Inflammatory Bowel Disease (IBD)

The inflammatory bowel diseases, Crohn's disease and ulcerative colitis, are common, chronic inflammatory conditions that primarily affect young people in adolescence and early adulthood although the condition may persist, or begin, at later stages. IBD has increased in prevalence across Europe in recent decades.

Patient organisations are welcome and encouraged to use the resources found here on social media, websites, newsletters and all other channels.

View further information on IBD below. All information is taken from the UEG Survey of Digestive Health Across Europe, unless otherwise stated.

  • The two most common forms of IBD are ulcerative colitis and Crohn's disease

  • Adolescence or early adulthood are peak ages for the onset of IBD, though it may occur at any age

  • Ulcerative colitis is often equally distributed among men and women, whereas Crohn's disease is more common in women

  • A sharp rise in the incidence of IBD has been observed in many western countries since the early 1950s, making IBD one of the most common of all chronic inflammatory conditions

  • The combined prevalence of IBD has been reported to reach up to 396 per 100,000 people
  • Most patients will be treated with anti-inflammatory medication (e.g. 5-ASA, steroids), especially in patients with ulcerative colitis
  • Antibiotics may be used
  • Immunosuppressives (e.g. azathioprine, 6 mercaptopurine or methotrexate) are the main therapeutic agents
  • The use of corticosteroids should be limited
  • Biologicals are frequently used
  • Novel therapeutic agents are being developed and made available
  • For children and adolescents, growth and pubertal development are crucial
  • Nutritional therapy is beneficial to attain remission in children and adolescence
  • More research is needed to explore the benefit of particular diets
  • Surgery may be necessary in the case of strictures or fistulas in Crohn's disease
  • In ulcerative colitis patients, the entire colon may be removed, if there is no response to medication

Data in this section has been taken from European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA) and updated by UEG IBD experts.

The Impact of IBD on Young People
IBD Map
Paediatric IBD Across Europe


The IBD Journey.


Former EU Commissioner for Health, Tonio Borg talking about IBD - Video by EFCCA.


Living With IBD - Video by Crohn's and Colitis UK.


Patient Testimonials - EFCCA.

ECCO-EFCCA Patient Guidelines (March 2016)

ECCO has joined forces EFCCA in order to develop the ECCO-EFCCA Patient Guidelines. Two taskforces, one focusing on Crohn’s Disease and the other one on Ulcerative Colitis, were formed consisting of patients, physicians and nurses from different European countries. Together the groups developed and published patient guidelines for Crohn’s and Colitis in 30 different languages. 

Access the ECCO-EFFCA Patient Guidelines via the EFCCA website here.

Access the ECCO-EFCCA Patient Guidelines via the ECCO website here.


EFCCA IBD Leaflet

The EFCCA leaflet contains information about the objectives and activities of the organisation.

Download the leaflet here.


EFCCA Magazine

Read EFCCA's magazines, past and present, here.

European Patient Organisations

EFCCA

The European Federation of Crohn's & Ulcerative Colitis Associations is an umbrella organisation representing 33 national patients’ associations. EFCCA aims to work to improve life for people with IBD and give them a louder voice and higher visibility across Europe and beyond. 

W: www.efcca.org
E: efcca.ceo@gmail.com
T: @efcca
F: facebook.com/efccaSocialMedia

 

National Patient Organisations

ÖMCCV - Österreichische Morbus Crohn / Colitis Ulcerosa Vereinigung (Austria)
Fundación Mas Vida de Crohn & Colitis Ulcerosa (Argentina)
CCV-vzw - Crohn en Colitis Ulcerosa vereniging vzw (Belgium)
RCUH - Association Crohn-RCUH (Belgium)
BCUCA - Bulgarian Crohn’s and Ulcerative Colitis Association (Bulgaria)
HUCUK - Hrvatsko udruzenje za Crohnovu bolest i ulcerozni colitis (Croatia)
CYCCA - Pancyprian Association of Ulcerative Colitis and Crohn’s (Cyprus)
IBD Patients zs (Czech Republic)
CCF - Colitis - crohn foreningen (Denmark)
CCAFIN - Crohn ja colitis ry (Finland)
AFA - Association françois aupetit – AFA (France)
DCCV.e.V. - Deutsche Morbus Crohn / Colitis Ulcerosa Vereinigung  (Germany)
HELLESCC - Hellenic Society of Crohn´s Disease and Ulcerative Colitis Patients (Greece)
MCCBE - Magyarországi crohn-colitises betegek egyesülete (Hungary)
CCU-SAMTÖKIN - Crohn’s og colitis ulcerosa samtökin (Iceland)
ISCC - Irish Society for Colitis and Crohn’s disease (Ireland)
AMICI - Associazione per le malattie infiammatorie croniche dell’ intestine (Italy)
The Israel Foundation for Crohn’s Disease and Ulcerative Colitis (Israel)
ALMC - Association luxembourgeoise de la maladie de crohn (Luxembourg)
MACC - Malta Association of Crohn’s and Colitis (Malta)
The Crohn’s and Colitis New Zealand Charitable Trust (New Zealand)
LMF - Landsforeningen mot fordøyelsessykdommer (Norway)
J-elita - Polskie Towarzystwo Wspierania Osób z Nieswoistymi Zapaleniami Jelita (Poland)
A.P.D.I. - associaçao portuguesa da doença inflamatória do intestine (Portugal)
ASPIIR - ASociatia Persoanelor cu boli Iflamatorii din Romania (Romania)
UKUKS - Udruzenje obolelih od Kronove bolesti i ulceroznog kolitisa Srbije (Serbia)
SCC - Slovak Crohn Club (Slovakia)
KVCB - Društvo za kronicno vnetno crevesno bolezen (Slovenia)
ACCU - Asociación de enfermos de Crohn y Colitis Ulcerosa de España (Spain)
Mag- och tarmförbundet (Sweden)
SMCCV - Schweizerische Morbus Crohn / Colitis Ulcerosa Vereinigung (Switzerland)
Crohn's and Colitis UK (UK)

UEG Patient Affairs
Luke Paskins
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T  +44 (0) 1444 811099
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patientaffairs@ueg.eu