My name is Katherine and I am 14. I was diagnosed with Crohn’s disease on the 29 December 2017.
In August 2017 I started experiencing symptoms which were too similar to Luke’s for comfort (Katherine's brother Luke had been diagnosed with ulcerative colitis). On 5 December 2017, I had my first pediatric gastroenterology clinic appointment. My consultant was sure I had ulcerative colitis (UC) - like Luke - but he would need to do a colonoscopy to check. The pain got progressively worse and no pain relief was working. I had an urgent colonoscopy on the 29 December 2017.
My consultant was very surprised to see that I had Crohn’s not UC. He told me I had to go on a Modulen diet in the new year (which I was dreading). We got a call saying my biopsy results were back and that I needed to start Modulen immediately. Just having not very pleasant shakes every day was difficult, but I was determined to drink them to make me better.
I was taking the shakes to school and sitting with my friends, that was the most difficult. They would have a drink with me as they did not want to eat in front of me. They were so lovely.
Modulen did not work and I became more unwell very quickly. The doctors were good because they gave me an appointment quickly and I was prescribed steroids.
After a few weeks of steroids, they weren’t having any effect on my Crohn’s, we had been in touch with the IBD team and they were considering taking me into hospital. That weekend, I was in immense pain and went to A&E on the 3rd March 2018, I was admitted to hospital in the early hour of Sunday morning and I was given high dose IV steroids. After a week, the consultant conceded they just did not work for me!
After spending 11 days on the children’s ward (where I have to say, the nurses and doctors looked after me so well) I was sent home, I was put on a new infusion medication, Infliximab. Thankfully, that has been working well for me and I have regular infusions. I still suffer with joint pain and tiredness, but I am feeling better.
I am lucky to have my family and friends to support me. My school friends always check up on me to make sure I am okay.
I have also met some friends while having my infusions at hospital, this is nice because we share our stories and text each other to make sure we are all okay! Friendship and laughter are great medicines!
Photo credit: Vicki Sharp Photography
help children like Katherine by donating now
Your support means we can do more research to understand the causes of IBD, and we can provide information and support to more families with a child affected by inflammatory bowel disease like Crohn's, colitis, unclassified and very early onset IBD.
single donationshare your story
Telling your story can be really helpful for others, and give useful insights to everyone about what living with inflammatory bowel disease (IBD) is really like for children and young people, and their families.
add your voice