1. < Ostomy

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.

nscappa | @nscappa | Nov 7, 2023
In reply to @dsjohnston53 "I hope you had a positive outcome with the new surgeon. I am so sorry for..." + (show)
@dsjohnston53

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!

Jump to this post

Re this comment I think I put it in the wrong place. Not sure what to do at this point, sorry for the error.

Hello,
My info was for a friend but that doesn't matter. I'm not sure about the name of her surgery but I do know but her bowel movements were going though her vagina. She had many infections that had to be removed and the surgery was quite extensive. I can't imagine how terrible it must have been for your daughter and it should never have happened if the surgery were done expertly which I hope it was. She must have been devastated and I truly don't know how she continued but they gave her no choice. My friend's doctor mentioned a colostomy bag for a while if things didn't work the way they were supposed to. We put all our trust in our doctors, especially surgeons. She is still worrying about it and she is going to see a gastroenterologist in a couple of weeks. My great nephew is transitioning to female but I don't know if he will get surgery or not and I would never ask because it's such a personal matter. How is your daughter doing now? I do feel deeply sorry for her. Is she seeing a therapist which I think would be a good idea because her depression and hopelessness are so intense. I know she doesn't know me but give her my best and I pray that she gets the help that she needs. All my best, Nancy : )
t

REPLY
nscappa | @nscappa | Nov 7, 2023

Hello,
My info was for a friend but that doesn't matter. I'm not sure about the name of her surgery but I do know but her bowel movements were going though her vagina. She had many infections that had to be removed and the surgery was quite extensive. I can't imagine how terrible it must have been for your daughter and it should never have happened if the surgery were done expertly which I hope it was. She must have been devastated and I truly don't know how she continued but they gave her no choice. My friend's doctor mentioned a colostomy bag for a while if things didn't work the way they were supposed to. We put all our trust in our doctors, especially surgeons. She is still worrying about it and she is going to see a gastroenterologist in a couple of weeks. My great nephew is transitioning to female but I don't know if he will get surgery or not and I would never ask because it's such a personal matter. How is your daughter doing now? I do feel deeply sorry for her. Is she seeing a therapist which I think would be a good idea because her depression and hopelessness are so intense. I know she doesn't know me but give her my best and I pray that she gets the help that she needs. All my best, Nancy : )

REPLY
verol65 | @verol65 | Dec 8, 2023
In reply to @blinken "I will, thanks again." + (show)
@blinken

I will, thanks again.

Jump to this post

Hi, @blinken! I've just read this thread. This was already three years ago. Did you get the flap? How did that work out for you?

REPLY
2 replies
verol65 | @verol65 | Dec 8, 2023
In reply to @bjbrocks "Anybody know of a specialist in surgery for rectovaginal fistula repair in or around Nebraska? I..." + (show)
@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?

Jump to this post

How were your fistulas resolved, @bjbrocks ?
I have a rare rectovaginal fistula due to radiotherapy so the tissue is burned and therefore a flap, even if possible, is not considered a viable solution in the long term because of the high risk of developing a new fistula.

REPLY
1 reply
verol65 | @verol65 | Dec 8, 2023
In reply to @verol65 "Hi, @blinken! I've just read this thread. This was already three years ago. Did you get..." + (show)
@verol65

Hi, @blinken! I've just read this thread. This was already three years ago. Did you get the flap? How did that work out for you?

Jump to this post

I had not read the whole thread as I thought. I now understand you did not get the flap. Sorry.

REPLY
blinken | @blinken | Dec 8, 2023
In reply to @verol65 "Hi, @blinken! I've just read this thread. This was already three years ago. Did you get..." + (show)
@verol65

Hi, @blinken! I've just read this thread. This was already three years ago. Did you get the flap? How did that work out for you?

Jump to this post

Hello, verol65, yes, this is an old post and to pick up sort of where this left off, that surgeon was not able to find the fistula. Also, by my second visit with him, I no longer passed stool vaginally. He wanted to refer me to a facility which would perform some sort of test to see if I would be able to pass stool rectally when and IF the colostomy were reversed and fistula is repaired. He also admitted that he didn't really know what to do with me and would be consulting some experts (I thought that's what HE was). When I asked who that would be, he said "the people who taught me". This left me with an unsettled feeling so I restarted my search and found a well-credentialed colorectal surgeon in Madison, WI. He was located at a Colorectal clinic and did his surgeries at UW Hospital. Students accompanied him into the exam room. His digital exam assured him that I would be able to pass stool myself but he also was unable to detect the fistula. So he also ordered an exam under anesthesia, which did NOT prove a fistula still existed. He ordered barium studies which also did not show an open fistula. He studied the scans and concluded that he would do the reversal of the colostomy and did not believe the fistula was still open. He did also say though that if indeed it had healed, it could reoccur.

