When people hear the word advocacy, it can sound a bit vague. Maybe they picture someone standing outside Parliament with a sign or giving a speech on stage. And while that’s one version, it’s not mine.
For me, advocacy has looked like pulling together everything I’ve got: time, savings, energy I don’t always have, and a whole lot of stubbornness. It’s emailing people who don’t reply. It’s applying for meetings that might go nowhere. It’s figuring out design, content, community, event management and media.
And it’s worth it.
Because IBDHUB came from pure frustration, and — if I’m honest — a bit of jealousy. Other health communities had digestible, shareable content. Their friends and families could learn something useful from a reel or a tile. Meanwhile, I was stuck with sterile diagrams, poo charts and 40-page PDFs that didn’t speak to what I was actually living through.
No thanks.
So I made what I couldn’t find. Something that explains IBD in real language, without losing the facts. Something your mum/dad, your mate or your boss could read and actually get it.
What IBD Hub Is
It’s a platform. A resource. A growing community. A pushback.
And yeah, maybe even a little bit of a revolution.
It lives in that rare space between clinical credibility and real-life experience, no beige pamphlets, no medical jargon. Just clear, evidence-based support, and the voice of someone who’s lived it.
I’m not a doctor. I’m not a medical professional. I am lived experience.
I rely on my team, my specialists, my GP, the researchers, and the guidelines, and I’m beyond grateful for the care I now have.
I’m not here to discredit medicine whatsoever, I’m here because medications saved my life, and because I believe people deserve good care earlier, with information they can actually understand.
It’s:
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The Ultimate IBD Handbook – A resource I first pulled together for myself, because no one was handing me anything that made sense. Eventually, I turned it into something for the newly diagnosed.
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Certified Sh*t Talk™ – live education workshops that make sense of the system, the symptoms and the mess in between.
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IBD in the media – TV segments, print interviews, podcast appearances.
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The Ultimate Sh*t Show – a first-of-its-kind event that brought IBD into the spotlight with a lot of humour and community support.
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A real seat at real tables – including national consumer advisory group and Faculty-level discussions, where the patient voice isn’t just included, it’s leading.
And it’s all still run by me.
No staff. No funding. No big campaign machine. Just someone living with IBD, building what they wished had existed years ago.
What The Ultimate Sh*t Show Proved
This year, I hosted The Ultimate Sh*t Show in Townsville. A live, no-holds-barred event for patients, clinicians, families, and anyone who’s ever had to fight to be taken seriously.
We had comedian Indy C, a panel of incredible speakers, raw personal stories, a room full of empathy (and a lot of laughs), and for the first time, I saw just how ready people are to talk about IBD without shame.
It wasn’t just an event. It was a turning point. People showed up, businesses backed it, and the conversations that came out of that night have already started to ripple. We raised funds for Crohn's and Colitis Australia, yes, but more importantly, we raised the bar for how these conversations can be had.
And the things I create, from the handbook to the merch, help me keep doing that. Every product, every download, every share helps me keep creating the resources we’re not given. It’s not about sales. It’s about sustainability.
The Work You Don’t See
At the end of June, I sat across from Queensland’s Health Minister. I had 15 minutes. I came armed with research, a formal letter, and a decade of lived experience.
In that meeting, I made it clear:
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Diagnostic delays are costing people years of their life
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Calprotectin testing should be standard
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Wraparound support — mental health, diet, social care — should not be optional
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Regional patients deserve more than long drives and long waits
A few days later, I got an email from Associate Professor Gareth Walker, the Clinical Lead for IBD at Royal Brisbane and Women’s Hospital. We met. We spoke about what I’d raised. And together, we co-authored a letter to the Minister, combining lived experience with clinical weight.
This isn’t just storytelling. This is system-level advocacy grounded in reality, backed by data, and carried out with care.
So What Is IBD Hub?
It’s a little bit of everything:
A resource. A platform. A community. A pushback. A place for people with IBD to feel informed, seen, and less alone.
It’s where we say the quiet stuff out loud.
Where we fight for earlier diagnoses, actual care plans, and GPs who know what a flare actually looks like.
Where you don’t need to translate your symptoms into a palatable story to be believed.
And it’s only getting started.
