I first started getting symptoms of Crohn’s disease in 2006 when I was 8 years old; however it took around 2 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 a number of 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 September, two days into starting at high school, I was admitted to hospital for surgery to have part of my bowel removed as a stricture had developed. However, the surgeon who performed the operation, along with my consultant, decided that removing this part of my bowel was not the best decision as the stricture didn’t seem too bad and thought medication would be a better option. Sadly, the hospital were wrong and within a couple of weeks I was again in a lot of pain. 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. So on the 6th January 2009 I was back in hospital to have the stricture in my bowel removed. The surgery was successful for around 6 months and then symptoms of the disease began to gradually return.
I am now on infliximab infusions every 8 weeks. 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.
When I turned 16 I began the transition between paediatrics and the adult clinic. My new consultant decided to put me on azathioprine to work alongside the infliximab, but unfortunately within a few weeks I was admitted to hospital with Pancreatitis, on the first day of my AS level exams – not good timing! I am now experimenting with oral Methotrexate, but we are trying to find a dose which doesn’t make me feel sick but helps to manage my symptoms, easier said than done. This is still ongoing and I am aware that I may need to inject the methotrexate in the future.
I still experience symptoms of the disease most days and since it has spread to my mouth I now see a specialist consultant regularly in London to manage this challenging area of the disease, mainly through a cinnamon and benzoate free diet. I am so grateful for the huge amount of support I continually receive from my family, friends, sixth form and support groups. Although I have never officially been in remission since being diagnosed seven years ago, I still consider myself VERY lucky after reading what other people have been through and I am determined to not let my Crohn’s disease hold me back from achieving my future goals. Next stop, university!
Charlotte aged 17