My ostomy was reversed and I am passing stool daily, rectally. I am dedicated to eating foods that are high in fiber, try to drink plenty of water, exercise daily and keep a regular schedule. In other words, I have to work at it and so far it has been successful. It can be a chore and I don't often leave the house before 10 a.m. because things can take awhile but every day I thank my lucky stars that I don't have the colostomy or an open fistula! And I was SO fortunate to have found the doctor who was not afraid of my bungled up system. He assured me he had done a lot of reversals and was confident of a good outcome for me. It pays to keep looking to find a doctor who truly excels at what he does!

REPLY
1 reply
bjbrocks | @bjbrocks | Dec 9, 2023
In reply to @verol65 "How were your fistulas resolved, @bjbrocks ? I have a rare rectovaginal fistula due to radiotherapy..." + (show)
@verol65

How were your fistulas resolved, @bjbrocks ?
I have a rare rectovaginal fistula due to radiotherapy so the tissue is burned and therefore a flap, even if possible, is not considered a viable solution in the long term because of the high risk of developing a new fistula.

Jump to this post

Today is my first day home from surgery. I had a complete hysterectomy with omental flap and sigmoid colon resection. My fistula was between my uterus and colon and caused by diverticulitis.

REPLY
1 reply
verol65 | @verol65 | Dec 9, 2023
In reply to @bjbrocks "Today is my first day home from surgery. I had a complete hysterectomy with omental flap..." + (show)
@bjbrocks

Today is my first day home from surgery. I had a complete hysterectomy with omental flap and sigmoid colon resection. My fistula was between my uterus and colon and caused by diverticulitis.

Jump to this post

@bjbrocks Wishing you the best in your recovery!

REPLY
verol65 | @verol65 | Dec 9, 2023
In reply to @blinken "Hello, verol65, yes, this is an old post and to pick up sort of where this..." + (show)
@blinken

Hello, verol65, yes, this is an old post and to pick up sort of where this left off, that surgeon was not able to find the fistula. Also, by my second visit with him, I no longer passed stool vaginally. He wanted to refer me to a facility which would perform some sort of test to see if I would be able to pass stool rectally when and IF the colostomy were reversed and fistula is repaired. He also admitted that he didn't really know what to do with me and would be consulting some experts (I thought that's what HE was). When I asked who that would be, he said "the people who taught me". This left me with an unsettled feeling so I restarted my search and found a well-credentialed colorectal surgeon in Madison, WI. He was located at a Colorectal clinic and did his surgeries at UW Hospital. Students accompanied him into the exam room. His digital exam assured him that I would be able to pass stool myself but he also was unable to detect the fistula. So he also ordered an exam under anesthesia, which did NOT prove a fistula still existed. He ordered barium studies which also did not show an open fistula. He studied the scans and concluded that he would do the reversal of the colostomy and did not believe the fistula was still open. He did also say though that if indeed it had healed, it could reoccur.

My ostomy was reversed and I am passing stool daily, rectally. I am dedicated to eating foods that are high in fiber, try to drink plenty of water, exercise daily and keep a regular schedule. In other words, I have to work at it and so far it has been successful. It can be a chore and I don't often leave the house before 10 a.m. because things can take awhile but every day I thank my lucky stars that I don't have the colostomy or an open fistula! And I was SO fortunate to have found the doctor who was not afraid of my bungled up system. He assured me he had done a lot of reversals and was confident of a good outcome for me. It pays to keep looking to find a doctor who truly excels at what he does!

Jump to this post

@blinken Thank you for taking the time to answer! I'm glad you found a doctor who attended you well and are now doing better. I can imagine that doing everything in an organized and disciplined way takes a lot of effort, but it pays off. You're giving me hope.

REPLY
View MoreView Less
Please sign in or register to post a reply.