My husband has what we now believe is ulcerative colitis (his previous doctor had told us that it's probably chrons but we've decided that guy didn't know what he was talking about....especially when my husband said the predisone isn't working and the doctor through his hands up in the air and said "what? that always works")
So now we're dealing with what we believe to be uc. Right now he's having a really bad flare. In the bathroom every hour and in really bad pain. Right now he's on predisone and colazal and tomorrow we go in for his first remicade treatment. We're both praying that works (and works quickly) because the only thing he can really eat right now is chicken noodle soup and ice cream (with other foods a gag reflex kicks in). But if for some reason this remicade doesn't work, is there a next step? or are we looking at surgery?
I'm coming to accept that surgery may be in our future (it's all happened so fast, he was diagnosed about a year ago). Does that automatically mean a J-pouch? It's the right side of his colon that is affected (about 30-40 cm up). I don't want to ask the doctor, or discuss it with my husband because either way is fine and I don't want him to think he needs to worry about me if that's the next step we have to take. If we have to deal with a bag we can. I just need time to wrap my head around it if that's going to be our next step if Remicade doesn't work. Or are there other medicines we can try first? Hopefully remicade works. If it doesn't I think my husband will spiral into depression (although he's already rather sad). I'd like to have some other option to give him if this doesn't work to hopefully keep his spirits up.
I know this is unbelievable hard on him but I had no idea how draining it could be on me as well. It's so hard to see him up constantly throughout the night and in constant pain. He has trouble even getting out of bed now. We need some kind of relief because he can't live his life like this.
Thanks so much (I think it was theraputic just to write all of this)