Will's blog

Age 19
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In December 2016 I was diagnosed with Crohn's disease at Evelina London Children's Hospital. I was 12 years old.

Before I was diagnosed, my life became more and more restricted. I was constantly exhausted, I wasn't able to go to school, I was getting endless stomach aches which was stopping me from eating. I lost lots of weight and I wasn't able to stand for long periods of time. Going to the toilet was a painful experience and would often take more than 10 minutes. I couldn't run, and my walking pace was slower than a snail's. This was partly due to osteoporosis that developed as a result of the Crohn's disease because of the steroids I had to take to help with inflammation. I also stopped growing, which is still a factor I am reminded of every day!

However, thanks to diet and medication and prayer, my illness is fairly under control now. I have had to amend my lifestyle though to enable this to happen. Since 2017, I decided to go on a diet called the specific carbohydrate diet. It restricts a lot of foods we normally eat with the aim being to improve the gut microbiome. This diet has massively improved my health. I have been on it now for nearly 7 years but have modified it along the way.

At Evelina London I received countless treatments. I have mainly been seen by the gastroenterology team who treat children with conditions affecting the stomach, bowel and pancreas. When I was first diagnosed, I was put on exclusive enteral nutrition (EEN) which is a diet of no food, but instead drinking litres and litres of a power called Mondulin mixed with Nesquik and water for 6 weeks. This was not successful and after 3 weeks I was taken off it. I was then treated with prednisolone (steroids) which was very effective while I was taking them, however this only lasted 9 weeks.

I have also had trouble with compression fractures of the spine and osteoporosis (fragile bones) so I have seen the endocrinology team too as they treat medical bone disorders like osteoporosis. When I was diagnosed with Crohn's disease I had an endoscopy and colonoscopy and this was repeated a few years after diagnosis. An endoscopy is a test they used to look inside my body, where a long, thin tube with a small camera inside was inserted into my body. A colonoscopy is a type of endoscopy that is inserted into the bottom to check the bowels. I also have had many MRIs, bone density scans and ultrasounds and too many blood tests to count! 
As part of my treatment, I used to have infusions of Infliximab (a common medicine used to treat Crohn's disease) and Zoledronic acid (a medicine used to treat osteoporosis), so I was a day patient at the Snow Fox ward every 8 weeks. Being a day patient means that I needed to stay on the ward because the infusions would take a long time, but I didn't need to stay overnight. The first Infliximab infusion required me to stay overnight so the doctors could check it was working properly, but after that, the infusions gradually got shorter as they were able to increase the speed of the drip. At first it took about 2 hours but my last one was closer to 45 minutes. I got to know the staff there very well!

My experience of Evelina London has been really amazing. I have been cared for on a level that couldn't be found anywhere else.
They made it easy to ask questions and let me know exactly what to do after my appointments. They made sure everything they said was easy to understand for a young child. The teams who cared for me were incredibly friendly and brilliant at what they do. All the nurses are so approachable. The nurses in Snow Fox ward are friendly and lots of fun, always willing to listen to a joke. I visited recently and they remembered me despite the fact I hadn't been there in a year!
The gastroenterology and endocrinology teams have been knowledgable and easy to talk to. I always felt I was in good hands when I had an appointment with them.

Recently, I transitioned to adult care. This was handled really well. At first I had appointments with both the paediatric and adult gastroenterologists. They made sure I was confident in looking after my own health and less reliant on my parents answering the questions.

We sometimes say that even though I would not have chosen to have Crohn's, if you are ill as a child, Evelina London is the best place to be looked after. I have lots of positive memories of the time I spent there.

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