IBD is escalating, seemingly thanks to the Western lifestyle, and New Zealand has one of the highest rates in the world.
Raising Simba high in the air while playing monkey Rafiki in a local production of The Lion King, Ashburton teen Charlotte Livingstone relished the moment that only a year ago had seemed impossible.
She was diagnosed with the autoimmune condition inflammatory bowel disease (IBD) at age 12, following severe ill health. A colonoscopy and endoscopy revealed ulcers along with bleeding and thickening of the bowel wall and she was given a temporary liquid nutritional diet and ongoing immunosuppressants.
“The medication only worked for around a year,” says Livingstone, 17. “I was very underweight, sick all the time, and very tired.”
Her gastroenterologist tried other medications, none of which were successful for long. “I’d have massive flare-ups when everything would go downhill. At times, I couldn’t eat at all, was on the toilet 24/7 and vomiting.”
Other symptoms included diarrhoea, blood in her stools, and extreme fatigue. There was also the humiliation of coming home from school one day and not being able to get to the bathroom in time.
Livingstone is one of more than 32,000 New Zealanders living with the disease, according to figures recently compiled by PhD candidate Angela Forbes, a national authority on IBD epidemiology.
The main types – Crohn’s disease and ulcerative colitis – cause ongoing inflammation in the digestive system that can lead to complications such as scarring, ulcers, and cancer.
IBD is no relation to the more common IBS – irritable bowel syndrome – which shares some of the symptoms. In IBS, the gut looks normal but is supersensitive, often to diet and stress. IBD, on the other hand, is an inflammatory disease with ulceration of the gut. There’s no cure but it can be managed with medication and sometimes surgery.
Chronic gastrointestinal conditions typically become evident between the ages of 15 and 35, though a quarter of those diagnosed are 14 or under.
About 15% of those with ulcerative colitis and up to 50% of those with Crohn’s disease, (30-40% overall) go on to need bowel surgery as a result of damage.
Forbes’ calculations show that in Canterbury alone, there are now more than 4000 patients with inflammatory bowel disease, a three-fold rise in the past 20 years. Aotearoa already has one of the highest rates of IBD in the world, with 1 in 161 diagnosed with the lifelong progressive condition – a prevalence comparable to type 1 diabetes. Rates are growing rapidly, estimated at 5.6% annually.
Chasing answers
Rates started climbing rapidly in the Western world in the 1950s and numbers are still rising; what is driving the increase is a scientific puzzle. Specialists and researchers say there’s too little research to identify causes yet but point to interactions between the gut microbiome, environmental exposures such as antibiotics, and diet, particularly the rise of ultra-processed foods.
Smoking, infection, drugs, stress, air pollution, water pollution and food additives are other commonly studied suspects but findings have been inconsistent and more research is needed.
Genes are thought be a contributing factor but can’t explain the rapid rise in a relatively short time.
“There are a number of potential drivers of change, but diet is quite a compelling one,” says gastroenterologist Richard Gearry, professor of medicine at the University of Otago. “A diet high in ultra-processed foods could potentially cause problems.”
Research has found people on Mediterranean-like diets have a much more probiotic microbiome and are less likely to have bowel inflammation, says Gearry, who is medical adviser to Crohn’s & Colitis New Zealand (CCNZ).
“Other things that can affect our microbiome include the amount of antibiotics we’re exposed to – either in our food chain or directly prescribed for us.
“We also know, for example, that emulsifiers, which are important for preserving food, strip the mucus off your gut, which may mean the bacteria come more in contact with the immune system, which can cause inflammation.”
Sufferers can end up in emergency departments and, for some, the condition becomes so serious it necessitates removal of parts of the bowel and life with a colostomy bag.
A 2017 report commissioned by CCNZ estimated that the cost to healthcare and lost productivity was $245 million annually.
But there is hope: as well as ongoing research into what’s causing a sharp jump in rates, work is under way to give people with IBD a better way to manage it: a simple stool-sample test that will warn of flare-ups. The test is being developed by scientists at the University of Otago’s Christchurch campus.
“We’ve found a new way to measure something called faecal myeloperoxidase, MPO [in stools], which we’ve shown is at least as effective as [testing for] calprotectin,” says Grace Borichevsky, a PhD candidate pioneering the enzyme extraction technique.
Measuring levels of the protein calprotectin in stools is currently used to screen for inflammation in the gut (confirmation requires a colonoscopy and/or endoscopy), but results of these lab tests can take several days.
