Top End Crohn’s disease patient shares how it affects her day-to-day life

When Lily Daniel first started suffering symptoms in her final year of high school, she never expected her diagnosis would change her life.

Lily Daniel, a Darwin-based woman with Crohn's disease. Picture: Supplied

A Top End woman living with Crohn’s disease has shared how the illness affects her day to day life, as part of a national movement for IBD Awareness Month.

Lily Daniel was diagnosed with Crohn’s disease in 2020, while she was completing her final year of high school.

The 22-year-old told the NT News she initially thought it was appendicitis, but after severe symptoms including bleeding and incontinence, and a colonoscopy and endoscopy, she was diagnosed with Crohn’s.

She said Crohn’s had a big impact on her life, including having to identify where the nearest bathrooms were at all times, but that many people didn’t know a lot about the disease.

“I feel energy is a big thing, especially in the NT because like the heat in general can take energy from a person, but then when you don’t have any energy to begin with, it’s really debilitating,” she said.

Lily Daniel, a Darwin-based woman with Crohn's disease. Picture: Supplied

“Sometimes you just want to stay in bed.”

“It’s an invisible disease, so a lot of people don’t realise that you’re suffering in silence.”

Crohn’s disease is an inflammatory bowel disease that affects the digestive tract.

The disease also affects the types of food and drink Ms Daniel can have.

“Everyone with Crohn’s disease is different, so it’s not like you just can go and they say oh if you do this diet things will settle down.”

“For me, like, I’ve gone through phases where I’ve been gluten-free, dairy-free, I was sober for three years to try and get on top of everything but, you know, it just kind of luck of the draw.”

Crohn’s and Colitis Australia CEO Leanne Raven said the number of people diagnosed with Crohn’s was steadily growing.

Crohn’s & Colitis Australia CEO Leanne Raven. Picture: Supplied

“Inflammatory bowel disease is an invisible, chronic illness affecting 180,000 Australians, and that number is growing at an alarming rate,” Ms Raven said.

“The prevalence of IBD in Australia is expected to outpace countries like Canada, the UK and New Zealand, with a projected 238 per cent increase between 2010 and 2030.”

Ms Daniel manages her condition from home, and has injections of a live culture medicine called Stelara every eight weeks.

Monday, May 19 was World IBD Day, with more than 100 landmarks lit up in purple to shine a light on the daily challenges those living with Crohn’s disease face.

Ms Daniel said she had previously participated in the Live Fearless challenge for IBD Awareness Month, which sees entrants walk to raise money and awareness, but that this year she would be taking to social media to help spread the word.

“It is a really good thing that we have awareness months and weeks and days to really spread awareness and just make life for people with these illnesses easier, when everyone has a bit more of an understanding.”