injectable solution for your pouch...mine did way back then (why do I think that they used a sulpha solution? I could be wrong) but it seemed to do the trick. I did it 3 or 4 xs a day for a week.
I also follow a dissociated diet where I don't mix protien and carbs and eat my fruits at seperate meals...it helps the digestive process for me. I also avoid most milk products other than raw milk cheeses (+ tons of icecream that doesn't seem to hurt me too much) and pretty much no bread products.
It sounds restrictive but it isn't really...I do tons of nuts, dried fruits, herbs, veggies and protiens...plus the bonus is that I can pretty much eat as much chocolate as my galbladder allows.
It is my pouch-happy diet.
Don't know if this will help but I hope so.
Sharon

Low Dose Naltrexone works for some with Crohn's. Not sure how it would pan out with UC patients (perhaps there are studies) or pouchitis. I tried it twice for my arthritis (AS) and didn't experience anything positive or negative in regard to my pouch. It doesn't mean that you won't benefit though. Should you go forward with it, procure it from a reputable pharmacy.

I haven't done the injecting straight into the pouch. I've never heard of that. I will ask when I go in next week.
And thank you re: the Naltrexone. I don't think it's used much for pouchitis, but can't hurt to ask! I have a friend on it for UC who says there are few risks and has had no side effects, which is always so appealing.
Any other info welcome. And nice to check back in here...

I have used Enbrel, Humira, and now Simponi for my enteropathic arthritis. No side effects, and I do labs every 3 months to keeps tabs on that. Besides it improving my arthritis, my GI says my pouch has never looked better. I had chronic relapsing pouchitis and cuffitis in the past. I know you weren't asking about it, but just in case you decide to go there, it is not as bad as you think. There are risks to letting pouchitis go unchecked too (dysplasia and cancer occur more often in the presence of chronic inflammation).

I've been on biologics since 2005. A personal decision to be sure.

Jan

Jan, what about IgG4 pouchitis ? does that pose more of a risk for dysplasia/cancer? I had my surgery due to dysplasia, now that I have tested positive for IgG4 pouchitis it makes me worry about dysplasia in my pouch down the road. Dr.Shen does scope and biopsy me every year.

In a general sense, I would think so. Inflammation is inflammation. Chronic inflammation can lead to dysplastic changes. But what can you do but what you are doing? Treat your pouchitis the best you can and get your periodic biopsies.

Jan