The Otago team want to develop the MPO test further to make it an easy-to-use test that can be done at home and gives rapid results. This would help IBD sufferers identify flare-ups quickly so they can get their medication adjusted to avoid permanent gut damage.
“We believe MPO testing could be a cheaper and faster way of identifying inflammation, says Borichevsky. “We hope it can be developed further into a dipstick which could be used by clinicians or patients to monitor and treat disease flare-ups relatively quickly.”
Gearry, a supervisor on the research, adds: “It’s not quite a blood glucose test for diabetes. But it would give people with IBD a better feel about what’s happening to enable specialists to use the right drugs at the right time.”
To bring this to market, more funding is needed for further research, he says, as well as a backer.
Food triggers
Some people say avoiding certain foods can help manage their flare-ups but individual responses vary widely. Gearry says the exclusive enteral nutrition diet – essentially a formula-based diet with no solid foods – has evidence to support its use for some people, particularly children. But it is usually recommended only for a short period, to give the gut time to recover.
There’s also evidence in favour of the Crohn’s disease exclusion diet (CDED). This again aims to allow recovery time from a flare-up as well as identify trigger foods by introducing them one at a time over months.
Although evidence is still tentative, the International Organisation for the Study of Inflammatory Bowel Disease nutrition group has put out some guidelines. It suggests that to help control and prevent a relapse of IBD, it can help to avoid foods with additives such as emulsifiers and thickeners, trans fats and unpasteurised dairy, and to decrease intake of titanium dioxide (food colour and preservative) and sulphites. Specialists recommend any changes should be undertaken with a registered dietitian.
In February 2023, following Pharmac’s approval of two new drugs, Charlotte Livingstone was able to start a course of ustekinumab, a self-injected medication available in other countries for years. Before this, she’d come frighteningly close to needing her colon removed and life with a colostomy bag. CCNZ had campaigned vigorously for the approval of ustekinumab, presenting a petition to Parliament with over 30,000 signatures.
With ustekinumab (brand name Stelara) and vedolizumab (Entyvio) now funded, Pharmac estimates 1280 people will have started on the drugs in the first year, rising to nearly 3890 within five years.
Newly diagnosed patients usually start on conventional treatments but over time, these treatments can become less effective for some. The new drugs provide more options but four or five other drugs are readily available in Australia and elsewhere that are not yet available here.
For Livingstone, ustekinumab has enabled her to lead a near-normal life, actively taking part in school again and participating in drama and dance. “I’ve still got some symptoms, like not being given a warning of when I need to go, but I have higher energy levels and no unusual bowel movements.” She is able to eat but still needs a nutritional top-up every morning through a tube surgically fitted to her stomach.
Her diet is very limited, mainly meat and potatoes and pasta and nothing with high fibre, seeds or skins. She loves mandarins and feijoas but mandarins are ruled out because of the pith and feijoas are an occasional treat. She doesn’t eat breakfast because she’s fed through the tube before she wakes up.
Internationally renowned IBD researcher and Canadian gastroenterologist Gil Kaplan recently visited this country and was surprised at the lack of treatment options available here. “The number of people living with the disease is climbing at a very high rate and it’s important to make sure we have access to all of the cutting-edge medications,” says Kaplan, a professor of medicine at the University of Calgary. His work involves trying to understand how the disease has evolved since the Industrial Revolution.
Canada and New Zealand are very similar when it comes to IBD in terms of the rates at which the disease is progressing and the proportion of the population affected, he says. Epidemiological forecasting models estimate that within 10 years, over 1% of the Canadian population are expected to be living with IBD, so a major challenge to both countries will be training enough specialists.
When considering whether to make new medicines available here, says Gearry, Pharmac doesn’t take into account indirect costs of IBD, such as high rates of anxiety, depression, hospitalisation, surgery if medications aren’t available, or ongoing medical care for drugs that require infusions at a centre.
“We desperately need new data to prepare the healthcare system for the rising burden of IBD,” he says. “When medication options run out, people’s quality of life either falls or they get so sick that surgery to have parts of their bowel removed is the only remaining option.
“What we’re trying to do in Christchurch in particular is reduce unplanned care, where people have to go to the emergency department. If we can avoid that, it reduces flow-on costs. We’re keen as a profession to have access to different treatments to provide effective and convenient therapies for people to keep them working and keep them at school.”
‘Never trust a fart’
Ulcerative colitis sufferer Richard Furhoff was diagnosed at 17. The Napier photographer manages his situation with diet and medication, and in finding the humour it can provide.
