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?

Interested in more discussions like this? Go to the Ostomy Support Group.

@blinken

Hi Teresa-it has been awhile since my last update and have good news to report! I transferred my care to a colorectal specialist in Madison,Wi. After a manual exam, and a rectal exam under anesthesia and Barium enema, he too was unable to find a fistula. We then proceeded to schedule the takedown of my colostomy! The procedure went well, I spent 3 days in the hospital and am home again with NO colostomy!!! This procedure was done on 6/14 and I had my post-op visit 2 days ago. My incision is healing well, and I am now able to transition the low fiber diet gradually to a more varied food list and hopefully can return to a somewhat reliable bowel movement schedule! In all, I am so happy to have finally come to this point without the colostomy! I had feared this would never happen and I'm so grateful to have found a surgeon who was willing to take me on. For all those people out there, this all began nearly a year ago so it has been a long, long ordeal, and there were many times when I felt hopeless. But my husband, daughters and friends bolstered me, encouraged me and urged me not to give up. And thanks to Mayo Clinic Connect for giving people like me a place for information, encouragement and suggestions. I have referred several of my friends to this site.

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@blinken It is just great to get your wonderful update. I am so pleased for you that all went well.

Sometimes, it does take a while to find the right doctor in order to get the best answer to a complex health problem. You showed great tenacity and determination in your pursuit of an answer! I'm so glad that you were rewarded with better health.

I know as others read your post that they will be encouraged as well. Wishing you good health in the future. Thanks for referring others to Mayo Connect.

It would be nice to hear from you now and then. Will you post as you are able?

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@hopeful33250

@blinken It is just great to get your wonderful update. I am so pleased for you that all went well.

Sometimes, it does take a while to find the right doctor in order to get the best answer to a complex health problem. You showed great tenacity and determination in your pursuit of an answer! I'm so glad that you were rewarded with better health.

I know as others read your post that they will be encouraged as well. Wishing you good health in the future. Thanks for referring others to Mayo Connect.

It would be nice to hear from you now and then. Will you post as you are able?

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Yes, I will. Thanks again!

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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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I had surgery to repair a rectalvaginal fistula. I never knew I had a problem until diarrhea started spewing out of my vagina. The cause was diverticulitis that had blown a hole in my colon; however, I didn’t know until after a very long surgery. They removed 1/3 of my colon which resulted in colostomy. I went septic the next day, my heart had to be restarted and was in ICU a week. Unbeknownst to me at the time, the surgeons also severed my left utter. After I healed, all I wanted was a reversal. Instead of a reversal, 3 months later I was diagnosed with breast cancer and had a bilateral mastectomy followed by chemo.

I went to Mayo in Jacksonville and my left kidney was full of waste. Due to my utter being severed, it couldn’t drain to my bladder. They ordered a CT scan and my left kidney was so full, not contrast could go in. So I’ve got a pouch in the front and great doctors drilled a hole in my back to my left kidney and I have a bag in the back to drain the urine from my kidney.

So here’s where I am. In 2 1/2 weeks I have a team of excellent surgeons at Mayo who are going to fix my huge hernia that encompasses my entire abdominal wall, hopefully successfully reconnect my colon and remove my left kidney as I went into renal failure due to the utter being severed. I can not wait to be free from pouches and tubes.

Oh and by the way, the fistula repair was a success. He did it robotically.

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@mahoney

I had surgery to repair a rectalvaginal fistula. I never knew I had a problem until diarrhea started spewing out of my vagina. The cause was diverticulitis that had blown a hole in my colon; however, I didn’t know until after a very long surgery. They removed 1/3 of my colon which resulted in colostomy. I went septic the next day, my heart had to be restarted and was in ICU a week. Unbeknownst to me at the time, the surgeons also severed my left utter. After I healed, all I wanted was a reversal. Instead of a reversal, 3 months later I was diagnosed with breast cancer and had a bilateral mastectomy followed by chemo.

I went to Mayo in Jacksonville and my left kidney was full of waste. Due to my utter being severed, it couldn’t drain to my bladder. They ordered a CT scan and my left kidney was so full, not contrast could go in. So I’ve got a pouch in the front and great doctors drilled a hole in my back to my left kidney and I have a bag in the back to drain the urine from my kidney.

So here’s where I am. In 2 1/2 weeks I have a team of excellent surgeons at Mayo who are going to fix my huge hernia that encompasses my entire abdominal wall, hopefully successfully reconnect my colon and remove my left kidney as I went into renal failure due to the utter being severed. I can not wait to be free from pouches and tubes.

Oh and by the way, the fistula repair was a success. He did it robotically.

