Pouchitis/first year after takedown

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Hey guys,

I had a quick question I'm hoping someone if not a few people could answer with different experiences. I'm at the 5 month mark since my takedown and things have been very good for the most part. I've been on anti-biotics for a little while, used cipro and flagyl for 2 months which I finished a few weeks back, now I'm back on just the cipro. I'm a little gassy and can tell the cipro isn't fully working (indicated by my bm's) unless it's still to early in the treatment ( started Saturday, 2/day - may have forgotten one a day here and there )

Anyways, what I'm wondering is if anyone had problems in dealing with pouchitis after surgery and if it lessens with more time? I've heard it can take up to a full year for the body to completely adjust. Is there a chance my body may continue to improve so that I do not need to take anti-biotics to treat pouchitis? I really hope so, because aside from that, everything is great again. I'm enjoying life a lot more; just wish/hope this will resolve in time.

Thank you!

-Mike

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ks1905Member

Mike,

I'm about 8 months out from my take-down and I've been dealing with pouchitis most of that time. I finally had a scope 3 weeks ago and it was a stricture that was causing me most of my problems. They dilated it and my pouchitis symptoms have really improved. I was getting really frustrated with the pouchitis but things are much better now. Have you had your pouch looked at yet?

I read at the CCFA that pouchitis is common is about 50% of J-pouch patients within the first 2 years of the take-down.

2/6/1510:59 AM

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slightly_creativeMember

Hey, thanks for the reply. That statistic you posted is some what of a comfort if it's indeed truth.

I was scoped about 2 months ago, afterwards I was put on a course of antibiotics. Which I've since finished and restarted a new course of biotics but this time just the cipro. Maybe I'll give it some more time, if it doesn't improve I'll book an appointment with my surgeon.

It's not like I'm having to run to the washroom very often or have way too many movements but it's still not exactly where I'd like to be. Just want to see where other people stand that had a period of pouchitis.

Thanks again!

2/6/1511:51 AM

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ks1905Member

Originally Posted by slightly_creative:

Hey, thanks for the reply. That statistic you posted is some what of a comfort if it's indeed truth.

I wish that I could find the link at the CCFA, I saw it there a few months ago and now I can't find it, their site changes so often...but that stat stuck in my head and gave me some comfort too.

I remember before my surgeries my GI said that pouchitis usually isn't an issue, if you get it then you treat it with some antibiotics for a couple of weeks, it's not like a UC flare. Well I've had pouchitis for about 7 months now, so its a little frustrating but it still not nearly as bad as UC.

During my pouchitis issues he said that normally it's just finding the right antibiotic that works for the pouchitis and some times it takes a little trial and error and some tweaking.

I'm still happy that I chose to have j-pouch its so much better than UC.

2/6/152:53 PM

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slightly_creativeMember

Yeah It would be nice seeing the article, but I've been online reading on it a lot today. It's a bittersweet situation really, sure the days suffering with UC are over (which was hands down much worse) but now trying to deal with and get over this is just another bump in the road.

The cipro alone wasn't doing the complete job so today I picked up more Flagyl, I'm hoping to wake up tomorrow feeling better! I find that combination of medications does the trick. I'm going to balance the anti-biotics with pro-biotics, obviously spacing them apart.

I'd still like to hear from more people with some positive experience with our situation to help boost confidence with everything becoming better down the road! So please people; post away!? lol

Cheers!

2/6/158:57 PM

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Jan DollarModerator, RN, retired

Actually, it is acute pouchitis that is common (the type that resolves quickly with a course of antibiotics). It becomes more and more common as the pouch ages. Chronic or recurring pouchitis is not common. There are structural issues that can cause chronic pouchitis, like an anal stricture that prevents proper emptying. Anal stricture is pretty common.

in this thread in the Pouchitis Forum there is a link to a very comprehensive article about pouchitis.

https://www.j-pouch.org/topic/n...icle-about-pouchitis

Try to just skip past the medical jargon. If you go down to the sections on etiology, risk factors, and disease course you may gain some insight. Most instances of early pouchitis are related to surgical complications.

Jan