I am trying to ensure I have explored / considered all my options before resorting to a permanent ileostomy. I just want to know I did everything I could before doing the surgery and having my pouch removed…you know I don’t want to be thinking “what if” for the rest of my life.

So, I am looking for what successes others in my situation have had. My surgeon is willing to try doing a temporary ileostomy (laparoscope) and a pouch flap advancement for a recto vagina fistula I have.

Has anyone else had success with this surgery? If so please provide how long you have been “well”.

Any other surgery to repair a recto – vagina fistula that has been successful? Again if so please provide how long you have been better.

I read about the graciloplasty, only from a few people, sounds painful but possibly a success? (Caty seems to be the one with the best results??)

Here is a brief history:

Pouch for 16 years with pouchitis from almost the begining

Recto (pouch) vagina fistula (diagnosed as complex), tried Remicade and fibrin glue

Addition abscess by the vagina area (painful)

Structuring in the small bowel above the pouch (defined as inflammation and narrowing of the small intestine)

Pathology shows UC, even 16 years later

Just got the Prometheus blood test and it says 98% chance Crohn’s disease (got the results on Friday so I don’t have the exact report to read about further info yet)

32 years old, married 10 years May 31, possibly still want kids – but not living like I am right now

Always worn out fast, but lately its pretty bad – home from work, dinner and fall asleep – usually before 9 PM

Just trying to decide if I should give up, try to live a normal life with the permanent ileostomy or if I should go through many other treatments that may or may not work and still end up in the same place. Sharing your stories hopefully will help me decide if I should “give up” now – which should still mean a much better life or if I should continue trying, which could possibly mean more surgery, medications and possible permanent ileostomy anyway!

Thank you!

Big Bird,
I am a success story for having a recto/vaginal fistula repaired. They tried the usual medication with me and that did nothing. My fevers were around 105 due to the fistula so they gave me a temp ileo and tried numerous things to fix it.

My surgeon tried medication, temp ileo and letting it rest to heal,stitching, glue, the pouch flap advancement and none of those worked. I tried everything before the major surgery of taking a muscle flap. What did work was using a gluteal thigh flap (like the graciloplasty but a different muscle). I had that done 8 years ago this July and it has held up just fine. I'm so glad my surgeon went that route.

I recently posted an article in the women's forum about the differnt muscles they can use to repair fistulas. The gracilius muscle is not your only choice. the article is not geared towards fistulas but rather general repairs of the area down there. I used to think gracilioplasty was the only thing used; it's not. Check out the article, it gives the pros and cons of each surgery and muscle.

I won't lie to you, the surgery was difficult and recovery took about a month before I was walking normally. But if you follow the post op instructions (don't sit down and cut off the blood supply so that muscle will be living tissue) then you should be fine.

I do not regret for a moment having it done. If it were me I would give that surgery a shot before getting rid of the pouch all together. If that doesn't work then go permanent ileo but this way you would know you tried everything.

I only have a few side effects from the gluteal thigh flap surgery and one is that I still feel pain in my "leg" where they took the muscle. If I'm having a female exam or rectal exam and they touch the flap I still feel it in my leg because the muscle is attached and is living tissue. Your brain doesn't understand that it's no longer your leg and you have phantom pain. But I can live with that; I don't have stool coming from my vagina any more.

Good luck with making your decision and I wish you good health.
Feel free to PM if you want any more info. I'd be glad to give you my number if you want to call and chat about the surgery I had.
Take care

Big Bird,

I have only had my R/V fistula since last August (06) and had my pouch created and takedown in January 05. Since fistula formed 18 months after surgery they think its Chrohns (promethius also looks like Chrohns but all my pathologies were UC as well).

Since the surgeon had to do a EUA when the abscess and fistula were discovered he did do an R/V fistula plug procedure (but warned it would fail and it did). Then a month later had the pouch flap advancement with fibrin glue (without an ileo) and it lasted about a month and failed. Then in Dec started Remicade and in Jan 6MP and I have not leaked since Dec. So it has been 5 months but I know there are others where the Remicade worked for awhile and then stopped but for now mine is still holding up.

There are others on the site who have reverted back to an ileo and feel like they got their lives back. Also there is someone here (hopefully she will see this) who succesfully closed her fistula with an ileo with a combination of a plug and pouch advancement flap procedure. She is considering having takedown for the first time in many years.

I think unfortunately these fistulas are tricky little things to heal but there has been some success. There are many here who know what you are going through. Good luck and let us know if you need anything else.

Kim

Olive Oil, thanks for posting the article, that is good info and prompts me to search more about this surgery. Sounds complicated and painful. Had your doctor done this before doing the procedure to you?

My regular surgeon really only assisted in this operation and actually a plastic surgeon did the flap. I remember my Dad asking if he had done this before and he said yes. My Dad asked him about how many he does a year and he said, "Maybe one." So it might not be a common surgery but it is done. I think the plastic surgeon that did mine moved to Cleveland. He told me after the surgery when checking on me that he gave himself an A+ for his work and since he was moving, if the flap ever failed he would personally fly me out to Cleveland to fix it. And don't think I won't take him up on that if I need to
It was a rough surgery and the hardest recovery of any surgery I've ever had but well worth it to not live in pain, with stool coming out places it shouldn't, or with the bag.
Just let me know if you have any other questions.

Hello from the Netherlands,
I am quite desperate because I had 3 fistula sugeries and it didn't work. There is lack of information here. For my last surgery I went to Germany.
After searching the web I came here. Can someone help me finding the best surgeon, it doesn't matter if I have to fly to US. I am very intersted in the surgery with the muscle, can you tell me more about it? They don't do it here that way.
Thanks, Rose

If you go to the Women's section, there is a post entitled "Fistula Gals Come Out"....it's got quite a bit of information from several members who have had extensive experience with fistulas. I was only recently diagnosed with mine and am headed in for a pouch flap and diverting ileostomy on Tuesday, plus a course of Remicade.
Doctor-wise, many people on this site rave about the Cleveland Clinic and Dr. Fazio. I have not been there myself and feel quite confident in my surgeon here in NJ, but he told me if another opinion was needed, Cleveland would be the place to go.
If you're interested specifically in the graciloplasty, you should PM Lori (Olive Oil) -- she had this done years ago and it was very successful for her.
Good luck!

Here's a phase 3 study link they are doing in Europe.

http://clinicaltrials.gov/ct/gui/show/NCT00475410;jsess...3497887EBC9?order=42

For those of you over the pond it might be an alternative! I emailed them to see if I could do it here. It's only for perianal fistulae though. I would think they are investigating it for other kinds though. Check in Google.

I'm scheduled for another ileo in November and possibly some Remicade. I already failed pouch advancement/diversion. I really want to keep my pouch though, but I'm also tired of 3 inches of my butt controlling my entire life!!!!

I'll post the link in the General section too.
Lori