New and desperate for help with fistulas

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.

7 Replies

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  • Hi sweetie, that's horrendous what you've had to deal with. If you go on Crohn's colitis support on here there's a lady called Willow. She's a nurse and she has a lot of knowledge that may help you. I've just been in hospital myself with what was originally thought a fistula. It was an abcess which was cut and drained. I have Crohn's. Maybe you could stick and paste your question on there anyway and maybe she can give you some advice. I hope someone can help you.

  • It's such a shame because there are lots of different communities on here but this isn't very active x

  • Thank you so much for getting back to me, I originally found this site when I was researching the b12 injections I'm receiving, and there seemed to be loads of people with experiences so I thought I'd give it a try.

    They have not yet found any evidence of Crohns nor a cause for these horrible tracts, so I felt like a fraud asking on there but I will give it a try to see if anyone knows of any outcomes.

    With a combination of feeling generally rubbish, catching everything that's going round and being clueless about how this can move forward, I'm just feeling at an all time low this week.

    Thanks again for your reply, and I'm pleased your abscess was cleared without causing a fistula as I wouldn't wish them on my worst enemy. Having had three drained myself, you have my deepest sympathy with the discomfort of the packing and dressing and aftercare and I hope that it heals well. Xx

  • I do understand, it's hard to keep going sometimes when you can't see light at the end of the tunnel!! The surgeon tried to pack mine but I was carrying on too much so in the end it was left open and i dress it myself plus taking antibiotics. IIt's been very painful so I know. The surgeon asked me if I'd had discharge from my back passage!! I said no thank god!! It may take a while for Willow to get back to you because she does work. Also if you have an Instagram account look for our life with Crohn's. It's a very big community and you can ask questions on there. You can also look back at previous posts and answers. Even though you haven't got Crohn's lots of people on there have had fistulas like you. Xx

  • Hey :)

    I'm so sorry for what you've had to go through

    I'm currently going through a similar thing to yourself

    I had a colonoscopy (bare with the spelling had my meds and my heads gone funny haha)

    I've had non stop pr bleeding for 3 months bloating and when i say bloating ive been asked if im 8 months pregnant before .. fatigue achy irritable I can't stop still my comfy position is on my side fetal position..

    I had a blood test which ruled out chrons and colitis but the colonosocpy showed ulcerative colitis and proctitis which the ulcerative colitis has caused which is inflamed my rectum hence the bleeding and discharge coming out.. but they also found a mass in my small bowel so I've got to wait until next week for results of that to which they've rushed the appointment forward so whatever happens happens..

    Eitherway, I know as horrible as they are suppositories are AMAZING ! they help heal the insides and clear out any infection or anything that is making it inflamed or hurting it has to get to a point where I'm bent double over the bed for me to say right I'm gonna have to have one because I hate them but by the gods I swear by them.. its worth asking about them..

    I hope you're sorted soon sweetie xxx

  • So sorry to hear of your pain, both my grandad and brother have ulcerative colitis and I've seen how poorly it makes them and how much pain they're in. I hope that your results are nothing that can't be fixed, please be sure to update and let us know when you have results sending lots of love xxx

  • Thank you bees88 will do xxx

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