The first major survey of nearly 1,000 young people with Colitis and Crohn's Disease reveals that their lives are dramatically impacted by these life-long Inflammatory Bowel Diseases (IBD).
Carried out by NSM Research for the National Association for Colitis and Crohn's Disease (NACC), the survey highlights a huge need for improved support and information for young people aged between 16–29 years to help them better understand and manage their conditions.
With an average age of diagnosis of just 20 years, more than 80% of the 974 responders reported their most serious symptoms as being diarrhoea, pain and severe tiredness. Such disease flare-ups were reported as occurring at least once in the previous year by 75% of the young responders, and 24% had suffered more than four flares in the last year. These serious levels of illness resulted in 33% of responders being admitted to hospital and a similar proportion undergoing major surgery.
Not surprisingly the survey underlines the profound effects that Colitis and Crohn's Disease can have on the education, careers, social lives and relationships of young people. More than 20% stated that their disease impacted negatively on their education; 35% reported that it seriously affected their career; 51% their social life and 17% of responders felt that it seriously affected their ability to find a partner.
A less obvious consequence of Colitis and Crohn's Disease is the impact of isolation brought about by needing to be near a toilet combined with the symptoms of pain and tiredness. In fact, 43% of young people reported feeling seriously isolated at the time of their diagnosis and 20% considered that they are still affected by isolation today.
As a result of these survey findings and further research carried out amongst young Colitis and Crohn's patients by NACC, the medical charity is responding to their particular needs for information and improved support by launching a new outreach campaign – "IBD and Me".
Designed to inform and help young people who are often isolated by their disease, "IBD and Me" takes the form of a new website area with links to helpful information from NACC, and a discussion board that enables young people to share feelings and experiences with others of their own age. The web address is www.nacc.org.uk/ibdandme
NACC is aiming to reach as many young people as possible, starting in Colitis and Crohn's Week (16–24 June) with free membership for 16–18 year olds and the launch of "IBD and Me" posters in hospitals and pharmacies nationwide and media campaign. In September, the campaign will be extended to schools, colleges and universities. The charity aims to increase awareness and understanding of the extreme difficulties faced by young people, not only in coming to terms with their adolescence, but also learning to cope with the distressing day-to day symptoms of IBD and the unpredictable disease flare-ups that can occur.
Richard Driscoll, NACC Director, explains, "Many young people haven't had the chance to meet others who have the same illness and we can see from the survey that they often feel very isolated in their experience of IBD. NACC can reassure them they are not alone and provide the means for them to be in touch with other young people. The information and contacts they find through NACC can help greatly in adapting to life with Colitis or Crohn's Disease."
NACC is launching a national information and poster campaign during Colitis and Crohn's Week to publicise "IBD and Me". Hospitals, schools, colleges and universities are all being asked to place the NACC Campaign posters in prominent positions, and, says Richard, "The support of everyone in spreading awareness of our campaign will be important in helping us reach out to as many young people as possible."
Young people can log onto www.nacc.org.uk/ibdandme or call the Information Line: 0845 130 2233 (daytime) or NACC-in-Contact Line: 0845 130 3344 (afternoons and evenings).