I feel for you.

I have one, a perianal intrasphincteric fistula "at seven o'clock." Does not involve my pouch at all. Started sort of over a month (had anal "irritation," or so I thought... Then found a bump).

Went through all sorts of issues (first more recent post here: http://j-pouch.org/eve/forums/...057078926#6057078926)

I have a seton drain. It's more a palliative treatment than a cure. I don't know where we'll go with this, but my surgeon is very laissez faire with how he's approaching this. May have the seton for months to years. He doesn't want to currently pursue a Crohn's diagnosis, because I have no major issues at the moment besides the fistula. I did have outlet narrowing, but he thinks that was more related to the fistula inflammation. We've not totally gotten rid of that as a possibility, but I'm on no Crohn's meds. In fact, I'm only taking Culturelle, Florastor, a B vitamin, and Blackstrap Molasses.

The seton stopped the cyclical filling and bursting of the fistula (that would try to continually abscess), so I'm thankful for that, but it's still not "normal," and bathrooming is more complicated by a bit these days.

I feel for her, and her pain. The abscess then fistula and all I've gone through with it was nearly worse than UC and J pouch surgery, and I'm not kidding.

Sorry to hear this, Kelsie. I too have a PVF ("Pouch-vaginal-fistula") which exits near the vaginal opening. There's one fistula that exits, and 2 that branch off of it and are internal with no exit points.

This was found by MRI and then EUA. Treatments involved first, doxycycline injections (3) by Dr. Shen at CC. One of the internal fistulas became smaller, but the main one was not affected. I was also on antibiotics at this time - tindamax. I was then sent to surgeon who put in a seton, as she said she would not attempt any type of repair without first having a seton placed in the hopes of healing the internal opening and the "skin" in the inside of the fistula. There hasn't been much discussion re. the 2 branches off the main fistula. I have never had much pain, except when the fistula abscessed, off-the-charts pain.

It's been a year of the seton, and I was told it could be 3-4 years. I see the surgeon for an annual follow-up in a couple of weeks: she recommended a pouch re-do, I am considering pouch removal. I'm in mid-50's.

I'm currently off antibiotics and all other meds, save for Canasa for cuffitis on an as-needed basis. Hope your daughter finds answers soon.

Kelsie,
I have a RV fistula and for now it's not much of a problem so they are waiting to see how things progress, they do think I have crohns however even more now since finding the fistula, am also on antibiotics for pouchitis. Hoping everything improves for you, I know how frustrating this all can be.

I am sorry to hear about the fistulas. I had an anal fistula. After 3 antibiotic rounds, a general surgeon performed a fistulectomy. Although the fistula was distal to the pouch, I was totally incontinent following the surgery. After a repair surgery, things have gotten better, and I cope, but I am still functionally incontinent. Explore all your drains and medication/treatment options and then insist on a pouch doc to consult on/perform surgery on them only as a last resort. At least that's what I wished I'd been offered and done. Best of luck.

That's why my surgeon is so not hot to do anything surgically. J pouchers are already taking a sphincter hit just from our big pelvic floor surgery... Fistula surgery can cause incontinence in non-J pouchers, too, so no one is guaranteed not to get a degree of incontinence. I hate the seton, but it's allowed me to be semi-normal with the fistula... Though I wish I could be back to my REAL normal. However, it's not the end of the world, and I've been through a lot, and I'll just deal with it all on a day to day basis. What else CAN I do, right?

The surgeon couldn't find the fistulas on exam. So I guess we just hope there really aren't any??

Without my pelvic MRI, it's doubtful my surgeon would have easily found mine. Even with the MRI confirmation, he had a hard time finding the inner aspect of it on exam. If they haven't done a pelvic MRI, ask for one. Gold standard for diagnosis.

She had an MRI and that is what the radiologist report said, three fistulas. One horseshoe one that likely communicates with a smaller one and then a third tiny one.

The surgeon couldn't find them on exam.

I guess Im just nervous there is something there that isn't visible to the surgeon. It would certainly explain the pain and feeling so awful.

So we just wait and worry?? I dont like the idea of waiting until they are really bad to know if they exist.

Can you get a second opinion?

We probably will.