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Has anyone had personal experience with rectovaginal fistula repair?
After surgery in August for hemorrhoids and rectal prolapse I was left with fecal incontinence. Soon after going home from the hospital I noticed fecal matter coming also from my vagina. My surgeon said that may have occurred when an attempt was made to remove a fecal impaction that was found during the surgery. He then recommended doing a temporary colostomy. This was intended to allow the rectum and colon to heal for a future repair of the fistula. This was done in September. The morning after the colostomy surgery, my surgeon announced that the 'bridge' ( small plastic piece intended to support the loops of bowel ) was missing. He did not know when or where it had gone. I spent several days in the hospital but eventually went home and had Homecare visits to instruct and help us with the emptying and cleaning of the ostomy appliance. With no support for the bowel loops, my stoma was recessed and has become extremely recessed in the next months. This makes for more difficult care and now the opening that is meant to empty into the pouch, has recessed to the point where it has sunk to to the bottom of the area, barely visible. This may be the reason that i have as much output of stool rectally as into the pouch. After a couple of ER visits, one for ostomy pouch leaking bloody stool, and one for urinary retention, and later, a blood clot, I had lost confidence in my surgeon. My family all was urging me to seek a specialist. I did find a surgeon and now am scheduled for a Rectal Exam under Anesthesia with possible rectal flap procedure or possible SETON placement. He told me that in my situation I have probably less than a 50-50 chance of regaining normal bowel function. He also was less than encouraging about fistula repair outcomes. I am looking at this with more and more trepidation and can't find much online that leads me to believe this will be a positive experience. My primary care physician also made the remark "I hope he told you this is a difficult problem to fix." Do I have a choice? I feel now that everything is broken beyond repair. As of now, I'm spending most of my mornings in the bathroom, first emptying my pouch, sitting on the toilet trying to allow stool to exit my rectum but afraid to strain to help it.....and having the constant feeling of needing to have a bowel movement, As soon as I get cleaned up and stand up from the toilet, I have the urge again to sit back down. My new surgeon suggested tap water enemas for a week to clear out the colon. I did this and the first day I did get results but after that, the water squirted right back out as though it was hitting a wall. Then it seemed as though it might be exiting through the fistula. I stopped the enemas because I was afraid I was going to make the fistula worse. I'm counting the days until my procedure just after the first of the year. I have doubts that I will ever be in a condition which will allow reversal of the colostomy. At this point, I could deal with the ostomy if I did not also have to coax out the stool in my rectum. Has anyone out there had a successful fistula repair?
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@colleenyoung , I’ve seen several gynecologists for my rectal/vaginal fistula. They are unable to help due to the fact my entire rectum was removed during the colectomy with j pouch surgery in 1983. I’m at wits end! Suggestions would be greatly appreciated. I’m in Texas, approx 90 miles East of Dallas.
I’m not sure I have the same thing as you but perhaps in layman’s terms without knowing the name - I have Jpouch anal stenosis with prolapse of the pouch as well placing it right up to vagunal area and too risky for surgery
My heart goes out to you. I was thinking of revisiting for options the doctor to see if they can help the continual horrible issues within the anal area of when I try to evacuate stool and the irritation of all the food when it passes. Constantly inflamed tissue. Years ago because it was so close to the vaginal area they said it was too risky to
Try and fix. . Reading your post makes me think that neither can really be fixed. I don’t want to risk worse things happening - it actually dumping into vagina , but was hoping they could fix the skin around the anal area at a minimum so it wouldn’t be so sensitive. It doesn’t sound like anything worked for you.
Do you have these issues when trying to evacuate with skin irritation in the annal area. Perhaps you don’t have stenosis but I do think fistulas and fissures are an issue? Years of small pieces of food, getting stuck within the faults of the anus, causing irritation on evacuation. If so, did the surgeries you had help with this at all? I’m sorry I’m not answering your question. I’m just trying to see if we might have the same thing and can relate possible remedies in future.
@lhstephenson I also had a j-pouch/vaginal fistula. Mine occurred within a month of my colectomy in 1987. Despite several attempts to repair it, it always came back. I also had recurring anal abscesses and fissures. Because of these issues, I chose to have the j-pouch removed and a permanent ileostomy in 2002. It's not what I would have wanted, but my quality of life is so much better. I haven't had any vaginal issues since then.
I read that you had a temporary ileostomy that was flush, and very difficult to manage. I had one of those as well. My permanent ileostomy is much better placed, protrudes properly, and is easy to manage. I get 4 to 5 days wear time, and I don't have any skin irritation.
I know you don't want an ileostomy, but my experience with a permanent one is nothing like the temporary one.
Have you talked to a colorectal surgeon to see if a j-pouch reconstruction would help with the issue?
@susanf8 Hi Susan! I did ask about a pouch revision on my surgical follow up visit. The surgeon said it would be a very intensive surgery and I would still end up with a temporary ileostomy while it healed. I was 26 when I had my first surgery, and I am now 68. I’m actually in pretty good health, all things considered. My husband encouraged me to research online tosee if there might be another physician who is having success with alternative treatments and or surgeries.
@lhstephenson You might try getting an appointment with Mayo to see what they can tell you. They have been doing j-pouches since the 80s so they may have some experience that will help. If you go to the home page, scroll to the bottom, there is a button to request an appointment.
It also depends on what caused the fistula. In my case it turned out that it was Crohn's Disease, and a reconstructed pouch would very likely have the same pouchitis, fissures and abscesses. Plus my anal muscle was compromised.
Just know that the permanent ileostomy won't be the same as your temporary was, if it turns out you don't have another option.
Do you know what caused the fistula?
@susanf8 not really sure what caused the fistula, but I have my suspicions. I noticed an unusual bulge in my vaginal area approximately 15 years ago. I went to a rectal physician who diagnosed it as a rectocele. About five or so years ago, I noticed air discharge from the area and upon palpitation I could feel a small bump. I guess this was probably the beginning of the fistula. I was referred to a gynecologist who said he would be unable to repair it because my entire rectum was removed and there’s no tissue for a rectal flap. I guess that’s the main issue the rectal surgeon in Dallas had. He tried to sew up the fistula and that did not work. I have no problem with traveling to the Mayo Clinic, but I think we have fabulous physicians in Texas, I just need to find one that has experience with my particular issue. I would not be against using mesh to seal the fistula, although no one uses mesh anymore, except with hernia repair in the abdomen area. I guess I’m just searching for a surgeon who’s had experience with this kind of issue.
@lhstephenson when I had my fistula repair in the 1990s, it was done at Mayo with both a colorectal and gynecological surgeon attending. It worked until I had my first bout of pouchitis.
There was discussion about using a muscle in my leg to put between the vagina and j-pouch if the initial repair didn't work, but I never explored that because with chronic inflammation, it wasn't likely to last.
I have no idea if this is still a technique that is used, or what the technical name of the procedure is.
Anyway, here is the direct link to Mayo, I would suggest, if you decide that something you want to explore, that you go to Mayo Rochester, they are the biggest.
https://mayocl.in/1mtmR63
After reading for years the issues with these surgeries and surgery upon surgery not working with risk I’m not so sure I want to try options myself. It’s exhausting to live with surgeries gone bad. Personally I will consider a permanent ileostomy since it sounds much easier per the comments above. I can’t be exhausted with the years left
Living like this.
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1 Reaction@frh a permanent ileostomy would not have been my first choice, I have not regretted that it is what I decided to do. After 15 years of dealing with chronic pouchitis, fistulas, abscesses, and just not feeling good, it was a relief to leave that behind. The last 20+ years with the ileostomy have seen me in much better health.