Crohn's board wants national strategy

Kate Linterman. Photo by Peter McIntosh.
Kate Linterman. Photo by Peter McIntosh.
Kate Linterman does not want to be "that girl with Crohn's" and knows better than anyone how embarrassing talking about toilet issues is.

However, she is willing to talk publicly about the disease which sends her to the toilet regularly and has seen her have "more surgeries than I can remember", to encourage people to talk about those sorts of issues.

Miss Linterman is one of about 15,000 people with the incurable form of chronic inflammatory bowel disease that causes symptoms such as abdominal pain, diarrhoea, rectal bleeding and weight loss.

"It's quite stressful to go places not knowing if there is a bathroom available - that's the reality for every colitis and Crohn's sufferer."

Yesterday a new national body, Crohn's and Colitis New Zealand, was launched to support those people.

They also debuted a toilet map for iPhones and an art exhibit "Art-a-loo".

Miss Linterman (23) said she did not really like to talk about the condition which she has had since she was a small child.

"I don't want to be that girl with Crohn's disease. I don't like to make a big deal out of it or use it as an excuse, but I do think it is important to make people aware there are people like me and we can live a normal life."

She wanted people to be more accepting of people who had to rush off to the toilet, to show it was not a big deal.

Thanks to a "cocktail" of four drugs and a good exercise programme, her condition was well under control and she was able to live a "normal" life, she said.

It had enabled her to complete her bachelor of science with honours and get a job as University of Otago research assistant.

"I can work full-time and I'm not in and out of hospital. I value that."

It was not always that way.

She missed a lot of schooling due to hospital visits to have parts of her bowel removed or to treat complications of the disease.

"At my worst, I could operate the IV machines at the hospital better than the nurses."

The disease was frustrating as people had no control over it, she said.

"You can eat right and look after yourself, but it can hit you just because."

Crohn's and Colitis Otago board member Henriette Rawlings said the organisation wanted a national strategy and national standards for the treatment of the disease to be developed.

"The disease basically has a lifelong impact but that can be minimised if managed well, otherwise it can have serious effects."

Dunedin Hospital gastroenterologist Dr Michael Schultz said inflammatory bowel disease carried great stigma, because people did not talk about their bowel movements.

In his home country, Germany, discussion of bowel movements was more normal than in New Zealand.

While not exactly "dinner-time conversation", it did not bear the stigma of countries with a more "Victorian" approach to delicate health matters.

Too often sufferers, and parents of children with the disease, took too long to get a diagnosis, prolonging pain and ill health.

A national strategy was needed to ensure action to life-changing drugs such as infliximab was equal across New Zealand, he said.

Ms Rawlings, of Dunedin, successfully fought for the drug to be funded in Otago, for her daughter, and for other sufferers.

The drug, which costs about $30,000 a year, is not funded by Pharmac, and it is left to individual DHBs' discretion whether to fund it.

 

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