Up & Downs of IBD fistulas

 

 

Fistulas are bloody awful, and not only that, the medical profession struggle to control them. Not only that, patients have no support whatsoever as to living with a fistula ( or two in my case) we are expected to live our lives for months to years with a draining fistula. I am usually a very upbeat person but these last few weeks are getting me down. It’s also one of those things that is difficult to explain. I have tried in previous blog posts but fistulas and sinus tracts are quite the enigma and even when I google about one of mine, there isn’t much there.

Many surgeries later and my vaginal and stomal fistulas are still making my quality of life miserable at times and all the while I have to just get on with it. I had a big IGAM flap surgery which although the flap and the rectal end of the fistula healed, the vaginal end didn’t, so now it is classed as a complicated case that needs careful management. All the while I am left with horrible symptoms and no one to support me whilst I wait…and wait.

This week has been particularly awful, this time the vaginal fistula has been playing up, every few weeks it will leak like a sieve and my day to day life becomes a chore, then it settles down again until the next cycle. Its just a fluid stuff that comes out but it burns and I am sore. The stoma one is constant poo because it has now taken over the job of my stoma, it must have grown to the extent that it has blocked the plumbing so to speak.

My main fear is leaving the vaginal fistula to become bigger and reconnect to the flap, as it stands now it has got worse over the months. I feel the need to tell anyone who will listen that life with a fistula is draining ( a little joke is allowed ). I can sometimes feel poorly and tired, irritable and upset, but keep it to myself because after six years of the same old thing, it becomes boring to hear.

Constant leaking and discomfort, soreness and pain. This is what a fistula is like.

I have no contact with a nurse to see how things are, and getting my appointment through with my colorectal surgeon is slow.

I am going through a phase of aggghhhhhhhhh. ( dictionary meaning..an emotion felt when everything is going wrong )

I have spoken about this before but those with fistulas need more help, there should be something in place where we can call someone and see someone whilst waiting for our appointments. Just a little support goes a long way.

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6 Replies to “Up & Downs of IBD fistulas”

  1. Hi
    I’ve a,so for an abdominal fistula following surgical complications. It is a living hell at times with no understanding and very little support. It’s as if as soon as we have a fistula we are finished and become invisible. I really don’t know what to suggest but like you I feel far more should be done for us who have to live with this condition which most people have never heard of.
    My heart goes out to you and I hope you get some much needed support soon xx

  2. I hear you Sister! I too have a recto-vag fistula that keeps on giving! I now have an ileostomy to divert the ‘crap’. I find that the medical team in general have zero understanding/empathy for those of us trying to live with these. Any fistulas is a monster. For me, it has taken a toll on my self esteem and mental health. The standard surgical+medical treatment is lacking enormously. There is little money for this aspect of disease.
    I’m here if you ever want to chat.

    1. Hi lovely, I’m kind of lucky in one respect and that is that it doesn’t connect to my bowel so just this weird yellow fluid drains out. Still an utter nightmare at times, take care and thank you

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