A half pint of blood and mucus – my fistula’s final hurrah

Sorry I haven’t written for a while, the last couple of days have been a little chaotic both in and out of work. It has also been a tough week for my health, which always suffers at a time of stress and leaving dos – with late nights, long working hours and general stubbornness and excitement causing chaos with my colitis.

This week I’ve been in a considerable amount of pain. My fistula seems to know it’s only got a month left to torment me, so it is unleashing hell, in what can only be described as a ‘final hurrah’. I’m often surprised by how much mucus my tiny rectal stump can generate in a short space of time. On Thursday I was in agony at my desk as it pumped and squeezed. When I went to the loo to assess the damage, I understood why – in just ten minutes my tiny inflamed section of colon had produced around half a pint of blood and, well, horrible smelling goo.

Every time this happens I wonder how it manages to produce quite so much. Even now I still pass blood through my bottom end four or five times a day, and with my fistula bag (a baby ostomy bag) needing emptying at least three times, that is a heck of a lot of mucus my colitis is creating.

I can’t bear to remember how I coped when I had meters of the bloody thing! There’s no wonder I was going to the loo 20-30 plus times a day, when you look at it like that.

Right now I’m exhausted. I’ve given up on my health with the happy prospect that in a month I might, fingers crossed, never have to deal with any of this crap ever again. My eyes are bright red again (a sign of my inflammation markers shooting through the roof), my mascara has gone in the bin and my makeup brushes have been declared a “toxic zone” until I attack them with a bottle of baby shampoo later today. Yesterday I resumed the agonising eyelid hygiene treatment in a bid to get rid of the crust forming around my bright red eyes. This involves cleaning them with water as hot as you can cope with (without burning yourself), and then cleaning them again with cooled water with bicarbonate of soda in. It hurts and leaves you feeling raw – but it works.

Before my surgery when I was ill I looked ill. I would look drawn, tired, and as if I was being held up by an invisible string that might snap at any movement. Now, knowing I’ve had my surgery, I apparently look “well” most of the time. Well, that’s what people insist on telling me. It is nice to hear, but when you feel like your going to puke, your stomach is pumping out blood and your brain is yelling for you to go home and get into your pyjamas with a hot water bottle and wait for it all to be over, someone smiling and saying “you look so well”, can be hard to deal with. My response is always that I’m not 100 percent there yet but I’m a million times better than I used to be – what I want to say is “thanks, but I don’t feel well”.

It sounds silly and selfish and I’d rather someone told me I look good than “anorexic”, “skinny”, “pale” and “bloody awful” – all things I have been referred to as time and time again – but sometimes you just don’t want to hear it. In fact at a work do on Thursday a former member of staff said “your not right are you, I can see it in your face” moments after another told me I looked fantastic. Ok, she has Crohn’s too, so she knows the warning signs, but I think I appreciated her honesty and her concern more than any of the compliments I’ve had over the past six months since my op.

I spent far too much of that night talking about my condition. I chatted about Sir Steve Redgrave, Darren Fletcher and my horrific experiences in the hospital, until I didn’t want to talk about it any more. It’s not that I’m not open (totally the opposite actually, I’d tell a stranger on a bus about my condition if Winnie started farting), sometimes I like to try to forget I don’t have it and just pretend I am a normal healthy person.

I’ve stopped sleeping properly really since my pre op assessment. I’m having weird fragmented dreams and waking up at random times again to my fistula pulsing and twinging. I’m tired of it, but I know worse is to come in the next few weeks.

I’m excited and apprehensive about my upcoming stint at The Mirror and my time staying in Canary Wharf. I’m just hoping my colitis doesn’t get worse, my eyes lose their monster crust and my skin stops bleeding and breaking for long enough for me to enjoy it.

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