Justin’s medical condition – Justin’s version

Justin has short bowel syndrome due to complications arising from Crohn’s disease.  Justin thus requires total parenteral nutrition (TPN) and a stoma (ostomy). This is a long term condition that needs continuous daily treatment. This condition is described in more detail, elsewhere on this website, by Justin’s consultant gastroenterologist.

This is how Justin explains it: this is a lifelong condition so it was very important for me to learn the procedures needed to manage the treatment. I learnt this over six weeks as an inpatient at St. Mark’s Hospital, Harrow, in 2004. I have a tube emerging from my chest to which I attach a 3.5 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. It was probably an error during this process that led to me having a stroke and heart infection (infective endocarditis) in 2009 which required open heart surgery and several buckets full of antibiotics to sort out.

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 (the record is just under 2 minutes!). 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 (say, over an hour) I may not eat or drink anything all day for fear of the consequences.

Every day I feel dehydrated but if I drink any liquid I become more dehydrated. I don’t know the medical term for this phenomenon but I think what happens is that any fluid I drink flushes out other fluids/acids that reside in what’s left of my digestive system. My body then tries to restore these digestive fluids by drawing on the liquid elsewhere, eg in cells, around my body.  Therefore, I take some medications that help to stop me from losing fluids and becoming dehydrated.

There is a small electrical pump that regulates the flow of nutrition into my body. This pump and the 3.5 litre bag of feed fit into a small rucksack which I can wear while feeding.  I will be carrying this throughout the kayaking trip. Generally, all this happens overnight, so the rucksack is propped up next to my bed and I wake up in the morning fully fed. And there’s no washing up to do.

One of the main problems with this treatment is that it precludes almost any spontaneity from my life. I must carefully consider the consequences of anything I eat or drink. 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. With enough planning it’s possible to cope with these restrictions although I was defeated on the overnight ferry from Newcastle to Bergen during a storm in the North Sea when everything was flying around my tiny cabin.

Most of my life, therefore, needs to be planned out days, sometimes weeks or months ahead (Gutless Kayaking takes about 8 months for many people to organise). 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.

If you’d like to contact Justin directly, please send an e-mail: info@gutlesskayaking.com