A very problematic fistula

After a couple of days of really bad pain, tenderness and a few pretty disgusting leaks, I

OUCH!!! My mucus fistula looking very angry without its bag on

OUCH!!! My mucus fistula looking very angry without its bag on

finally gave in yesterday and rang the stoma nurse about my fistula. I guess I just couldn’t take it anymore. The trigger was when I went to the toilet at work and I noticed that the blood had come back…it took everything for me not to just breakdown there and then.

So according to the registrar, a very bemused looking doctor the stoma nurse dragged kicking a screaming into the clinic to look at my very temperamental fistula, I am “on the verge of something big”! Sounds exciting right? Well what he meant is that the horrific symptoms are starting to return, only this time as I only have a tiny bit of colon the agonising and crippling pain from before is more like a dull throb and twinges like someone is pulling at my bowel with a pair of tweezers. He means that I am in all probability on the very edge of a major flare of my Crohn’s/UC…and that it is time to nip it in the bud before it spirals out of control and I end up flat on my back squirming around in agony again.

This is all because they didn’t take my whole bowel out last time I was on the operating table. There are a lot of reasons for this, none of which i can really explain, but the long and short of it is that I have a mucus fistula, and that combined with my remaining colon (still full of Crohn’s/colitis) is what could send me hurtling back into my illness again…all this would have been solved if he had just whipped it all out at once..typical man!

My mucus fistula formed after my supposedly ‘perfectly healing scar’ exploded one night on the hospital ward sending what appeared to be the entire contents of my stomach pouring onto the floor. I have been through a lot of scary stuff in my life due to my illness, but I have to say that my stomach tearing open has to be one of the most horrifying moments so far – I would put it up there with the first time I blacked out and hit my head against a sink as the entire contents of my body appeared to drop into the bottom of the toilet one afternoon. I remember just standing in the bathroom screaming as this luke warm brown liquid cascaded from my stomach, reaching out in shock to press the emergency call button, screaming my stomach is falling out in a wild panic while the nurses swarmed around me trying to calm me town, telling me ‘it’s perfectly normal dear, you’ll be ok’….in what world is your stomach splitting open normal??? Oh yes, in the world of IBD and abdominal surgery, that’s right!

Anyway, since my surgery I have had a few hiccups with my hole in my stomach. It’s no bigger than a thumb print, but boy can it cause havoc when it wants to. According to my surgeon it formed when the stitches holding my remaining rectal stump (the remaining bit of colon they left in when they removed the majority of my large bowel) came undone and, not wanting to feel left out, the remaining bowel squirmed its way to the surface so it could form another stoma. I like to think of it as my second stoma, and although it is a pain and not a pretty sight if it hadn’t burst through the surface, like a little worm peeking out of the soil, the mucus in my bowel would have discharge into my body causing a world of problems and making me incredibly ill.

So I guess it’s the lesser of two evils.

But I hate my mucus fistula. Having it means I have a second stoma bag. Ok, its only a baby sized one, but I really didn’t sign up for having two bags, one has been hard enough to accept. I have embraced Winnie, and, although I wouldn’t say I love her, I’m never disgusted or angry about having my ileostomy. Winnie is simply part of me and without her I would still be incredibly ill and in a heck of a lot of pain. But no one ever warned me that I might end up with two bags, and, and this has been the hardest thing to stomach, that I could have to put up with it for the rest of my life if I don’t have a second lot of surgery.

Anyway I’m stuck with it for another six months when I will finally be fully colonless. For now I’m putting up with my mucus fistula, the only problem is it’s not making life easy. Over the last few weeks all the side effects that seemed to miraculous vanish the morning after the operation have started to slowly return, and my fistula has started generating more and more mucus filling the little bag in record time and causing some rather horrific leaks that have ruined more than a couple of pairs of my favourite PJs. The stuff it generates is pretty horrible, its like a sicky brown colour, I suppose a bit like baby puke…NICE! And the smell, urgh, it’s so pungent. The worse thing is it comes out both ends, which is something very surprising when you’ve had your bowel removed, it may sound silly but you would think you wouldn’t be able to poop anymore, but this stuff just won’t stay in, there’s no control, it just kinda floods out.

The worse thing is the pain as the stuff shoots out of the tiny hole in my fistula. It literally spits it and the pain, if I happen to be walking, stops me in my tracks. It feels like I’ve been kicked in the stomach and leaves me breathless. It also incredibly tender and even if the ID card I wear at word lightly touches it I want to scream in frustration…seat belts are an especially horrible experience. But compared to before it is like a minor headache, like a tiny mosquito bite when an elephant is bouncing on your stomach, I can cope with it, but not if it means getting ill again.

I refuse to get ill again…I’ve been ill for as long as I can remember, and for the first time in my life I was starting to get used to not waking up and going to bed in pain. That can’t return, and even though that means I’m going to have to spend the next 6 months shooting all sorts of things up my sore backside I’ll do it if it means I never have to feel that pain again.

 

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One thought on “A very problematic fistula

  1. My heart goes out to you and your incredible strength and perseverance. I wish your surgeon had taken all your colon at once. I had a female surgeon who took all my colon, some of my cecum and my rectum at once. My stoma and mucus fistula are together in one spot so only have one bag. A j.pouch was also made but when reversed there was a perforation in what was left caused by the surgeons and am back to having a pouch. The disaster is worthy of a couple of pages which I won’t put here. I’m too scared to have reversal surgery at the moment. Having said that, because all my colon has gone there have been no symptoms of UC since and would recommend you have all your colon and rectum taken next time you have surgery so you could be symptom free. You certainly see and experience some of the weirdest and most horrifying things with these illnesses. You can beat this, Lisa

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