Any input would be greatly appreciated on the subject noted.
Thank you,
KW
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I've had several recto-vaginal fistulas repaired surgically, both with and without ileostomies. The most successful repairs I had used a porcine mesh. Having said that, when I wasn't given an ileo I generally ended up needing one for a short time anyway.
But the surgeries were finally successful and I haven't had problems with a fistula for several years now.
Gin
Hi. Thank you very much for your response. I'm intrigued with the porcine mesh idea. Did a colorectal surgeon do that for you? Did you have a large fistula that was easily seen? Apparently, mine is very small. It took over 3 years before they believed that I had it. My last scope involved tampon with ink infusion in my pouch to diagnose.
Was the mesh placed in the pouch or the vagina? Did you have to seek out a special surgeon to do it? Did any of the mesh surgeries work without the ileostomy?
Any and all info you are willing to share will be greatly appreciated.
I told my GI doc that for now I am putting a hold on the humira. The entocort has helped with my pouch pain symptoms, and I am experiencing less leakage in general. (Things are more formed and it's harder to get through the fistula, I presume.)
Again, thank you for your response.
KW
I developed an rv fistula in 2019, my surgeon tried to repair without ileo but it was unsuccessful. I’ve waited 2 years thanks to covid, but I had surgery on Wednesday which involved using a flap of tissue harvested from my labia, I think it’s called a martius flap? they’re going to check with dye that it’s done the job before takedown of my loop ostomy. I hope you find relief, it’s been hard for me but I’m hopeful
Thank you for your response. It makes sense that it would take a temp ostomy to heal it. Was your fistula tiny? I had one surgeon try to find it two years in a row during scoping, and he couldn’t. They have to find it to repair it. The thought of another surgery kills me, but I don’t think a monoclonal ab would heal it. And who the hell wants their immune system compromised in a pandemic? I just don’t want to do it.
I thought it was a gynae issue at first due to my mirena coil but when they did an exam they could see it, so I’m guessing it must have been larger than yours. I only ever had discharge from it no wind or fecal matter so I thought it can’t have been that large? I had a seton in for the two years I waited for surgery. The only option they gave me was surgical, not sure I would have wanted to do biologics. Every surgery I have scares the hell out of me but I trust my dr. I really hope you get some relief, it feels like you take one step forward and two steps back xx
Thank you. I’m glad they found yours. Yes, surgery scares the hell out of me, too. I’m single with a dog and take care of my 90 yo parents. It’s hard to be incapacitated. I’ll keep researching this stuff. Might eventually take a trip to the Mayo.
Are you in any meds to control the inflammation? Do you have chronic pouchitis?
I feel your mental anguish of surgery. I’m a single mum of two (and a dog and a hamster) it’s hard when others depend on you. I don’t take any meds, only antibiotics when I do get the inevitable pouchitis, a few times a year for me usually. My son (15) has just been diagnosed with UC too. I wish you health and happiness hun xx
Thank you, cbear. I’m so sorry to hear about your son. I wish you both the best.
I am trying to take it one day at a time. I know I’ll do what I have to. Right now avoidance is my defense mechanism.
Best,
Alison