I am 40 and live in Lincolnshire with my husband. I was diagnosed with Crohn’s disease in 1996 when I had been working for a bank for just over a year at the time. The Crohn’s was fairly well managed for a long time and I continued to develop a career within the bank, not allowing the condition to stop me. I continued to work after being diagnosed with dilated cardiomyopathy, a form of heart failure, in 2002 and became a branch manager for the bank. It was 2007 when I developed complicated fistulas and underwent several surgeries, all culminating in the removal of my colon and several metres of small bowel, leaving me with two metres of small bowel and an end ileostomy, thus the need for total parenteral nutrition (TPN), which I have now been receiving for six years.
I receive 1.5 litres of electrolytes five nights a week to combat the dehydration that the short bowel leaves me with and this has to be carefully managed as dehydration has a negative impact on the heart failure causing shortness of breath and palpitations.
The TPN has allowed me to live as normal a life as possible. I am self-caring so do not have to rely on any district nurses to connect/disconnect me each time. I think this has been the biggest positive for me as it allows a degree of independence and control which was taken away when the diagnosis of requiring permanent TPN came. It is the lack of spontaneity that has caused my biggest lows, the needing to plan all of my TPN care to the finest detail when wanting to go on holiday or even just a trip across the Pennines to visit family or attend medical appointments. But we, my husband and I, have got it down to a tee now and we managed a trip to Antigua for our honeymoon with 53kg of excess baggage! The TPN therapy is a necessity which you have to come to terms with to be able to live that normal life and that is the biggest hurdle to cross.
I am now medically retired from the bank, but I keep myself busy with crafts at home, finally taking it easy!
My one wish: That all home healthcare companies provide a consistency of care and the same level of care. It seems that some trips booked requiring TPN deliveries to your destination are very easy with no issues, and other times, it becomes a battle just to have our basic requirements agreed. My own home healthcare provider is generally very good, but it saddens me when I hear of other patients who are denied deliveries or ancillaries to a destination, probably because of cost and hassle, when it is just our wish to be able to go on a holiday.
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