On Sunday something humiliating happened that left me wanting to crumble into a blithering wreck in the bathroom and never emerge again. Me and my ostomy bag have had our moments over the past 13 months, but this was something else, this was a full-scale blow out. I’ve had my fair share of leaks, explosions and inappropriate ‘stomach’ farts. I’ve had weirdly reformed sprouts, sweetcorn and peppers magically un-mush and re-solidify back to their pre-chew form and force their way out of my tiny stoma opening with a painful pop. But Sunday evening experience was something else, and I can’t quite work out how it happened.
Luckily we made it back from Lincoln (for one of my challenges) and I was in the flat, so close to a toilet and a shower, when the incident happened. I could smell something weird as I walked through the flat towards my bedroom to take a nap after the exhausting journey. It was an eggy smell. Sensing something was wrong I went to the bathroom to check and couldn’t believe the mess. I’ve had leaks before but this was something different. The whole front of the bag was seeped. It didn’t even leak out of the side, but seemed to come from the lining of the appliance. I wanted to cry but managed to hold myself together, remove my clothes (which were covered in it) and jump in the shower. This was the first time I showered with a naked stoma. I’m sure I would have found it liberating if the circumstances had been different.
Later curiosity got the better of me. I inspected the bag before disposing of it and it had a snip in the lining, clean and clear like a scissor snip. I guess I was overzealous while cutting my bags, something which has never happened before. Since then I’ve been paranoid. I’m constantly patting and prodding to check I’m not seeping out, which I’m sure must look odd to people chatting to me on the street. I’m glad I was in the flat when I noticed, I hate to think what I would have done covered in stools at work, in court, at a meeting….but I’ve coped with worse.
As you probably realise most people don’t poo from their abdomens, for those who do it has its pros and cons….that moment was most definitely a con!
Over the years I’ve spent more time talking about my poo to random strangers, friends and family members than I’ve probably spent talking about anything in my life. I’ve described everything from how loose, mushy and sometimes rock hard my excrements can be, to how it turns green in my ostomy bag when my body is failing to absorb and the weird lumps which often look like undigested sweetcorn that pop out of my stoma and appear to breed and multiply in my bag (even though I don’t recall the last time I ate a single one of the bloody stubborn things). I’ve talked about the smells surrounding my poop and ticked off trillions of Bristol charts to see how perfect my stools would be on a scale of 1-10 of the poo of all poops – mine has never been the perfect 10, otherwise known as “God’s poo”. In fact I’ve got to the point where I feel like telling people about the state of my stools before I even tell them my name, and toyed with the idea of introducing myself with the greeting “type six, fluffy pieces with ragged edges – a mushy stool, with or without eggy smells and blood – often hard to pass” and shaking their hand while saying “oh and did I mention consumes vast amounts of toilet roll and hogs the bathroom”.
When people ask you how you’re feeling what they really mean to say is “how is your poo?”. In one variant or another the question is never far behind. I’ve given more stool samples in my life than I dare to even comprehend, and I know some of them have been obnoxious. I’ve seen horrors at the bottom of that toilet bowel that I wish I could forget, and I’ve had moments where the sight of blood has left me clinging to the stall walls sobbing with grief and despair. But despite all the hangups about poo and the horrible things I’ve seen I can’t help but constantly look, monitor and check everything is ok down there. I guess it’s been ingrained in me, and as disgusting as it might be, the instinct has saved my life.
I guess the point I’m trying to make is having Ulcerative Colitis/ Crohn’s Disease has swallowed up my life in a way that has left me totally obsessed with the state of my poo. Even though I no longer have a colon I can’t help but inspect the stuff my body produces. It is a rather yucky habit which has become a way of life, drummed in me through absolute necessity and a constant monitoring process to make sure I catch the bastard flare-up in time. I’ve got so used to checking my poo in the toilet bowel for blood, mucus and other tell-tale signs that I can’t help myself, and now I can’t avoid looking as I have to empty an ostomy bag dozens of times a day, which can often be an enlightening experience into just what you shove in your gob that your body simply spits out whole at the other end.
I have to admit that I find my stoma fascinating. Ok I don’t go as far as sitting and watching it pulsing and moving around all day long, but when I have to change my bag (every day atm) I am mesmerised by the way it moves, pushes and pulls. It is a living organ and behaves just as any part of my bowel would in order to move matter through my body, but being able to see it on the outside of my body is both a (initially) strange and interesting experience. My stoma has a life of its own, and while not a pleasant experience it has a sort of beauty to the way it works, especially when it seems to reform and create food all on its own, like some sort of poo covered vending machine, popping out full mushrooms, onions and pieces of candy in sporadic bursts from its tiny pink hole.
Ok so I’m freaking you all out now. My employers and colleagues are probably reading this and thinking OH SH*T SHE’S TURNED INTO A WEIRD POOP PROBING FANATIC, and what’s even worse is she’s told the whole world about her weird fetish. Don’t worry guys I’m ok, I’m not obsessed.
I guess I find my stoma so fascinating because it has literally saved my life. I have minutes and hours of every day where my stoma and its weird function causes chaos, twinges of pain and farts in embarrassingly quiet situations, but I no longer have my whole universe falling out of my arse every five minutes. I suppose even a year on I’m still in awe of what the world of medicine has managed to achieve; the freedom this little pink lump on the outside of my body has granted me, and the joy it has brought back to my life.
Ok, so it isn’t always plain sailing. I’ve had explosions. Overdrive days. 3am wakeup calls with my bag at the edge of bursting. Millions of leaks at the worse possible moment. Rashes, allergic reactions and bags falling straight off my skin in the shower. I’ve cried and wanted to tear it off the side of my body, but mostly I’ve accepted life with a little pink pod on the outside of my body. Me and Winnie are attached in more ways than the obvious, she is my saviour, my partner and also at times my worst enemy.
But as they say “you should keep your friends close but you enemies closer”.