Launch of the Crohns and Colitis New Zealand

Fellow MPs - Dr Jackie Blue; Hon Ruth Dyson and Associate Minister of Health, Hon Peter Dunne.

Representatives of Abbot; advocacy groups; whanau and families, and people living with the impact of Crohns and Colotis disease.

I am proud to be part of such an important launch - and even prouder that it is taking place here at parliament.

In even our most recent history, the only people who would talk publicly about the humble toilet would be plumbers, gastroenterologists and some young boys.

Today we change all that.  

Today we gather here in support of the 15,000 New Zealanders living with inflammatory bowel disease - and the families who support them.

We are speaking out about a disease which affects people of all ages, but primarily afflicts young people in the prime of their life - with onset typically between the ages of 15 through to 35.

I want to acknowledge Brian Poole, the Chairman of Crohns and Colitis New Zealand, who has forced us to face the facts that New Zealand has one of the highest rates of Crohn's disease in the world.

And yet if I was to hasten a guess, it would be that most New Zealanders would have no idea how to spell Crohn's disease, let alone what it means.

Part of the complexity around chronic inflammatory bowel disease is that it simply isn't talked about as sufferers are often embarrassed by the stigma associated with the disease and its symptoms.

And so because of that, many people end up facing any range of symptoms such as abdominal pain, diarrhoea, rectal bleeding and weight loss without letting on.

I am really pleased that attending this launch today, we have Dr. Richard Gearry, Associate Professor at the University of Otago, and a leading researcher in the field of inflammatory bowel disease.

Dr Gearry has challenged us to remember that while medical therapies might help to alleviate some of the symptoms, actually the most critical thing we can all do is to raise awareness and provide ongoing and practical support to sufferers.

In launching this new national body today, we hope that it will bring out into the open some of the key issues around the disease - but also to promote communication across the motu for anyone wanting to know more about the disease, how they can get support, contact other sufferers or find the latest research.

I want to be quite upfront, in letting people know that Crohns disease can be both painful and debilitating.  

It causes inflammation of the bowel wall and it can present in a way of different ways from frequent diarrhoea, to general fatigue, to loss of appetite, abdominal pain, weight loss, fever and perianal fissures.

These are not exactly dinner time topics.

But there is also the increased risk of developing colon cancer, problems in other parts of the body such as arthritis or osteoporosis, and in some cases life threatening complications.

Inevitably when one starts looking at the disability of Crohn's disease and ulcerative colitis our focus becomes fixed on the diagnosis of symptoms and the impact on particular body parts.

But I want to share a great quote that a group shared with me yesterday, from a book called ‘The history of disability: a history of ‘otherness'.  The quote went like this:

"Black bodies, white bodies, male bodies, female bodies, young bodies, old bodies, beautiful bodies, broken bodies - right bodies and wrong bodies.  Historically our bodies have framed our futures and explained our past; our bodies write our stories.   But it is not our bodies per se which write the story; rather it is the way in which we as a society construct our bodies, which shapes our history and our future".

The establishment of the national body, therefore, moves past and beyond the interest in diagnostic imaging, laboratory tests and pathological examinations.

Today we concentrate on the concept of ‘otherness' by making the commitment to focus on what it is that brings us together.  

We know that one of the biggest burdens of Crohn's disease is the psychological, social and emotional impact.

I know something of what it is like to have a focus on the location of toilets; indeed many women who have borne children will no doubt be able to share stories about the fear and embarrassment that can come with an unanticipated sneeze or what is politely called as ‘an accident'.

For people with Crohns disease and ulcerative colitis, that fear can turn to constant anxiety and diminished quality of life.  The feelings of stress just make things worse and may trigger flare-ups or lead to depression for some sufferers.

So how do we write a new story?  How do we turn otherness and isolation to understanding and belonging?

I am delighted to reveal two very distinctive and innovative approaches to get us all going - literally and symbolically.

The first is the Toilet Map on both website and iphone application.  This is a funky concept which uses GPS and New Zealand maps to provide clear directions to the nearest toilet.

This is a novel approach which reminds us all that for many New Zealanders - and particularly Crohn's and Colitis patients, there can be times when they desperately need a toilet - and this map will help make that all the easier.  .

I can see other benefits of course for the toilet map - for travellers, with families with young children, for pregnant women, marathon runners and others.

The second key initiative we are launching today is ‘Art-a-loo' : a collaborative art exhibit with New Zealand artists creating outstanding works of art out of portaloos.   These works will be on display at Parliajment, at Te Papa and in the Midlands Park.

From Dan Tippett's approach looking at the iconic longdrop to Megan Raynor's monster toilets to Pamela Ward's recreation of the toilet as a throne, there are some fantastic messages included in this exhibition which raise awareness of the daily challenges Crohn's and Colitis sufferers face.

I want to really thank all of the artists who have so generously donated their time and talent and the corporate sponsors have contributed all supplies to make this possible.

Now it's your turn!  In fact - now it's the turn of all New Zealanders, to help to do their bit, by logging into trademe and competing in the auction to buy one of these one-of-a-kind pieces.

Of course while these initiatives are great fun, they provoke us to think about the wider impacts of inflammatory bowel disease; and to evaluate whether we have all the support, research and education in place to respond to the every day needs people face.

I congratulate everyone involved in this quirky but quintessential launch - and encourage all of us to shape a future in which those with Crohn's disease or colitis, receive all the support and empathy that they could ever call on.  Thank you, again, for the opportunity to share such an important day.