World Inflammatory Bowel Disease Day, May 19th
Tuesday 19th May is designated World Inflammatory Bowel Disease Day.
Across the globe 5 million people live with Crohn’s disease and Ulcerative Colitis, conditions known as inflammatory
bowel diseases (IBD). IBD leads to inflammation of the intestine, and is characterised by periods when the disease is
active, and other times when it is inactive and patients may feel perfectly well. Between 30 and 50% of patients will
require surgery because of their IBD during their lifetime. If left untreated or is badly managed, IBD can lead to colon
cancer.
Based on data from studies undertaken in Canterbury in 2004-5, and more recently in Nelson-Marlborough New Zealand tops
the league table for IBD worldwide, with an estimated 15,000 adults and children with these chronic bowel diseases.
The diseases are most commonly diagnosed in the second and third decades (13-30) just when people are approaching their
most productive years and contemplating starting families. IBD causes significant direct and indirect costs and is an
enormous economic and social burden on the country as well as on those individuals with the illness.
A recent survey of the effects of IBD on patients’ lives undertaken in Europe and replicated in New Zealand (the IMPACT
study) found that the majority of patients felt tired, weak or worn out even when their disease was thought to be
inactive. Over half felt unable to reach their full potential in education and a quarter took more than 25 days off work
in the previous year due to their IBD. Additional complaints pertinent to New Zealand were limited access to specialist
care and the long delay to a concrete diagnosis.
In New Zealand until 2009 there was patchy and limited access to modern drug treatments but, with the cooperation of the
New Zealand Society of Gastroenterology, the patient advocacy group Crohn’s and Colitis New Zealand and the government
medicines agency PHARMAC, treatment options for those with severe disease have improved rapidly in the last 5 years.
Still, we remain behind most Western health care systems with a limited choice of medications.
Furthermore, in contrast to other countries, New Zealand has been slow to introduce IBD Nurse Specialists to help
Gastroenterologists care for these sometimes complicated patients. There are currently just 12 IBD Specialist Nurses
across the 20 District Health Boards and none of them are full time, so patient access to their support remains patchy.
Yet all is not doom and gloom. This year the first Activity Camp for children with IBD took place outside Auckland. The
camp was organised by the patient-support group Crohn’s and Colitis New Zealand (http://crohnsandcolitis.org.nz/) and it
allowed 48 children from all over New Zealand, aged 10 to 19 years, to meet together for 5 days of fun.
Innovative NZ-led research into both the causes of IBD and smart-phone based methods of monitory disease activity are
underway supported by the New Zealand Society of Gastroenterology and the Gut Health Network
(http://www.guthealthnetwork.com).
One in 350 New Zealanders has IBD.
Chances are you know someone personally with IBD. Don’t be shy to show them your support, especially on Tuesday 19th
May.
ENDS