“It’s all in your head.” No, actually it’s all in your gut, but many of those suffering gut health issues have been told it’s not a real illness or it’s no big deal.
This is despite up to 20 per cent of the population experiencing Irritable bowel syndrome (IBS), the world’s most common functional gastrointestinal (GI) disorder.
Professor Terry Bolin, president of the Gut Foundation, believes there are several reasons why IBS is not always taken seriously and much of it comes down to a lack of understanding.
“We still don’t know why people get it,” Bolin admits. “The difficulty is there are still many people who believe it’s in their head – people are told that it’s in their head. It does get worse with stress, [but] stress is not the cause.”
Another issue, he adds, is that “doctors can be pretty lazy with thinking about what to do, because it is a long-term problem”.
IBS, Bolin explains, is “a functional problem” where there is sensitivity and “disturbance of muscular activity” but unlike irritable bowel disease (IBD), it doesn’t involve inflammation.
IBD (the term used to describe Crohn’s disease and ulcerative colitis) has been recognised for a long time, but sufferers still have to put up with accusations that symptoms are psychosomatic.
“The doctors then didn’t even think I was so bad,” says 34-year-old Sylvia Keays, who was diagnosed with Crohn’s as a 13-year-old. “Even my previous gastroenterologist – he looked at me and said ‘hey, you look great. You look thin but you look great’.”
That was one week before a colonoscopy in 2015 revealed ruptured intestines that required immediate surgery.
“With this disease it’s so hard to know what’s going on until you look inside the body,” she says.
Five days later the surgery “broke apart” in her body and further surgery saw doctors remove “pretty much the rest of my large intestine”.
“I ended up with an ileostomy – a bag – which fortunately was temporary,” Keays says.
She spent six weeks in hospital and used the bag for six months.
“I hope I never get to that point again, because you can.”
In Australia, IBD is becoming more prevalent, more complex, and more severe, according to the Gut Foundation who say it affects about one in 250 people aged five to 40.
Prevalence of Crohn’s disease has trebled in the past 30 years, Bolin adds, and affects men and women equally.
“We’re seeing it increasingly in children,” he reveals. “The cause of that is not known but there’s some evidence in Scandinavia that treating children with multiple courses of antibiotics [is a factor].”
Bolin also says there is a hereditary component. “About 10 per cent of people will have a family history.”
Ulcerative colitis affects only the colon and is associated with bleeding, and often diarrhoea and pain while Crohn’s disease does not always involve bleeding and can affect any part of the gastrointestinal tract from the mouth to the anus. Common symptoms include: abdominal pain, diarrhoea, fever, malaise, nausea and vomiting, loss of appetite, weight loss and poor growth in children.
Australia has one of the world’s highest rates of IBD and for the world IBD awareness day on May 19, Bolin hopes more people will recognise a hidden illness and take it seriously.
“We want people to recognise that their symptoms may be due to a treatable problem and with IBD day, we’ll focus on that and so the symptoms of diarrhoea, fatigue, weight loss, pain might impact on them and how there are really fantastic treatments available that can return them to normal life,” Bolin says. “It’s not something to be fearful of.”
Keays says she wished she hadn’t delayed doctor’s check-ups when she was feeling well or stopped taking her medications.
“You need to be on top of this thing …and taking it seriously,” says Keays who works in corporate theatre and who has started a blog about her experiences with IBD.
“I think people with chronic illness – and I’ll speak for myself having Crohn’s – you get accustomed to feeling not well, you get accustomed to feeling a bit run-down … but you tell everybody ‘yeah, I’m fine’… of course you want to live your life… or you keep charging through, but I think that’s the danger of it … It’s such a horrible thing it’s hard to own.”
It can also be hard to take seriously because it is intermittent – extended periods of feeling well can be punctuated by debilitating flare-ups. Plus, you can’t see it, so it’s easy to pretend it doesn’t exist.
“It’s a very real thing – it is what they call an invisible illness,” she says. “You can’t judge people by how they look – disability can come in many forms and this has slaughtered my body but it’s transformed my life – I can’t do what I want to do.
“A common factor is even if you feel great and look great. You might not have any symptoms but the disease might still be very active inside of you. You can’t judge the disease by how you feel – it can flare up.”