At the age of three I was diagnosed with ulcerative colitis. After six months of uncertainty and tests I was put onto immunosuppressants and steroids to manage the condition. I failed to absorb all the nutrients of the food I ate and was falling behind my peers in height and weight.
That is when I was put onto enteral feeding. It was daunting at first and my parents worried over whether it was the right thing to do, but after another eight years of having one litre of supplementary feed every night on top of the food that I managed to eat, I caught up with my twin sister in height and weight.
My family helped me accept the tube by giving them names, my first was called "Gutsy Angel" and I have had many others since. I’ve kept up the tradition of naming them; my current one is called "Phil".
My family and I don't allow my tube to stand in the way of me living a life. We have been to Florida twice, Crete many times, swimming with dolphins, enjoying horse riding, and I just attended my school prom.
Going on holiday is daunting for everyone, but we are lucky enough to have a great homecare company who arrange and deliver all my feeds to the destination for me so I only have to travel with a few days instead of two weeks' worth of supplies. They provide letters and contact details to assist me getting through airport security and then there is the help and support from PINNT. PINNT offer invaluable guidance and are on hand to provide emotional support through the wealth of the experience of their members.
Looking back, my first tube was placed on July 4th and although I am not American I believe that this is the day that I gained back some of my independence from ulcerative colitis.
My one wish: That the backpacks which make things much more portable and practical were available in exciting colours, grey and black are really not my style!
I know that my parents would love it if the pump could have a louder alarm as I tend to sleep right through it and my mum, dad and sister are the ones who are woken up and have to turn it off and correct the problem.
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