Hey all, I had my take down on 8/8/07 and since then I've been going what seems like every 20 minutes. I take 3 immodium AD before I go to bed, but it barely helps. I wake up every hour and have to rush to the bathroom. I've tried lomotil but it doesn't do anything.

Anyways, I could really use some advice. What helped for other people? How long does it most people to start getting better? Do you just start going less?

I've been on probiotics for a week but haven't noticed any change.

Does metamucil cause you to go less? If so how often do you take it, and do you take the powder or the wafers?

Also does diet help? I've been on a no fiber diet but that barely helps.

If anyone could give me advice on what to do and what worked for them I would greatly appreciate it.

Hi Kyp -

I believe from your last post, it seemed like you had pouchitis...what was the result of following up on that? Are you on antibiotics?

Priobiotics won't help right now if you do have pouchitis...

And no, what you are experiencing isn't "normal", so if you haven't been checked for pouchitis, I would call your surgeon.

Probably not what you want to hear, but I think most people are going to tell you this...

Good luck,
Lisa

I told my surgeon, and he figures that since I don't have a fever, bleeding, or abdominal pain that I don't have pouchitis. How do you get checked for pouchitis?

This message has been edited. Last edited by: Kyp,

Someone more knowledgeable will (hopefully) chime in, but:

1) Bleeding isn't associated with pouchitis; if you had bleeding (which you don't) that would likely be cuffitis.

2) I don't believe that fever or abdominal pain are the "definitive" signs of pouchitis. Sure, some people have a low-grade fever and achiness, but some just have an increased fequency and a sense of urgency (which you have).

As for how they determine if it's pouchitis, I have heard that they normally start people on antibiotics; if you start feeling better, then it's likely what you had/have. They can also "scope" the pouch and check, but I believe they do that only AFTER a course of antibiotics.

I might push back on your surgeon and at least ask to try some Flagyl or Cipro...just to see if it makes it any better.

And again, I hope someone who has gone through this will chime in, because what I've outlined above is what I've read on this site...