By the time Lee Kelly was diagnosed with Crohn’s disease, his weight had plummeted to just seven stones and he was desperately weak.
It was after a year of ill-health during which he’d been repeatedly told he was simply suffering the after-effects of a bout of gastroenteritis.
Eventually, following a hospital stay and emergency procedures, medics told him he had Crohn’s, a form of Inflammatory Bowel Disease (IBD).
Now, in advance of World IBD Day on Thursday, he is speaking out about his condition to raise awareness and support fundraising to help find a cure for Crohn’s and ulcerative colitis.
Lee, from Morley, said: “In 2012 my life changed forever when I was diagnosed with Crohn’s disease.
“Although IBD is on the increase, sadly due to poo being taboo, IBD hasn’t had the same kind of awareness as other major diseases and illnesses.”
He first became ill in September 2011 with a stomach bug. However he was still suffering with diarrhoea and sickness months later, and losing weight.
“I couldn’t leave the house to go to work, I was in constant agony and couldn’t keep anything down,” he said.
“My weight plummeted from 13 stones to just over seven stones when I went into hospital.”
He was finally referred for specialist investigations – but before then he became so ill that he was admitted first to Leeds General Infirmary and then transferred to St James’s Hospital.
There he was quickly diagnosed with Crohn’s and underwent keyhole surgery, which avoided the need for a stoma bag. Then Lee was started on medication including steroids, vitamins and an immunosuppressant, which is the same as used in chemotherapy.
The medication keeps his condition under control, though he has been left with Chronic Fatigue Syndrome.
He also suffers from flare-ups of the Crohn’s, such as one recently which left him unable to work in his role as plumber and gas engineer for contractors Shouksmiths for several months.
The 30-year-old says there is a lack of understanding of IBD: “It’s life-threatening and it completely changes your life. I have friends who’ve had to have so much of their bowel cut out that they are fed by tube.
“I didn’t speak about it much when I was first diagnosed but now I’ll talk about my condition with anyone.”
Lee is administrator of a fundraising organisation called #IBDSuperHeroes, which is run by volunteers and raises cash for the charity Cure Crohn’s Colitis through local and national events, with all money raised going to research projects.
To donate: Visit www.justgiving.com/IBDSuperHeroesCureCC