Wondering how people have handled this one. Son ended up in the ER with severe pain in lower bowel/bottom. A scope confirmed a few small ulcers and some fissures as well. He has been on Cipro for years for chronic pouchitis. Does this mean it is not longer working? Does this mean pouch is failing? He has struggled with the pouch since he got one ten years ago but Cipro has kept it mostly in check until now.
Replies sorted oldest to newest
I think it does mean that the Cipro is probably no longer doing the job. Was he having any other symptoms of pouchitis? It can creep up so slowly that it continues to seem “normal” even things get appreciably worse over time. Has he tried other antibiotics? Ideally he could find another single antibiotic that would do the trick. It’s also possible to get good results with a combination of two antibiotics. When Cipro alone stopped working for me (something like 7 years ago) I was able to get back to a very good situation by adding Flagyl, even though Flagyl alone had never helped me.
The fissures might be something else -perhaps he’s straining?
He was having some issues with gas/pain intermittent. So now they just put him on another antibiotic in additional to Cipro and told him to visit surgeon for fistula. We will see what they say. Wish we knew more about chronic pouchitis when he did J pouch. Not sure he would have done it will all the challenges and medications he has to take to solve - plus blockages, fissures, etc. Seems like UC all over again.
I was on Cipro for several years and then it stopped working. There’s loads of other treatment options including biologics to address the inflammation and ulcers. Don’t stress about the pouch failing, this is pretty normal stuff for pouches that I’ve seen other pouchers on the forum discussing, although certainly not fun!!
Ok thank you! What about the fistula issue? Is that common too? He went in for surgery on it once but they couldn't find the opening and ended up not doing anything with it.
That I’m less sure about TBH. Sorry.
The original post said fissures. Does he actually have a fistula (or multiple fistulae)? Pouchitis doesn’t usually lead to a fistula. A few different things can cause fistulae - how long has he had this one?
He actually has both right now. But definitely has a fistula that has been there for at least a year. Seems to flare up and then quiet down. They tried to operate on it last year but couldn't find the opening so didn't do anything.
Do you think it might be crohns???
@feirs1 posted:He was having some issues with gas/pain intermittent. So now they just put him on another antibiotic in additional to Cipro and told him to visit surgeon for fistula. We will see what they say. Wish we knew more about chronic pouchitis when he did J pouch. Not sure he would have done it will all the challenges and medications he has to take to solve - plus blockages, fissures, etc. Seems like UC all over again.
fissures or fistulas? very different things
@Pouchomarx posted:fissures or fistulas? very different things
Can you explain the difference? That would be great!!
A fistula is like a little tunnel that starts in the re tap/anal area and leads away and out-sometimes creating a tunnel from the rectum/anal area to the vagina, or sometimes just from the rectum/anal area and out through the skin of the buttocks (or sometimes the tunnel doesn’t connect to anything (yet)-just tunnels off. They are more prone with Crohns than UC, but also not uncommon to happen with UC at the site of the anastomosis (where the j pouch is sutured to the rectal cuff). They can be hard to treat.
A fissure is a tear in the tissue-can happen internal of the anus or on the skin leading out. It can feel like you are pushing out shards of glass when you eliminate if you have a fissure.
@JJA posted:A fistula is like a little tunnel that starts in the re tap/anal area and leads away and out-sometimes creating a tunnel from the rectum/anal area to the vagina, or sometimes just from the rectum/anal area and out through the skin of the buttocks (or sometimes the tunnel doesn’t connect to anything (yet)-just tunnels off. They are more prone with Crohns than UC, but also not uncommon to happen with UC at the site of the anastomosis (where the j pouch is sutured to the rectal cuff). They can be hard to treat.
A fissure is a tear in the tissue-can happen internal of the anus or on the skin leading out. It can feel like you are pushing out shards of glass when you eliminate if you have a fissure.
Thank-you 