“Despite everything I’ve kept pushing” – Jaiah’s story
In October 2024, I was diagnosed with a life-changing chronic illness — Crohn’s disease.
Crohn’s is an autoimmune condition where the immune system mistakenly attacks the digestive tract. It causes a long list of symptoms — many of which I’ve experienced firsthand — including bloating, bleeding, bowel obstructions, nausea, vomiting, cramping, ulcers, fatigue, fever, and significant weight loss. The list goes on. Everyone’s journey with Crohn’s is different, but none of them are easy.
My story began back in 2019, when I first saw my GP. I underwent a colonoscopy, gastroscopy, and blood tests — all of which came back clear. I returned again in 2022 with worsening symptoms, only to be misdiagnosed with IBS, despite having a family history of IBD. I felt dismissed. So I decided to take matters into my own hands and requested a referral to a specialist. That decision changed everything.
I saw a leading gastroenterologist who suspected Crohn’s immediately. From there, I underwent a bunch of tests – blood tests, stool samples, MRE imaging, and multiple scopes. Eventually, an MRE revealed six narrowed sections in my small bowel. Food was struggling to move through, and I was becoming blocked up. My digestive system was in crisis.
After diagnosis, I began aggressive steroid treatment to reduce inflammation, followed by immunosuppressant medication – the kind often used by cancer patients. I required iron infusions and regular blood tests every two weeks.
Over the Christmas and New Year period, I was placed on a strict liquid-only diet for eight weeks. No food. Just hospital-prescribed nutritional drinks and water, to give my gut a chance to rest.
In December 2024, I started a biologic treatment called Ustekinumab. Like most IBD medications, it’s trial and error. Some people respond well, others don’t.
After the initial infusion, I moved to self-injections – drawing medication from a vial and injecting it into my stomach. Not exactly how I thought my 20s would look.
It’s now been nearly 12 months since my diagnosis. I’m not “fixed,” and I’m certainly not “better.” But nobody with Crohn’s or colitis is. This disease doesn’t just disappear — it’s a lifelong challenge.
Despite everything, I’ve kept pushing — studying at TAFE, running my own business, showing up at work, and trying to be the best version of myself.
Crohn’s is invisible. From the outside, I look fine. But this disease is exhausting, painful, and relentless. And worst of all, many people think we’re “faking it.”
This September, I’m walking 150km to raise awareness for Crohn’s and Colitis Australia — to help others understand what IBD really is. It’s not the same as IBS. It’s so much more than just a “tummy ache.”