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?

Liked by ess77

Hello @blinken and welcome to Mayo Clinic Connect. As you can see, your post was moved to the Women's Health Group where you might meet more women, like yourself, who have had this type of problem.

I'm really sorry to hear that you find yourself in such a difficult place. It sounds as if you have had some problematic surgeries that not only did not help you but in fact made the situation worse than it was. This must be very uncomfortable physically and also very discouraging emotionally.

Have you considered going to a multi-disciplinary medical center like a university medical school or a facility like Mayo Clinic? If I were in your situation, I would try to get to the best facility that I could for another opinion. These multi-disciplinary centers often have more research at their disposal and more expertise in dealing with hard-to-solve problems.

I would like to invite @astaingegerdm, @gardeningjunkie, and @baxtersmom to this discussion to see if they can offer some support and encouragement.

I can understand that you must feel discouraged, but nonetheless, I would encourage you to seek out the best care possible. It is important that each patient be their own advocate. Sometimes, persistence and continually seeking other avenues of help is the only resource patients have.

Will you consider an appointment at another medical facility?

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Hello Teresa, thank you for addressing my post. We are a couple of hours from Madison's UW hospital but I would consider seeing someone there even though winter travel may cause some problems. I think, being in our late 70's, travel to Marshfield would be extremely difficult, unfortunately. But if someone could direct me to a particular clinic/specialist at UW Hospital-Madison, I would definitely seek an appointment there. I just have no idea how to go about finding the right place there for me to go. Thanks again for your consideration.

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@blinken

Hello Teresa, thank you for addressing my post. We are a couple of hours from Madison's UW hospital but I would consider seeing someone there even though winter travel may cause some problems. I think, being in our late 70's, travel to Marshfield would be extremely difficult, unfortunately. But if someone could direct me to a particular clinic/specialist at UW Hospital-Madison, I would definitely seek an appointment there. I just have no idea how to go about finding the right place there for me to go. Thanks again for your consideration.

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@blinken, you may also wish to inquire about getting an appointment at Mayo Clinic in Rochester MN or Mayo Clinic Health System in La Crosse WI. Here's more information about how to request an appointment as well as links to frequently asked questions and more http://mayocl.in/1mtmR63

Rectovaginal fistula is treated by experts in the department of Obstetrics and Gynecology. See a list of doctors here: https://www.mayoclinic.org/diseases-conditions/rectovaginal-fistula/doctors-departments/ddc-20377114

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Thank you for your suggestions, Colleen. I desperately wish we were closer to a Mayo facility. At our age and condition, a trip to either LaCrosse or Rochester is beyond our capability. I will have to continue my search with a closer destination. Milwaukee area would be difficult for us but we could do it. Green Bay would be easier for us, Appleton, Neenah, Oshkosh, Fond du Lac all familiar and doable for us. I will continue my search. I see the recommendations for Urogynecologists and will seek out someone closer to us. As it is, I currently have a procedure scheduled for a surgeon with specialization in colon/rectal issues.

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@blinken

Thank you for your suggestions, Colleen. I desperately wish we were closer to a Mayo facility. At our age and condition, a trip to either LaCrosse or Rochester is beyond our capability. I will have to continue my search with a closer destination. Milwaukee area would be difficult for us but we could do it. Green Bay would be easier for us, Appleton, Neenah, Oshkosh, Fond du Lac all familiar and doable for us. I will continue my search. I see the recommendations for Urogynecologists and will seek out someone closer to us. As it is, I currently have a procedure scheduled for a surgeon with specialization in colon/rectal issues.

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Hello @blinken,

I'm glad to hear that you have a procedure scheduled with a specialist in colon/rectal issues. I hope that helps. When will this procedure be done?

Liked by ess77

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I'm scheduled for January 6 for Exam under Anesthesia with possible rectal flap or possible SETON placement.

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@blinken

I'm scheduled for January 6 for Exam under Anesthesia with possible rectal flap or possible SETON placement.

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@blinken Here is a Connect discussion about fistulas. https://connect.mayoclinic.org/discussion/anal-fistula-procedures/

Also, here is a Mayo Clinic video that gives information about the SETON procedure.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/the-role-of-setons/

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Thank you. I have read a few things but the more I can learn, the better equipped I will be to deal with things afterward.

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@blinken

Thank you. I have read a few things but the more I can learn, the better equipped I will be to deal with things afterward.

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You are right, @blinken. The more informed a patient is, the better they can advocate for themselves. Wishing you all the best!

Will you post after your procedure and let me know how you are doing?

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I will, thanks again.

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