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Crohn's Disease Forum » General IBD Discussion » Pouchoscopy shows no inflammation but still have pouchitis symptoms?


04-06-2016, 05:28 PM   #1
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Pouchoscopy shows no inflammation but still have pouchitis symptoms?

Hey all,

I had a pouchoscopy last week and the doctor says I have no signs of inflammation- my pouch looks "really good"- which I should be happy about but I am confused because I am having all my normal symptoms of pouchitis.

I also have a fistula (they are not sure if caused by Crohn's or just structural) and the MRI with contrast showed no inflammation there either.
The doctor says it is possible that I have "microscopic inflammation" and wants to treat with xifaxan and VSL, while continuing 6MP (don't feel like the 6MP really does anything, still take a few imodium a day to keep my fistula from draining)
The original plan was to start Remicade but now that my scope and MRI came back with no inflammation, they don't want to do that.
I explained to the doctors how the Humira had helped in the past, felt a lot better than I do now (Cipro and Budesonide also helped) but apparently I have no real inflammation right now.

Has anyone heard of microscopic inflammation in Crohn's or UC? (my diagnosis has gone back and forth between the two over the years, my original Dx was acute onset UC but then had granulomas on later pouchoscopies and then this more recent fistula, and Dx was changed to Crohn's, and now they are not sure again)
I am confused how one can have symptoms of a flare up when a colonoscopy or pouchoscopy comes back with no signs of inflammation.

Would really appreciate any thoughts or advice about this.
04-06-2016, 06:35 PM   #2
ronroush7
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There is a dubforim called microscopic colitis. Maybe that can give you some help.
04-06-2016, 06:48 PM   #3
my little penguin
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Ds had microscopic inflammation especially in his rectum
He was miserable
Eventually it healed but he did vsl#3 Ds for a year or more
Also lots of formula
But he has crohns so might not help
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04-07-2016, 10:23 AM   #4
newbrite
 
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Thank you so much!

I just got my pathology results back from biopsies, and there is inflammation on that level in pouch, interesting stuff, I have never had this before.

I am glad to hear the VSL double strength helped DS, I just started it yesterday and trying to be hopeful!
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