After 17 years living with Crohn's, I lost 30 cm of bowel, but I'm determined not to let Crohn's define me.

I’ve lived practically my whole life with Crohn’s - since I was eight. Being diagnosed so young came with its own challenges, especially when we were told “kids don’t get Crohn’s Disease”. It was a lot for my family to take in, particularly as my twin brother was also diagnosed. Since then, hospital visits have become part of my life, and I’ve tried what feels like almost every treatment available just to keep things under control. 

Seventeen years on from diagnosis, in August last year, I went to A&E thinking I had appendicitis. After lots of tests, I was told that it was probably related to my Crohn’s. I was given steroids and antibiotics, which helped a little, and I was sent home.

Two months later, everything changed, I was in absolute agony. I had recently transferred to a new hospital for my IBD care. An ultrasound told me I need surgery very soon, an urgent blood test and phone call later, I was told I needed to come into hospital immediately.

I couldn’t just drop everything and go, I was worried about getting things organised with work and making sure I had what I needed to take into hospital, especially since I didn’t know how long I would be there for. So I decided to go the next morning.

When surgery was agreed, things did improve. I got to speak to an amazing surgeon who really took the time to listen to me. 

He sat down with me and went through my entire history from the age of eight. He listened to my concerns, including my worries about needing a stoma, and made sure I felt involved in the decision-making. For the first time during this hospital admission, I felt heard, I felt involved. There was a clear plan.

During my surgery, 30 centimetres of my bowel was removed. It felt like 17 years of living with this disease had finally caught up with me. Thankfully, my recovery from surgery has been quite straightforward. I was well supported by my surgical team and had all the medications explained to me. I haven’t met with my IBD team yet, but I am booked in for a consultation with them in May.

Looking back, what stands out is how different things felt when I had clear, consistent, specialist care.  Earlier access to specialists, quicker transfer to a gastro ward, and more consistent oversight of my care could have made a huge difference to my experience.

Seventeen years on from my diagnosis, I’m still determined to not let Crohn’s Disease get in my way and to live my life the best I can.