I'm 44 and live in Oxford. I am a wife and mother of two and over the past few years I feel that I have spent more time in hospital than out of it, but currently I am back at home.
I began enteral feeding via a jejunostomy in March 2012 as a result of gastroparesis and severe gut dysmotility, complicated by an auto-immune thyroid disease and underlying sarcoidosis. In January 2013 I needed a proctocolectomy (removal of the large bowel), which I hoped would improve things although I find I am still trying to recover from the complications even now and require more surgery in the next month to deal with a very active fistula.
As a result of the multiple surgeries, I have been left with severe intestinal adhesions which have prevented me from achieving a sufficient feed flow rate to provide me with all my nutritional and hydration needs; despite spending most of the day being “plugged in” to my feed.
In April this year I discovered I would need to have intravenous fluids through a peripherally inserted central catheter (PICC), five days a week in order to keep me hydrated. I am still trying to get used to this and soon hope to be in a position to manage without a nurse coming to my house at all hours of the day and night.
Despite all the issues and time spent in hospital, these new “plumbing additions” to my body mean that I am now able to stay at home with my family and I treasure that above anything else.
My one wish: Effective and efficient communication between all my care providers. Sometimes even the little things can take such a long time to filter through to all that need to know that it cause massive delays in the treatment.
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