“Because Crohn’s is a permanent part of our lives and we’re not going anywhere” – Taylor’s story

On a normal Thursday in April 2023, after about a month of abdomen pain, I went to get a routine ultrasound on a possible ovarian cyst. What should have been a 1hr appointment, turned into 6 hrs, 1 ultrasound and 3 CT scans.

I was told I had a 90mm intussusception in my intestines and that I needed to go the hospital immediately. If you imagine a pirate’s telescope, and how it collapses back into itself – my intestine was doing that. When I presented to the hospital, they didn’t believe me, and I kept being told this only happens in children, even though I had CT scan evidence.

I have AuDHD, so I struggle very much in a hospital setting, let alone no one believing me. I was put through a 7.5hr surgery, and had a polyp removed, however I was still told the intussusception was not real. I was discharged the next day with 2 tablets of Endone for my recovery. My intestines went back in on themselves 5 days post-op. I had another CT scan to confirm this, and I was sent to the PA IBD Clinic.

Over the next 17 months, I went through countless blood tests, CT scans, MRI’s, colonoscopies, endoscopies, doctors telling me might have a tumour, and that it’s currently a waiting game as no one had an idea of what was going on. I couldn’t walk properly; I had to go extremely slow everywhere and couldn’t walk for more than half an hour.

I lost jobs, money, friends, my life. I couldn’t stand up straight because of the pain, my back was in a constant twinge and my joints felt like they would fall out. I couldn’t eat properly, only bland foods or clear fluids. Finally, in September 2024, after months and months of mental and physical stress and anxiety, I was finally diagnosed with Crohn’s Disease. I started treatment right away.

We went through a few different medications, and a few doses of steroids for ulcers and I now visit the PA infusions every 8 weeks for a Vedolizumab treatment. I have finally started to get my life back on track, and the Vedo has helped immensely.

I have been able to get back into my passions of live music and creating art – something my body wouldn’t let me do for a long time. I have recently started looking into IBD support, and it’s sad the lack of support for us.

That’s why I’m taking on the Live Fearless Challenge. Because Crohn’s is a permanent part of our lives and were not going anywhere.