Lifting the Lid on IBD
Results of new Irish survey show the impact of Inflammatory Bowel Disease (IBD) on quality of life
(Dublin, 28th November 2011): 48 per cent of people living with inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, have confirmed that their quality of life is negatively affected by the disease . This was just one of the findings from the IMPACT survey that was conducted by the Irish Society for Colitis & Crohn’s, a member of EFFCA, which represents patients living with IBD to provide an overview of the “real impact” of IBD on patients lives. The research which was launched by Channel 4’s Dr Dawn Harper covers not only medical issues but also additional aspects such as quality of life, education, employment, relationships and others. The IMPACT survey was supported by the global health care company Abbott.
Crohn’s disease and ulcerative colitis are chronic inflammatory, non-infectious conditions involving the digestive system . Symptoms in both illnesses may include abdominal pain, diarrhoea, vomiting, rectal bleeding and weight loss.
The IMPACT survey is owned by the European Federation of Crohn and Colitis Association (EFCCA), which aims to uncover new aspects of the true nature and consequences of living with IBD, seen from a patient perspective. It is the biggest of its kind to date with more than 4000 respondents across 14 countries,120 surveys were completed by Irish patients.
The research clearly demonstrated that during a flare up, the following symptoms were experienced at least daily by respondents:
- 71 per cent experienced rectal bleeding
- 94 per cent experienced abdominal cramping
- 98 per cent felt tired, weak or worn out
- 93 per cent experienced urgency of bowel movements
- 94 per cent experienced diarrhoea with 20 per cent of people suffering with more than ten episodes of diarrhoea every day
These clinical symptoms have wide-ranging impact on quality of life with 71 per cent claiming that during their recent flare up, they were more likely (than not) to have had to cancel or reschedule an engagement or meeting because of their symptoms.
77 per cent had to take time off work in the past year and 33 per cent of people reported having had more than 25 days absence from work due to IBD. Within the workplace, 20 per cent claimed that they had been the victim of complaints or unfair comments about their performance and nearly a quarter suffered from discrimination as a result of their condition. 39 per cent also blamed their condition on causing them to feel less motivated at work.
Nine out of ten of respondents were hospitalised in the past five years because of their IBD condition.
Prof. Colm O’Morain, Consultant Gastroenterologist, Adelaide & Meath Hospital, Dublin said, “The symptoms associated with Crohn’s disease and ulcerative colitis can be quite debilitating, particularly during a flare. Excessive diarrhoea and the associated symptoms can leave people feeling weak with quite significant pain associated with abdominal cramping but each flare also has lasting damage which can lead to further complications in subsequent years. There are newer medications available now that can better manage the condition and help to increase remission between flares but earlier diagnosis is key to ensuring the best possible clinical outcome.”
Speaking at the launch, Dr Dawn Harper of Channel 4’s Embarrassing Bodies said, “Crohn’s disease and ulcerative colitis are the sort of conditions we cover on Embarrassing Bodies due to the sensitive nature of the symptoms. I would urge people to talk about their condition with friends, family and even employers to help lift the lid on IBD and reduce some of the stigma and anxiety that people experience due to the secrecy around their condition. If you have not been diagnosed with Crohn’s disease or ulcerative colitis but think that you recognise any of the symptoms which include rectal bleeding, abdominal cramping, urgent bowel movements or diarrhoea and tiredness, don’t sit on your symptoms - speak to your GP as soon as possible.”
In response to the research findings, Abbott has established the IBD Action Group which consists of a multi-disciplinary team of healthcare professionals working in the area of IBD. The IBD Action Group will now review the research findings and make recommendations on next steps to help improve the impact of IBD on people living with the conditions.
Geraldine Murphy, Chairperson, Irish Society of Crohn’s and Colitis, said, “This research is vitally important to highlight the impact of Crohn’s disease and ulcerative colitis on people living with the condition day-to-day. IBD is often described as a silent disease due to the fact that there are very few external symptoms. Stigma associated with the condition means that people are less inclined to discuss their condition, particularly within the workplace. We will be using this research to highlight both the impact of the condition but to also to help inform those who run services in this area on the supports required for people living with the condition in Ireland. Please visit our website www.iscc.ie for further information on IBD.”
Crohn’s disease and ulcerative colitis are both chronic auto-immune illnesses that affect an estimated 15,000 people in Ireland and for which there is no known cause or cure . Initial onset of both illnesses can occur at any age but is usually first diagnosed in young people between the ages of 15 and 40. Early diagnosis is a key factor in ensuring that a correct treatment pathway is established to help minimise the long-term damage caused.
For further information on Crohn’s disease and ulcerative colitis, speak to your GP or visit www.iscc.ie.