Recto- vaginal fistula

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I was diagnosed with Crohn's 13 years ago and I am am now 40. I have managed the Crohn's flare-ups pretty well since then but the biggest challenge for me has been trying to close a recto-vaginal fistula which was discovered a few years ago. I was given a colostomy and numerous attempts have been made to close it but without success - plug method, flap, pig tissue cell regrowth the list goes on....I have lived with my stoma quite happily but I would like to have it closed if a solution to closing my fistula can be found. The latest suggestion is an injection called Inflixomab. I was wondering if anyone has had similar experiences and if they have any advice? Thank you!

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5 Replies

  • Posted

    I have had Infliximab injections and they were the best thing I had but unfortunately I became allergic after six months.  I enjoyed just sitting for the time of the infusion.  Best of luck.
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    • Posted

      Thanks Sheila. I guess I would like to know if anyone has had a fistula healed as a result or by any other means. Best wishes!
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  • Posted

    Hi!

    I've not heard of Infliximab being prescribed specifically to help close a fistula before but after everything else you've tried it may well be worth a go?

    Did your Specialist explain how he/she thought it would help?

    My understanding is that it can help to reduce Crohns symptoms in general and, with luck, achieve a state of remission. 

    I had about 6 Inflximab infusions myself before I got anaphlyatic shock from it and had to stop.

    But there were many other patients who had great results from it and swore it was the best treatment they'd ever tried.

    Guess I was just unlucky..

    I also had a seton (?) procedure years ago for one of the fistulas that I've had. Unfortunately it didn't close it but I put up with it as I was told further attempts may cause incontinence (the external opening is next to my anus) and I don't want to go there!

    Yet another nasty symptom of Crohns that's difficult to treat...! 

    I have recently had my loop Ileostomy reversed and although I'm still recovering (surgery was at the end of March) I can fully appreciate why you'd like to get rid of your stoma!

    There's another site called Inspire com which may be useful for you.

    It's predominantly American but the people on the 'Ostomy Support Community' are very helpful.

    It may be worth joining and asking if anyone has had succes with treating the same type of fistula?

    I sincerely hope you find something that helps!

    Please let us know how you're getting on?

    Take care! X 

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    • Posted

      Thank you. Yes I was surprised too but apparently there is evidence to show it can close fistulas. Ah yes, they were called setons. They tried twice on me but didn't work. I can empathize with the undesirable location of fistulas! If mine wasn't so close to the sphincter then they could just cut it but like you the risk of incontinence is very high. I will let you know how I get on and thanks for your advice. I will check out that forum. Take care!
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  • Posted

    Hi, I am new to this forum, I live in the states, seems things are different with health care here, treatment available, ect., but I have a recent diagnosis of same, I have not had a crohns diagnosis yet, things have gone backwards for me you might say, I have been suffering from debilitating gastro issues for years, and it has taken years to get a diagnosis thus far for what I "do have" I have been diagnosed with fibromyalgia, severe ibs, interstitial cystitis, , severe restless leg, I have suspected IBD but could get no one to listen to me until I started loosing stool thru vagina, I am 47 years old, when I lost 60 lbs in 5 months with this doctors started to listen, I am just now getting into see the right specialist now. I live in a small town in the south and I have to travel hours to see doctors who specialize in these things it has been pure hell, I am living on Popsicles and crackers with soup broth, if meds allow me the ability to stray for other foods it is pure hell, my family had a barbecue today n I had 3 bites of chess cake n I am paying dearly today, I wonder if you have any advice, I have been treated like a leaper by some doctors who think or react as if my condition might be transmitted, some act as if this is a emeregency medical situation only to send me along to another who puts me on the back burner, I have had a barium enema that produced no results, told me they did not see it and referred me to another but not till end of year idk what to do anymore I'm miserable, feel disgusting, I need anything you could give me thanks, kelly
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