Pouchitis

heverMember

Hi everyone

Had my pouch formed in 1992,due to UC, problem free really for many years but then unfortunately had a lot of ops due to adhesions, in an emergency op in 2017 I was given an end illeostomy. The jpouch was left in place just disconnected.

I did get mucus every month or so from the jpouch but was told by the specialist this was normal, but for the last year I have been getting more and more mucas-10 times a day so the specialist(Gastro) put me on Cipro and flagyl but they did nothing. Then put on Xifaxin but also did nothing. Now he wants me to go on Entyvio prob for life😳The Gastro said it’s a very safe drug working in the intestines not body wide.

I’ve read the side effects on line and am undecided as some of them sound bad, so my question is has anyone been on this infusion, did it work, have you had any side effects?

I also have glaucoma and have had a Trabeculectomy in each eye and wonder if this would impact this.

Thanks for any help

Heather

6/11/2311:56 PM

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Doug KMember

You could be suffering from Diversion Pouchitis. Colons or Pouches that get diverted from the fecal stream sometimes got sick because they lack the nutrients that they would normally get from the fecal stream. You can get fatty acid enemas which bathe the area compatible with the nutrients lost upstream in the appliance. For me they cured my diversion Pouchitis in a week. I use a formulary in LA for fatty acid enemas. Good luck

6/12/2312:31 AM

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Scott FMember

Doug K’s suggestion of fatty acid enemas could be perfect for you. Adhesions can cause trouble whether the pouch is connected or not. Is reconnecting the pouch an option? There is also the option of removing the pouch, though that’s best done by a surgeon who’s very experienced in pouch removal.

6/12/231:18 AM

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heverMember

Thanks for your replies

The specialist didn’t seem to think I had diversion pouchitis, I was contacted today by the Infusion team to arrange for my first treatment- feeling anxious and just hope it’s ok, they said it’s lifetime treatment 😬

This disease never ends

Im certainly going ask about your suggestions regarding diversionary pouchitis at my next appointment

Thanks again all

Heather

6/13/2310:11 AM

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