Saw Dr. Hull yesterday and discussed what she found in the EUA and options for dealing with the pouch-vaginal fistula I've had since the end of 2010. She placed a seton in May, 2012. One of the more important things about this fistula is that it's angled, which makes it longer and has a number of other ramifications.
She set out 3 options: 1) leave the seton in for 3-4 years, then take it out and show how it goes; 2) have a pouch redo, or 3) have the pouch removed.
She said - with absolutely, 100% certainty, that she guarantees that this fistula will not heal itself. She did not recommend a flap - she doesn't do them anymore in circumstances like this; their success rate in her experience is <10%, she does not recommend a LIFT in my circumstances, and says the plug's success rate in her experience is 0%. So that leaves pouch redo or removal, unless I wanted to try a flap, she'd do it, but ... <10% success? Nah.
She offered up a redo option because apparently my pouch is small (<15 cm), which could explain the more frequent BMs, and I have a long transition zone (cuff), slight narrowing at the pouch transition zone and mild narrowing at the top of the anorectal ring. (Moral of the story: if you're having jpouch surgery, find a very, very experienced surgeon!) She said she would take out the jpouch, fix the fistula, do her pouch revisions, and put it back in. Very big surgery, 4-6 hrs., lots of blood loss, temporary ostomy, another surgery, etc. And even then, there's no 100% guarantee (with a redo or with removal) that the fistula would be fixed and/or would not come back.
On the bright side, the pouch looked good as far as pouchitis symptoms, there were no ulcers, she said there were no signs of "rip roaring" crohn's disease, thus the option to undergo pouch redo if I wanted it. Of the 3 sinus tracts, 2 are smaller.
My decision is to stick with the seton, at least for awhile - this should keep things under control (prevent abscesses, prevent branching, prevent fluid build-up and festering). Having it there is not physically a problem at this time, I typically don't think about it or feel it at any time. And my pouch is working just fine right now, no real complaints, thank you very much. Mostly, I just can't bear the thought of either of those surgeries, especially since there's no guarantee on killing the damn fistula once and for all. And who knows, maybe in a few years they'll come up with a better way to deal with fistulas....
A few interesting notes:
- She puts in 2 bands (she called it a vessel loop, looks like a yellow rubber band), so it's not an emergency in case one breaks;
- the rubber-band type seton was put in instead of thread because apparently thread hurts more;
- I can have marital relations, it will NOT damage the fistula, but it might hurt. Sigh.
- She told me sitz baths, in this instance, is for comfort only. Will not aid in healing the fistula;
- She has a patient who's had a seton for 11 years, is doing fine, got PG and had children while the seton was in...
- She has a female patient with 12 yes 12 fistulas, 12 setons. Just her choice to live with them rather than go to a permanent ostomy.
- Angled fistulas are a problem! With straight fistulas, eventually tissue that's like skin grows into the tract, so it's not all raw, and it doesn't have that capability to get all plugged up. With a longer, angled tract, like mine, more room for debris to get caught in there and kind of fester; no cure for it outside of the big operation;
- I'm to use antibiotics as I see fit for control of any long-term pouchitis symptoms: some people take 1/day, some every other day, some 1 week out of the month: whatever works, at the lowest dose possible.
- best news of all, I don't have to go back up for a year, and she recommended a GI at OSU so if I have medical GI needs, I'll have a doc closer to home.
Sorry for the length! If anyone has fistula questions, feel free to pm me, I feel like I'm finally understanding them a bit more ...
She set out 3 options: 1) leave the seton in for 3-4 years, then take it out and show how it goes; 2) have a pouch redo, or 3) have the pouch removed.
She said - with absolutely, 100% certainty, that she guarantees that this fistula will not heal itself. She did not recommend a flap - she doesn't do them anymore in circumstances like this; their success rate in her experience is <10%, she does not recommend a LIFT in my circumstances, and says the plug's success rate in her experience is 0%. So that leaves pouch redo or removal, unless I wanted to try a flap, she'd do it, but ... <10% success? Nah.
She offered up a redo option because apparently my pouch is small (<15 cm), which could explain the more frequent BMs, and I have a long transition zone (cuff), slight narrowing at the pouch transition zone and mild narrowing at the top of the anorectal ring. (Moral of the story: if you're having jpouch surgery, find a very, very experienced surgeon!) She said she would take out the jpouch, fix the fistula, do her pouch revisions, and put it back in. Very big surgery, 4-6 hrs., lots of blood loss, temporary ostomy, another surgery, etc. And even then, there's no 100% guarantee (with a redo or with removal) that the fistula would be fixed and/or would not come back.
On the bright side, the pouch looked good as far as pouchitis symptoms, there were no ulcers, she said there were no signs of "rip roaring" crohn's disease, thus the option to undergo pouch redo if I wanted it. Of the 3 sinus tracts, 2 are smaller.
My decision is to stick with the seton, at least for awhile - this should keep things under control (prevent abscesses, prevent branching, prevent fluid build-up and festering). Having it there is not physically a problem at this time, I typically don't think about it or feel it at any time. And my pouch is working just fine right now, no real complaints, thank you very much. Mostly, I just can't bear the thought of either of those surgeries, especially since there's no guarantee on killing the damn fistula once and for all. And who knows, maybe in a few years they'll come up with a better way to deal with fistulas....
A few interesting notes:
- She puts in 2 bands (she called it a vessel loop, looks like a yellow rubber band), so it's not an emergency in case one breaks;
- the rubber-band type seton was put in instead of thread because apparently thread hurts more;
- I can have marital relations, it will NOT damage the fistula, but it might hurt. Sigh.
- She told me sitz baths, in this instance, is for comfort only. Will not aid in healing the fistula;
- She has a patient who's had a seton for 11 years, is doing fine, got PG and had children while the seton was in...
- She has a female patient with 12 yes 12 fistulas, 12 setons. Just her choice to live with them rather than go to a permanent ostomy.
- Angled fistulas are a problem! With straight fistulas, eventually tissue that's like skin grows into the tract, so it's not all raw, and it doesn't have that capability to get all plugged up. With a longer, angled tract, like mine, more room for debris to get caught in there and kind of fester; no cure for it outside of the big operation;
- I'm to use antibiotics as I see fit for control of any long-term pouchitis symptoms: some people take 1/day, some every other day, some 1 week out of the month: whatever works, at the lowest dose possible.
- best news of all, I don't have to go back up for a year, and she recommended a GI at OSU so if I have medical GI needs, I'll have a doc closer to home.
Sorry for the length! If anyone has fistula questions, feel free to pm me, I feel like I'm finally understanding them a bit more ...
