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FM
Former Member
Hi, my 20 year old son had a colonoscopy today which shows, although he is well at the moment, that his bowel is not healing even though he is on infliximab (remicade). This was such a disappointment to us although he has been going to the loo more lately and we were starting to wonder if after only 6 infusions it was wearing off. We have been told to see a surgeon to discuss a j-pouch. Can anyone tell us if they have had the surgery particularly boys/men? Fertility problems have been mentioned as well as pouchitis. Any advice please? Many thanks

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Being that I'm in between surgeries for the J pouch, I'm probably not as qualified as others to answer, but here's my $0.02 anyways. Impotence/erectile dysfunction, although rare, is a possibility. I think the stats claim that this only happens in less than 1% of men. To be safe, I had my kids stored at a cryobank (but turns out I didn't need to). Although many j-pouchers suffer pouchitis at some point, very, very few suffer chronically. It's usually treated with antibiotics and for the most part/for most people, it's manageable quite easily. I highly suggest going on YouTube and watching all the videos by a man named Dennis (search for UCvlog). It's a treasure chest of information and will answer most if not all of your questions. Sorry I couldn't be of more help!
D
Good for you Rocket! I had my 3 step beginning in 1996, my kids were 5 and 8, so I can't speak to the infertility question, but there are so many people on here who have had healthy children after jpouch surgery. Franny, it is imperative you find the best colorectal surgeon. Interview, interview and then interview again. Any good doctor will completely understand (and frankly, who cares if they don't). After suffering with a bad colon (does he have UC?) -- this may be a relief. I'm sorry that you have to watch your child suffer -- I can't even begin to imagine how difficult that must be. Hugs to you, honey.
Laurie49

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