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.

@hopeful33250

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?

Jump to this post

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...

REPLY
@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...

Jump to this post

I'm so glad that you provided an update, @blinken. I am sorry to hear that the procedure did not provide the answers you needed, though. You must feel frustrated.

I hope that your trip to UW in Madison goes well and that you are able to get some help there. What is the date of your appointment there?

Please provide an update as you are able. I'm wishing you all the best!

REPLY
@hopeful33250

I'm so glad that you provided an update, @blinken. I am sorry to hear that the procedure did not provide the answers you needed, though. You must feel frustrated.

I hope that your trip to UW in Madison goes well and that you are able to get some help there. What is the date of your appointment there?

Please provide an update as you are able. I'm wishing you all the best!

Jump to this post

Hi Teresa, I was seen at UW Madison by a rectal-colon surgeon yesterday. His manual exam was thorough and he did not see a fistula. He discussed the possibility that it has healed over or that some extraneous tissue has covered it. He had me do some squeeze and releases during his exam and he feels that I should be able to control bowel movements if the ostomy is reversed, particularly since I am able to tell when I need to have a bowel movement. First, however, we need to determine the presence or healing of the fistula. He will also do an Exam under Anesthesia to try to locate it as well as to further loosen the rectal stricture which resulted from the surgery in August for rectal prolapse repair. The surgeon that I saw in January made two incisions into the stricture which reduced the tightness somewhat but it seems to have re-tightened somewhat.

My UW surgeon's goal (mine too!) is to reverse the ostomy but that will be deferred until after the EUA procedure in a couple of weeks to
locate the fistula or evidence that it has healed over.

Thanks for your concern. I have great confidence in this doctor and I know he will do his best for me.

REPLY
@blinken

Hi Teresa, I was seen at UW Madison by a rectal-colon surgeon yesterday. His manual exam was thorough and he did not see a fistula. He discussed the possibility that it has healed over or that some extraneous tissue has covered it. He had me do some squeeze and releases during his exam and he feels that I should be able to control bowel movements if the ostomy is reversed, particularly since I am able to tell when I need to have a bowel movement. First, however, we need to determine the presence or healing of the fistula. He will also do an Exam under Anesthesia to try to locate it as well as to further loosen the rectal stricture which resulted from the surgery in August for rectal prolapse repair. The surgeon that I saw in January made two incisions into the stricture which reduced the tightness somewhat but it seems to have re-tightened somewhat.

My UW surgeon's goal (mine too!) is to reverse the ostomy but that will be deferred until after the EUA procedure in a couple of weeks to
locate the fistula or evidence that it has healed over.

Thanks for your concern. I have great confidence in this doctor and I know he will do his best for me.

Jump to this post

@blinken
I'm so glad for the update. It seems that this was a worthwhile appointment! You sound very pleased with this doctor and I'm happy that you had a good experience. It is important for us all to feel confident with our medical team and I sense that you do.

I'm looking forward to hearing from you again. Will you post an update after your EUA procedure?

REPLY
@hopeful33250

I'm so glad that you provided an update, @blinken. I am sorry to hear that the procedure did not provide the answers you needed, though. You must feel frustrated.

I hope that your trip to UW in Madison goes well and that you are able to get some help there. What is the date of your appointment there?

Please provide an update as you are able. I'm wishing you all the best!

Jump to this post

Hi Teresa. I met with a Colorectal specialist at UW Hospital in Madison, WI in February. He did a digital rectal exam and asked me to squeeze in order to determine whether I might have control of stool if he were to reverse the colostomy. He said he felt that I would be able to do so but suggested I do regular squeeze exercises. He said he also would like to do a EUA (exam under anesthesia) since his in-office exam didn't reveal a fistula. We did the EUA which also did not reveal the fistula so then scheduled a Barium Enema. The scans were clear and no evidence of fistula was seen. I am now scheduled in mid-June for takedown of the colostomy. I am both excited and anxious, worrying that #1 the fistula is actually there and will raise its ugly head after the surgery, necessitating yet another, and permanent ostomy or #2 that I will be spending most of my life in the bathroom, not being able to have a normal, once daily bowel movement and perhaps not gain sufficient control. And there is always the worry at my age of having another major surgery. I keep wondering if I am placing myself at undue risk by going ahead with this, even though this surgeon has done many colostomy take-downs and is confident of a positive outcome for me. However, he cautions me that a healed fistula may recur since that area, though healed, is weakened from its previous trauma. If that happens, a colostomy is again in my future. I am certain that I have found the right doctor for this procedure and I also understand that it will surely take some months for my colon to find its routine and become somewhat reliable if I take care to eat properly, drink plenty of water and continue withy my daily exercise routine. Fingers crossed! Thanks for listening.

