Meet James Conlon, the 25-year-old lad who has recently changed his surname to 'Colon' to raise awareness for Ulcerative colitis - a condition he was diagnosed with Ulcerative colitis five years ago.
A form of inflammatory bowel disease, the condition affects the large bowel and rectum as well as having many other effects including abdominal cramps, joint pain and fatigue.
"I was in so much pain but the 'manly' thing to do was not to say anything," James told TheLADBible.
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I quickly realised that this really wasn't the right thing to do, I was losing weight rapidly and visiting the toilet 50+ times a day. I was living my life in the toilet... it wasn't great."
When James finally plucked up the courage to visit his GP, he was wrongly misdiagnosed with IBS - but he knew something wasn't right.
"To be honest, for a while it made me a shell of who I was, I wasn't leaving the house. I wasn't socialising with my friends - I lost quite a few after refusing to do stuff," he said.
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James ended up turning to people online to seek support, as his disease became more and more isolating.
"Online support for me is amazing," he said. "In real life people aren't so supportive as they don't really know anything about what you're going through, as much as they try to understand they will never understand.
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"You can log onto Facebook and ask a question about your symptoms or any issues you're having in an IBD forum and you are always receiving a response. These people are going through the same thing as you do can understand your worries, your questions.
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"I wouldn't be the person I am today or so passionate about raising awareness if it wasn't for the support I've received online. Its truly changed my life, I was in such a low place, I didn't know where to turn - I was so lonely."
But as time went on, finally, it seemed it wasn't just his online friends listening. Eventually, he was referred to the Queen Elizabeth Hospital in Birmingham where he had several procedures in an attempt to find out what was going on. A year later, he was finally diagnosed with Ulcerative colitis.
He now has to inject himself daily with an immunosuppressant called Humira which affects his weight and skin.
He said: "My weight varies dependant on a flare, my skin has taken a beating and is very dry and sore. I've developed several infections do to the injections.
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"Fatigue is a huge part of living with UC - you can have 12 hours of sleep and still be tired when you wake up. Sometimes people don't understand how draining it can be."
And because of this exact thing - people not understanding - James has decided it's time he raised awareness of the lifelong disease he suffers with.
To do so, he signed up for the Crohn's and Colitis UK Walk It event in London, and asked friends and family to donate.
He quickly reached his target of £200 so decided to raise the bar by changing his name to 'Colon' in light of the disease that affects just that.
"I was going crazy letting people know what I was doing and my progress," he said.
"Each £100 I smashed I was getting excited. The donations slowed down a little so I set people a challenge - I'd had it suggested to me before and I had brushed it off.
"As my surname is Conlon, I've had a lot of people say to me 'the first thing I see when I see your name is Colon'."
So, he promised the generous people donating that if he hit £800, he'd change his name. Amazingly, the lad managed to pull it off - and currently all of his social media has been updated with the new name.
James has now set himself a new target of £3000 and if he reaches it he will legally change his name by deed poll.
He said: "The importance of awareness is to get the disease out there and spoken about. When I talk to people now they still don't know about it. I usually get 'Oh, my auntie has IBS, that's the same thing, isn't it?'
"It's so important to make people aware of how dangerous and life-threatening these disease are as many don't understand or have little understanding. I am so passionate about raising awareness and getting people to share their stories - in hope that one day we're able to find a cure so that others don't have to suffer.
"I want to be able to tell my children in the future that I was able to do what I could to find a cure. I want to see people not have to suffer anymore."
We wish him all the luck in the world.
To make a donation, visit the Just Giving Page.
Words by Hattie Jones
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