Day 5 - I live as normal a life as possible
"I have got the travelling with PN down to a tee"
My name is Emma, I am forty-three and live in Lincolnshire with my husband.
I was diagnosed with Crohns Disease in 1996 when I had been working at a bank for just over a year. The Crohns 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 also continued to work after being diagnosed with Dilated Cardiomyopathy, a form of heart failure in 2002 which is controlled by having an internal defibrillator and pacemaker device inserted into my chest. I enjoyed working for the bank and progressed through several roles to become a branch manager.
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 2m of small bowel and an end ileostomy, the reason for me requiring TPN, which I have now been receiving for nine years. I infuse 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 either dehydration or fluid overload have a negative impact on the heart failure causing shortness of breath and palpitations.
I am now medically retired from the bank, but I keep myself busy with crafts at home, finally taking it easy!
The parenteral nutrition (PN) has allowed me to live as normal a life as possible. I am self-caring so do not have to rely on any nursing team 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 home parenteral nutrition (HPN) came. It is the lack of spontaneity that has caused my biggest lows. The needing to plan all 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. However, the HPN therapy is a necessity which you have to come to terms with to be able to live that normal life and I think that is the biggest hurdle to cross, both physically and emotionally/psychologically.
My husband and I have got the travelling with PN down to a tee now and we have managed two trips to Antigua for our honeymoon and our first anniversary, both times with 53kg of excess baggage! We have recently planned our return trip there this coming September after a five-year break from flying. We have however travelled to France in our car fully loaded up; I am glad the Eurostar doesn't weigh our vehicles!
Just recently I attended Carfest, a three-day festival with camping on site. Now I did stay in a lovely caravan that my brother-in-law owns, so not necessarily under canvas, however there was electrical hook-up, mud (lots of!) and scary port-a-loos to contend with, as well as security checks of TPN rucksacks and disabled port-a-loos that everyone used.... GRRR! I had an issue with the disabled loos in that whilst roomy, there was no coat/bag hook to keep my rucksack off the filthy floor, no hand sink or shelving which is essential for stoma bag changing, so I did spend the weekend hoping for no naughtiness from Lulu (yes, that's my stoma's name). Even with these few negatives, I had a blast at the festival. I think this experience has left me feeling very blessed. I loved every minute of the crowds, the rain, mud, fab live music, more rain, mud, good food smells, not so good smells! The lights, colours, noise! It was an assault on the senses that makes you appreciate being alive!
Emma