Australia has among the highest prevalence of inflammatory bowel disease (IBD) in the world. Each year, these lifelong illnesses are costing the nation more than $3.1 billion, including $100 million in hospital admissions annually. These costs are likely to grow, with 100,000 Australians expected to be living with IBD by 2022.
Inflammatory bowel disease is the collective term for illnesses that involve chronic inflammation of the digestive tract. Crohn’s disease and ulcerative colitis are the two most common types of IBD.
As the incidence of inflammatory bowel disease continues to rise, Crohn’s & Colitis Australia (CCA) is encouraging people living with these lifelong, incurable illnesses to share their experiences to spread awareness and help #FlushTheStigma this World IBD Day.
Real cost of living with Inflammatory bowel disease
The cost to people living with inflammatory bowel disease is not only financial. Known as “invisible illnesses” (because they are not obvious to the naked eye), these diseases affect every aspect of a person’s life, such as career or study plans, or choices about when to start a family. Physically, those with IBD can endure severe abdominal pain, cramping, bleeding, diarrhoea, the inability to eat, and urgent and frequent access to toilets.
Flic Manning has lived with Crohn’s disease for over two decades. She suggests that for those living with inflammatory bowel disease who are hesitant or relatively new to sharing their experience, they should first gauge how much the other person understands about invisible illnesses.
“I usually pose the question, “Have you heard of invisible illnesses?” That will tell you if there’s a lot of stigma there – whether anyone’s actually heard about it. It also gives you a chance to educate them a little bit,” Manning said.
Leanne Raven, Chief Executive of CCA, the peak support and advocacy body for people living with Crohn’s disease and ulcerative colitis, says the hidden cost of silence means there isn’t the focus on these illnesses that there should be.
“People living with inflammatory bowel disease often don’t share their problems or experiences with others or ask for help when they need it because of the stigma surrounding the diseases. After all, it’s not a particularly ‘sexy’ illness or a topic of ‘polite conversation’.
“Increasing the understanding of these lifelong illnesses is vital, as the lack of awareness has a direct impact on investment in research to find a cure and support funding to provide access to the best available healthcare. This includes funding for multidisciplinary team-based healthcare professionals, which are proven to have a huge impact on people’s wellbeing and quality of life,” Raven said.
“Most IBD patients will have a gastroenterologist alongside their GP, but the majority don’t have an IBD nurse or other healthcare professionals like dietitians and psychologists as part of their treatment team. By improving access to these healthcare professionals, and by bridging the gaps between primary and secondary care, the chance of emergency hospital admissions, and associated costs, could be reduced,” she said.