From patient to purpose!
In October 2023, at 25 years old, I had my first colonoscopy.
I'd been getting some symptoms, but I didn't know what to expect. My first specialist walked in with a notepad and told me I had a form of Ulcerative Colitis.
I’d just moved to a big city with my then-partner, ready to throw myself into life. But as the specialist spoke, I felt completely overwhelmed and I started to tear up.
He suddenly got uncomfortable, muttered “sorry” and quickly moved on to the next patient.
That was the introduction to my two years of not being taken seriously.
The pattern became painfully apparent: I’d be put on medication, then after a few weeks some symptoms would flare-up.
Instead of changing anything, my dose was simply increased.
When I asked for alternatives, I was dismissed. I was told my case was “not severe enough” to try other forms of medication.
I would tell my doctor about my abdominal pain and they told me it must be my diet.
I was sent to a dietician who would go on to treat me for IBS.
I spent hundreds on hydrogen breath tests and check-ups, only to be told it was “maybe a sorbitol intolerance.”
But by then, I had to go to hospital as my symptoms had worsened.
Steroids gave me temporary relief, and I thought I was going to be better because of this.
I wanted to keep seeing the hospital team that had helped me out of the flare, but the public system left me in the dust.
A year on the waiting list just to been seen. Eventually, I gave up.
When symptoms got worse again I tried a second private specialist, but even after trialling a few new medications, things didn’t improve.
Life seemed to shrink after a while. I lost track of how many days I didn’t leave my apartment because of the toilet trips, the pain and the fatigue.
Work, hobbies, friendships…all put on hold.
Whilst I knew I had something wrong, I started to doubt whether it really was that bad. Was I even that sick? Was I just not handling it? I really tried to keep my chin up, but inside, I was getting so lonely.
I had planned a holiday with my then-partner when I was feeling alright (thanks to steroids), but by the time it came around to go, I was having rough symptoms.
My specialist advised to go back on steroids to get through it, but quite honestly during this trip, it was the lowest I’d ever felt mentally.
Not long after this, I made the decision to leave my life in the city. I moved back home to my family, where I quite literally collapsed.
In hospital again, I felt like a complete failure. I'd lost my apartment, my ability to work and my independence.
My six-year relationship crumbled and I had to say goodbye to my dog.
The doors I’d been so eager to walk through slammed shut.
But back in my hometown, I finally found a doctor in the hospital who saw me and acted immediately.
He was quick to rediagnose my form of UC after putting me through a bunch more tests.
Then for the first time in years, hope arrived in the form of a biologic.
After I was discharged, I came off the steroids and started on the new medication.
My life finally clicked into place after that. I stopped bleeding, and could finally wake up and make it through a day.
I was able to go to the gym again to rebuild my muscles; with prolonged steroid use my bones had become so brittle.
I began building myself from the ground up. Whilst life is not completely the same as it was before diagnosis, it’s a new normal I can count on.
I’m stronger, supported, and finally (finally) in control.
Moving forward, I did want to reflect on what I’d just been through. IBD is absolutely rubbish sometimes (especially when you're in the early stages), but there’s so much to find in a community who are all having a similar experience.
So with my little brother Dan (who has always been such a supportive presence in my life), we started a comfort clothing brand. Not only is it for my fellow IBD warriors, it’s for people with any ongoing health conditions.
We call it Flarewear and we are launching in Australia on September 1st.
The tagline: "What you wear when you're in a flare".
It has given me purpose like never before, and I am totally excited.
Bottom line my friends; if you’re in pain, there is a reason for it.
You deserve a medical team that sees you and acts fast. Dismissal is not treatment, so don’t put up with the bullsh*t.
If you are going through it with flare-ups, please be kind to yourself. You are so much more than your diagnosis, find what works for you.
Me and my brother Dan
