I'm eighteen and I have gastro intestinal failure caused by Ehlers Danlos Syndrome Hypermobility Type and for as long as I can remember I have had trouble eating. It was when I was ten that I started my journey on artificial nutrition, initially with enteral feeding. For a long time the doctors believed I had an eating disorder so we had to fight to see the right doctors and I was sixteen by the time I was diagnosed. It was a relief to know what was wrong with me as it meant I could learn to control my condition better.
When I was seventeen I was put on total parenteral nutrition (TPN) and now have two litres of TPN every night with two lipid bags per week. I occasionally have a few sips of a drink, but I can’t have any more than this because it makes me feel very sick.
Before I was on TPN I couldn’t go to college, all I could do was lie down as I felt so ill; I had no energy and had constant pain and nausea. After my first bag of TPN my mum said I was more myself than I had been for years; happy, talked more and could focus a little to read because my brain finally had energy and even sitting up and walking for a short time became possible. After about a month on TPN I felt ready to start at college but I had to wait a few months until September which was frustrating! I have now completed my first year at college including work placements in nurseries and schools and can go out with my new friends and have a lovely supportive girlfriend. I can do the things that others my age can do now I am on TPN. I have been to parties, clubbing and other adventures connected to my TPN. I do not let it get in my way; it helps me to live my life.
I still find PINNT really helpful especially the magazine and information booklets because it inspires me reading about the achievements of others and gives insight into how others have managed the different aspects of needing TPN especially learning how to make it easier to travel with it.
My one wish: Although I accept TPN and all it involves because it keeps me alive and gives me a life, it would be great if connecting and disconnecting took less time and energy. Then I would have more energy to spend on other things and not have to get up as early to disconnect before college.
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