Alex’s Story

I was diagnosed with Crohn’s Disease 15 years ago. It happened in my first year at university and it had a really big impact on uni life.

It took around 6 months to find out what was wrong with me. I had lots of tests and ended up leaving university before the end of the academic year because I was so unwell.

I was travelling from my family home to Scotland for the weekend and we stopped at the hospital in Nottingham to collect my test results – they weren’t ready but I ended up being kept in hospital as they were so concerned about the weight I’d lost and I was put on steroids.

After I got my diagnosis I had flares and struggled with my weight – at my lowest I was 6 stone and I’m 5’ 10”. It’s scary looking back at photos how thin I was. My mum found it really distressing as it was out of her control. I was in lots of pain and struggled to hold food down.

I joined Crohn's & Colitis UK as a member and the support they gave was just fantastic. It’s so important to realise that you’re not alone in what you’re going through.

8 years ago, they thought I would need surgery, but whilst I was under the knife, they changed their mind and stitched me back up. After this I started taking Humira but it turns out there was so much scar tissue in my bowel from all of the flares that the medication couldn’t do its job.

Having Crohn’s meant time off work and seriously affected my social and personal life. Eventually I chose to have surgery in the hope it would make things better.

After 6 months on a waiting list with the NHS I decided to get private healthcare. My employer thankfully had a good healthcare package and I had surgery 2 weeks’ later. 

It was a further 8 months before I was contacted by the NHS about having surgery. Patients shouldn’t have to face these problems - I was lucky to have the option to go private but not everyone is in that position, and I now find the ongoing cost of medication a frustration.

After my operation in 2015, everything has been much better. After 15 years’ of struggle I’ve been able to enjoy food and drink without feeling tired all of the time and feel like my life has turned around. I’ve even taken up running. 

Crohn’s affects everything – my family, my work, my friends, it isn’t just me. I am so thankful for the never ending support of my wife, Julie as I know how much this has affected her too.

In the back of my mind I’m always worried my Crohn’s will come back, and I may only get a few good years.

It can be overwhelming sometimes, but I keep up with the latest news and progress about treatments and medication through the Crohn's & Colitis UK Connect magazine. It’s great to see other people’s stories and feel part of a community.

I look back now and realise how little I knew about Crohn’s, and I hadn't even heard of the disease prior to my diagnosis. Crohn’s & Colitis UK have given me a huge amount of knowledge and support over the years, however I still feel this is a relatively unknown disease.

Crohn’s and Colitis affects so many people and we need to raise more awareness and funding in support of this charity.