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mahoney, I'm awed at your matter-of-fact demeanor after all these problems! It makes me feel that mine were a cakewalk in comparison, even though, like you, one system failure led to another and another....
I was happy to learn that your fistula was repaired. No one could find mine after I ceased having fecal output vaginally. Hopefully it will not re-open as I was cautioned it might. It seems like things go on and on forever but it sounds like you're tackling them one by one. I'm hoping not to have to post a "P.S" in the future. While things are not exactly the way they were before all my conditions occurred, I can handle the situation I am left with, which is steady adherence to a high-fiber diet, plenty of water and exercise daily. And a regular bedtime schedule. I'm able to eat most things if I'm careful and I am able to get out and about for a good portion of the day if I want to, as long as I have access to restrooms and don't set out too early. I wish the same for you. Keep up the fight and don't give up!

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Just a quick update. Mayo turned me down. I am now in my sixth month of no answers. In desperation I turned to the State, and after an investigation, I was removed from the care of my original obgyn surgeon and given over to my pcp a nice man but not versed in any of what I read here. I am 82, anorexic-looking, still have my fistula which worsened after they used another product with a CT scan. @blinkin, so happy for your improvements. It's probably too late for me, but hope you will help others as you have helped me. Am left with partial blockage of my small intesten, the vaginal fistula, and who knows what else. I am home with a drip I cannot use, and the State is trying to help. In areas of the country like ours, care is abysmal. Take care, everyone.

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@blinken

Hi Teresa, I'm sorry to say that I am still awaiting treatment for the fistula. The search for the fistula was conducted under anesthesia with blue dye introduced into my rectum and a white sponge into my vagina. There was no discoloration on the sponge so the surgeon was unable to locate the fistula with this method. There was stool in my rectum, however, so that may have obscured the opening. He did make two tiny incisions into the rectal stricture caused by the rectal prolapse surgery in August of last year, to allow stool to pass more easily. It is still pretty tight so have been instructed by him to do tap water enemas 3 times a day in order to loosen the stool. Most times I believe the water squirts out via the fistula and I'm unable to keep the water in. I have increased my fiber by using chewable fiber supplements, eating a prune before bedtime, having Activa Yogurt, old fashioned oatmeal and raisin bran (yes, all three each breakfast) trying to drink 6-8 10 oz. glasses of water daily and eating more bean based dishes and using veggie burger in casseroles and tacos or sloppy joes. Snacks are usually grapes and nuts or apples, etc. I have gained considerable weight with all these carbs and am frustrated with the enemas. You might remember that I also have a "temporary" colostomy that I'm hoping can be reversed but only if we find that I can pass stool totally on my own and be able to control it. Before the surgery in August for the prolapse my stools were not formed so the fact that now I have firm stools confounds me. As to the colostomy, the stool coming into the bag varies, usually it's a mashed potato consistency but sometimes like clay. The surgeon who I transferred my care to and who specializes in colon procedures is unsure how to proceed since the fistula was not found. The next thing he suggests is to do a manometry of the the rectum to see if I can push out an inflated balloon and also if I can keep it from being ejected in order to determine if I can have normal control of my bowel movements. At first, a few weeks after I had the colostomy surgery, when I started having stool that bypassed the colostomy, the stool was soft and easily passed. I don't think the scar tissue had yet formed the stricture. This doctor is not sure how best to proceed with me and we talked about second opinion. He said he would be happy to write a referral somewhere but I don't need one for my insurance and have made an appointment with a Colo-rectal surgeon at UW Madison. I would be willing to travel and transfer my care to him even though it is difficult for us at our age to drive in city traffic. My husband has macular degeneration which makes driving on unfamiliar freeways difficult. The appointment is at the end of March so hopefully we won't have winter weather to deal worry about. Thanks for listening...

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I need results like from your diet, but suspect huge diary! Ha!

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@mahoney

I had surgery to repair a rectalvaginal fistula. I never knew I had a problem until diarrhea started spewing out of my vagina. The cause was diverticulitis that had blown a hole in my colon; however, I didn’t know until after a very long surgery. They removed 1/3 of my colon which resulted in colostomy. I went septic the next day, my heart had to be restarted and was in ICU a week. Unbeknownst to me at the time, the surgeons also severed my left utter. After I healed, all I wanted was a reversal. Instead of a reversal, 3 months later I was diagnosed with breast cancer and had a bilateral mastectomy followed by chemo.

I went to Mayo in Jacksonville and my left kidney was full of waste. Due to my utter being severed, it couldn’t drain to my bladder. They ordered a CT scan and my left kidney was so full, not contrast could go in. So I’ve got a pouch in the front and great doctors drilled a hole in my back to my left kidney and I have a bag in the back to drain the urine from my kidney.

So here’s where I am. In 2 1/2 weeks I have a team of excellent surgeons at Mayo who are going to fix my huge hernia that encompasses my entire abdominal wall, hopefully successfully reconnect my colon and remove my left kidney as I went into renal failure due to the utter being severed. I can not wait to be free from pouches and tubes.

Oh and by the way, the fistula repair was a success. He did it robotically.

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Hope it all works out for you.

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@kenc

Hope it all works out for you.

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Than you very much. I appreciate that 🙂

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@mahoney @blinken. Thanks for your response. I'm so upset that I failed to post correct name.

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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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