UEG press release

Incontinence and crippling fatigue disrupts education and ruins job prospects for children with IBD

June 30, 2014

Incontinence and crippling fatigue disrupts education and ruins job prospects for children with IBD.

(June, 30, 2014) Debilitating daily symptoms of Inflammatory Bowel Disease (IBD) not only cause depression and psychological complications in young people, but also significantly disrupts their education and ability to stay at work. In response to a new study highlighting the impact of IBD on children, United European Gastroenterology (UEG), Europe’s largest digestive health body, is calling for quicker diagnosis and treatment to minimise the impact IBD has on childrens’ education and future employment.


The Impact of IBD Study1 recently published in the Journal of Crohn’s and Colitis, reveals that a quarter of young IBD sufferers across Europe, had to take over 25 days off work in the last year and almost a third (31%) had lost or had to quit their job.1 61% felt that their symptoms had affected their ability to perform to their full potential in an educational setting1 with many having at least 3 months absent from school per year2

Inflammatory bowel disease (IBD) is a life-long condition that causes inflammation in the intestine and is increasing in children with 30% of all IBD patients presenting with symptoms between the ages of 10 and 19.3  The two most common inflammatory bowel diseases are Crohn’s disease and ulcerative colitis, affecting around 70 in every 100,000 children4.

IBD can be difficult to diagnose with patients not always presenting with all the most common symptoms and the Impact of IBD Study also reports alarming delays in diagnosis with 17% of under 18’s waiting more than 5 years to receive a final diagnosis. This can further impact on the patients’ mental wellbeing and ability to plan for their future.

As well as having to cope with the debilitating physical symptoms, including faecal incontinence and abdominal cramping, IBD patients also experience sleep deprivation and continual or profound fatigue which can severely affect their self-esteem5 and a quarter of these patients also suffer from depression.6   In fact, researchers have found that fatigue in people with IBD is comparable to those suffering from cancer7 making it extremely difficult to perform in the classroom or remain at work.

Dr Nikhil Thapar, Consultant Paediatric Gastroenterologist and UEG spokesperson, explains, “Constant fatigue and the fear of abdominal pain and incontinence, can make it impossible for young patients with ulcerative colitis and Crohn’s disease to continue in education and hold down a job. It is essential that they are diagnosed and begin treatment as quickly as possible to help them manage their symptoms enabling them to stay at school and continue to work.  It is also important that they receive psychological support, to optimise their mental and emotional wellbeing.” 


1.     EFCCA Impact of IBD Study 2010-2011. Published J Crohns and Colitis. 2014 March 21

2.     Moody G, Eaden JA, Mayberry JF. Social implications of childhood Crohn’s disease. J Pediatr Gastroenterol Nutr 1999; 28: S43-5

3.    Problems in the diagnosis of IBD in children. H.A  Buller. Paediatric Gastroenterology and Nutrition, Academic Medical Centre, University of Amsterdam – The Netherlands Journal of Medicine.

4.    Kappelman MD, Rifas-Shiman SL, Kleinman K et al. The prevalence and geographic distribution of Crohn's disease and ulcerative colitis in the United States. Clin Gastroenterol Hepatol 2007; 5:1424–9.

5.    The Inflammatory Bowel Disease in Young People - The impact on education and employment report - downloadable from the www.crohnsandcolitis.org.uk

6.    Szigethy E, McLafferty L, Goyal A. Inflammatory bowel disease. Pediatr Clin North Am 2011; 58: 903-20.

7.    Minderhoud IM, Oldenburg B, van Dam PS, van Berge Henegouwen GP. High prevalence of fatigue in quiescent inflammatory bowel disease is not related to adrenocortical insufficiency. Am J Gastroenterol 2003 May: 98 (5): 1088-93.

Notes to Editors

About UEG

UEG, or United European Gastroenterology, is a professional non-profit organisation combining all the leading European societies concerned with digestive diseases. Together, its member societies represent over 22,000 specialists, working across medicine, surgery, paediatrics, gastrointestinal oncology and endoscopy. This makes UEG the most comprehensive organisation of its kind in the world, and a unique platform for collaboration and the exchange of knowledge.

To advance standards of gastroenterological care and knowledge across Europe and the world, UEG offers numerous activities and initiatives, including:

· UEG Week, the biggest congress of its kind in Europe, and one of the two largest in the world

· Courses, covering the latest science and clinical information in the field, including diagnosis, treatment and real-life examples

· UEG e-learning, an ever-expanding archive of over 11,000 documents and more than 1,000 multimedia items, as well as accredited e-courses

· Training Support, funding for innovative training and educational programmes, as well as international scientific and professional co-operations

· UEG Journal, published bi-monthly, covering translational and clinical studies from all areas of gastroenterology

· EU Affairs, promoting research, prevention, early diagnosis and treatment of digestive diseases, and helping develop an effective health policy for Europe

 Find out more about UEG’s work. Visit www.ueg.eu

*EFCCA (European Federation of Crohn’s and Ulcerative Colitis Associations) Impact of IBD Study

The IMPACT survey was commissed in 2010-2011 by EFCCA and involved over 5000 people with inflammatory bowel disease (IBD, ulcerative colitis or Crohn's disease), in 27 European countries.

To find out more about EFCCA and the Impact Survey visit: http://www.efcca.org/

To arrange press interview with Dr Nikhil Thapar, UEG Spokesperson and Consultant Gastroenterologist at Great Ormond Street Hospital, please contact Samantha Forster, details below

Press contacts  

Samantha Forster: samantha@spinkhealth.com

Tel: +44 (0)1444 811099

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