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For the women, has anyone had a fistula between their rectum & vagina?

 

I have had mine for 7 years now & have been told that maybe it can be by past & close the fistula on the vaginal side. They would cut the fistula section out in front & 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 & 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 & I did not do well with an ile. If the surgery works after the healing & reversal of the ile, I worry that passing stool could become a problem & 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 & 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?

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I haven't had this issue other than a 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 12hrs due to all the scar tissue and issues I had that lead up to having to get it in the 1st place and it would be very complicated.Ā  After almost dying when they were doing the surgery I've decide 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.Its your choice in the end and whats 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. Im 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 decided!

 

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, coz 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.Ā 

Edit: https://youtu.be/T62xn0bi_Y8Ā here’s a link to her video where she talks about it.Ā 

 
Reply to Rose Bud 🌹

Thank you for your response. If I go thru with reconnecting, I will have an ile, not sure how long, until it's healed then another to reverse ile, 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 ile 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. Durning that surgery the doctor cut out a lot of scar tissue & 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.

 
Reply to Meadow Snow

Thank you, Meadow, for your thoughts & experience you went thru, 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.

 
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.Ā 

Edit: here’s the link to the second video: https://youtu.be/H2jQKRwWD_o

 

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

 
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 šŸ‘šŸ¼ šŸ‘Ā 

 

My stitches were self dissolving so I didn’t have to have mine taken out. You and her are way stronger than me.Ā 

 
Reply to AlexT

I've always had staples & I cried everytime they pulled them out..

 
Reply to Meadow Snow

Thanks Meadow.. Wow, the lady who lived years with the fistula having bowel coming out 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 week-end so I sat in the hospital all weekend long till 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 cause the fistula. I found out how clueless most nurses & doctors are, if they would just listen to their patients because we know our body & 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 had called the doctor asap but blew me off, my sister & 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 giving that option. That is something I could not have dealt with, just the 3 days I had too until surgery was enough for me.

 
Reply to AlexT

Your lucky I had stamples the 1st time and the secound 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 2butts in the front and one that just dont work

 
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. 😁

 

Yes it was caused by diverticulitis. I had two colectomys (sp). Ā My fistula is repaired and my ileostomy was supposed to be temporary but i’ve had it for 8 mos now.Ā 

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