Before I tell you about mine & Winnie’s ‘big weekend of adventure’ searching for Banksy’s famous street art and almost collapsing in the weirdly sweltering heat while lost in Bristol (yes Andy, we were lost!!), I want to say a massive heartfelt THANK YOU to all of you!
Four days have passed since I revealed Winnie in all her naked glory to the world, and I have been bombarded with tweets, Facebook messages and comments from people all over the world thanking me for sharing her.
For years I dreaded the idea of having a stoma. In my mind the birth of Winnie meant I would have to live the rest of my life trying to hide the pink lump on my stomach, covering her up with baggy jumpers and bin-bag style shapeless outfits. I thought I would be living the rest of my life in shame. People would point and stare at the shape of my bulging ostomy bag under my clothes, and I would be labelled a freak, disgusting, minging or dirty. I thought that it wouldn’t matter what I wore, where I went, what I tried to do with my life or who I tried to confide in, no one would ever look at me as a normal 25-year-old woman again (not that I have ever been normal #lol).
I guess I thought that once I had my operation I would just be that girl with the bag of poo on her stomach. I guess I believed that my stoma would define me, just as my Crohns had done in the past.
Last year I was out celebrating a friend’s birthday. We were having a lovely night, chatting, drinking wine and gossiping at her gorgeous flat before heading out on the town. I was feeling ill, but wanted to have fun and ended up talking to one of her friends (who was a medical professional) about my Crohns/Colitis. She seemed understanding, and asked all kinds of questions, which I happily answered. Everything was ok until a couple of glasses of wine later (I only had one or two, she might have had bottles), when we were dancing in a packed bar and she yelled ‘OY CROHNS’ across the dance floor at me.
Looking back I wish I had gone up to her and said something witty and cutting in response. If my friend had heard she probably would have slapped her in the face. But at the time I was totally shocked into silence. She had called me by the name of my illness..it was like I had been slapped in the face! Needless to say I headed home soon after the ‘incident’ and have never spoken to that rude and nasty individual again!!
So after all my years of worrying about the world not accepting my stoma – or even me coping with living with my stoma – words cannot describe how it has felt to receive so many messages of support from fellow IBD sufferers and ostomates from all over the world. I am honestly speechless (and if you know me that doesn’t happen often). I have been called an ‘inspiration’, ‘brave’, ‘positive’, ‘sunny’, and Winnie has been described as ‘beautiful’ and ‘perfect’. I have never been one to take compliments easily, and I have certainly never been called an inspiration before, so I was shocked and overwhelmed as the comments came pouring in via twitter, and my voice even started to quiver with emotion as I read them out to Andy while he was driving us to Bristol for one of my more arty challenges.
When the tweets came rushing in I was half expecting a flurry of negativity. I thought I was about to be bombarded with 140 characters of hate and disgust, telling me that I was ‘minging’, ‘revolting’ had a ‘penis on my stomach’ or ‘poop coming out of my side’. But instead I watched as you all embraced Winnie for all her naked, pink, slipperiness, and welcomed her into the world with a massive ‘hi, lovely to finally meet you’! I waited for a long time for that message of hate and, guess what, I’m still waiting!
I hope that showing you Winnie naked and revealing the bare truth about life with a stoma will help the world to understand what living with an ostomy is like. Your messages have truly touched me, and if just one person out there is able to see past their preconceptions about what life with a stoma is like; see past their crippling fear of living with an ostomy; or even gain a little understanding of what a life-changing operation this really is, then showing Winnie to the world will all have been worthwhile.
You have all made me feel so accepted, so welcome, and so natural. It has been a feeling that I have wanted for so long – don’t get me wrong many people in my life have accepted my Crohns and my ostomy, my family, friends and boyfriend have been amazing about it – but I have never felt this accepted for who I really am in my entire life. With Winnie I feel weller (i know its not a word) than I have ever done in my life – she makes me feel fitter, happier, freer, stronger and more independent than I could ever have imagined. But now I feel a part of something bigger, something tightly woven and strong. I feel like I have been given a massive pat on the back or hug from the world, told I am ok, and welcomed with open arms into a new world of understanding, acceptance and hope.
I may still come out of the toilet with my skirt tucked in the back of my knickers (happened at weekend and flashed special ostomy pants to everyone in Starbucks), she might make farting noises during meetings, meals and intimate moments, and I might still nap like an old lady in the middle of the day, but you have accepted me and my stoma without raising a disgusted eyebrow or questioning our cuts and chainsaw scars – and that’s more than I could ever have hoped or dared to dream of!
Anyway, because this is a little long I won’t tell you about me, Winnie & Andy’s big adventure in Bristol today, I will save that until tomorrow, but for now I will leave you with a taster of what’s to come….