Suffering in Silence - The Psycho-Social Impact of IBD on Young People

Regular readers will know by now that our survey of 1,100 young people in early 2013 looked at many aspects of life as a teenager/young adult with Inflammatory Bowel Disease (Crohn's and Colitis).

We looked at the way that you interact with your healthcare team and then asked them what they thought about communication. We also delved into the educational impact that IBD can have when diagnosed early in life. We even looked at what the average IBDer might be like based on the results of the survey.

Now there's a new Report entitled, “Suffering in Silence - thePsycho-Social impact of IBD on Young Lives.”

For many of you with IBD, Christmas and New Year won’t have been a time of fun, parties and celebrations.

The new Report revealed that a third of young people living with IBD (inflammatory bowel disease) are seriously isolated and fearful for their futures as a result of their overwhelming symptoms. 

Welcoming the publication of the new Report, Crohn’s and Colitis UK CEO David Barker explains, “Too many young people in the UK are suffering in silence. These findings remind us all that a diagnosis of IBD brings with it not just a medical impact but a very significant psychological and social impact.

Thirty two per cent (32%) of the young people responding to our survey live isolated, limited lives as a result of their acutely embarrassing and sometimes life-threatening symptoms. Greater awareness, understanding and acceptance of these devastating conditions amongst teachers, education professionals and within the general public is what we need if we are to begin to reduce some of the challenges they face.”

 The key findings from the survey show:

·         One third of young people felt that their IBD affected their ability to attract a girlfriend or boyfriend and that the illness had negatively affected a long-term relationship with a partner.

·         Many young people with IBD can suffer with particularly aggressive disease, involving multiple surgeries which can negatively impact on their relationships and their futures, including their potential fertility.

·         20% stated that their symptoms of extreme tiredness made it hard to have a social life.

·         11% of the young people stated their future fertility was their main concern, often as a side effect of multiple abdominal surgeries.

·         With the added challenge of reduced access to fewer public toilets, more than 1 in 10 were fearful of being incontinent while out. 

·         One in ten was unable to tolerate alcohol, adding further pressure to social situations at college/work. 

Every year an estimated 10,000 young people are diagnosed with an inflammatory bowel disease (IBD), the collective term for Crohn’s Disease an

d Ulcerative Colitis. These life-long, potentially life-threatening bowel conditions are on the increase and in young people in particular, IBD is often manifest in more aggressive forms.

The wide-ranging, negative impact on a young person’s life is summed up by one survey correspondent who wrote “I don’t just need medication - I need some help to cope with being ill. It is destroying me psychologically.”

Summing up David Barker states “We have a significant job ahead of us if we are to reduce some of the psycho-social challenges faced by young people with IBD. Most importantly, we all have a part to play in helping and this report begins to give us a greater understanding of the everyday challenges that young people face, and the impact this can have on them, for the rest of their lives. Crohn’s and Colitis UK offers support from trained volunteers on our helpline 0845 130 2233.”

You can download the Report on Me and IBD website www.MeandIBD.org.uk or from the charity’s main website www.crohnsandcolitis.org.uk