An estimated 10,000 people who have inflammatory bowel disease (IBD) have lost or have had to leave jobs because of the often debilitative condition, according to a new report.
The report, published by the Irish Society for Colitis & Crohn’s Disease, recommends implementing a national strategy to address inadequate standards of care for people living with the conditions.
It says an estimated 20,000 people in Ireland have the diseases (collectively known as IBD).
IBD, it says, could cost the health service as much as €185 million a year, adding 49 per cent of people with it have lost or have had to leave jobs.
IBD is a long-term condition that typically develops in early childhood. It causes inflammation of the lining of the digestive tract, most often in the ileum (the last section of the small intestine) or the colon (the large intestine).
Symptoms include diarrhoea, severe abdominal pain, cramping, nausea, vomiting, reduced appetite and weight loss.
Risk of colorectal cancer
Crohn’s disease and colitis are under-recognised and associated with an increased risk of colorectal cancer and premature death.
The report, Gut Decisions – Leading Change to Improve the Lives of People With Crohn's and Colitis, combines two separate surveys and identifies a lack of dedicated specialist nurses as the greatest barrier to providing optimal care.
It says IBD is a growing issue, with a threefold increase in paediatric cases recorded in Ireland since 2000.
Minister of State for Business and Employment Ged Nash said the report will be very difficult to ignore and should help frame the debate around IBD service provision.
Mr Nash, who has Crohn’s disease, said he has noticed a “better but incomplete” level of public understanding of the disease since he was diagnosed 25 years ago. He said service provision was still “nowhere near” good enough.
Consultant gastroenterologist Dr Glen Doherty said patients with the condition suffer psychological stress in addition to physical pain. They find themselves “mapping out their lives from one toilet to the next”, he said.
He added that the personal cost of IBD, such as missed school, college or work translates into a social and economic cost for the State because it means thousands of people who would like to contribute are unable to do so.
Chairwoman of the Irish Society for Colitis & Crohn’s Disease, Patricia McArdle, said there is a “huge stigma” attached to the illness and that employers and schools need to be made more aware of the difficulties faced by people with IBD.