Desperate for help with fistulas - new member

Hi, I'm completely new to this, but I'm really reaching the end of my tether looking for light at the end of the tunnel and am looking for anyone else who has been through/going through the awful ordeal of fistulae.

A long post so please bare with me.

Background; when I was 19 I had my first perrianal abscess. It made me very poorly physically, and eventually I went to my GP, sick bowl in hand and got metronidazole antibiotics for the first time. Over the next four years, I returned to the doctors at least six times a year with the same issue, along with abnormal discharge from my vagina which would not shift with any treatment and made me incredibly paranoid. When I was 23 I relocated to Cardiff, and within a week developed another abscess, and my new GP instantly referred me to the hospital. For almost a year I visited various specialists between the gynae and colo-rectal departments, before it was settled that it fell into the colo-rectal category. I had a wonderful consultant, who informed me that I had three fistulas; two complex perrianal in a horseshoe formation and a recto vaginal fistula. After one emergency op on yet another abscess, I had two seton stitches placed in the complex perrianal to prevent further abscesses. That was four years ago, and they're still in place. I have had one more abscess which was operated on last September and apparently in a different location, so they've done their job.

I moved once again, so and a half years ago, and after several fruitless appointments simply being told to lose weight, I saw a lovely doctor who referred me to a fistula specialist in a nearby city. Since this referral a year ago, the specialist has simply dedicated the time to investigating the cause, which is proving to also be fruitless. I have had two flexi sigmoid and a colonoscopy, and yesterday I had a capsule enteroscopy to look at the small intestine.

There is no evidence of Crohns or colitis in my large intestine, hence the capsule camera.

My bloods have shown a B12 deficiency, which goes toward explaining the horrendous feeling I have.

I have another appointment next month, at which they will have results of the capsule and a faeces sample.

The main point of my post is to ask is there going to be any end outcome?! I am 28, and I feel three times that. I have no energy, I have a permanently bleeding and discharging bum which causes me no end of embarrassment and humiliation. I can't maintain intimate relationships and I would love nothing more than to settle down and have a family,

With no definitive plan of action or idea of how and when the horrible fistulas will close, I really am feeling exasperated and fed up.

If anyone at all can shed any light or share their experiences, please do.

1 Reply

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  • Hello! I'm sorry I don't know anything about fistula and the outcome. But, I'm sending positives vibes your way and hope you find some answers.

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