Urgent investment is needed to provide essential resources for the 20,000 people in Ireland who are living with inflammatory bowel disease (IBD), it has been claimed.

IBD refers to the conditions Crohn's disease and ulcerative colitis. These conditions have similar symptoms, including abdominal pain, diarrhoea, fever, loss of appetite and weight loss. Left uncontrolled, symptoms may ‘flare up', causing severe abdominal pain and frequent visits to the bathroom.

If parts of the colon become too inflamed, patients may need surgery and a life-long colostomy bag. There is no known cause or cure for IBD.

According to the Irish Society for Colitis & Crohn's Disease (ISCC), the number of people with IBD is on the increase. In Ireland alone, around 1,000 new cases are being identified every year.

Some 450 children are affected, with around 100 new cases per year. Between 2002 and 2012, there was a 90% increase in cases of childhood IBD.

The ISCC has launched a manifesto which contains a number of recommendations in relation to the treatment of people with IBS. It is also calling on the Government to develop a national strategy for IBD.

"With the new Government's commitment to a fresh approach to the health service, it is time for a priority to be placed, for the first time, on the 20,000 people in Ireland who live with Crohn's or colitis. We desperately need a national strategy to fix the significant gaps that we see in terms of diagnosis and access to treatment," commented ISCC chairperson, Bruno Lucas.

He pointed out that IBD has a ‘real, tangible effect' on the economy, with as many as 500 sufferers having to give up work every year as a result of the disease.

He said that one of the core aims of a strategy would be the idea of equitable access to IBD nurses and multidisciplinary care teams.

"All IBD patients should have access to a specialist nurse who understands their needs and can provide the right kind of support when they most need it. We are calling on the Minister for Health, and all politicians, to come together to help us address this issue," Mr Lucas said.

This was backed up by Prof Padraic MacMathúna, a consultant gastroenterologist at the Mater Hospital in Dublin, who also emphasised the key role of specialist nurses.

"Although we have seen improvements in management and outcomes of IBD due to advances in diagnostics and surgical care, the real need and the central plank in this area is that of securing additional specialist nurses. More specialist IBD nurses will facilitate care excellence, help to deal with problems early and give the psychological and emotional support that patients, especially young patients, urgently need," he said.

He noted that IBD ‘is more common than is generally recognised', especially among younger people.

Clara Caslin is a 22-year-old student who was diagnosed with Crohn's disease at the age of 18, although she had symptoms from the age of 12. She explained that when symptoms began, she did not want to acknowledge that there was a problem and put off seeking help until she could not walk or eat properly. She had to undergo bowel resection surgery in the last few years, having recovered from two life-threatening episodes.

"I was in constant pain and tried to pretend that nothing was wrong but it was clear to see that I was rapidly deteriorating. Perhaps if I had gone for treatment at an earlier stage, I could have avoided surgery.

"The impact on someone like me of being able to talk to a specialist IBD nurse is enormous. Interacting with someone, even over the phone, can really make a difference. If I didn't have the support of my IBD nurse, I would feel a lot more vulnerable," she explained.

She added that there is a ‘huge need' for more awareness about IBD in Ireland.

"The number of people suffering from IBD is increasing and I feel that there are so many undiagnosed cases because of the lack of awareness. I had never heard of Crohn's disease before I was diagnosed and I think if I had any knowledge about it that I wouldn't have been so afraid to address my illness in the beginning."

The ISCC Manifesto calls for a number of things, including:
-A rapid referral pathway from primary (GP) care
-Additional specialist IBD nurses and more gastroenterologists
-Ready access to vital psychology services and dietetics support
-The development of community-based empowerment supports aimed at improving the lives of those affected, such as chronic disease self-management training.

The ISCC made its call to coincide with World IBD Day (May 19). For more information on the society, click here