Has anyone experienced fistulas? Please help

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.

3 Replies

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  • Hi sweetie, sorry you haven't had any replys, set up an Instagram account and search our life with Crohn's.its about IBD, it's very active and you will definitely get replys on there. I wish I could be of more help. They thought I had a fistula, my surgeon did anyway, but a few days later it was an abcess!! I said is that better then? I was told no!! Anyway have a look at the sight. I'm on there too and there's often posts about fistulas. They are brutally honest on there though. If ever I can help you please just ask.

  • Thanks again for getting back to me 😂 You're my only friend! I have downloaded Instagram again (was taking a social media break due to feeling so lousy and missing out on everything fun) so I will do that. I'm just desperate to find someone else with a recto-vaginal fistula to find out what's the end result and that it can be fixed. Obviously I worry about fertility and the future, it's stolen my early twenties from me and I need peace of mind that it can get better.

    I think it would be a good idea to write down my questions and take them to my next appointment because I have brain fog and a bit of white coat syndrome when it comes to taking in what is being said. Feel like I just answer the same questions, describe the same symptoms and get sent for the same tests every time I go.

    Sorry for moaning, just feel like I'm on my own with no idea where it's going. Thanks again for the tips and reply. Xx

  • You have a moan to me anytime!! I understand totally. There are a lot of young people on the sight. People of all ages from all over the world. They feel just the same as you. My heads a shed at the best of times!!😂😂 you can't believe how it affects so much of your body. I know there are people on there who have had children with the complications of IBD. Il be your friend anytime 😁I think the problem on here sometimes is that when people are feeling well or just too poorly they don't come on which is a shame but understandable too!! Message me anytime. If I can help you I will xx

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