REPLY
@blinken

Hi Teresa. I met with a Colorectal specialist at UW Hospital in Madison, WI in February. He did a digital rectal exam and asked me to squeeze in order to determine whether I might have control of stool if he were to reverse the colostomy. He said he felt that I would be able to do so but suggested I do regular squeeze exercises. He said he also would like to do a EUA (exam under anesthesia) since his in-office exam didn't reveal a fistula. We did the EUA which also did not reveal the fistula so then scheduled a Barium Enema. The scans were clear and no evidence of fistula was seen. I am now scheduled in mid-June for takedown of the colostomy. I am both excited and anxious, worrying that #1 the fistula is actually there and will raise its ugly head after the surgery, necessitating yet another, and permanent ostomy or #2 that I will be spending most of my life in the bathroom, not being able to have a normal, once daily bowel movement and perhaps not gain sufficient control. And there is always the worry at my age of having another major surgery. I keep wondering if I am placing myself at undue risk by going ahead with this, even though this surgeon has done many colostomy take-downs and is confident of a positive outcome for me. However, he cautions me that a healed fistula may recur since that area, though healed, is weakened from its previous trauma. If that happens, a colostomy is again in my future. I am certain that I have found the right doctor for this procedure and I also understand that it will surely take some months for my colon to find its routine and become somewhat reliable if I take care to eat properly, drink plenty of water and continue withy my daily exercise routine. Fingers crossed! Thanks for listening.

Jump to this post

Hello @blinken

I can understand your concern. As we age it becomes difficult to face major surgeries. I suppose you have to weigh the benefit versus the risk.

Do you have any major health concerns as you face surgery such as this? I'm thinking of heart problems, neurological problems, kidney function, etc.

I realize that you have been very proactive in seeking the best possible doctor for this problem. If he feels like it is a good option for you do you feel you can take this risk?

These are all tough questions to consider and I know you will not make any decision lightly. I hope you will post again and keep in touch. Sometimes it is very valuable to write about these decisions. It often clarifies your feelings.

REPLY
@hopeful33250

Hello @blinken

I can understand your concern. As we age it becomes difficult to face major surgeries. I suppose you have to weigh the benefit versus the risk.

Do you have any major health concerns as you face surgery such as this? I'm thinking of heart problems, neurological problems, kidney function, etc.

I realize that you have been very proactive in seeking the best possible doctor for this problem. If he feels like it is a good option for you do you feel you can take this risk?

These are all tough questions to consider and I know you will not make any decision lightly. I hope you will post again and keep in touch. Sometimes it is very valuable to write about these decisions. It often clarifies your feelings.

Jump to this post

Yes, sharing my progress or lack thereof on this site is a way of not only venting but examining my thoughts as well as comments from others such as yourself at least puts the situation in some sort of order. I feel that these past months I have been in limbo trying to determine if I can continue to live with my current state and I suppose I could but being in my late 70's, I assume it may become more difficult to deal with as I get older. In general, I am fairly healthy, BP controlled with a few meds, not diabetic, no heart dx., My pre-op physical shows me to be fairly healthy for my age.

REPLY
@blinken

Yes, sharing my progress or lack thereof on this site is a way of not only venting but examining my thoughts as well as comments from others such as yourself at least puts the situation in some sort of order. I feel that these past months I have been in limbo trying to determine if I can continue to live with my current state and I suppose I could but being in my late 70's, I assume it may become more difficult to deal with as I get older. In general, I am fairly healthy, BP controlled with a few meds, not diabetic, no heart dx., My pre-op physical shows me to be fairly healthy for my age.

Jump to this post

Hello @blinken

It sounds as if you are considering all of the factors necessary in order to ensure a reasonably successful surgery. I'm facing some elective surgery myself (at age 73). This elective surgery will improve the quality of my life so I have decided to go forward with it. If I wait another few years my ability to tolerate surgery might be lessened and I might not be able to go forward.

Keep posting your thoughts as you work through this decision. I'm glad that Connect is giving you a place to do this.

REPLY
@hopeful33250

Hello @blinken

It sounds as if you are considering all of the factors necessary in order to ensure a reasonably successful surgery. I'm facing some elective surgery myself (at age 73). This elective surgery will improve the quality of my life so I have decided to go forward with it. If I wait another few years my ability to tolerate surgery might be lessened and I might not be able to go forward.

Keep posting your thoughts as you work through this decision. I'm glad that Connect is giving you a place to do this.

Jump to this post

Yes, I'm grateful for all of us who have discovered and use Connect. And being 78, I also am factoring in my age and quality of life. I wish there were more on the + side than the - or on the maybe side......

REPLY
@hopeful33250

I'm so glad that you provided an update, @blinken. I am sorry to hear that the procedure did not provide the answers you needed, though. You must feel frustrated.

I hope that your trip to UW in Madison goes well and that you are able to get some help there. What is the date of your appointment there?

Please provide an update as you are able. I'm wishing you all the best!

Jump to this post

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.

REPLY
Please sign in or register to post a reply.