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Silver20
So I've had pouchitis for about a month now (on another 10 day antibiotic supply plus + VSL3 and metamucil a couple times a week.

But I've came across a problem that seems to trouble even the most basic everyday life routines.

For instance I can no longer get out of a chair, bed, or car without something to help support me. And in some cases I have to call someone to help me up.

(I have a rather high pain tolerance, but with this I sometimes sit or lay-down longer just out of fear of experiencing this pain.)

To make matters worse I use the restroom nearly 10-15 times a day. (use to be 20-30 without the meds. And before the pouchitis just about 10 times if not a tad less.) so I have to get up or face a rather annoying cleanup.

I've informed my GI about all of this and all I'm being told; to continue the medication and to take it easy and let it run its course for a month then to check back in with him.

Is pouchitis normally like this when it comes to everyday life? Is there anything I can do in the meantime?


(also I'm no longer employed due to this episode of pouchitis but I'll talk about that in another post where it's more appropriate.)

-Silver20

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Scott FScott FMember
I don't know if you've tried more than one antibiotic, but if not then this one doesn't seem to be working. I'd ask for a different one to try. Cipro or Flagyl (metronidazole) are the two most commonly used antibiotics. Simple pouchitis normally improves substantially within a couple of days of starting an antibiotic, if it's going to work at all.

Your symptoms now sound more severe to me than just pouchitis. Something else is affecting your ability to get out of a chair, and it sounds worrisome to me. Does it seem to be weakness or pain? If it's pain, where are you feeling it?

In my experience Metamucil will only help the next few BMs at the most, so I wouldn't just use it a couple of times a week (I use it twice a day). Are you using anything to slow things down, like Lomotil or Imodium? Has your stool been tested for C diff?
Good luck!
Scott F
Silver20Silver20Member
I'm on a 10 day supply (3 times a day) of flagyl now, they gave me something else but I can't recall what it was. It didn't have much effect at all so he switched me to this.

It's a pain leading from my anus to tailbone (mainly focused around the anus). Whenever I'm still I am okay but it's whenever I try to carry my own weight just that area kills me.

I'll try using metamucil a bit more frequently and see where that leads. I use to be on imoduim but I was told to lean off it a few month after my final surgery. I have refills on it so I may ask my GI about starting back up on it. I'll also ask about the C diff.

-Silver20
Silver20
Scott FScott FMember
A C Diff test probably wouldn't be useful while you're on Flagyl; Flagyl can be used to treat C diff. Imodium is available over the counter - no prescription is needed. Many of us use Imodium or Lomotil to provide a better bathroom schedule. It was fine to wean off as long as it worked for you, and it's likely that your doc would be fine with you trying it again.

But you do need to get that pain figured out. Have you had a pouchoscopy?
Scott F
Silver20Silver20Member
I had an amazing GI in DC at Walter Reed on base, but they merged with Bethesda and he switched mainly to PEDS.

He'll still see me but it'd be hard to get into his schedule. So I got another GI that's closer but I'm talking to his assistant 99% of the time and when he is talking to me he's just rushing everything.

I'll most likely see about going to DC again since its better. That GI has been with me since 09.
Silver20

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