Has anyone had personal experience with rectovaginal fistula repair?

Posted by blinken @blinken, Dec 19, 2020

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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@trishanna

My lovely fistula (hole in my vagina) is getting worse. I, too, recommend Mayo and requested a second opinion, and was refused. I am with you in spirit and shall follow even though I can't help. One cannot imagine oily diarrhea gushing out of one's vagina. Worse experience of my life and I am 82. Lack of knowledge out here in monstrous! Recommend a colorectal surgeon.

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I too have a vaginal fistula and after 3 surgeries which all have failed, I do not know where to go. The head of Urology at UTSW suggest I see one of his colleagues who can do the surgery robotically. I believe that the procedure is not the problem. The problem is the materials used to try and close up the fistula. Im 72 and my whole life is turned upside down. Both doctors that performed the surgery do not know what went wrong and would do nothing different. So where do I go from here?

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@cnh

I too have a vaginal fistula and after 3 surgeries which all have failed, I do not know where to go. The head of Urology at UTSW suggest I see one of his colleagues who can do the surgery robotically. I believe that the procedure is not the problem. The problem is the materials used to try and close up the fistula. Im 72 and my whole life is turned upside down. Both doctors that performed the surgery do not know what went wrong and would do nothing different. So where do I go from here?

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Welcome, @cnh. It sounds like having a consult with the surgeon might be a good next step.

I’m hoping that @trishanna may have some thoughts for you as well. Trishanna, how are you doing?

CNH, have you and your doctors talked about alternatives that could be used to close up the fistula and if that indeed is the issue?

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That is the issue. After about 10-14 days with the catheter in and after the surgery, the hole opens up again. I woke up with a big wet spot and some blood on the 14 day with the catheter in. My surgery at UTSW suggest going with a female urologist at UTSW that can do the surgery robotically. I am also going to speak with my urogynocologist when she receives the reports from UTSW. Dr. Lemack and Dr. Hassell seemed to have done the same procedures with no success. One use 3 layers and Dr. Hassell only used 1. They both checked the bladder after the surgery while I was under and said it was not leaking. Seems like Urologists should do better since its just closing up a hole.

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Hello,
I have been here many times re my CKD3 kidney disease. This question is for a good friend of mine who has many physical conditions but this one is not one of them. About a year ago my friend had an extreme pain starting from her vagina and all the way up to her mouth making her want to vomit. Since this first one she just had fistula surgery which was quite serious. The other day the same pain started (she was in a store at the time) and this one was more painful and she actually had to vomit in the store. She has told doctors about this but they don't seem to take it seriously. Has anyone had this happen to them and did they get a diagnosis for this?? Thanks in advance. Nancy

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Anybody know of a specialist in surgery for rectovaginal fistula repair in or around Nebraska? I first had 2 different ultra sounds, I had to go back for the second one because they weren't sure about the results. They talked amongst themselves and one said "Do you know how rare this is?" Then they set up an MRI with and without contrast dye on Sept. 27th where they found 2 fistulas. I don't think rectovaginal fistulas are rare-maybe one is a colovesical fistula but what do I know? But I won't even BEGIN to know until mid December when I will have my first consult with a general colon and rectal surgeon that works in 2 hospitals in my town. And he probably will be able to repair the 2 fistulas just fine. The problem is he seems to be too busy. No telling what could happen between then and now. I'm on my 3rd round of antibiotics for UTI already...Anyone know of anyone?

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@nscappa

Hello,
I have been here many times re my CKD3 kidney disease. This question is for a good friend of mine who has many physical conditions but this one is not one of them. About a year ago my friend had an extreme pain starting from her vagina and all the way up to her mouth making her want to vomit. Since this first one she just had fistula surgery which was quite serious. The other day the same pain started (she was in a store at the time) and this one was more painful and she actually had to vomit in the store. She has told doctors about this but they don't seem to take it seriously. Has anyone had this happen to them and did they get a diagnosis for this?? Thanks in advance. Nancy

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Hi @nscappa, this certainly sounds unusual, but terribly uncomfortable for your friend. Thank you for reaching to try and find some clues for her. Severe pain can induce vomitting.

Am I understanding correctly that the pain occurred before she had fistula surgery and since?

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@colleenyoung

Hi @nscappa, this certainly sounds unusual, but terribly uncomfortable for your friend. Thank you for reaching to try and find some clues for her. Severe pain can induce vomitting.

Am I understanding correctly that the pain occurred before she had fistula surgery and since?

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Hi Colleen,

It happened about a year or so before her surgery. It sounds so weird but the last time she was in a store and suddenly that horrible pain started again (from the vagina up to her throat) and she had to vomit. She did call her surgeon and was told that it had nothing to do with the surgery. It's a mystery that should be solved. Thank you for taking the time to take a look at my question. : )

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@bjbrocks

Anybody know of a specialist in surgery for rectovaginal fistula repair in or around Nebraska? I first had 2 different ultra sounds, I had to go back for the second one because they weren't sure about the results. They talked amongst themselves and one said "Do you know how rare this is?" Then they set up an MRI with and without contrast dye on Sept. 27th where they found 2 fistulas. I don't think rectovaginal fistulas are rare-maybe one is a colovesical fistula but what do I know? But I won't even BEGIN to know until mid December when I will have my first consult with a general colon and rectal surgeon that works in 2 hospitals in my town. And he probably will be able to repair the 2 fistulas just fine. The problem is he seems to be too busy. No telling what could happen between then and now. I'm on my 3rd round of antibiotics for UTI already...Anyone know of anyone?

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@bjbrocks, I don't know of any specialists in Nebraska specifically. Waiting until December is hard. Have you considered an appointment at Mayo Clinic?

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@colleenyoung

@bjbrocks, I don't know of any specialists in Nebraska specifically. Waiting until December is hard. Have you considered an appointment at Mayo Clinic?

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I did think about trying to get an appointment at Mayo, which is why I joined the group. They have bumped my appointment up for next week, so now I give a terrified tiny little "yay?" Thank you for replying.

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@bjbrocks

I did think about trying to get an appointment at Mayo, which is why I joined the group. They have bumped my appointment up for next week, so now I give a terrified tiny little "yay?" Thank you for replying.

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Oh, I understand the apprehension, but this is good news that the appointment is sooner.

Here’s some information from Mayo Clinic about rectovaginal fistulas to help you prepare for your appointment. Be sure to scroll to the bottom to see a helpful list of questions to ask your doctor.
https://www.mayoclinic.org/diseases-conditions/rectovaginal-fistula/diagnosis-treatment/drc-20377113

If you don’t have confidence in the depth of experience with your local team, you can consider requesting a second opinion from Mayo after next week’s appointment.

You got this!

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