Steven Sharp believes “progress has been made” in normalising the disease since he was diagnosed as a youngster, but admits there is still a long way to go before those living with related debilitating conditions are “properly recognised”.
It comes after researchers identified the Capital as having some of the highest known rates of IBD in the world as part of the most detailed study ever performed on recording the number of those living with the condition.
The disease, along with the similarly incapacitating colitis, is incurable and often produces unpredictable and intrusive symptoms, such as diarrhoea, pain, weight loss and extreme fatigue.
However, account manager Steven, from Fauldhouse, said those living with the illness on a daily basis continue to feel “invisible”.
The 28-year-old told the Evening News: “There has been a big move recently to properly recognise that not all disabilities are visible, but there is still a long way to go before we can feel properly accepted.”
“It is great that we have proper signage on disabled toilet doors informing people that not all disabilities are visible, but it doesn’t stop the dirty looks you have to take when you come out of the bathroom.”
He added: “I shouldn’t have to show off my stoma bag just to prove I have a right to use the bathroom.”
Scientists at the University of Edinburgh say one in 125 people in the city live with Crohn’s disease or ulcerative colitis - a figure that is expected to rise over the next ten years.
But experts have urged the problem is very much a “global pandemic,” adding, while the Capital was the backdrop for this research, similar results would be reported in cities across the UK.
It is estimated rates could rise to as much as one in 98 by 2028, putting further strain on NHS resources.
The study, published in the scientific journal ‘Gut,’ found Crohn’s disease affects 284 people out of every 100,000 in Scotland’s capital - only slightly below the world’s highest rate of 322 in 100,000 reported in Hesse, Germany.
Ulcerative colitis, meanwhile, affects 432 people out of every 100,000 in Edinburgh – second in the world only to south-east Norway.
Dr Gareth-Rhys Jones, clinical lecturer in IBD at the University of Edinburgh’s Centre for Inflammation Research, said the rates reported in the Capital “mirrored” those across the UK, adding changes to a “western way of living” were required to reduce the number of people presenting symptoms.
He said: “In a nutshell, we don’t know what the causes of IBD are, but we do know around 20 to 30 per cent of the disease is genetic. There are other environmental factors, particularly around diet and a Westernised industrial lifestyle. For Crohn’s disease in particular, smoking plays a big part.”
“We know that the balance of good bacteria in your gut is vital to avoiding the condition, we just don’t know what the balance is.”
Dr Jones added: “If you look at the rates of the condition in south east Asia and China, they are just exploding and reporting some of the highest in the world and that is down to those countries adopting a more western way of living.”
“It’s not just Edinburgh, it is a worldwide global pandemic. This is the most detailed study ever performed in the world on IBD rates and it shows this it is a western world problem.”
Steven's Story: "I was like a skeleton, I was lucky to see 18 years old"
“It was my parents that noticed I had started passing blood. I was 12 years old and to be honest, I never really gave it much thought, but thankfully, they decided to get me to the doctors to get checked out."
“I remember sitting in the doctor’s room, he couldn’t officially diagnose me there and then, but he had some expertise in that area and told us he thought it was either Crohn’s or colitis.
“When you are told that, at 12, you don’t think about it, what it means, how it is going to affect you because you just don’t know what it means - they are just words coming out of someone else’s mouth.
“That was in 2002, but by 2006, I was very ill. I was pretty much a skeleton, I couldn’t keep food down and I was back and forward to the toilet around 20 to 30 times every day.
“It was the unpredictable nature of it, I could be quite happy one second and then doubled over in pain the next.
“The doctors were absolutely incredible, they decided on surgery to remove the full large bowel, so I had a stoma bag for the first time in my last year of high school.
“It came with the stigma, because of course it did and at that age, you want to be going out and enjoying life with your mates, but I remember what the doctors told me after the surgery.
“They said I probably would not have seen my 18th birthday, I had gone from being so ill, from having no life between the ages of 12 and 17, to being able to enjoy this quality of life I had never experienced before.
“At 28 now, the stigma is still there, but for me it is second nature to have the stoma, but what is more encouraging is the fact that people are talking about it. The football team I coach, Stoneyburn Juniors, warm up in Crohn’s and Colitis t-shirts, there is an actual dialogue around the subject.
“There is a long way to go, of course, but things are improving and for me that is really encouraging.”
What is inflammatory bowel disease?
With estimates putting the number of people living with inflammatory bowel disease (IBD) at around 500,000 people across the UK, little is actually known about the causes of the condition.
Crohn’s disease and ulcerative colitis are lifelong and debilitating illnesses with no known cure and are characterised by symptoms including diarrhoea, pain, weight loss and extreme fatigue.
The cause is unknown, but it is thought to be caused by an overactive gut immune response in genetically predisposed people.
The makeup of normal gut bacteria and diet can also play an important role. While patients with IBD require regular treatment and monitoring, the condition has a low mortality.
Experts say this – combined with an ageing population – means the number of older people with IBD is set to increase in the coming years.
Sarah Sleet, CEO of charity Crohn’s & Colitis UK, said: “Crohn’s and Colitis are a growing health crisis and the number of people living with the conditions is huge."
"These shocking figures must influence decision making in the NHS and push forward the case for increased resources, improvements to services and ultimately better care for people with Crohn’s and Colitis.”