Skip to main content

Is there someone who has chronic pouchitis and has had difficulty staying in remission.

I’m wondering what medication I should try next. Lialda has helped but I still get flares while taking it. I certainly don’t want to think I’m going to have to consider a colostomy after years of having the Jpouch. Thanks for sharing what worked for you if you had or are having the same experience

Original Post

Replies sorted oldest to newest

Hi Scott. I have indeterminate IBD. I got my pouch in 1995 after years of UC. Within an 8 year period my pattern has been Lialda and budesonide, remission for 1-11/2 years without meds, return of symptoms, then back on meds.

I’m currently on mesalamine but I have had hints of a flare. Dr is recommending biologics. But for some reason I am afraid of them. I am determined not to give in to them but I wonder if I am being foolish. (I question whether all the non-Biologics are more harmful to my body). If I agree to the biologics and they don’t keep me in remission, THEN WHAT????  Then there’s a question of cost. I worry whether at some point  I will be unable to afford it. These unknowns is my dilemma. By the way, do the cipro and flagyl keep you completely asymptomatic and are they meant to take only at the start of a flare. Thanks for giving me your time

I have been on Biologics for 8 years and was resistant for around 5 years previous for some of the reasons you mentioned. However 8 years later I am better, have had no side effects from the biologics and managed to survive Covid 19, although it sucked for a couple days.

As far as the cost- Remicade is/was covered under every insurance plan I have had the last 8 years through 3 or 4 different insurers, with minimal copays. There is secondary insurance for it that (1) pays what the primary insurance doesn't pay and (2) counts towards your deductible as payment by a third party on your behalf. So that you actually get a financial bonus of sorts by being on Remicade. The secondary insurance is provided through the manufacturer and and is administered by Janssen.

Those payments mostly were what chewed up my $5000 annual deductible with maybe $500 out of pocket from me at the very most under any plan. That's called a $4500 windfall, or you can call it the Remicade bonus if you wish. Probably better than the bonus I will get from my employer although since I received an unrequested raise a couple weeks ago, I should probably shut up. On that.

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.