It seems like I might have pouchitis already, and its only been about 4 weeks since my ileostomy reversal. I may have even started it earlier but thought it was part of the healing process. My doctor will confirm the diagnosis next Friday, but I have all the symptoms dead on and that's what she seemed to think it was right away.

Has anyone developed pouchitis this quickly? Does anyone know if you're more likely to have a chronic problem if your first case is so soon after surgery?

Thanks!
Sara

i developed chronic pouchitis 6 weeks after takedown and it's now almost a year and a half later. just because you developed a case of it early does not mean that you will have chronic pouchitis. however, my GI told me that since i developed it so early and have had it for so long that i will most likely have it for the duration of my pouch.

Clz,

How are you treating your chronic pouchitis and are you getting complete relief with your routine?

Just got the official diagnosis from the doctor after spending the week in the hospital. I've been cycling the different antibiotics seemingly since takedown. At first I was told by my surgeon what I was experiencing was just an adaptation period. After a while the antibiotics by nature will lose their effectiveness. As of today I'm doubling up on cipro and xifaxan while waning off the prednisone I began in combination with flagyl. Doing some serious soul searching now and questioning whether I should go to a permanent (end ileo) and how. Right now I've got a 21 month old son I care for during the week on my own because my wife travels for a living. It would certainly be a twist.

kjeane,

before i was pregnant, rotating cipro and augmentin worked wonderfully for me i was getting complete relief and ate whatever i wanted. right now, i'm suffering mild/moderate symptoms because i was on augmentin for so long during pregnancy and now nursing and its lost effectiveness. i tried keflex and it didn't work. there aren't really other safe antibiotics to take while nursing and that will work for pouchitis. so my gi is just having me take some immodium and fiber now. i'm going to stick it out as long as i can, and then i may have to throw in the towel and start the cipro again.

Clz81,

I am sorry to hear that the augmentin lost its effectiveness. Maybe if you stay off it for a bit and try it again it will work again for you? I was surprised that after 3 months it started to lose it's effectiveness for me and some days I cannot tell if the augmentin is making my diarrhea worse as I did not take any today and I feel better (less diarrhea and running). Can you try pepto bismal? Others have reported success with it and I am now trying it also.

Here are a couple of threads I started back in April 2010 about some possible ways to treat pouchitis. I’m sure there are other similar lists on this site, but these will give you a start.
http://j-pouch.org/eve/forums/...=421105224#421105224
http://j-pouch.org/eve/forums/...=684100924#684100924

As for my situation. . . I am currently rotating antibiotics as a last-ditch effort before Remicade or perm ileo. I’d go for the perm ileo tomorrow if I knew it would mean no more symptoms. Have had chronic pouchitis for about 14 years (since takedown). . . was at simmering level most of the time, but now I’m dependant on antibiotics and even those are losing their effectiveness, so I keep needing to cycle in different meds. If they could ever figure out what my diagnosis was, I’d take next steps: perm ileo if UC (wish I could do that tomorrow!) or Remicade if CD (because docs say no ileo for CD, though I'm stil lnot convinced that that is right).

I have been experimenting with naturopathic medicine, seen two different GI’s, switched my primary care to someone who knows tons about GI issues, have been reading, and trying to figure out how to address my chronic pouchitis. I’m finding that there are almost as many approaches to pouchitis as there are people who have it.

You may have to explore through trial-and-error to find what works for you. Don’t give up. You are so new to the j-pouch and have lots of options to try.

Good luck to you!
Lynne

kjeane - no, you can't take pepto bismol while nursing unfortunately. i fully intend to try it first before other antibiotics after i'm done nursing. and yes, the augmentin does work better for me when i'm off it for awhile. so that's what i've been doing now...on it for a couple weeks and off for a week.

good luck CLz.. I think I am headed that route with going off augmentin for a week or so and then back on. After a few really miserable days, I went off yesterday as I was wondering if it was making my diarrhea worse and miraculously, I have felt better since. I guess I will never understand this pouch and really will not know where to go from here until I have my scope next week to see what is really going on.