What it feels like…to live with Crohn’s Disease.

By Steven Sharp, West Lothian

When asked the question what is it like to live with Crohn’s Disease I often find it hard to explain because it’s all I’ve really known after being diagnosed in 2002 aged 12.

I knew something was different but didn’t know what?

What was different was my energy levels weren’t the same as the people around me, I always needed to just “nip” to the toilet and after a very quick referral process from GP to Sick Kids Hospital in Edinburgh and several tests I got diagnosed with Crohn’s and at that point little did I know the roller coaster ride that lay ahead.

First couple of years I had several different forms of medication but kept relatively ok from steroids to intravenous infusions to liquid diets I had almost every medication going at the time and it was during this I was trying to concentrate on school work but that proved very difficult.

In 2006 I became very Ill and had to be fed for 10 weeks through an NG tube as it was impossible to hold down food. I was in the toilet 15/20 times a day for lengthy periods of time when people round about me were out enjoying life, doing well in school and just being a teenager.

I had no energy, I was fading away, I felt alone but I always made sure I had the biggest smile on my face to show I wasn’t scared. In 2008 at the age of 17 and in my final year of High School I was told I required major because without surgery to remove my full large bowel and leave me with a Stoma I probably wouldn’t be able to share this today.

Since then I’ve had a further two bouts of surgery and now I have a Stoma and “a bag for life” (least it didn’t cost 5p) At the age of 24 I would be lying if I said the Stoma didn’t put up some barriers in the way but it’s the reason I’m here today so I see it as a positive.

In 2014 after a spell of ill health I decided it was time to speak up, no more living in fear and it was my time tell the world my story. I organised a fundraiser to raise money and awareness for Crohn’s and Colitis UK which raised over £4000 in it’s first year and found the courage to show and tell the world about my Stoma.

I’m proud of my achievements and I want to use my experiences to show others that that no matter how hard it gets there’s support available but I won’t stop there I will continue to raise awareness and support as many people as I can.

I have been so lucky to have such fantastic support from family, friends, well wishers and a few well known personalities along the way. If I can help just a handful of people with the work I do I will be delighted and I hope 2015 goes from strength to strength.

Follow me on twitter @stevensharp90 where you will find links to my Facebook event page and also visit www.crohnsandcolitis.org.uk for more information about the charity.