“Then a bit later it got to, ‘would you be able to go on a panel they are putting together’?”
The panel is to look at the future of the therapists organisation.
“I think they realised they had no ostomates on, but only had nurses and doctors. [The council] covers the whole world, they’ve got people everywhere, so I thought, ‘yeah, that’s fine, I’ll do that’.
“Then I got an email saying would I co-chair a one-hour discussion on ostomy, so I said ‘that’s fine, I’m quite happy to do that’.”
The final request was for Richard to be the New Zealand flag bearer — and being the only one from New Zealand, he agreed.
There will be one other member of the international association at the congress — a delegate from Iceland.
“Hopefully, we can do our best to put the patients’ perspective to everyone else because far too often, the end user is the last person to be consulted on anything.”
He says he would like to see ostomates consulted at the earliest stage of any changes.
“If we can get in at the very start, hopefully we can expand the ostomates’ presence within the organisation which is massive.
“It’s one of those things where you’ve got to start off small and talk to as many people as possible and the whole aim of the exercise of going is to try and draw people together so everyone works together.”
After the congress, Richard will put together a report to be circulated among ostomy associations
“Hopefully, as many people as possible who aren’t in associations will still be able to get a copy of the whole thing too.
One of the sponsors that has made the trip possible is the Cancer Society.
“I promised them I would go and see them and go through things with them.”
Next year the Western Bay association is running a major seminar and that will be another opportunity to share his experiences.
“Hopefully, by doing that we can get information out and try and bring in nurses organisations in the area as well and get the information out to them.”
There are about 2500 ostomates in New Zealand and about 6 million worldwide.
“And it’s getting worse.”
Richard became an ostomate after a cancer diagnosis and surgery in the mid-1990s.
A stoma is an opening on the surface of the abdomen that has been surgically created to divert the flow of faeces or urine. People who have had stoma surgery are known as ostomates.
“I’d had had ulcerative colitis — inflamed intestine basically — since I was 19. I was always told this is going to go to cancer one day and I always knew when things turned to custard I had to do something real quick.”
After about 30 years of living with ulcerative colitis, things did turn to custard.
“I was living on an orchard in Paengaroa. I walked up the slope from orchard to the house and I felt really, really knackered.
He already had an appointment booked with a specialist on the following Friday
“He looked at me and said ‘you look anaemic’. He examined me and said, ‘I think you need some blood tests’.”
He had those done on Monday and on Tuesday he was told he needed a colonoscopy straight away.
He woke from that to be told he needed immediate surgery as his colon was “riddled with cancer”.
A year later the cancer returned and he had a second surgery.
“I had an ostomy fitted and walked out and I’d never been better — the only thing slowing me down now is old age.”
Later in the year he joined the Western Bay Ostomy Association.
“I became treasurer the next year, then secretary and it just went from there. We’ve just grown the organisation.
“We go out and we’ll visit potential ostomates and current ones. People who are having problems, we go and talk to them and give them whatever non-medical advice we can.
“We’ve shown worldwide that if a person who is going to have surgery talks to someone beforehand and talks to someone afterwards, they get over it much much quicker.”
The association runs regular meetings in Tauranga.
