Man with no bowel is set to kayak across UK kept alive by medical technology and sheer determination
Setting a new world record by kayaking 420 miles across England would be daunting enough for anyone, but for Justin Hansen it poses further challenges as his medical condition means packing more than 192 litres of IV nutrition and 2,000 items of healthcare equipment, weighing in at nearly 10 stone, just to keep him alive.
Hansen – known as the Gutless Kayaker – has virtually no bowel and is fed through a tube. He suffers from both Crohn’s disease and short bowel syndrome and has spent the past seven years in and out of hospital recovering from countless operations, including open heart surgery after suffering an infection.
My consultant gastroenterologist and many other professional colleagues are not aware of anyone, anywhere, ever having attempted a trip of this nature and duration while surviving on artificial nutrition, thus we will be claiming the world record
Despite all of this, the 52-year-old is now planning to set a new world record for the longest duration trip while surviving on artificial nutrition as he will be relying on his nutrition pump and IV food for the whole 32 days. The aim is to raise more than £20,000 for St Mark’s Hospital Charitable Foundation, which will help fund further research into conditions similar to Justin’s.
Hansen said: “We will be starting out on 7 September in Skipton, North Yorkshire, and will kayak the 420 miles down the canals, finishing on Tuesday 8 October in Bristol. I’ve always enjoyed outdoor physical activities and have had a lifelong fascination with water, so kayaking is something that ticks all the boxes for me. Also, with my medical condition now I need to be connected to my life support system if I exercise for long periods of time and kayaking is one of the few sports I am still able to do while connected.”
CME Medical, which supplies the parenteral nutrition pump which keeps him alive, is rising to the challenge as part of its support for his journey by planning to waterproof his Bodyguard 323 Ambulatory Infusion Pump. The company has also been exploring different options including watertight boxes or nano-coating the pump itself.
Kayaker, Justin Hansen, suffers from both Crohn’s disease and short bowel syndrome and will kayak across England for charity
Hansen said: “My ability to complete this trip depends on having a reliable pump that won’t let me down – waterproofing will go some way towards getting the pump into shape for me.
“I have been using the CME Medical Bodyguard 323 Ambulatory Infusion Pump for around four to five years because it is small and easy to carry and use. It has a lot of extra features and is reliable. It is also quiet – I trialled another manufacturer’s pump which sounded like a broken lawnmower and I wasn’t able to sleep! I also like the larger-sized battery as it easily lasts for 12 hours until my next bag and battery change.”
He explains that his medical condition requires him to carry out sterile techniques every time he needs to connect, which needs to be taken into account in planning for the kayaking challenge.
He said: “It is a lifelong condition, so it was very important to me to learn the procedures needed to manage the treatment. I learnt this over six weeks as an inpatient at St Mark’s Hospital in 2004. I have a tube emerging from my chest to which I attach a three-litre bag of liquid nutrition. It takes about 15 minutes to both connect and disconnect the feed and this requires a complex aseptic technique. It’s not rocket science exactly, but it’s really important to make sure that the whole process remains sterile as the feed flows directly into my bloodstream. I need to do this every day and it takes about 12 hours for the whole feeding process to complete.
“I can still eat and drink if I want to, but most foods have no nutritional value to me. With short bowel syndrome anything that’s consumed can make a very rapid trip through what’s left of my digestive system. Therefore I have to be extremely choosy about what, when and where I eat or drink. If I’m very busy, or out of the house for a long period of time I may not eat and drink anything all day for fear of the consequences.
It is people like Justin who can show other patients that life is still possible and dreams are still possible despite intestinal failure
“One of the main problems with this treatment is that it precludes almost any spontaneity from my life. If I want to stay away from home overnight, I need to pack litres of nutrition and a multitude of accessories and I need to make sure that wherever I end up I am able to set up a sterile environment to carry out my procedures. Most of my life needs to be planned out as, for example, if I went away for a week-long holiday, I need take an additional 60 kilos (9.5 stone) of supplies with me.”
During the trip Hansen plans on paddling for about six hours a day and it has taken eight months to plan, including the logistics for getting 18 litres of refrigerated IV nutrition delivered along the length of the waterways, every three days during the trip.
He is also working closely with his consultants to calculate and adjust his intravenous nutrition and hydration levels, and is organising a sterile environment to connect and disconnect the feed twice a day.
CME Medical is planning to waterproof his life-saving Bodyguard 323 Ambulatory Infusion Pump and is exploring different options including watertight boxes or nano-coating the pump itself
He said he is now hoping to find a challenger to complete the journey with him, adding: “My consultant gastroenterologist and many other professional colleagues are not aware of anyone, anywhere, ever having attempted a trip of this nature and duration while surviving on artificial nutrition, thus we will be claiming the world record. This is an exciting prospect. However, I would love a challenger to appear. I will consider this event a success if it inspires someone else on artificial nutrition, or with a chronic disability, to reassess what they can achieve, and then go and do it.”
Dr Simon Gabe, consultant gastroenterologist at St Mark’s Hospital, said of his plans: “It is people like Justin who can show other patients that life is still possible and dreams are still possible despite intestinal failure. This is something that is truly inconceivable for a patient at the beginning of the road, when they are in a hospital bed coming to St Mark’s with bags on their abdomen, in pain, losing weight and having repeated infections. Justin is an inspiration to us all and is the very reason I do the job that I do.”