• Charlotte’s Story

    I first started getting symptoms of Crohn’s disease in 2006 when I was 8 years old; however it took around 3 years for me to finally be diagnosed as my local hospital failed to work out what was wrong with me. I wasn’t diagnosed with Crohn’s disease until 2008 when I was 10 years old after suffering with a lot of abdominal pain, weight/blood loss and various other symptoms.

    I was transferred to the Norfolk and Norwich hospital as my symptoms continued to get worse. I was losing weight and my growth was stunted, I was also suffering with fatigue and my face appeared pale and thin, I was in a lot of pain every single day, especially after eating food. After many tests including colonoscopy’s, blood tests, allergy tests, and various scans they confirmed it was Crohn’s disease.

    I was placed on the supplement modulen milkshakes twice in one year to try and see if not eating any food for 6 weeks at a time would settle my symptoms but after this failed along with steroids and other medications, surgery was the only option.

    In November I went in for surgery to have part of my bowel removed but was told afterwards medication would be able to treat it so I returned home a couple of days later when my scars had healed. However the hospital were wrong, I was in so much pain I could barely stand up on Christmas day, let alone eat the lovely dinner my mum had prepared for the family. On the 6th January 2009 I was back in hospital to have the section of my bowel removed. The surgery was successful and since then my symptoms have calmed down.

    I am now on infliximab infusions every 8 weeks after I had a flare up a few years back, it completely changed my life and I was able to continue with my usual activities which was a major achievement for me. The infliximab is now beginning to lose effect so the talk of coming off the drug and on to another biologic is on the cards. A Psychologist and Physiotherapist have both helped along the journey with my Crohn’s disease due to different side effects I was having.

    I still experience symptoms of the disease most days and since it has spread to my mouth it has caused a few more challenges to overcome in my everyday life; however I consider myself VERY lucky after reading what other people have been through and I will not let my Crohn’s disease get in the way of my aspirations in life no matter what the future holds.


    Charlotte, aged 16.  ​