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Ahead of World IBD Day, Crohn’s & Colitis Ireland Releases Survey Results of 1,400 People with IBD

Ahead of World Inflammatory Bowel Disease (IBD) Day this Sunday May 19, Crohn’s and Colitis Ireland has released the results of a survey of almost 1,400 people with IBD.

There are approximately 40,000 people living with IBD in Ireland, with the two most common types being Crohn’s disease and ulcerative colitis. IBD causes inflammation, swelling and ulceration of the intestines, with the most common symptoms being urgent and frequent bowel motions, sometimes with blood, diarrhoea, and stomach cramps.

On World IBD Day (May 19), Crohn’s and Colitis Ireland will host a conference in the Kingsley Hotel, Cork city, with talks on dating and relationships, and on eating well with IBD. The event marks 40 years since the charity was established to provide support to people with IBD and their families. People can attend in person or join in the livestream – registration is free to members and open at www.crohnscolitis.ie

Comprehensive Survey
The research survey of people with IBD was undertaken by Crohn’s and Colitis Ireland between February and March 2024. Amongst the key findings were:

  • Getting diagnosed. One in seven (14%) had to wait more than a year between being referred to hospital and getting diagnosed. Separately, almost half (47%) had to go to A&E with symptoms before being diagnosed with IBD
  • Symptoms. When it comes to the worst symptom of IBD, a quarter of respondents (28%) noted abdominal pain and cramping, followed by a similar number for diarrhoea (26%), and one in five (20%) identifying fatigue and tiredness. On their worst day, one in two (50%) would visit the bathroom more than ten times, while two in five (45%) had found it hard to cope with IBD over the past year on a consistent basis
  • Flare-ups. One in two (52%) had experienced a flare of their IBD in the previous 12 months, with three-quarters (75%) of these having two or more flares. A substantial number had to attend hospital because of their flare
  • Stigma. One in three (35%) had experienced stigma or unfair treatment because of their IBD in the past 12 months
  • Facilities. An overwhelming majority of respondents (86%) believe shops/public spaces should do more to support people with IBD, with access to a toilet top of the list
  • Costs. One in two (53%) respondents estimated the annual cost of medications, GP and hospital visits to be in excess of €1,000, with three in five (62%) saying the cost of treating their IBD is a financial burden in their life. It is worth noting that IBD is not currently covered under the Long-Term Illness Scheme

Two-thirds (65%) of those surveyed were in full or part-time employment. Of these respondents, the following findings were noted:

  • Disclosing a diagnosis. Almost four in five (77%) say their boss knows about their IBD diagnosis, while one in four (23%) had not disclosed their diagnosis. Four in five (82%) had also disclosed their diagnosis to colleagues
  • Promotional prospects. Almost one in two (47%) said that their IBD had stopped them from putting themselves forward for promotion or additional responsibilities at work
  • Going to the toilet. One in four (28%) indicated that they do not find it easy to take a toilet break at short notice at work, and while the vast majority of employers had no issue with toilet breaks, 6% noted their employer had queried the need for such breaks. Of note, one in six (16%) said that a toilet was not easily accessible at work

Disappointing Findings
For Prof. Aoibhlinn O’Toole, consultant gastroenterologist at Beaumont Hospital, much work needs to be done to enhance access to diagnostics, improve symptom control and provide proper financial supports to patients:

“The survey findings around delays in diagnosis, as well as emergency presentation to access diagnostics, are very disappointing. Specifically, 47 per cent were diagnosed following attendance at the ED, with symptoms likely reflecting patients with more severe disease that can present as a medical emergency, such as acute severe colitis, bowel obstruction or a peri-anal abscess. However, I suspect also that for some patients, there was no alternative to access care except via the emergency room. The figure of 14 per cent waiting for more than a year to get diagnosed is also unsatisfactory and we must strive to improve referral pathways and access to diagnostics such as imaging, endoscopy and calprotectin stool tests for patients with suspected IBD.

“Almost half (45 per cent) reported difficulty coping with symptoms, which points to a significant number of patients struggling with disease control and poor quality of life, and this needs to be addressed. Overall, these results highlight massive delays in accessing care, a large cohort of patients living with poorly controlled symptoms, as well as having to deal with stigma, financial and occupational stress. Clearly much work needs to be undertaken to improve disease control and quality of life for patients living with IBD in Ireland, as well as recognising IBD as a long-term illness in terms of State financial support.”

Unnecessary Stress
For Amy Kelly, Chief Operations Officer at Crohn’s & Colitis Ireland, and who herself lives with Crohn’s disease, the survey results are not surprising:
“People living with inflammatory bowel disease, also known as IBD, know only too well that it is more than just managing physical symptoms; it’s about navigating a plethora of emotional and financial challenges too. Our survey shows that patients are shouldering a heavy financial burden, with many spending over €1,000 annually on medications, GP visits, and hospital care. This financial strain adds an additional layer of stress to an already very difficult situation. We know that IBD is a long-term illness but, inexplicably, it continues to be excluded from the Long-Term Illness Scheme. This needs to change urgently so that patients receive the financial support that they desperately need.

“The survey also showed the challenges faced by people with IBD in getting diagnosed, coping with distressing symptoms and flare-ups, and experiencing stigma. We need to ensure uniformity of access to specialised healthcare professionals such as dietitians and psychologists in addressing the needs of people with IBD. These professionals offer invaluable guidance in navigating dietary restrictions, managing flare-ups, and coping with the psychological impact of chronic illness. We need to see more compassion and support for those grappling with the challenges of IBD but, most of all, we need to see action.”

There is currently no cure for IBD, but early diagnosis and treatment can help to stabilise the disease and provide a normal quality of life. For more information on the supports and services offered by Crohn’s and Colitis Ireland, call the Support Line on 01 531 2983 (Mon/Wed/Fri, 9.30am to 12.30pm) or visit www.crohnscolitis.ie.


Image credit: stock image posed by model, courtesy Getty Images