While most people see ‘the loo’ as a place of necessary respite, along with a private spot to check emails, play a quick crossword or even take a snooze, those living with Crohn’s and colitis view this seemingly innocent place as a frightening and intimidating cubicle.
“So how do you view the loo?” is the unusual question posed by Crohn’s & Colitis Australia this month as they open the annual, month-long awareness campaign, in support of people with the debilitating illness of inflammatory bowel disease or IBD.
Francesca Manglaviti CEO of Crohn’s & Colitis Australia, the peak patient body supporting the IBD community, explains the cruel physical pain and mental anguish IBD sufferers are up against.
“When we asked some of our CCA members how they viewed the loo, we were given a range of answers that highlighted how the daily action of visiting the toilet can bring significant fear into the lives of those with IBD. For people living with Crohn’s disease and ulcerative colitis, the loo evokes feelings of panic and trepidation pain, anger and sadness, frustration and loneliness.
Some said that they fear going to the toilet as they never know what will happen when they are there. Will it be a normal visit or will they finish up in hospital as a result of the savage pain that may drive their surgeon to operate. We want to ask the public ‘how do they view the loo’, to encourage discussion, seek understanding and gain support.”
More than 75,000 Australians (1 in 250) are affected by Crohn’s disease and ulcerative colitis (IBD). These chronic and debilitating diseases are becoming more prevalent, complex and severe, yet they remain largely invisible.
On the evening of Thursday 19 May, key landmarks around Australia will be lit up in blue and yellow, to recognise IBD sufferers, their families and supporters. These include Melbourne Town Hall, Melbourne Star, Federation Square, Brisbane City Hall and King George Square, Adelaide Oval, Walkbridge to Adelaide Oval, Carillon (Canberra) and Bell Tower Perth.
Quick Facts About Crohn’s & Colitis
- IBD is a chronic and largely hidden disease affecting approximately 1 in 250 people aged 5–49 nationally.
- Australia has one of the highest rates of prevalence and incidence in the world and each year sees an increase in young people being diagnosed.
- Over 75,000 Australians have Crohn’s disease or ulcerative colitis (collectively known as Inflammatory Bowel Disease (IBD)), and more than 5 million worldwide have the disease.
- The number of Australians with IBD is expected to rise dramatically within the next ten years, with numbers set to rise to 100,000.
- Research estimates that national total hospital costs for IBD are approximately $100 million per annum (PwC, ‘Improving inflammatory bowel disease care across Australia, March 2013).
- Productivity losses attributable to IBD in 2012 are estimated at over $360 million. An additional $2.7 billion of financial and economic costs have been associated with the management of IBD (PwC report as above).
- Crohn’s disease is incurable and is associated with a 47% increase in the mortality risk.
- Ulcerative colitis is only ‘curable’ through radical surgery and if untreated may also lead to death.
- Typical symptoms include the frequent and urgent need to use the toilet, diarrhoea, bleeding, loss of appetite, fatigue and weight loss.