Raising awareness requires many voices coming together as one. This project started out with two people with a vision, for a unique way to spread the word and make people take notice. Steadily the team is growing, with people effected by IBD, like minded and creative beings looking to help push the project forward. Please welcome one of those people, Bryony Hopkins.
So you’re probably wondering who the devil is she. Well, my name is Bryony Hopkins and I have lived with Crohn's for 20 years. This interview took place two years ago and it might be hard to believe that previous to this, nobody knew I had Crohn's. Throughout my entire childhood, through school and even into my first years at university, I couldn’t say those three words. I have Crohn's. That’s sixteen years of my life that I spent hiding the fact I had a chronic illness that affected my life every single day. Of course, everyone knew I had Crohn’s (going to school with a nasogastric tube or suddenly putting on 2 stone from steroids isn’t exactly subtle!), but I couldn’t talk about it out loud. Of course, I have come out the other side of that now, and couldn’t be louder about if I tried! Raising awareness of IBD is extremely important to me, and so I hope you don’t mind me sharing a little slice of my story (and myself!)
My Crohn's story is more like a chronology, rather than a short bedtime tale; but I will make it brief! I was diagnosed as a little diddy Bry, at the age of four, so I pretty much don't remember a life without this pesky disease! I was at my sickest as a child, spending the majority of my childhood in and out of hospital, on steroids, azathioprine, mesalazine, infliximab - basically all the drugs you can think of! When I was 12 they took out my large intestine, leaving the rectum to reconnect later. I lived with an ileostomy until I was 16, until everything had calmed down and I could be reconnected. I then spent three crazy years at university, where I had another three major abdominal operations to fix adhesions/internal hernia/external hernia... again all the possible reasons for obstruction! Now, the disease has made a fiery reappearance in my rectum and I have just finished an intense month liquid diet to get things back under control, whilst continuing to take a weekly dose of adalimumab. Since coming off the diet I have revamped my entire lifestyle – making a conscious effort to do everything in my power to give my body the healing time resources it needs. Exercising more, sleeping more, eating better and keeping stress to a minimum (although this last one is pretty hard to control!). My holistic approach along with the adalimumab is keeping things ticking over… to a point. I have another Crohn's crossroads on the horizon, I am sure.
Having said all that, Crohn's does not define me. I am a journalist, blogger and complete food obsessive!!
That’s one of the main reasons I am so excited to be part of GCASFM – an amazing project which works to raise awareness of IBD through art, culture and music. Every thirty minutes someone in the UK is diagnosed with Crohn's or Colitis, and if that isn’t enough reason to spread the word and break any stigmas attached, then I don’t know what else is! I hope that by writing for GCASFM, I will be able to share with you some of the experiences and life lessons I’ve gained over the past twenty years. We’re not just talking health tips – I’m talking general living your life tips. Because really, that’s all we want to do, right?
Until next time, head over to my blog "A Belly Full Of.." and follow my journey . There you can find Crohn's updates, adventures in my kitchen as I adapt to my new diet and my recent ‘liquid diet diary’ – a 4 week journal of my recent mission to remission!
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Words: Bryony Hopkins & Matt Strutt
Images: Bryony Hopkns
Contributors: Aaron Darveniza
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