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.”
