Survivors of inflammatory bowel disease have been making noise around Australia to flush the stigma and raise awareness of the chronic illness.
As a country, Australia has among the world’s highest prevalence of Crohn’s disease and ulcerative colitis, two of the main forms of Inflammatory Bowel Disease, which affect more than 88,000 people nationwide.
With diagnoses on the rise, health experts project this number will grow to more than 100,000 by 2022.
Even so, little is known about the exact cause of IBD, with patients experiencing a range of symptoms, including inflammation of the digestive tract, diarrhoea, bloody stools, fever, weight loss and fatigue.
St Vincent’s Hospital Melbourne gastroenterologist Dr Emma Flanagan said it was likely a combination of factors triggered IBD.
“In both conditions, there is this abnormal and exaggerated immune response to the bacteria in the gut and that’s usually in a predisposed individual,” she said.
“There might be a genetic predisposition to developing IBD and then an unknown environmental trigger — potentially dietary, infection, or an alteration in the gut bacteria — leads to this abnormal immune response.”
She said while Crohn’s and colitis were similar, each affected the body differently.
“Crohn’s disease can affect anywhere in the digestive tract, so from the mouth right through to the anus, and patients tend to get patchy inflammation.
“The difference with ulcerative colitis is it just affects the colon and tends to be continuous inflammation from the rectum around the large bowel.”
Perth school teacher Hannah Mast (26) was diagnosed with ulcerative colitis in 2018, following unexplained abdominal cramps in her teens.
“I started having tummy pain in year 11 when school was stressful,” Ms Mast said.
Despite easing while at university, Ms Mast’s symptoms reappeared after her doctor prescribed a course of antibiotics to treat a chest infection.
“I had just gotten my first job as a teacher and working full time that year was more stress than I’ve ever felt in my life.
“While I was on the antibiotics, one day I went to the toilet and there was blood in there. Then every day when I went there would be blood and I thought, ‘OK, that’s not normal’.”
Ms Mast visited her GP and after a series of inconclusive tests and blood work she was referred for a colonoscopy.
“I woke up from it and the doctor said I had ulcers all the way through my large intestine.
“I straight away had to go on a course of steroids and this drug called mesalazine, which coats the intestine like a protective layer and can stop the immune system from attacking it.”
But like many patients, in the months following her diagnosis, Ms Mast endured a long and difficult regimen of treatment.
At Royal Perth Hospital, a team of specialists tried a combination of medications, chemotherapy and drug infusions to ease the aggressive inflammation in her colon.
“At this point, I was running to the toilet literally 20 times a day and when I went it was just blood — I couldn’t do anything or go anywhere,” she said.
“I was having incidents in public and I just felt like I had no dignity anymore.”
Finally, after months in and out of hospital with no breakthrough, Ms Mast consulted with a team of surgeons and, in a choice she never expected to make at her age, she resolved to have her bowel removed.
“I told them I was not afraid … I was just thinking, oh my god, it would finally be some relief.”
She underwent three procedures, one planned and two corrective, to remove every piece of her large intestine and connect her remaining small intestine to a bag on the outside of her body through a surgically-made opening in her abdomen called a stoma.
She explained the bag was changed regularly by the wearer and emptied into a toilet four or five times a day.
“It’s literally the same as what everyone does from their bum, which is arguably more dirty!”
Reflecting on her last surgery in April, Ms Mast said she was finally free of inflammation.
“I’m so much better,” she said. “I am going on a school camp and we are going hiking for two nights. No toilets. No anything!
“I have the confidence that I can manage my life — I just have my stoma and even though it technically counts as a disability, it doesn’t disable me at all. It’s the thing that gave me my life back.”
“The thing that is so isolating is not knowing who you can tell.”
In light of her journey, Ms Mast hoped sharing her story would help others understand what life could be like for people living with IBD.
“The thing that is so isolating is not knowing who you can tell,” she said.
“There’s very little understanding out there of what it is. That’s why it’s so important to me, when people ask me about it, to just tell them exactly what I experienced.”
According to Crohn’s & Colitis Australia, people living with IBD often remain silent about their condition because the symptoms are misunderstood or stigmatised.
Perth-based CCA ambassador Alyssa Shapland agreed raising awareness was important.
“I think because Crohn’s and colitis aren’t particularly glamorous diseases they don’t get a lot of media time,” she said.
Ms Shapland was diagnosed with Crohn’s in 2016 and manages the condition with medication. Like Ms Mast, she wants to change the way people view IBD.
“I think the more you have those conversations, the more it’s out there in the public and it makes that journey a lot easier for someone else that’s coming through.”
Learn about inflammatory bowel disease at www.crohnsandcolitis.com.au