Looking back, living with Crohn's hasn't been my biggest challenge. It's the lack of joined-up care and having to navigate a system that tells you you're fine when you know you're not.

Ultimately, it's the feeling of not being heard.

There's much more to do when it comes to coordinated care for people living with Crohn's or Colitis. We need dieticians, mental health support and IBD nurses to work together because, as my experience shows, misalignment can really cause big gaps in care that can make daily life difficult. That's what leaves you feeling isolated and misunderstood.

Time and time again over the years I've had to be my own biggest advocate. There have been moments where I've known, deep down, that something just wasn't right in my body, even when the tests suggested otherwise. Despite telling people how awful I'm feeling, I've been told it must just be something else - a stomach bug or even pregnancy.

The lack of joined-up care was most evident when my mental health became impacted. At the time different medicines were affecting my appetite in various ways, and I started to avoid foods that I felt were making me worse. When I first reached out for mental health support, it was exhausting having to explain, over and over again, that my relationship with food was shaped by Crohn's. 

Unfortunately, that feeling of not being understood and treated as someone with individual needs is something that has followed me throughout my Crohn's journey.

I was 12 when I started experiencing unusual symptoms, including sickness, rushing to the loo, and shivering in the middle of the night. But things got worse when I was preparing to sit my exams at school. I had really bad ulcers in my mouth, throat and lips, was losing weight rapidly and constantly needing to rush to the toilet. Weeks went by like this and I started to also see blood in my poo.

I was a teenager in so much pain and desperate for answers, trying to sit exams like any other secondary school pupil. So then came all the different suggestions as to the cause of my symptoms from various doctors - oral hygiene issues, oral thrush, endometriosis, and even epilepsy. This was all happening during the pandemic, so it was adding to an already scary time, but eventually I was diagnosed with Crohn's Disease.

It wasn't an easy ride after diagnosis either. It took me many years to find a medicine that worked for me, and the process of trying different meds made life very stressful, especially with things like toilet access. I remember going into cafes and feeling embarrassed when they'd tell me that I couldn't use their toilet unless I bought something.

Adding to that stress, I often found I was being told to wait out my symptoms during a flare up, that it wasn't to do with my Crohn's, and that I could go to A&E if things became worse. It was difficult to receive that kind of response from people who were supposed to listen and understand you.

During one of my annual check-up calls, I explained that I was still experiencing symptoms, despite my medication making it look like things were under control on paper. This IBD nurse really listened to my concerns and arranged a full set of tests, including an MRI, blood work, calprotectin testing, and a colonoscopy.

Through those tests, it became clear that I was still in an active flare and very unwell. A new treatment plan was made, and things started to improve. I also managed to get support from a dietician, who has helped me to understand which foods work for me, and how to eat a more balanced diet. It felt amazing to be heard.

Being treated like a person living with a chronic illness, someone who understands their own body, rather than just another patient on a list brought a huge sense of relief. It's something I wish for everyone living with Crohn's or Colitis.