How Lili Higgins manages Crohn’s disease symptoms

Lili Higgins started suffering gut problems when she was just a baby. She shares how she manages the common and incurable disease she lives with.

Lili Higgins lives with Crohn's disease. Picture: Daily Telegraph/ Monique Harmer

Lili Higgins spent more than a decade not knowing what was causing her persistent gut problems.

From when she was just a baby, she battled symptoms like pain, constipation and weight struggles.

The lack of answers and coping mechanisms compounded her suffering.

“I went 11 and a half years without knowing what was wrong, it was so hard,” the Sydney 26-year-old said.

Finally, at 12 she received her diagnosis — Crohn’s disease.

The diagnosis was helpful in providing some mental relief, but she still struggled.

“I would have mini flare-ups from week to week, where food triggered something or I had just been too stressed,” she said.

Reme Mountifield, head of inflammatory bowel diseases service at Southern Adelaide Local Health Network, said Crohn’s disease was an inflammatory condition affecting the gut, and it could occur anywhere from the mouth through to the anus.

Associate Professor Mountifield said the disease was common.

“There’s around 180,000 Australians at the moment experiencing an inflammatory bowel disease (which is either Crohn’s or ulcerative colitis), and that number is increasing all the time,” she said.

The 26-year-old said gut health and stress reduction were tools that helped her manage.

Although Crohn’s disease is incurable, Ms Higgins said certain tools have helped her manage daily.

Both gut health and stress management played a huge part in keeping her symptoms at a minimum, she said.

“When I’m healthy, stress is the best thing to keep under control and when I’m unwell it’s diet,” she said.

In terms of diet, she said she found an individual plan to keep her on track but that every Crohn’s disease case was unique.

“For me, the best thing is low inflammatory foods, whilst insoluble fibre triggers my stomach” she said.

“It’s all about trial and error, finding what works for you.”

Within the last year, Ms Higgins said her dietary and lifestyle changes allowed her to reduce symptoms of the disease.

“I feel the healthiest that I’ve ever been,” she said.

Prof Mountifield said patients with Crohn’s disease often needed to follow personalised diets, but that avoiding certain foods could be helpful.

“There’s no one particular diet that is ideal and that fixes the symptoms, but we do recommend a Mediterranean diet, or diets that are really balanced without being overly restrictive about particular food components,” she said.

“People shouldn’t have a lot of ultra-processed food and should stick to a balanced, healthy diet.”

Ms Higgins said she hoped people gained more compassion for those with chronic conditions, even when it may seem they aren’t struggling.

“Be gracious with people who have illnesses like this, and just give them a bit more understanding,” she said.

“It’s not just a simple fix.”

Editorial note: This article is for general interest and informational purposes only. It does not constitute medical advice