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I've been off a course of flagyl for about a week now. I had no confirmed pouchitis (scope showed only very mild inflammation and certainly not full-blown pouchitis) but as I had watery stools, gurgly stomach, cramping, etc going on 3 weeks, the GI decided to treat.

The flayl seemed to take care of the watery stools, but since coming off it, I've had severe gas, terrible butt burn, and now very foul smelling BMs. My stomach still gurgles loudly - to the point that coworkers have commented. I know there is an adjustment period coming off antibiotics, but the foul smelling stools are most puzzling since it would seem to suggest that there is still some infection brewing. I'm taking probiotics, no other diet changes. I have a follow up on the 30th at the IBD clinic (with a different doctor, since my GI left the country at the end of July and once again, I am between GIs and feel like I'm starting from scratch. *sigh*).

I've had recent bloodwork from an allergist (yes, I had to see yet another specialist since I've been having unexplained swelling of my lips and cheeks GRRR - and the allergist didn't seem to think that was an allergic reaction since it's far too localized); anyway, the bloodwork showed that my hemoglobin was slightly low at 111, protein slightly low, white cells slightly up and platelets just slightly up as well.

I've also been having random muscle twitches, mostly in my feet and legs but also my arms - strangely, I had diffuse muscle twitching a few months after I initially had my colon removed. Everything back then was out of whack and eventually it settled down with no specific treatment. There was mention of a neurology referral if it persisted, but it stopped once I started gaining more weight and bloodwork normalized. Now, years later, I'm having similar symptoms.

And as more background, I've been having a problem with intermittent bloody stools since late last year which nobody has been able to pinpoint (that was really the start of everything I've been through this year, I think). I had no other symptoms until recently; these other symptoms only began since early July.

Before all this, I had 4 and a half great years with my pouch. And I'm told the pouch itself is still fine; this all might be something else entirely.

Anyway, since all this has been going on and I'm going to be seen at the IBD clinic on the 30th, I'm just trying to tie all these things together so I can get the best possible workup when I go. I have a suspicion that everything might be related, but I don't want to come in with a long laundry list of symptoms and come across as completely neurotic. That being said, I feel like I've put up with unexplained issues for long enough, and I really just finally want some actual answers. I'm not an advocate of any excessive medical testing, but at this point if the test can find the cause, then I'm willing to go for it.

Thoughts as to how I can best present this? Ideas? My anxiety about all this right now is through the roof which isn't helping.
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Most of the recent symptoms you describe sound like pouchitis, however I have been treating pouchitis for 18 years and never once had bloody stools. That does not mean it isn't pouchitis, and I think you indicated that the source of the bleeding is unknown. Apart from the bleeding what I am reading points to pouchitis and possibly a bacterial overgrowth/SIBO situation.

You might want to be tested for SIBO and see how that comes back. You may want to PM vanessavy about that as I seem to recall her talking in detail about it. Both she and I were recently prescribed Lactulose to deal with this situation, as well as implementing dietary changes. Your situation is different than mine is, mainly due to the bleeding. But I was 3 years with the pouch before I ever took any antibiotics, and when I started I believe I had had simmering pouchitis for a while.

Good luck.
I'd also say pouchitis but the scope really didn't show that. The c.diff test that I had in July when the diarrhea flared up came back negative; I had this confirmed over the phone by the nurse. I do have a renewal on the flagyl, but obviously I don't want to start another course before I'm seen at the clinic particularly if the antibiotics just mask symptoms; not to mention, I really don't want to keep taking antibiotics if there is no bonafide reason. I've been on two courses of antibiotics since December, and I feel as if I'm only being given them as a "well let's see if this works" approach, without any diagnostic basis for actually needing them. Yes, they really slow down the frequency when I do take them, but they'll do that for just about anybody, so I'm not convinced I'm getting any benefit from taking them.

Anyway, sorry to vent -- just feel like I'm going around in circles.
In a pouchitis situation, you are possibly dealing with bacterial overgrowth and the antibiotics do not "mask the symptoms", they kill the bacteria that are causing the symptoms. Eventually the bacteria become resistant and you have to rotate to another antibiotic. I have been rotating antibiotics for 18 years now of 21 with a J Pouch. I can't go off antibiotics for more than a week, but more recently I have discovered I can go one week on antibiotics and one week on lactulose with no problem. The problem is I am tad frequent taking the lactulose.

There is a suggestion in other posts that you do not need to look inflamed in the pouch to have symptoms of pouchitis. The inflammation can even be microscopic, or it could look like this:


Images (1)
  • Pouch_outlet_2
Yes, antibiotics kill the bacteria. What I meant by masking is that since I'm going to the clinic, I want to make sure we're getting a clear picture of the symptoms I'm having while NOT taking flagyl. If it is SIBO, I assume if I'm taking antibiotics we'd get a false negative. That being said, other than the bleeding, the rest of the symptoms I'm having are new since early July, so I don't think SIBO would have been the issue all along. Prior to now, I've only needed antibiotics once in 2009, and in December I was precribed a course to see if it helped the bleeding issue. It didn't.

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