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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Thank you so much for this information. It will definitely help. I wonder how I could ask about his experience with these types of fistulas without offending him?

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I was diagnosed with ileovaginal fistula in 2018. This is a connection between the small intestine and the vagina. I had repair done by colo- rectal surgeon resulting in an ileostomy and diagnosis of Crohn's Disease. You should be seeing a Gastroenterologist!

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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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Hello,
I am writing for my friend who had fistula surgery (it was a severe case) about 8 months ago. She is following all of the doctor's instructions re bowel movements. Yesterday she told me that it has been 6 days since she had a bowel movement. She told me that the feces comes out like coffee grinds. I have looked on line re this subject and there can be some drastic reasons. Possibility of more surgery or wearing a bag for a period of time. I am very concerned for her and she has called her doctor's office and she keeps being told not to worry but I think it's time to worry. Any suggestions please. Thanks in advance.
Nancy S.

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@nscappa

Hello,
I am writing for my friend who had fistula surgery (it was a severe case) about 8 months ago. She is following all of the doctor's instructions re bowel movements. Yesterday she told me that it has been 6 days since she had a bowel movement. She told me that the feces comes out like coffee grinds. I have looked on line re this subject and there can be some drastic reasons. Possibility of more surgery or wearing a bag for a period of time. I am very concerned for her and she has called her doctor's office and she keeps being told not to worry but I think it's time to worry. Any suggestions please. Thanks in advance.
Nancy S.

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@nscappa Yes, she has to be her own advocate! If she is getting no relief from constipation, and no relief as to good answers to her concern, perhaps she can look at an urgent care this weekend? Can she call her doctor's office and speak to a nurse advisor, or the on-call doctor?

I hope she has been able to document the phone calls, and any efforts she has gone through to remedy her situation. It seems to me [as someone with no bowel fistula experience] that retention of feces could cause a bigger issue. If I was in those same shoes, I would keep "going up the chain of command" until I get some answers.
Ginger

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@nscappa

Hello,
I am writing for my friend who had fistula surgery (it was a severe case) about 8 months ago. She is following all of the doctor's instructions re bowel movements. Yesterday she told me that it has been 6 days since she had a bowel movement. She told me that the feces comes out like coffee grinds. I have looked on line re this subject and there can be some drastic reasons. Possibility of more surgery or wearing a bag for a period of time. I am very concerned for her and she has called her doctor's office and she keeps being told not to worry but I think it's time to worry. Any suggestions please. Thanks in advance.
Nancy S.

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Thank you Ginger for your input. My friend has so many issues going on right and all of them are causing her so much stress. I don't think Alma would keep track of phone calls. Today I did check on her and she had a somewhat normal movement. I know she is worried since it's been 8 months since her surgery. She is going to see a gastroenterologist in 2 weeks and she is hoping that maybe she will have some answers for her. Her surgery was very extensive and I feel for her. I will speak with her tomorrow and let her know what you gold me. Thank you once for your concern and quick response. : )

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@nscappa

Thank you Ginger for your input. My friend has so many issues going on right and all of them are causing her so much stress. I don't think Alma would keep track of phone calls. Today I did check on her and she had a somewhat normal movement. I know she is worried since it's been 8 months since her surgery. She is going to see a gastroenterologist in 2 weeks and she is hoping that maybe she will have some answers for her. Her surgery was very extensive and I feel for her. I will speak with her tomorrow and let her know what you gold me. Thank you once for your concern and quick response. : )

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@nscappa Suggest to her she call her gastro's office, and ask to be placed on a cancellation list, that may get her in earlier than 2 weeks! Perhaps if she will let them know her issues, they will find space for her?
Ginger

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@gingerw

@nscappa Suggest to her she call her gastro's office, and ask to be placed on a cancellation list, that may get her in earlier than 2 weeks! Perhaps if she will let them know her issues, they will find space for her?
Ginger

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Thank you Ginger. The only issue with being on a cancellation list is that Alma's insurance wants a two notice for doctors' appointments. If the cancellation gave her those two days it would work. She does ask to be put on cancellation lists but it gets tricky re her ride. Thanks again! : )

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@nscappa

Thank you Ginger for your input. My friend has so many issues going on right and all of them are causing her so much stress. I don't think Alma would keep track of phone calls. Today I did check on her and she had a somewhat normal movement. I know she is worried since it's been 8 months since her surgery. She is going to see a gastroenterologist in 2 weeks and she is hoping that maybe she will have some answers for her. Her surgery was very extensive and I feel for her. I will speak with her tomorrow and let her know what you gold me. Thank you once for your concern and quick response. : )

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@nscappa, I moved your posts asking questions on behalf of your friend's complications after fistula surgery to this existing discussion so you can connect with other members who have had the same surgery. See:
- Has anyone had personal experience with rectovaginal fistula repair?
https://connect.mayoclinic.org/discussion/has-anyone-had-personal-experience-with-recto-vaginal-fistula-repair/

Like you, I hope the gastroenterologist will have some answers for her. You might encourage her to keep a journal over the next 2 weeks of the symptoms she experiences and her bowel movements, like how often, consistency, etc.

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Hi Colleen,

Thank you for moving my info, I appreciate that and thank you for your reply. I will speak with Alma today. : )

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I hope you had a positive outcome with the new surgeon. I am so sorry for what you went through! My daughter was only 20 when she went to have sex reassignment surgery, m to f, the doctor gave her a huge fistula, told her she had to have a colostomy which she did for 13 months. Meanwhile, she had eight surgeries to try to close a fistula and still keep some vaginal retention. After the 8th surgery we gave up as a surgeries were extremely painful, decided to get rid of colostomy and just stitch the vagina shut. At least she now has normal bowel function but unfortunately because of the failed surgery to create a vagina she feels very depressed and hopeless. These surgeons should be more careful, one wonders how many lives they have ruined because of their carelessness!

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