A survey finding those with inflammatory bowel disease (IBD) often suffer unnecessarily due to slow diagnosis has rung true with Wellington student Stacey Stewart.
A Crohn's and Colitis New Zealand's (CCNZ) Impact survey found nearly half of all IBD patients required major medical invention or invasive surgery and a high number required emergency care before diagnosis.
Painful symptoms often went misdiagnosed until they became so severe the patient ended up in hospital, the survey found.
It was important that the disease be diagnosed much earlier, CCNZ chief executive Juila Gallagher said.
The findings mirrored the experience of Stacey Stewart, 21, who found out she had ulcerative colitis in 2009.
She traced her problems back to her hometown of Gisborne, when she was 13 and would always get sick.
"It was always just 'oh Stacey I think you're just a stressful person and you make yourself sick about these things'."
But by the time she was 17 she had two trips to hospital in a month.
The second time was the worst.
"I didn't want to go back to hospital because I hated it the first time around.
"The week before I was exhausted as I was only sleeping in 15 minute intervals because I would have to go to the bathroom.
"By the time I went to the hospital I was in bad shape and hallucinating I was so delirious."
Her IBD forces her immune system to attack itself and, as a consequence, develop painful ulcers in her colon.
It causes chronic fatigue, diarrhoea and severe abdominal pains, among other things.
In the four years since the diagnosis she has been on every available drug in the public system for the disease.
She was now participating in a clinical trial, but after that her only option left was surgery.
"My body has built up an immunity to all the different drugs available that I will eventually have to have it."
More than just statistics, the survey also showed the true ''impact'' of having IBD on people's everyday lives, Christchurch associate professor and one of the country's leading experts on the disease, Richard Gearry, said.
''These are often young people embarking on careers and travels and relationships and IBD can be very disruptive to those things.''
Stewart agreed with this and said you were forced to re-evaluate your life post-diagnosis.
"Your life changes completely and you have to scale back some of your plans like travelling or where you want to live based on the medical facilities available.
"I could never live in a small town in New Zealand."
- © Fairfax NZ News
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