“Being mindful isn’t weakness. Being prepared isn’t limitation. Knowing your body isn’t defeat: it’s strength.” – Karl’s story
I wanted to share my UC story, in a real, honest, “this is how it unfolded and what I’ve learned” kind of way. Maybe it helps someone who’s in the thick of it right now.
Before Diagnosis: A Year of “Something’s Wrong”
Before anyone said the letters U and C to me, I spent about 12 months knowing something was off. I went to GP after GP, appointment after appointment, trying to explain everything: weeks without being able to go to the toilet. Other weeks where I was running to the toilet constantly. Blood that terrified me. Pain that left me in bed for days and exhaustion that didn’t match my age. But the advice was always the same: “Eat more fibre”, “Try changing your diet”, “Maybe it’s stress”, “Let’s just monitor it.” Meanwhile… I was struggling. And I didn’t feel believed. And I didn’t have answers.
Diagnosis: Relief First, Then Reality
By the time I finally had my colonoscopy in 2021, I genuinely thought I had cancer. So, when the doctor told me, “You have Ulcerative Colitis,” I wasn’t sad, I was relieved. Almost happy, in a weird way, because it wasn’t cancer. Then he handed me a pamphlet, said it was a lifelong condition, and that was it. I walked out with a diagnosis and more questions than ever.
In the weeks before my follow-up, I did what most of us do: YouTube, Google, Reddit… all the worst-case scenarios you can imagine. I honestly believed my life was about to shrink. That my dreams, goals, career, all of it – were about to be controlled by UC. But the truth turned out to be very different.
The First Two Years: Stability I Didn’t Expect
My first medication: Mezavant, 4 tablets a day worked incredibly well. For almost two years, it felt like I didn’t even have a disease. My symptoms settled. My life felt normal again. I started to trust my body. And my specialists were incredible, truly some of the best care I’ve ever received. Those years taught me something important: IBD really looks different for everyone.
When Things Shifted: 2024–2025
Around early 2024, my medication stopped working. Since then, it’s been a rotating door of trial and error: other oral meds either didn’t work or had bad side effects. Vedolizumab gave it 6+ months, no improvement. Next options likely infliximab or possibly Rinvoq. And yes, the side effects list scares me every time. But what else can you do? You choose the next best step and keep going. On top of that, the last two years have been a blur of:
– specialist appointments
– GPs
– functional practitioners
– naturopaths
– tests
– supplements
– medication scripts
– changes, adjustments, follow-ups
Some months I’ve spent thousands. It’s honestly been exhausting, mentally and financially. But I’m grateful I had a job that allowed me to afford the care I needed. And even through all this, my UC has stayed in the mild–moderate range, which I don’t take for granted. Flares still hit hard though. They affect my mindset, my confidence, my sense of agency.
The Turning Point: Refusing to Let UC Limit My Life
At some point, after enough setbacks, medications, and flares, something clicked: I didn’t come this far to let UC take over the rest of my life. I still had goals. I still had a future I wanted to build. So, I kept going. Today, even with UC, I am:
– working full-time as a project manager
– building my own health-conscious food and beverage brand for people with gut issues
– training 3-4 days a week
– travelling overseas every year
– taking holidays
– living life with intention and planning
– recently engaged
– still chasing every goal I had before diagnosis, and now, even bigger ones
I’ve learned that having UC doesn’t mean you need to restrict your life, it just means you need to plan it differently. Being mindful isn’t weakness. Being prepared isn’t limitation. Knowing your body isn’t defeat. It’s strength.
What I Want Someone Who’s Struggling Right Now to Know
If you’re new to this, overwhelmed, or in a flare that feels like it will never end, please hear me: Your life isn’t shrinking. It’s just changing shape. You can still build a full, meaningful, exciting life. You don’t need to justify your illness to anyone. You don’t need to feel guilty for taking time off work. You don’t need to feel weak for needing rest. You don’t need to prove anything. You’re already dealing with enough. UC might shape your path, but it doesn’t choose your destination.
Going through this journey made me realise something: Saying no to the things you love, sucks. Coffee, especially, became a big trigger for me, and I hated feeling like I couldn’t have it anymore. So now I’m building a brand dedicated to creating inclusive, gut-friendly products, so people like us don’t have to feel left out, restricted, or different. Because if I’m going to live with UC, I’m going to turn it into something that helps others live better with it too.
If you or someone you know would like to share their own story, click here.