“Sometimes it feels like I’m the only one with this, but I’m really not” – Kaitlyn’s story

From an interview with Kaitlyn and her mum, Belinda that’s been edited.

Hi, my name is Kaitlyn, in November of 2023 I was diagnosed with Crohn’s disease. I have always had pain in my stomach, but it went undiagnosed for years. I was prescribed iron supplements, which led to a spiral of madness in my stomach. I went back and forth to and from the doctor for months and they wouldn’t do much for me – believing that my constipation wasn’t uncommon – but it kept getting worse. We kept going back because my stomach kept getting worse, and eventually we needed to go to the Emergency Department at the Royal Children’s Hospital.

At the hospital I waited for three hours in pain until we were seen and then dismissed. I was prescribed with eight satchels of Movical per day. That turned the problem into an even bigger problem. I had diarrhoea, which led to readmission in the hospital. I had tests and scopes done, which is when the medical team discovered that I had Crohn’s disease. Now I’m moving onto Infliximab. I was quite upset with the news of my diagnosis, but I was happy to find out why I was experiencing the pain in my stomach.

With school, it can be hard to go in the morning due to the amount of toilet trips I have to do. Some days, I miss the first 15 minutes of first period. Other days, I’ll miss two periods, or full days because my stomach is so bad. It really depends. I haven’t really had any trouble with my friends because of my Crohn’s disease. But some friendships have drifted apart because I haven’t been at school. I’ve had to bounce between friend groups, which is not very fun.

I do wish some people were more supportive and understanding of what I was going through. One of my really good friends told me – “I’m on my period, which is so much worse” – which was upsetting. But my other close friends are very interested in learning about what I have. They are always wanting to know what’s happening. At school, we’re learning about the body and biology, so I did a presentation about Crohn’s disease in class. When they realised why I haven’t been at school, the main response was, “okay, cool,” which sums up things.

Regarding people I know that live with this disease, I talk to a girl called Sienna, who I met through Yep! Online (CCA’s support group for teenagers living with IBD). For instance, she shared her experience with Infliximab, which I found to be really helpful. It’s good to speak to someone my age who knows what I’ve been through, and what I’m going through. I also talk on Discord with other people who have Crohn’s disease. There aren’t many people that I know with this, but it’s nice to hear other people’s stories. Sometimes it feels like I’m the only one with this, but I’m really not. Walking outside, someone next to me might be going through the exact same thing.

I mostly talk to my mum about what I’m going through, and sometimes I talk to my friends. But I wish more people know about the amount of pain that’s involved. It’s hard to hide it, but after a while it becomes easier to hide the pain. When it gets really, really bad, I can’t hide it anymore. But when it’s just really bad, I can still try to manage it. You can’t do much anyway. Just Panadol and a heat-pack.

Belinda: From my perspective, there’s so many groups that help people with other terrible diseases. But with Crohn’s disease, there isn’t as much help. It’s harder to bring young people together to share their stories. Kaitlyn’s done a bit of this online, but if there were more opportunities for young people to talk to other people their own age, that’d be good. Especially with so many young people missing school and other activities that they enjoy, it’d be good to have more support.

Kaitlyn: I’d like more people to know more about what this disease is.

Visit here to share your own story.

Visit here to learn more about YEP! Online.