hi

I have UC, a j-pouch and now a fistula. My doctor is talking about doing a vaginal flap....(i think thats what its called).........to repair it. But after reading so many posts about fistulas i understand that they are very difficult to repair. Has anyone had the flap and did it work....????

When he says a "flap" does he mean, using part of your leg to create the flap? I've had that, I believe the medical term is graciloplasty. If that is what you are talking about, mine worked. I had it eight years ago. I had to have a temp ileo while everything healed but it did work. It is a pretty intense surgery but I think it has a good success rate.
I think they are hard to repair and the flap may often be the last option. I know my surgeon tried numerous other things before doing the graciloplasty.
If this procedure is what your doc is talking about and you want to talk to someone about it, let me know.

Or is he talking about a pouch flap procedure. They cut a piece of the pouch out and use that to flap over the fistula. I would think he may try that before the gracioplasty as Olive Oil mentions that is typically a later phase.

I assume you have a Recto-Vaginal fistula. Can you give us more details. There are quite a few of us here who can help.

I have had the plug, pouch flap w/fibrin glue and now am on Remicade and 6MP. The flap worked for about a month but then the leakage seaped through (however never as bad as before the flap) and now the Remicade/6MP seems to be working but I think I have Chrohns. The plug failed right away.

I think although fistulas are very difficult to fix everyone is different and has very different experiences (which sometimes makes it even more challenging).

Kim

I had the surgisis AFP plug done, but it failed in 24 hours. Ugh... I guess it's time for big surgery now, likely graciloplasty in Cleveland Clinic. Do you always have drainage? Any recc on slowing down diarrhea?

hi

Thanks for all the replies. I believe i have a Recto-Vaginal fistula. Just this week i had a setton put in. My doc explained the flap procedure after i had had the setton put in so i was probably still out of it and didn't take in as much of the info as i should have. I will see him in afew weeks and ask more questions

Annie, you asked about drainage. Drainage from where? The leg after surgery with the drainage tube, the fistula, the bum?
When they did my graciloplasty, it was a very extensive surgery and I had to have a bag again to let everything down there heal without me going constantly. I used to take 6 to 8 immodium a day and that helped. Now that I live with the J pouch, I take nothing.

Drainage from the fistula, i guess because I have mostly watery output from cuffitis. Can you explain the "extensive" part of your surgery so I get a better understanding of it? it's prob my next step and i wanna get some opinions.

Annie,
I didn't have a choice on whether or not I had the graciloplasty (just like all my surgeries, most were emergency). I had drainage from the intestines and J pouch through to my vagina and had REALLY high fevers due to this. They had to do the surgery because they couldn't get my fever below 105 due to everything running the wrong way.

The surgery involved, as I wrote earlier, me having the bag for a few months so everything could heal. They put an epideral in my back to help with the after surgery pain and it was wonderful. They cut through the back of my leg from my bum almost all the way down to just behind my knee. They "tunneled" the living muscle and tissue up underneath the skin and placed it in the hole (fistula) between my J pouch and my vagina.

They left the muscle connected to part of my leg inside (not anything you can see) so that it would be living tissue between the vagina and j pouch. I had to lay on my side for three days in the hospital and all the blood pooled up on that side and I swelled up in the face (I looked like Rocky) and my hip ached from laying on it for so long! Not the easiest surgery to recover from.

They started physical therapy right away on my leg so that it didn't draw up and become shorter because they cut through it. I was in the hospital for 7 days on that one. When I went home I couldn't sit down for three weeks. I could lay down or stand but not sit otherwise I would cut the blood supply off to that living tissue. I had to sort of lean to one side when going to the restroom.

One nice thing was I didn't have external stitches that needed to be removed, everything was internal and disolvable. I did, however have a couple of drainage tubes in my leg for a few days.

I was on a walker for a while and then graduated to a cane. I healed completely and haven't had trouble since. I do still have phantom pain in my leg. When having an exam, putting in a tampon, or from going to the bathroom too much, I feel pain in my "leg" even though it's not my leg anymore. Because they left the muscle connected and it's living tissue, my brain will never come to the realization that it's no longer my leg but part of my bum and my vagina. I also have numbness on the back of my leg where they cut. They cut through a nerve and I've haven't had feeling there for 8 years. It's tricky shaving

This was really long but I wanted to give you as much info as I could. PM me if you want to talk and I'll give you my number. It was a rough surgery but it has enabled me to live a healthy life that wasn't possible before. I'm grateful I had it.

Hi, I was diagnosed with a fistula years ago tried alot to close it. Most recently had the flap surgery with a plug as well. My surgeon has said the fistula is closed. I do have an ostomy still so the real test will be when I reverse. They are very difficult but they can be repaired.

Hi everyone,
I am new to this site, and I am so glad to have found you all. I had surgery in Sept 06 to remove a GIST tumor (it's a rare sarcoma) from my rectovaginal septum. I had to have a low anterior resection, with J pouch formation, a partial vaginectomy with gracilis flap reconstruction as well as a temporary ileostomy. In Jan. they did the ileostomy take down but when I finally had bm's I discovered I had a leak, when I had huge amounts of stool coming out of my vagina. Of course I had to have the ileostomy put back immediately. They found the leak during an anal exam under anesthesia and it is involving the gracilis flap. I have surgery to repair the leak next week (April 6). This has all been extremely frustrating to me, and I'm sure you can all relate.

Jen M.

kit10,
I'm sorry you have to go through that again! I can't believe it leaked! Please keep us posted on how the repair goes. Take care.

Hi Jen and Welcome!I am gald you ofound the site it is great to know you are not alone. Good Luck on the 6th we will be thinking about you.

Hi -

I just saw my surgeon today (on the advice of Shelby) and he believes I have a fistula. I have not yet had takedown, but having been passing air through my vagina...

He took a look with the scope and didn't see anything, and as I still have two months to go before takedown, his advice for now is to "wait and see" - maybe it will close on it's own, or maybe I have to hang on to my stoma a little bit longer and have the flap surgery.

I'm glad I found it now, but it's still very disheartening and scary - especially when my surgeon told me he's been doing j-pouches for over 30 years, and I'm only the second fistula he's had!

Quick question - when you say "stool is pouring out" is this something you control? I.e. it only happens when you are going to the bathroom? Or, is it uncontrollable and you have to wear diapers or similar?

I guess for now I just sit and wait...so far, he didn't see any crohn's of the pouch, but this was my biggest fear...

Lisa

Lisa, glad to hear you went to see the doctor
Hopefully since he didn't see anything, it isn't anything major.

Yes, stool leaks and you can't control it. Some experience less or more I think depending on the size of the fistula, location...
You may be able to get by with panty liner changes, or you might need a pad. I don't think a diaper would be necessary in most cases.