I live in Sale, Manchester, am 44 years old and mother of three boys. I guess my story is fairly unusual as there wasn’t any underlying condition that necessitated artificial nutrition. Whilst on holiday in Gran Canaria, aged twenty six and mother of two young boys I suffered a miscarriage and needed a routine D & C operation. This went horrifically wrong and the surgeon proceeded to perforate my uterus and damage my small intestine. The result was to resect all but 30cm of small intestine, which was then reconnected to the large colon. I guess you could therefore say short bowel syndrome.
I have been on total parenteral nutritional (TPN) for eighteen years this October and currently receive five glucose bags and one lipid bag per week.
Being on TPN has never been a problem for me, it's a pain connecting and disconnecting but this therapy keeps me alive. A dear friend, a nurse who trained me in Oxford, said, "You can see it as a disability or a kind of eating disorder", and I always remember those words. I see TPN as a diet that is carefully prepared just for me, containing all my body needs to thrive. It hasn’t stopped me going on to do the things that I've wanted to do in life, like becoming a nail technician, raising my family and going on many holidays both abroad and in England. But it was eleven years ago (after seven years on TPN) I received a miracle! Kian Lee Grant, my third son who is now eleven. He is Salford Royal's TPN baby; he knows lots of the nurses and gets lots of attention.
I was introduced to PINNT right from the start, when life was very scary. Hearing other people's stories was incredibly reassuring, seeing how others deal with the same problems and are like a family of people who are willing to help each other. Seeing Drippy Bear makes me think of the children and their parents going through this, putting it in perspective; what right I have to feel sorry for myself.
If you are new to TPN, feeling fearful and hopeless, I say cling to that little hope and faith that you feel, you will always be surrounded by compassionate, helpful people with the biggest hearts.
My one wish: Many TPN patients like to keep a low profile; no drama attitude. I sometimes struggle with whom to approach with a problem (my dentist, GP, consultant, etc.) especially with new doctors as they can become overwhelmed. I hope personal diaries being trailed by Salford Royal Hospital will help with this.
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