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I was originally diagnosed with UC and now have Crohns.  They discovered ulcers both in the pouch and above. I am on a weekly  dose of Humira,  and morning doses of budesonide and Imuran - all to help heal the ulcers. My pouch is actually behaving well inspite of this.  I have been scoped every four months to monitor things. 

My advise is to first breathe - if you’re like me I always go way too far ahead in the what if. Take one step at a time. Second talk to a knowledgeable GI who understands j-pouch issues. My doctor drew pictures of what he saw on the scope and explained a lot of the options we could try. 

Don’t let this defeat you, but become a learner of what works for you. Remember you are not alone. There are a lot of us to support and cheer you on too!

Hope this helps🙂

My son had UC, now J pouch, then developed Crohns as well.  He is doing well on Pentasa, 3000mg per day.  He also takes the PB8 probiotic, which I found recommended elsewhere.  It's all individual though.  I agree with other posters that you are not in this alone.  We tried many different things before we pulled some advice from here, some from there, and ended up with a plan that is working for him for the moment.  Know also, and be patient with, the fact that there is no final solution.  Hang in there.

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