Over the years I’ve had some very blank and puzzled looks when I’ve told people I have a stoma.
I’ve been asked bizarre questions, got quizzical stares and had the weird head tilt I always accustom with pity.
While I can’t fart on demand my stoma has a mind of her own and I often find myself apologising for her always ill-timed and very vocal fanfare – always an embarrassing situation during interviews, meetings and press conferences.
The standard response to my explanation that I’m not a disgusting and suffering from a flatulence problem, is a short smile and, well, a little bit of seat shifting, while I press my hand desperately against Winnie who continues farting away merrily in the knowledge that her musical abilities are making me and others squirm.
Ever since me and Winnie first became attached and then became permanent partners in crime I’ve faced some weird and wonderful questions as to what exactly she is and what exactly she does.
While I’m open and honest about my ostomy – I think of our relationship like a marriage, all be it a very rocky one – some of the questions leave me speechless and well, a well more than a little bit tickled.
Once a mate seemed to explode from having a question inside him for so long, “so do you just open a valve and go to the toilet when you want?” just bubbled out in a very public arena.
So as it’s World Ostomy Day today, a day to spread awareness about our wonderful and life saving alternatives to having a colon, I thought I would clear up some of these bizarre misconceptions I have faced since my first operation.
“What is that noise?” – oh yes that’s me!
If Winnie starts to fart, gurgle and be an absolute nightmare, there isn’t really anything I can do apart from laugh.
Unlike people with a colon I can’t fart on demand – honestly if you paid me £1,000 right now I couldn’t do it.
So if you’re going to fart and then blame someone else, if there is only me and you in the room there is going to be no way you can deny it, so don’t point that finger at me.
I can however slightly control Winnie’s output through being well hydrated and eating the right things, just like anyone else some things cause gas and so farting is more likely, but even if I do everything right there is no knowing how she will react.
Having her can be like living with a small child, she is totally unpredictable and is prone to strop and throw her toys out of the pram at any time, mostly during romantic or very important moments.
No doubt if I ever get married the “I do” moment will be when she chooses to disagree!
“Are you pooing right now, or do you turn a valve when you go to the toilet?”
Erm no and well kind of no – I mean how do you answer that without someone backing away from you.
Let’s clear this up once and for all.
I don’t have a large intestine, instead part of my small colon has been brought out through my abdomen….hours and hours of painstaking surgery created this worm like pink thing sticking just above my jeans, and that’s Winnie.
So instead of a large intestine I have a bag.
A very strong and resilient bag, which hardly ever malfunctions (I know when it does). Just like everyone else my digestive system doesn’t work on command, it is working all the time, pushing and trying to cope with all the rubbish we put in our mouths every day – it’s just mine works more quickly and much more visibly (for me anyway),
If I had a valve that would be very dangerous as it would all build up inside and make me very ill, which is what happens when I have a blockage.
In other words, yes I am pooing right now. But there again so are you, it’s just you’re doing it into your large intestine and I’m doing it into a bag.
“Does it smell, is it clean?” And all those other questions about if I’m more dirty than anyone else.
No having an ostomy doesn’t make me any dirtier than anyone else – in fact I’m probably more hygienic than you.
The fact is if I wanted to I would no longer need to sit down to have a number two – I guess It’s a habit as a woman I still sit down to use the toilet to empty my bag.
I don’t have to wipe my bum, read the paper on the toilet, push and strain and all those horrible things I remember having to do all to well after years of ulcerative colitis. I simply empty a bag, give it a good clean and magically it’s like it never happened.
I also change the bag every one or two days, which people can’t do with their bums, so I guess that makes me really very hygienic indeed.
Does it smell – well it depends what I’ve eaten.But if you’re talking about when I’m sat next to you, absolutely not. There is charcoal in the bag which stops that happening – so if you can smell anything suspicious it really isn’t me.
“What does your bum do then – erm, look pretty?”
A bit like a Barbie doll I don’t have a bum hole – my arse is simply for sitting and well-looking human.
For the first year of living with Winnie we had a temporary relationship, which i like to think of the dating period. The surgeon left in my rectum in case they decided to reverse my operation. Unfortunately that redundant part of my colon was full of colitis and made me very ill, so a year later it was pulled out and me and Winnie got, well, married for life.
This means my arse hole was sewn-up (I think this is one of the hardest things for people to get their heads around).
Yes my bum does nothing apart from allow me to sit down, and perform squats and lunges at the gym.
The pros of not having this are ridiculous.
I don’t get piles and can never ever again have an endoscopy (of which I have had millions), and (one for the adults) I can never have anal sex which can only be a result!
“Do you regret it, does it bother you?”
Absolutely not and if it bothers you than that’s your problem!
While me and Winnie have our ups and downs, I wouldn’t get rid of her for the world.
That might shock people, but if tomorrow they told me I could be some miracle reverse her I don’t think i would do it.
I’ve never been more well in my life, fitter healthier, and I’ve never felt so free.
If I got rid of her (which I literally can’t) I would stand the chance of going back to the way I was, living in constant fear of illness, crippling pain and having my life ruled by an incurable medical condition.
I wouldn’t change her or apologise for having an ostomy (unless she is making farting noises), and why should I?