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Colectomy done in 2002, take down 3 months after, 15 years of mostly okay regular life except for the pouchitis, it is mild to moderate pretty much consistently these days. I'm just exhausted. Most antibiotics do not work anymore, and I usually have some sort of reaction to new ones. Steroids bring it back when necessary but doc wants to try Remicade to hopefully generally feel better. Are there any side effects to watch out for? Any concerns or reviews?

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I have been on Remicade since November 2015. Based on two scopes that have been done since starting Remicade I can say that it works better on pouchitis or inflammation in the Pouch than it does on inflammation above the Pouch. I came into Remicade with both and it seems to have really helped the pouch inflammation but not as much the inflammation in the neoterminal ileum above the Pouch, which is more resistant to the treatments we have thrown at it. I am not really symptomatic at all, however. Things are under control and the object sometimes is not to let things get worse. I have had IBD for 45 years now and it can be lived with if you can find something that sort of keeps it in check.

As far as side effects to Remicade- none, and I take methotrexate to suppress renal secretions. You should worry more about side effects from Methotrexate than the Remicade. The side effects of Methotrexate are counteracted by Folic acid. I forgot to take the Folic Acid a few days one week and developed some small mouth sores. That taught me a lesson: don't forget to take the Folic Acid!!!. And now I don't forget and no more mouth sores.

Nothing else whatsoever. I get Remicade 900 mg every 6 weeks now. All blood labs came back good since 2015. It's good.

Last edited by CTBarrister

I tried Remicade when I still had my sick colon, and it didn't work for me at all. Now that I'm exhibiting signs of chronic pouchitis, my GI would like me to go into a clinical trial for a biologic that is approved for UC/Crohn's but is in trials for pouchitis. I'm reluctant, since I didn't respond to biologics (including Humira and 2 other trial drugs) when I had a colon. 

Interestingly, my GI took Remicade off the table for this round, since studies have apparently shown that the really scary side effects (cancers etc.) are more likely in people who have taken Remicade and then gone off it for a period of time, and then re-started. 

I'm waffling about going back into a clinical trial, since I had no relief from those drugs in the past, but I'm not sure how long I'm willing to keep up the Cipro/Flagyl regimen. 

Lots of people (obviously, from the posts above) get good results from biologics. Just wanted to give a different perspective. Good luck making your decision!

Jan, yes, it may be vedolizumab. I think that was one of the drugs I trialed when I still had my colon. It was a phase 3 trial so I knew I was getting the drug, and not the placebo. That would not be the case in the current trial, in which it would be a 50% chance that I would get the drug. Anyway, I'm still turning it over in my mind. It seems like a big commitment.

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