Wednesday 3 June 2015

6-5 days to go: Why a stoma beats having severe IBD any day

Instead of covering a stomacare topic, today I decided I wanted to focus on something a bit more broad: what having this stoma has actually meant for me. As I get closer to my next operation, I can't help but think back to my last one, where my emergency stoma was formed and the majority of my colon removed. The thought of surgery terrified me, and a bag repulsed me. I only wish that 19-year old me could have pushed away some of her fears and seen what a fantastic life lay ahead once UC had been banished for good.

Because the real honest truth is, having a stoma bag beats having severe Ulcerative Colitis. Any day. Instead of the fatigue and blood loss that keeps you bed or house bound, removing your crappy colon gives you energy that you never thought you'd get back. Rather than losing weight (or gaining it on steroids), and watching every morsel of food you eat, you're suddenly able to eat masses of salad, corn and whatever else in abundance without ill effects. Instead of leaving the house every day worried you'll have a mortifying accident, a stoma bag very rarely catches you out with an urgent demand for the toilet - 95% of the time (the rest being when I'm ill, usually) I'm able to casually drift into the bathroom as and when it suits me.

Of course, when your doctor first tells you that you're going to have to poop out of a hole in your tummy into a bag, these good points are not going to be the first things on your mind. Instead, you'll probably feel mortified. Devastated. You'll have frets and worries over appearance, smells, 'will anyone every fancy me again?', and the feeling that having a stoma somehow makes you 'gross' or 'different'. I can fully sympathise with this sort of thinking, because I've been there. My first reaction to being told in hospital that I'd need a stoma was a resounding, screaming NO. I begged doctors to keep me on immunosuppressants for an awful, pointless two weeks (that did nothing for my UC, but just made me even sicker). I screamed at a nurse that I'd rather die than have one of THOSE. I cried, and cried, and cried.



To me, a 19 year old who only 2 weeks ago though she had a bad stomach bug, suddenly being told I had this incurable disease - oh and by the way, you now need a poop bag - felt like the end of the world. I thought this little bag would spell the end of my life as I knew it. And it did, sorta. In the best way I could ever have asked for.

My 17 months with my stoma have been some of the best of my life. As I displayed symptoms but wasn't officially diagnosed with UC for a long time, the pain and tiredness I'd suffered for so long had become an unexplained normality. Yet all of a sudden, here I was, pain free, full of energy and able to get on with everything I loved. This year I've gone and completed a full year of university (after having to drop out because of op 1), been abroad twice, been to my first festival, volunteered, camped, wild hiked, been swimming, drinking, theme park rides, out on the town, learning new skills and hobbies, enjoying myself as a 20 year old should be able to.

Of course, I wasn't happy overnight. The down moments persisted for around 9 months or even longer - and one day I'd be feeling great, the next I'd be ridiculously insecure. It took a long time to learn to accept and love my body for what it is - just as beautiful as any other, with a little bag stuck on it. No biggie.

Having a stoma has taught me to throw away my vanity and focus on what's important. We all have body hang ups, but the odd shaped nose and wobbly legs that were always my pet hates have faded into insignificance. It's a healthy nose, a good pair of legs. They're not perfect but they work as they should and that's enough for me. I've accepted my body and myself a lot more, and for that I'd say I'm even more body confident than I used to be pre-ostomy.


So when you're faced with stoma surgery, remember this. It will not be easy. It'll be one of the hardest things you'll ever do. You're allowed to rant, and scream, and shout. You're allowed good and bad days. But when people say 'this op's amazing after a while, just you wait and see how happy you'll be', try holding back that inevitable eye roll. It really does mean a better life. That's no exaggeration, no joke. It can take a while for the mist to clear, but a stoma can mean the start of something completely new. You can do it - one day you will get there.

A bag is a small price to pay to get back the good health you once lost.

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