Justin Hansen relies on TPN to survive. But that doesn’t stop him achieving great things, both physically and mentally.
In October 2013, Justin Hansen and some close friends kayaked more than 400 miles in just 32 days – from the north-east of England to the south-west.
It would have been a fantastic achievement for any fit, healthy man in his fifties.
But it was all the more astonishing given that Justin, 54, from Portsmouth, is entirely dependent on artificial feeding to keep him alive.
For 12 hours day, usually while he sleeps, Justin is hooked up to a pump that feeds liquid nutrition into his system via a tube attached to a vein in his chest.
The liquid nutrition is stored at between 2 and 8 degrees in a dedicated fridge and is delivered weekly to Justin’s house by Bupa.
But if that sounds like it’s simply a case of plug-in-and-go, it isn’t.
To reduce the very high risk of infection, Justin has to create a sterile environment in which to set up the feeding mechanism.
It’s a laborious, time-consuming but potentially life-saving process which he has to go through every day.
“I have developed a daily routine but to be honest, it’s still a complete pain in the neck,” says Justin. “But there’s not much I can do about it, so I tend to focus on the positives in my life and forget the negatives.”
Until October 2001, when he was 41, Justin had been very fit and healthy.
But a series of seemingly unrelated ailments began to ring alarm bells.
He developed rashes, his joints seized up and his nail beds became infected. At one point he had over 100 mouth ulcers and his doctor was baffled.
It was another 18 months before he was diagnosed with Crohn’s disease and only then after being rushed to hospital for emergency surgery to remove his large intestine, or colon.
Far from being the end of the matter, it was just the beginning of a four-year nightmare where Justin was dogged by complications and endless rounds of surgery to combat everything from abscesses and adhesions to infections and fistulas (nasty ‘holes’ in tissue which can lead to life-threatening abscesses).
By 2006, and after a lot more surgery, Justin had lost most of his small bowel too and began to rely on total parenteral nutrition (TPN) in order to survive. He has a stoma and a life support system at home to which he is connected for 12 hours a day.
But how did he manage these complex procedures while kayaking across the country?
“The first thing I did each morning was take my regular medications and check the status of my life support system,” says Justin. “This fits into a backpack and comprises a 3-litre bag of liquid nutrition and an electronic pump to regulate the flow of liquid into my body.”
“Each day I need to infuse two 3-litre bags of fluid, so, twice daily, I need to disconnect one bag and connect a new one,” he continues. “The connection and disconnection procedures both take about 15 minutes. After connecting a new bag of feed the rucksack and contents weigh about 8 kilos.”
“Changing bags requires an aseptic procedure, which I was able to carry out in my cabin on our support boat. I had to ensure the area was clean and sterile, using a selection of antiseptic wipes, dressing towels, trays, bungee cords and carabiners to help set up a ‘sterile field’. Most of the equipment I use, and everything I touch, must be sterile. This means that most of the medical products that I need are for single use only. So each day, I use and dispose of over 30 items of equipment.”
Justin’s physical achievements have helped him defy the ravaging effects of Crohn’s disease.
But neither has he let it stand in the way of academic achievements.
In June 2011, he completed a psychology degree at Portsmouth University. After a brief encounter with a heart infection, a stroke and open heart surgery, he then took an MSc in Occupational Therapy at Brighton University and now hopes to carve a new career in this field.
He says: “Most of my life needs to be planned out days, sometimes weeks or months ahead. Holidays can be particularly difficult to arrange – mainly because of the volume and weight of equipment I need to carry with me. I need an additional 60 kilos (9.5 stone, 132 pounds) of supplies if I go away for a week. Taking liquids in my hand luggage onto planes is also pretty traumatic due to all the paperwork that has to be arranged and the fact that different airports and airlines seem to have their own sets of different rules.”