Rotary Clubs are becoming more supportive, for which we are most grateful, in the work of the Crohn’s and Colitis NZ Charitable Trust(CCNZ).  As a Rotarian and a long-term Crohn’s patient I have been involved with the establishment of the Trust and thought it may be helpful to share more information about our Charity.
 
Our organisation
CCNZ was established in 2010 to respond to the needs of Crohn’s disease and ulcerative colitis patients across New Zealand. From that small but dedicated group of individuals, we have Crohn’s & Colitis Support Groups now operating in 14 regions throughout New Zealand. We work collectively toward our vision, offering support through fellowship, education, and participation in fundraising. Our vision is to empower patients and families, to demystify and normalise the disease and make those whose lives are affected by it more liveable.
What is Inflammatory Bowel Disease?
Crohn’s disease and ulcerative colitis are chronic autoimmune diseases that affect the digestive system, collectively known as Inflammatory Bowel Disease (IBD).  Most people with IBD are diagnosed in their formative and most productive years, between the ages of 15 and 35, causing disruption to their education, work, social and sexual lives.  It is estimated that nearly 20,000 New Zealanders live with Crohn’s disease and ulcerative colitis.
 
New Zealand has the highest incident rate of IBD in the world
A high incidence of Crohn’s disease was shown in the Canterbury New Zealand Study of 2004 16.5 per 100,000.  Ten years later in 2014 the age standardized rate for Crohn’s disease was 26.4 per 100,000 while the IBD rate overall was 39.5 per 100,000.  This new data shows we have one of the highest rates in the world and almost twice as many people diagnosed in 2014 than 10 years earlier.  An epidemic in the making?

How is Inflammatory Bowel Disease disabling?
The nature of IBD, associated stigma, and varying degrees of knowledge among health professionals often means that those affected do not have ready access to information and advice about the range of debilitating impacts IBD has on their lives. Public knowledge of the diseases to this day remains very low. The IMPACT study, a worldwide study on the effects of IBD, presented some stark figures demonstrating the debilitative nature of Crohn’s disease and ulcerative colitis. It showed that:
 
  • 85% of those affected have been admitted to hospital in the last five years as a direct result of their disease, 40% have had surgery, 75% have missed time from school or work due to their illness and 61% of young people have had their schooling significantly affected. These extended periods of time (often many months) away from school owing to IBD results in poorer educational outcomes and employment issues associated with high sick leave needs.
  • Close to 70% of those affected worried about the availability of toilets when they are away from home. This leads to embarrassment and social isolation for patients.
  • 40% have felt that their disease prevented them from having an intimate relationship owing to associated complications from the diseases.
  • 25% of patients noted that they have had people jest about their symptoms, which was felt to be more due to a lack of understanding than insensitivity. This further isolates patients.
While diagnosis can provide relief, it means that patients must come to terms with a potentially life-long chronic condition. Many people with IBD require hospital care, and multiple life-changing surgeries. Medication is necessary to treat and manage symptoms of IBD, and the high use of medications such as corticosteroids can lead to a range of side effects on top of symptoms. Complications from IBD can be life threatening.  IBD is more prevalent than Type 1 Diabetes yet despite this, IBD remains an invisible illness, shrouded in silence. There is no cure, no known cause, and little public understanding of the pain and suffering with which IBD patients courageously cope every day of their lives.
 
Dealing with inflammatory bowel disease (IBD) as a child is especially challenging. It means missed school days, hospitalisations, and, often, social isolation. That is why the Crohn's & Colitis New Zealand Charitable Trust (CCNZ) organised the first NZ based summer camp for Children & Teenagers with IBD in January 2015 in the Auckland region. This year’s camp was held at Living Springs in Christchurch and our next camp, in January 2017, will be at El Rancho on the Kapiti Coast.
 
As the camp is provided at absolutely no cost to the campers’ families, funding the camp has strained the organisation’s budget.  We are in dire need of funding. The annual budget for the 5-day camp is $70,000 and we are attempting to make up our deficit through individual fundraising. Our first year, 44 children attended, we had 48 children attend this year, and expect 60 children in January 2017.
 
 Many of these children have never been to camp due to their disease. Most have never met another child with the same illness. Our camp gives the children and teenagers a chance to experience fundamental elements of childhood – the ability to play outdoors, to learn independence, nourish self-esteem, challenge themselves physically, and be proud of their accomplishments. While an important part of the camp experience for these kids is their interaction with compassionate and fun volunteers, the camp allows these children to be campers, enjoy the outdoors and have fun instead of being “IBD patients”. Most importantly, it lets the children know that they are not alone. It is heart-warming to see the children interacting with their peers who understand what it is like to be on lifelong medication and live with this disease that no one wants to talk about.
       
The camp would not be possible without our team of 30+ dedicated volunteer staff and professional staff– many of whom are adults also living with IBD. These volunteers and professionals, including four gastroenterologists and five nurses, all give up their holidays and pay their own expenses to provide a safe environment for the children.
 
Every child deserves to feel like just that – a child – and we want to ensure that at the core of every child’s experience is positivity, optimism, and shared triumphs.  In a post-camp questionnaire 100% of the children responded that they would recommend the camp to other kids with IBD. Every volunteer has volunteered again for next year.
 
One child captured what the camp was all about:
“I enjoyed talking to other kids going through the same conditions as me because I didn't know a lot of people with Crohn's, because I am the only person in my family with Crohn's disease. It’s not that I want more people with Crohn's, but I loved knowing that I wasn't alone. I loved all the activity's not only because they were fun but because it made everyone trust one another more.”
 
The camp volunteers were the recipients of the 2016 Minister of Health Volunteer Award for Health Care Providers
 
Our vision for the future
Our vision is to empower patients and families, to demystify and normalise IBD in the eyes of the public and make life more liveable for those with the disease. We want to see patients that no longer feel socially isolated because of the embarrassing nature of their disease, and who are confident to participate fully in society and go about their lives.
 
We want to see people affected by IBD better supported in their communities, and become better advocates for themselves in their daily lives. We strive for these outcomes because we recognize that having a better understanding of their disease process will improve their ability to cope with their symptoms, and that well-informed patients experience improved health outcomes.
 
Brian Poole QSM
Rotary Club of Wellington North Inc and Trustee of CCNZ