Heather’s story…
My HAN journey. Seen. Unseen. Support it all…
From 2006 to 2026, I was completely dependent on parenteral nutrition (PN) due to intestinal failure caused by Crohn’s disease.
Over those 20 years, I adapted to life on PN and continued to live a full and rewarding life.
I went on holidays, worked and did most of the things I wanted to do. To my family and friends, what they saw was someone simply getting on with life despite many restrictions. Restrictions such as not being able to join in with swimming or dipping in the sea. And yes, I tried all the dressings available and bought a drysuit, but they did not work out for me. Restrictions on the amount and types of food I was able to consume at social and family gatherings. Restrictions on what I wore, meaning I was never seen without a high-necked top. Restrictions on how I spent my evenings and early mornings.
Going on holiday or even away overnight required planning and being highly organised. Making sure my orders for off the shelf PN and spare ancillary items were placed well in advance. Double and triple checking I that had everything I’d need and making arrangements with airlines when going abroad. Travelling with a huge pile of medically labelled boxes to push around, load onto a coach and check in at the airport. If I was driving, most of the car was taken up with medical supplies. At home my hallway housed a medical fridge and a whole unit of drawers lived in the corner of my bedroom for all the ancillary items. Spare fluids and off the shelf bags were tucked into the bottom of wardrobes.
My family and friends saw me admitted to hospital in 2019 with a line infection which brought into focus how vulnerable I was with a line in place and how ill I could become.
After a year on Teduglutide* I am no longer dependent on PN and have had my line removed. What is unseen now, thanks to growth factor treatment, is the freedom that comes with having choices.
I can accept and enjoy a cup of tea at a friend’s house or while working. I can relax while eating out. I can wake up, get out of bed, get dressed and take my dog straight out for a walk. I can go for a walk late in the evening on a warm day and not have to work out timings for getting my PN out of the fridge, setting it up and factoring in the 12-hour running time which will then affect what I can do the next morning. I can stand under the shower and wash my hair, feeling the water running over me. I can wear a swimsuit and go in my friend’s hot tub. These ordinary actions that most people wouldn’t give a second thought to have given me a sense of normality and appreciation.
The unseen positive psychological impact the success of this treatment has had on me is immense. It isn't just that I can eat, drink and go swimming whenever I choose. It isn't just the time I've regained from organising deliveries, stocktaking supplies, placing orders, and connecting to and disconnecting from PN.
For many years, I believed PN would be part of my life forever and I had to shoulder the responsibility for taking care of my line and carrying out my procedures correctly to ensure I was getting the nutrition and fluid I needed, and to minimise the risk of infections.
Now, that constant anxiety has lifted. The responsibility of caring for my line and relying on PN no longer defines my daily life.
The gratitude, relief and freedom I now feel are largely unseen, but they are truly indescribable.
*Intestinal growth factor