“One of the upsides is that people with IBD and gastroenterologists have the best poo jokes,” he says. “The saying ‘never trust a fart’, which is a line from the film Bucket List, will have anyone with inflammatory bowel disease falling off the couch laughing because they can totally relate.
“I cracked up when I was at a talk once by Dr Richard Stein, who’s a legend in the world of gastroenterologists, when he said that the first person to document IBD as a condition was a Greek physician called Soranus.” Similarly, Grace Borichevsky reports that her sister has dubbed her “a shit scientist”.
Furhoff first saw blood in his stools as a teenager. He’d been hospitalised many times and tried other medication before being prescribed mesalazine (a drug still widely used) 20 years ago, which helped him manage the condition. He is among those now taking vedolizumab. Administered by IV infusion, it’s starting to bring him relief.
IBD in infancy
Andrew Day is the South Island’s only paediatric gastroenterologist. With the large rise in the number of children diagnosed with the disease, he would like more drugs to be available. “Like the other biologics we already had, the two newest drugs here are via injection or infusion and younger kids particularly don’t like injections,” says Day. “There are oral-based medications we’d like to access that are available overseas.
“We’re very much seeing increasing rates of diagnosis in children, and as well as having access to the right medications, we should also ensure we have psychology, nursing, dietetic and surgical resources to look after all of the aspects of young patients.”
IBD in childhood can even start in infancy, he says. “The youngest I’ve been involved with being diagnosed was 6 weeks old.”
Day is researching interactions between the gut microbiome and the immune system, and the role that plays in the disease.
“Some of the most important contributory factors to IBD are environmental exposures and key within that are dietary exposures. The microbiome, the intestinal bacteria, is really important and there are suggestions it’s changing over time.
“We know there are many genetic factors, that the immune responses are really important, and that environmental aspects that can tip the balance can include things like campylobacter or other infections that then start a cascade towards inflammation.”
What specialists would like most of all is to find a cure, adds Gearry. “At the moment, we can treat people and put them in remission – and I tell people that remission means that the only reason they know they’ve got the condition is that someone like me told them and they have to take some medications, but otherwise they live a normal life. “But we would love to be able to either prevent or cure the condition. To do that you really have to know what causes it.”
For Livingstone, being able to manage IBD means she can focus on the future, which she hopes will involve study next year on a beauty therapy course at Ara Institute of Canterbury, a Christchurch polytechnic. She’s already gaining work experience at a local salon, and loves to treat her friends to facials, hairdos and manicures. “I really love acts of service,” she says. “That’s my love language.”
For more information, visit crohnsandcolitis.org.nz
Awkward subject
One of the big challenges with inflammatory bowel disease is overcoming the stigma associated with it, says gastroenterologist Richard Gearry. “We need people to be able to talk about this and discuss symptoms. I’ve been involved in some qualitative work around understanding what the barriers are for people being diagnosed with a range of gut conditions. The Gut Foundation does a lot of work in that space, trying to help people describe what’s going on with bowels.”
It’s something Crohn’s sufferer Belinda Brown struggled with. The Aucklander was diagnosed at 26 but didn’t feel comfortable discussing it. Twelve years later she began fundraising for a camp for kids with IBD. “I took part in the Round the Bays fun run in 2014. At that time, I was just coming out of really a dark place because I’d been very depressed with my disease. My friends thought it was amazing when I told them about the event because it was the first time I’d really talked about my Crohn’s. For the whole eight kilometres, I was terrified of not being near a toilet.”
Her run was successful, and so was the combined fundraising with Crohn’s & Colitis NZ for its first “Camp Purple Live” the following year. Now an annual event, it was the brainchild of gastroenterologist Richard Stein, who recognised the need for a fun, self-esteem-boosting event where children could have adventures knowing they were not alone with their condition. Those giving support each year include dietitians, nurses, surgeons, psychologists and “camp mum” Brown.
Now chief executive of CCNZ, she talks very openly about her experiences. She has been hospitalised on many occasions, including three operations to remove sections of her bowel. “IBD desperately needs more resources,” she says. “For instance, specialist IBD nurses are so important but there’s a huge shortage of them across the country.”
For youngsters such as Charlotte Livingstone, who has attended three events, Camp Purple Live brings a welcome reprieve.
“I’ve made some really great friends who all completely understand what it’s like, and the support from the staff and nurses there is amazing. I might get tired easily and need meds and nutritional drinks, but others there do, too, so it’s the one week I feel like a completely normal teenager.”