If you haven’t met Winnie, let me introduce her. Winnie is not my dog, great-grandmother, embarrassing friend and whoopie cushion or some sort of windy companion. She is my stoma – and we have put up with each or for the past 18 months since I had an operation which pretty much saved my life.
Today is Ostomy Awareness Day, and I wanted to share with you a few home truths about what living daily with an ostomy is really like. Public awareness of ostomy bags is next to none. Until I was faced with surgery I thought that only old people with Zimmer frames had stomas, ostomy and colostomy bags. I was sure that they were massive, ugly, heavy things that people had to carry around on stands and have emptied by nurses and carers – I’m pleased to admit that I was TOTALLY WRONG!
Having an ostomy does not make you any different from anyone else – apart from it probably makes you superhuman (in my humble opinion that is). We still poop, but only a little differently than most people. As far as you know the stunning woman sitting across from you could have a bag, the young lad riding the bike or the weight lifter at the gym. These days bags are so discreet Ostomates (the cool name we like to call our club or colon free folk) you can wear swimming costumes and tight fit party dresses without anyone ever knowing you have one – unless it fills up with air and then it’s a whole different ball game.
Most of the time me and Winnie get on just fine, but there is a whole lot to having a stoma that most people don’t realise. When Winnie decides to have a paddy she really goes for it. She doesn’t like certain foods, hates fizzy pop and rejects various bags at the toss of a hat leaving me with red raw painful skin. But she saved me from an illness which was destroying my life, and, well killing me. I can now travel the world, enjoy life, write for hours on end, and just do things most people take for granted – I used to be chained to a toilet seat and often collapsed in pain.
1. Sprouts come out whole!!! It’s a bizarre fact that no matter how much I chew some food it seems to reform in my digestive system and come out the way it was cooked in my bag. This happens with peppers, mushrooms, sweetcorn, peas and sprouts, and it hurts a fair bit when it happens, as a stoma is only a small opening for a whole sprout to fit through. Let’s just say it made for a very interesting boxing day!
2. I can’t fart – but Winnie can and she sure chooses her moments. For days Winnie won’t make a sound, but then, when I’m sat in an important meeting, in a quiet court room, on a romantic date with my boyfriend or any other sensitive moment, she will thump away to her heart’s extent. She seems to know the exact moment to speak up, and does it with such eagerness and determination I just have to laugh. I used to try to stop her with my hand, muffle her with clothes, but that just fuels her fire. I have learnt to just smile laugh and tell whoever is nearby that I have a stoma and she is having a bit of fun. I tend to find if you are not awkward about it either is anyone else!
3. I can still wear nice clothes. Yes I have an ostomy but I can still look young, hip and sexy – well as much as I ever did. I have had to change some of my fashion sense, and don’t wear a lot of body con dresses any more, mostly due to confidence! But I am not living my life in baggy t-shirts and walking around looking like I’m wearing a giant black bin bag. I can go swimming, run, jump and hopefully even skydive.
4. It can be fascinating. Having a stoma can be very odd, but also fascinating. I am often in awe of the way she works. She moves and appears to have a life of her own – she is after all a part of my bowel on the outside of my body. I don’t watch her all day, but sometimes, when I’m changing her I like to check everything is ok, that she has no cuts, and often I can’t help but laugh when she chooses that exact moment to start moving around.
5. I have no back passage. Sounds very odd, but after 14 years of agonising Colitis I don’t miss having an ‘arse’. It is now sewn up and totally inaccessible to doctors shoving cameras up it, something I could not be more pleased about! I have no colon, but am surprisingly no lighter than I was when I had it! Weirdly, despite not having a back passage I still, occasionally, get the feeling that I need to push. Obviously nothing happens, but I still find it weird.
I hope none of this has freaked anyone out who is preparing for surgery. The truth is life without a colon is far better than it ever was with one. From time to time I still get pain, and having an ostomy is not without its problems, but I have never been so free. Winnie has giving me my life back. In two days I go to America for the holiday of a lifetime – I couldn’t have done this without her, I would have been chained to a toilet seat.
So happy World Ostomy Day, my stoma is the best thing that has happened to me, and I hope that this day will help to reduce some of the needless stigma attached to ostomy and colostomy bags, and raise some awareness for those who live with them every single day.