Christchurch's Sam Sword was swallowing up to 26 pills a day to manage his chronic pain after being diagnosed with Crohn's disease.
"It was like trying to fight a forest fire with a garden hose," he told The Press.
"The pain was always there."
Sword's painful journey began in 2006, when the 32-year-old was rushed to hospital with severe abdominal pain.
Doctors believed his appendix had burst, but after "dozens of tests", Sword was diagnosed with Crohn's disease.
Sword spent the next few years in and out of hospital in agonising pain.
He has since undergone two surgeries - one just five weeks ago - and had 46 centimetres of inflamed bowel removed.
Sword now feels like he can finally manage his disease.
"I am now in remission. I will still have flareups but I finally feel like I am getting somewhere."
Sword, who is one of 15,000 suffers of Inflammatory Bowel Disease (IBD) in New Zealand, has turned his journey into a photographic exhibition for the unveiling of a new survey on IBD.
The Impact Survey asked New Zealanders suffering from IBD about their relationships and daily life, as well as access to healthcare and services.
Experts say the results of Impact, which were unveiled in Wellington last night, have highlighted gaps in healthcare.
Christchurch associate professor Richard Gearry said the survey had given experts a "good insight for the way people were presenting with the disease. There are some really interesting results. We tend to think of IBD as an outpatient disease, but Impact shows a lot of people need emergency care and surgery and are spending time in hospital."
Nearly half of all patients required major medical invention or invasive surgery and a high number required emergency care before diagnosis.
Crohn's and Colitis New Zealand chief executive Julia Gallagher said Impact demonstrated how important it was for earlier diagnosis. "We believe this highlights the need for increased knowledge of IBD in medical students and GPs as well as IBD nurse specialists supporting gastroenterologists in every district health board."
The survey also showed the true "impact" of IBD on people living with it, Gearry said. "These are often young people embarking on careers and travels and relationships and IBD can be very disruptive to those things. This isn't just about statistics, it's about quality of life."
One in four New Zealanders with IBD had lost or quit a job because of IBD, the survey showed, and almost half of those surveyed felt IBD had negatively affected their career path, income and/or earning potential.
Sword hoped that one day there would be more awareness about IBD.
"I would like employers to be more understanding about IBD, like they are for other diseases like cancer. Sometimes we may need days off because of the disease."
WHAT IS IBD?
Inflammatory bowel disease (IBD) is a group of serious chronic, inflammatory diseases of the gastrointestinal tract, the most common of which are Crohn's disease and ulcerative colitis.
IBD is associated with progressive bowel damage and significant cumulative disability - which may lead to life-threatening complications, such as bowel perforations, surgery and hospitalisation.
New Zealand has one of the highest incidences of IBD in the world
- Nearly two thirds, 64 per cent, of people needed emergency care before their diagnosis of IBD.
- A quarter wait more than five years for IBD diagnosis.
- Over half, 57 per cent, of people with IBD have been hospitalised in the last five years.
- Half of those with IBD have had surgery due to their IBD or IBD-related issues.
- Half of people with IBD describe their disease as being active.
- Just over two thirds, 69 per cent, of those are largely unaffected in everyday life by IBD while in remission.
- © Fairfax NZ News
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