I am 55 years old and live in Wimboldsley, Cheshire. I was training to be a primary school teacher when I started having problems with my weight and feeling poorly. I had ulcerative colitis about twenty five years ago which meant I had to have an ileostomy. This was fine in the beginning but for the last six years I have had intestinal failure; my intestine doesn’t absorb anything I eat and drink.
I began with enteral feeding; into my stomach via a percutaneous endoscopic gastrostomy (PEG) tube and then into my jejunum (Jejunostomy), but this did not work. So for the last two years I have been on total parenteral nutrition (TPN) seven days a week for twelve hours a day. In the heat I have to infuse an extra litre of saline during the day. I can eat little bits but it does not leave my stomach so I have to drain everything I eat and drink through my PEG tube. I take most medication through my jejunostomy tube and one through my central line.
Being on TPN has made me feel a lot better than I did before. Most days I have more energy than before which means that I can get on with everyday life and visit family and friends more easily. I am actively involved in Scouting, which I can enjoy much more than I did prior to TPN. My husband is very supportive, I used to feel sorry for him when we had to cancel outings because I did not feel well. Thankfully these occasions are far fewer than they were before I went on TPN. I can now even walk the dog.
I am really lucky that my consultant near my home listened to me and moved me from the first hospital he had sent me to, to St Marks in London. It may be a six hour round trip but the care and support I receive is fantastic and I have no problems contacting staff because they use Patient Knows Best principle, meaning I can contact them anytime, day or night. I have never had to wait too long for a reply and this can be either by email or a phone call.
My one wish: It would be that I could make contact with people nearer to home with the same problem. There are times when you feel isolated and alone as it is difficult for those without the problem to understand the frustration of being tied to a machine for twelve hours a day seven days a week.
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