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My Fight With Crohn’s Disease

I have signed up to a fundraising event for Crohn’s and Colitis UK called Walk It, which is happening this summer and I thought it was time to share my story. I’ve never been private about it, hell, I can talk about it all day if you asked me!

So what is Crohn’s Disease?! It is a form of Inflammatory Bowel Disease and to put it simply, my immune system attacks my intestines. Crohn’s can affect the digestive system anywhere from the mouth down to the anus and affects all the layers in the walls of the intestines. It is most commonly found in the ileum, where the small intestine joins the large intestine. Symptoms include (but are not limited to) nausea, vomiting, diarrhoea, severe abdominal pains, extreme fatigue and weight loss. More information can be found on the Crohn’s and Colitis UK website here.

I was diagnosed with Crohn’s Disease just after my 18th birthday, on 5th August 2005 to be exact. Yes I remember the date. I also remember the time of my appointment, 9:30am. When your life is suddenly turned upside down, there are some things that just stay with you, always.

me at 18
On the left, on my 18th birthday in June 2005, too ill and weak to celebrate. On the right, me at my belated 18th birthday party in October 2005.

I had just started my second year at college, studying a BTEC National Diploma in Fashion and Clothing when I became ill. I wasn’t able to focus on my studies so I dropped out of college the following February. I focused on my part time job in the local corner shop but that quickly suffered as my health deteriorated.

Everything in my life suffered, even relationships. Tensions rose between me and my parents and I ended up staying with my sister for a while. She reported back to my mum that all I did all day, every day, was go to the loo and sleep!

That wasn’t all that was happening though. I felt constantly sick and feverish; I was vomiting as well have having constant diarrhoea. My weight dropped scarily low! I had no energy, I remember mum having to push me up the stairs to go to bed once.

Let’s jump ahead to 24th June 2005, mum took me to the doctor, who told us to go straight to the hospital. I was admitted and stayed there for 12 days whilst they treated my symptoms and ran umpteen tests to get a diagnosis.

After leaving hospital, I was then treated as an outpatient and now came the part of finding a medication to keep me well and my Crohn’s under control. After trying a few different medications that didn’t work, my consultant decided on Mercaptopurine (AKA 6MP) and I have been taking this ever since. This medication is in a family called Immunosuppressants, so it lowers my immune system. I have to have regular blood tests to monitor it due to the side effects.

Over the past 12 years, I have been forced to make sacrifices due to this awful illness. I was able to go back to college and finish my BTEC and go on to university to study Fashion Design. I was so close to achieving my dream of becoming a fashion designer. But I had to leave uni at the beginning of the third and final year because the stress of the course caused two flare ups within 9 months that both resulted in admission to hospital. I left uni in November 2009 and I haven’t had a flare up since – talk about bittersweet.

IMG_20160814_192012
At our engagement party, August 2016.

I have learned to manage my stress levels, as this is clearly the trigger for my Crohn’s to flare. I have had what I call twinges, over the last 4 years. Prior to this, I had settled into a consistent form of normality, maybe even remission, but I can’t be sure of that.

But 4 years ago, stress levels heightened when my dad ended up in hospital for a month. He’s alright now but since then I have experienced changes in my bowel movements, I am more exhausted than I have ever been and some mornings I feel sick when I wake up. I have talked to my doctor and IBD nurse about these. They ordered a load of tests, which came back normal. So who knows?! Maybe it’s just because I’m getting older? Dunno. I’ve given up trying to find out why, I just focus on monitoring it so I know if it gets worse or (hopefully!!) better.

In the meantime, I have adapted as best I can. I wait until I get to work before I eat breakfast to avoid eating too early and upsetting my stomach and I spend most weekends sleeping and not much else. My sewing is mostly restricted to Sunday afternoons, this is when I’m the closest to feeling human again after recharging my batteries with plenty of sleep on Saturday.

Research is much needed to understand Crohn’s so treatments can be improved and hopefully a cure can be found. This is why I am taking part in the Walk It event, my mum and one of my friends will be coming with me. If you would like to sponsor me, my Just Giving page is here and please feel free to ask me any questions about Crohn’s Disease.

Disclaimer: this post is not a collaboration with Crohn’s and Colitis UK. I wrote this off my own back because it is such a big part of my life and I want to raise awareness of this awful illness.
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2 thoughts on “My Fight With Crohn’s Disease”

  1. I admire your determination and will to prevail through this struggle to live as normal a life as you possibly can with this horrible disease. My cousin was diagnosed with Crohn’s when he was 18 as well (almost 40 years ago now) and suffered for many years with it. In those days there wasn’t really any medication on the market and he just did the best he could with diet (figuring out what triggered a flare up and avoiding it but that was problematic as you can imagine). I’ve known others – clients, colleagues – who have suffered with it as well and it’s just as painful as you describe. My heart is with you!

    Liked by 1 person

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