Seeking advice on rectovaginal fistula repair options

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Pinkie pooh

I have had mine for 7 years now. I have been told that maybe it can be fixed by past closing the fistula on the vaginal side. They would cut the fistula section out in front and in back of the fistula on my colon, then reconnect the healthy parts if the fistula isn't too low in the rectum. If it is, then they will remove the colon from my colostomy to right above my rectum and make my loop colostomy an end colostomy. Has anyone had either of these performed? It is only a 10% chance that the first option would work. I would have to have an ileostomy again until all heals and I did not do well with an ile. If the surgery works after the healing and reversal of the ile, I worry that passing stool could become a problem and possibly end up having to go back to a colostomy. Would you take those 10% more surgeries or just have it turned from loop colostomy to end colostomy? I also just had hernia surgery 6 months ago and 3 months after the surgery I felt like I had another one, of course the doctor who did the surgery or should I say his NP said no that it was still a little swollen from surgery. Really long story. I just was wondering if anyone had something like this or similar, what would you do?

Rose Bud 🌹

I haven't had this issue other than an ileostomy which can be a pain at times. All I can say is you know your body better than anyone. I could possibly have mine reversed, but I was told if they could reverse it, it would take 12 hours due to all the scar tissue and issues I had that led up to having to get it in the first place, and it would be very complicated. After almost dying when they were doing the surgery, I've decided to not have a reversal for me, it's not worth the risk. For others, it may be. And I personally would hate for it not to work and have to have yet another surgery. It's your choice in the end and what's right for one may not be for another. I think if I didn't have other issues, I would've tried to get it reversed. I'm not sure if it helped you decide or not. If it's in your heart to try, then do it. Best of luck with whatever you decide!

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Meadow Snow

Hey Pinkie Pooh! Like Rose Bud says, it's definitely a very personal decision, and unique to you and your body. You need to listen to what your body and your emotions are telling you. If it's worth it for you to go with the surgery, then do it. If it's not, then don't. Maybe write a list of all the pros and cons, 'cause seeing it written down can sometimes help you out. For me, unlike Rose Bud, the reversal was definitely worth it, even though it ended up not working out after about six years of sticking with it and I now have another ileostomy, this time permanent. It was the right decision for me at that point in my life, and I stand by it, just like Rose Bud's decision was the right one for her. And now I have the benefit of experience to tell me that having a permanent ileostomy is now the right decision for me at this point in my life.

Side note: there's a YouTube channel called LetsTalkIBD, run by a lovely lady called Maggie, and she now has a permanent ileo due to Crohn's, and at one point had a fistula. I don't think it was vaginal, but still. She has experienced a fistula while also having a stoma, back when she still had her rectum.

Edit: https://youtu.be/T62xn0bi_Y8 ;here's a link to her video where she talks about it.

Pinkie pooh
Reply to Rose Bud 🌹

Thank you for your response. If I go through with reconnecting, I will have an ileostomy, not sure how long, until it's healed then another to reverse ileostomy, so that's 2 surgeries for that. If I have issues after the reversal, then I'm looking at another to have an end ostomy. I agree with you about the ileostomy being a pain, I could never get my appliance on right, it kept leaking. OR, I could just have my loop changed to an end colostomy, 1 surgery, done. I also have another hernia which I just had surgery for 6 months ago. I detected it 3 months after surgery, I promise I did nothing to cause it. During that surgery, the doctor cut out a lot of scar tissue and put in a big piece of mesh which will have to be removed now for either surgery I go for, so with that being said I will be cut down the middle for the 4th time in 8 1/2 years.

Thank you Rose Bud. Don't know surgery date yet.

Pinkie pooh
Reply to Meadow Snow

Thank you, Meadow, for your thoughts and experience you went through. I will definitely watch the video. The more info, the better. My gut is saying to go with the end ostomy, but my head says if you don't try, you will always wonder, ugh.

 
How to Manage Emotions with LeeAnne Hayden | Hollister
Meadow Snow
Reply to Pinkie pooh

You're welcome Pinkie. That's what I love so much about this site, we can all share our experiences and help each other. Also, Maggie did a follow-up video to the one I linked where she reads out some comments of people who have experienced fistulas. Both videos together are informative.

Edit: Here's the link to the second video: https://youtu.be/H2jQKRwWD_o

AlexT

You ever watch her video of getting her stitches out? She's way tougher than me.

Meadow Snow
Reply to AlexT

I just had to rewatch it to refresh my memory of it. She's an absolute trooper, she did so well in that video. I have to say mine wasn't painful at all, it sort of had a pinching feeling when the individual sutures would get pulled out, but none of the pain that poor Maggie had. I wonder if it's related to the fact that when my surgeon removed my rectum he completely closed the wound, he didn't leave it open, thankfully. And so far it's stayed closed. With the advice of my GP nurse, I have been rubbing Vaseline on it twice a day, but before I do that, I've been rubbing Sudocrem into it as well, and so far it's been working really well.

AlexT

My stitches were self-dissolving, so I didn't have to have mine taken out. You and she are way stronger than I am.

Pinkie pooh
Reply to AlexT

I've always had staples. I cried every time they pulled them out.

Pinkie pooh
Reply to Meadow Snow

Thanks Meadow. Wow, the lady who lived years with the fistula having bowel coming out of the vagina, oh no. I called the doctor the next morning. He had me go to the hospital that day. That's when I had surgery for my colostomy (it was a weekend so I sat in the hospital all weekend long until Monday to schedule surgery). My doctor did an EUA. I believe when he dilated me after he told me he would not do that, is what caused the fistula. I found out how clueless most nurses and doctors are. If they would just listen to their patients because we know our bodies and when something doesn't feel right. I told the nurse in recovery that I had gas coming from my vagina which only meant one thing since my rectum was packed, she should have called the doctor asap but blew me off. My sister and I looked at each other. Within 2 days or on the second morning of being home, I called the doctor about bowel coming from my vagina, gross. I'm not sure why, unless the lady didn't want a colostomy, that she was not given that option. That is something I could not have dealt with, just the 3 days I had to until surgery was enough for me.

Rose Bud 🌹
Reply to AlexT

Your lucky I had staples the first time and the second round because of all the complications... they left me open and packed it, and I had to have a wound vac on until it healed. So my scar is about 2 inches wide. So now I have 2 butts in the front and one that just doesn't work.

AlexT
Reply to Rose Bud 🌹

That would be horrible. Nobody should have to deal with stuff like that. I don't know if my 5 little scars show up in pictures but since my stomach hair has grown back, I don't think they're very visible. And I don't know how my butt scar looks all stitched up, I'm not flexible enough to see it.

Nadjadi

Yes, it was caused by diverticulitis. I had two colectomies (sp). My fistula is repaired and my ileostomy was supposed to be temporary but I've had it for 8 months now.