Young Kiwis forced under the knife

Dana Smith who suffers from Inflammatory Bowel Disease
Dana Smith who suffers from Inflammatory Bowel Disease Photo credit: Supplied

This summer, 25-year-old nurse Dana Smith is trying to find the courage to wear a bikini to the beach. "It'll be quite scary," she says. "I'll be worried everyone is looking at me."

She wishes she was just self conscious about her weight, or lack of tan. But Dana has had her colon removed, and now a bag collects her body’s waste.

"It's literally a beige-coloured bag stuck onto my stomach full of poo," she says. "It's quite hard to tell people about it sometimes."

The surgery was a drastic last resort after years of pain from Inflammatory Bowel Disease (IBD). But there was another option: a modern medicine, "Stelara", may have helped Dana, but it is not funded in New Zealand. At more than $5000 a vial, she couldn't afford to pay for it herself.

"Sometimes I do think 'what if I waited for a year or two - when it is hopefully going to [be funded]?'" she says.

"That's always a thought in the back of my mind. 'What if I gave it a chance?' It would have been nice to wait until after I'd had children. Having so much pelvic surgery, the risk ofbeing infertile is high.

"But I just got to a point when I was so sick. I wasn't eating very much in fear of the pain that would come with eating. At my lowest I was down to about 45kg. That was pretty scary. My eyes were really inflamed. I’d get rashes on my body. Joint pain. Your whole body is suffering so much."

Dan a Smith who had her colon removed
Dana Smith says surgery was a drastic last resort. Photo credit: Supplied

New Zealand has the world's third highest rate of IBD - Crohn's disease and ulcerative colitis - painful, incurable conditions which affect the digestive system. Young people are particularly affected.

Jessica Port, 32, says she feels like sheds lost the last decade of her life. She's desperate to try this medicine before she's forced to have surgery like Dana.

"It could give me a quality of life. I'm over being just so useless. I can't do much. I'm a letdown to people because I can't say I'm ok until the day. Because every other drug has failed it's kind of the last hope for me."

Jessica Port who suffers from IBD
Jessica Port, 32, says she feels she has lost the last decade of her life to dealing with her condition. Photo credit: Supplied

Gastroenterologist Dr Malcolm Arnold says a "substantial number" of IBD patients are resistant to the drugs New Zealand currently funds. He says it's "immensely frustrating" that this modern medicine and others are only available to those wealthy enough to pay for it themselves.

"You just feel so sorry for these poor people. You've found out what is wrong, you've diagnosed it and done everything you can therapeutically and you just don’t have anything left… all you can do is sympathise and try to patch over the bits you can."

One of his patients has just started taking Stelara, after the drug company granted her compassionate access. Dr Arnold says it won’t work for everyone - but she’s already seeing a difference.

"Her blood tests have shown her inflammation response has dropped off dramatically, she's feeling well. She's finally passing solid stool - which sounds unimportant but it's very important!” he says.

"She was previously going 12 times a day, including overnight, and she's now passing one firm stool a day so that's a major achievement, and a good indicator things are working."

Jessica Port wants the chance of a normal life
Jessica Port says she wants to be free from pain and not have her condition dictate her lifestyle. Photo credit: Supplied

PHARMAC is looking at funding four medicines to treat IBD, and extending the use of three others, but can’t say when a decision will be made. The agency weighs up factors including the relative health benefits, amount of funding available, and success of negotiations with suppliers.

"Having a fixed budget means we need to make careful and considered funding choices in the interests of all New Zealanders," its Director of Operations Lisa Williams says.

The chair of Crohn's and Colitis New Zealand, gastroenterologist Dr Richard Stein, says that PHARMAC clearly needs a bigger budget.

"There's not enough money being given to new drugs. We can't be this far behind the rest of the world in what we offer our patients. These drugs are expensive, but how do you put a price on giving a young person a permanent ileostomy when it possibly could be avoided? It affects their body  image and their whole lifestyle."

Jessica Port is hoping for a decision before time runs out for her, and surgery is inevitable. She just wants the chance of a normal life.

"To not be in pain. To not have to worry every time I go out where the toilets are. To have energy again. And then to have a job."

This story was created for Medicines NZ.