Connect
Has anyone had personal experience with rectovaginal fistula repair?
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Ostomy & J-Pouch Support Group.
Connect
@lhstephenson thank you for your suggestion. I haven’t heard of the VSL I will do my research. Funds are limited as I’m on Social Security but maybe the doctor can find a way to get it covered In my medical situation. The Kinsyl prices shut up like a rocket since20 years ago have really got out of hand. I think I even wrote them about it anyway, I’ll try the Walmart brand, but I have tried some on Amazon like Yerba etc with definite similar results. It’s been touch and go trial and error for so many years. I just wish something actually worked in its entirety, but I don’t think that’s possible. I’ve kept a diaries of things. I’ve tried and feel like I need to just let it go and stick with what I’ve discovered. But I will look into the VSL at least it’s something that is new. I haven’t tried. Thank you so much for your help and support. You have a beautiful day. The irritation when eating is not fun and that’s really the thing I need to get a grip on. Adding the Chia ground seeds to the psyllium has been the best thing so far.
@frh Konsyl is what I started with 40+years ago. i think it was the only thing on the market back then, and my GI doc recommended it. I have switched to the Walmart plain psyllium powder. It is very similar to Konsyl at about half the price. Do you take Vsl#3? I’ve been taking it for about 6 months now and I think I’ve got my pouchitis under control. It is expensive, but if it works, it’s well worth the cost.
@frh I definitely need to try the ground chia food sprinkle. When I take the fiber powder, I put a heaping teaspoon in a 3 ounce glass of water about half full. Stir it and swallow it immediately. I almost choked myself to death one time because it solidifiedso fast it wouldn’t pass. Since then, I have reduced the amount to a small teaspoon, but it doesn’t seem to be very effective. I am hesitant to add Chia to the psyllium powder, ground or whole, because I don’t want to try to kill myself again! Lol🤣 that being said, putting the ground Chia seeds on food sounds like the perfect remedy. And also, I take it first thing in the morning and last thing at night, but not before meals. Perhaps I should just take it before meals. I’m also attempting to not eat after three or four in the evening so I’m not up several times during the middle of the night with issues.Unfortunately, nothing produces anything more than an applesauce type consistency stool. And it just pops on through to the vagina before it even gets a chance to hit the rectal area. I know this is probably TMI, but I appreciate the safe space in order to discuss things like this. I know eventually I’ll have to have another surgery to attempt to repair this fistula, but I am dreading it . In a perfect world, I could find several people who have had successful vaginal rectal fistula repairs. I guess I can’t complain, because I had approximately 40 years with no issues. This last year has been a bit of a nightmare though.
Sorry some above the above words were wrong (you can grind the Chia with either a coffee grinder or similar) it should say 😩
@lhstephenson
Hi, and thank you for responding. Yes I do have a J pouch. I do exactly what you do with the fiber, but I’ll tell you what really helped. Because I do still have diarrhea with the quantity you are mentioning. If you buy some Chia seeds and grind them (coffee grinder or mirror pestal) helps and put about a third ratio to the amount of psyllium fiber in your water, and shake like crazy they really help absorb liquids better than just the fiber. I too had the exact same problem getting any flavored fiber because of the citrus in some of them. But the brand KONSYL has worked better than any. I’ve tried less expensive then always go back to it. Or Whole Foods has a that work well . adding the chia to it just really helped . You can get them usually at a place like Whole Foods or similar. Or online. We will get a huge amount that you can also make Chia pudding with them if you do overnight oats or something similar to that. Chia absorb at least 10 times the amount of liquid when you take them so it helps with the drainage/diarrhea. I think the food particle issue with me
Is because of the stenosis which you don’t have. I’m thinking it has to be the stenosis, causing my problem since that doesn’t seem to be part of your pouch issues.. I hope I can help you a little by mentioning the psyllium and Chia seeds but do it before you eat like 10 to 15 minutes beforehand and I think you will find a significant change. Also, I take a little small sprinkle container with me. I go out to eat just the ground Chia. They have a kind of nutty flavor, but I sprinkle a little on food that I think is going to bother me like greasy foods are similar to not have to worry when I’m not home about trying to figure out how to take the fiber before a meal. I just take a small container and always keep it in my purse when out and about. Please let me know if it’s helped.
@frh I didn’t have that problem, because they completely removed the anus and brought the small bowel down to the anal area and made the J pouch. I take a psyllium fiber similar to Metamucil twice a day to bulk up and keep from having constant diarrhea, although I still do. The orange flavor was very irritating and kept me raw all the time, so I switched to just the regular flavor. Perhaps it is the acidity of the food that is irritating you? But having food particles getting lodged there is horrible! I can’t imagine.
@frh a permanent ileostomy would not have been my first choice, I have not regretted that it is what I decided to do. After 15 years of dealing with chronic pouchitis, fistulas, abscesses, and just not feeling good, it was a relief to leave that behind. The last 20+ years with the ileostomy have seen me in much better health.
After reading for years the issues with these surgeries and surgery upon surgery not working with risk I’m not so sure I want to try options myself. It’s exhausting to live with surgeries gone bad. Personally I will consider a permanent ileostomy since it sounds much easier per the comments above. I can’t be exhausted with the years left
Living like this.
-
Like -
Helpful -
Hug
1 Reaction@lhstephenson when I had my fistula repair in the 1990s, it was done at Mayo with both a colorectal and gynecological surgeon attending. It worked until I had my first bout of pouchitis.
There was discussion about using a muscle in my leg to put between the vagina and j-pouch if the initial repair didn't work, but I never explored that because with chronic inflammation, it wasn't likely to last.
I have no idea if this is still a technique that is used, or what the technical name of the procedure is.
Anyway, here is the direct link to Mayo, I would suggest, if you decide that something you want to explore, that you go to Mayo Rochester, they are the biggest.
https://mayocl.in/1mtmR63
-
Like -
Helpful -
Hug
1 Reaction@susanf8 not really sure what caused the fistula, but I have my suspicions. I noticed an unusual bulge in my vaginal area approximately 15 years ago. I went to a rectal physician who diagnosed it as a rectocele. About five or so years ago, I noticed air discharge from the area and upon palpitation I could feel a small bump. I guess this was probably the beginning of the fistula. I was referred to a gynecologist who said he would be unable to repair it because my entire rectum was removed and there’s no tissue for a rectal flap. I guess that’s the main issue the rectal surgeon in Dallas had. He tried to sew up the fistula and that did not work. I have no problem with traveling to the Mayo Clinic, but I think we have fabulous physicians in Texas, I just need to find one that has experience with my particular issue. I would not be against using mesh to seal the fistula, although no one uses mesh anymore, except with hernia repair in the abdomen area. I guess I’m just searching for a surgeon who’s had experience with this kind of issue.