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REAL STORIES | That Girl’s Got Guts – Crohn’s Awareness Week

18th May 2019

Flashback to 2008 – Obama‘s been elected president, Britney‘s made one of her many comebacks, Beyoncé and Jay Z have tied the knot and I was merrily going about my life at uni when I was struck down with, what I later came to know as, a “Crohn’s flare up”.

My best friend and I had been travelling around Australia and were in Thailand when I developed the most crippling stomach cramps and a desperate need to be in close proximity to a toilet at all times. Neither were the kind of holiday souvenir I wanted but I put it down to a “foreign bug” and got a flight to the UK hoping it would get better back on home turf. It didn’t. It got worse.

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The stomach cramps, which I can now liken to labour contractions, were constant and for the first time in my life I was losing weight without even trying – or wanting to. I couldn’t leave the house because I knew I’d need to make a mad dash to the toilet (sometimes up to 50 times a day) and I was tired – more than tired, I was knackered. Seeing blood in the toilet scared me and after a frenzied Google search told me I was going to die in the next 24 hours I thought it was time to make the awkward trip to the doctors to discuss my bowels. Lovely.

After being prodded, poked and referred to the Gastro department for a cosy half hour having a colonoscopy, it turned out I had Crohn’s Disease – an incurable inflammatory bowel condition. I wasn’t going to die by the end of the day, but my small intestine wasn’t in very good nick.

In a nutshell, Crohn’s is a chronic condition which causes inflammation to the digestive system. The inflammation can lead to sores, deep ulcers, swelling and fistulas in the bowel. Any part of the digestive tract can be affected – in my case it’s the section where the small intestine meets the large intestine (the ileum for the science boffins out there). It’s painful, debilitating and can lead to life-threatening complications. No one really knows what causes it (although it’s believed to be linked to genetics and an abnormal reaction of the immune system to certain bacteria), how to get rid of it, or even how to fully control it. Every case is different and what works for some people doesn’t work for others so it’s very much trial and error on how best to treat it. It affects around 115,000 people in the UK (according to the Crohn’s and Colitis UK) and can strike at any age, although children, teenagers and those in their early twenties seem to be being diagnosed more and more. Crohn’s and Colitis are both forms of inflammatory bowel disease (IBD) but are NOT the same as irritable bowel syndrome (IBS). Some of the symptoms might seem similar but in IBS there is no damage to digestive system.

I managed to get it under control with a strong course of steroids which, although made the Crohn’s symptoms ease up, caused my hair to fall out in clumps, my face to balloon (moonface it’s unofficially known as), night sweats, skin problems and insomnia. But at least I wasn’t glued to the toilet seat anymore! Yay! I came off the steroids, made changes to my diet and I was in remission for nearly 4 whole years before it reared its ugly head again. Some people don’t get that long in between flare ups so I was very lucky. However, unluckily for me, it chose the most inconvenient and difficult time to make its next appearance – when I was 7 weeks pregnant.

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I won’t bore you with the details but this flare up lasted the duration of the pregnancy resulting in my small bowel perforating – which led me to contract sepsis – and needing an emergency operation to remove a huge section of it (but not before giving birth to a beautiful little baby girl – my Lyla). I didn’t know this at the time but apparently 80% of people with Crohn’s will need surgery at some point. My surgery was called an ileostomy and I’m now the proud owner of a stoma, cleverly named Winnie – I’ll let you work that one out!

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That was almost 6 years ago and since then I‘ve been in full remission. Having your bowel removed at 25 isn’t on anyone’s bucket list and it was really hard to come to terms with at first but it‘s given me back a quality of life again and to be honest it’s absolutely fine! I can go swimming, wear fitted clothes, travel abroad – everything. I’m not ashamed of having a stoma – why should I be, it literally saved my life. Being open and honest about it all can help spread a bit of awareness and stop it being such a taboo subject.

So, although Crohn’s is a lifelong disease it doesn’t have to be a life sentence – you can manage it and lead a full and happy life! I’m proof of that!

EmmaX

#GirlAbout

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