Every Halloween I seriously consider going as the most terrifying thing I can think of – myself during an IBD flare.
I don’t know why I always try to think of other things to go as, why I always end up panicking at the last minute rooting through fancy dress shops for something that isn’t made of tarty, clingy material that will stick to my ostomy bag like cling film, when I could remove my mask of self confidence and layers of makeup and show people what I really look like when I’m sick.
Better yet I could go as crazed deadline day Rachel – that manic hair and insane stressed smile would send any trick or treater running for the hills.
This year, instead of going as a cat or a pumpkin, I wanted to put two fingers up to my illness, to all the years of fatigue, pain, blood, gore and down right crap! So I went as a Whoopee Cushion! It raised a lot of laughs and questioning eyebrows. I obviously got the comments about not wearing fart perfume, although I reassured people that if I really wanted to I’m sure I could have created the desired affect (a bit of inappropriate toilet humour there). This was made even more amusing by the fact that I actually can’t fart, although my stoma always gives it a good go!
It was a bit of a Crohnie joke, and some might be offended by it. But at the end of the day it was my way of saying I don’t care what people think of my ostomy bag or of my illness. And at end of the day if I can’t laugh at my misfortune who can?
If your wondering what’s so terrifying about IBD let me put it simply, everything. That’s why I think the people who live with it and manage to keep down anything resembling a normal life are nothing less than heroes. There’s the crippling fatigue, extreme weight loss, vast amounts of medication, sleepless nights, non-stop toilet visits, midnight dashes to the loo, accidents, blood, vomiting, joint pain, skin problems, ulcers, agonising stomach pain – and for me blackouts and sleeping on the toilet floor.
Even now I don’t have a colon anymore, I’m almost sure I still have mini flares, nothing like before where I ended up chained to the toilet, or curled up in a tight ball unable to let anyone touch my stomach and without food for days on end. When my ostomy starts spitting every morsel out of my body in horrid green goop I look like the living dead, and back when my flares were at their worse I was nothing more than a walking skeleton; my eyes were bloodshot, skin pale and colourless, hair out of control and nails brittle and jagged. I had no energy, dragged myself to and fro, and hadn’t slept in weeks!
Before you all start criticising me for comparing sufferers of this disease to zombies, skeletons and ghouls this Halloween, let me make it clear that most of the men and women I have met with IBD are stunning. They make so much effort to hide their illness from the world that they look like models. I am not one of those, but I definitely wear a mask to conceal my exhaustion.
Anyway I hope you all had a happy Halloween. I’m going to start blogging about my USA trip shortly and I think it is fair time to start a campaign for something – I will keep you all posted.
Some other amazing things Crohnies and Ostomates did this Halloween to raise awareness or stick two fingers up to IBD: