A Day in the Life of a Gutless Kayaker

I am connected to my life support system for 24 hours every day. This is a result of Crohn’s disease. So, the first thing I have to do every morning when I wake up is to take my regular medications and check the status of my life support system. This system, which fits into a backpack, 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. 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 can carry out in my cabin on our support boat. I need to ensure that the area I use to carry out these procedures is clean and sterile. I have 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. Each day, I use and dispose of over 30 items of equipment. The aim of this process is to safely connect a giving set (clear plastic tube) between the bag of feed and the Hickman line (catheter inserted into my bloodstream) that emerges from my chest.

The electronic pump can be programmed to control the rate of flow of intravenous nutrition, dependent on fluid volume and the length of time required for the infusion. If the pump detects any problems with the flow it will alarm. Problems are usually to do with disruptions to the flow caused by the tube (giving set) getting scrunched. When this happens I need to take off my pack, take out the pump and figure out what needs fixing. The pump has a small screen that indicates the type of problem and I decide how to resolve the problem.

Sometimes I am able to sort things out from within the kayak. Other times I need to paddle to the canal or river bank, get out and then fix the problem. This can be very time consuming and increasingly annoying if it happens more than a few times a day.

I put on a new bag of feed just before the day’s paddling starts and set up the second bag in the early afternoon once we’ve reached our destination for the day – this bag will last me through the night. Fatigue has been a constant problem for me since I have been using Total Parenteral Nutrition (TPN) – regardless of whether I’m kayaking or chilling out at home. I haven’t had a decent night’s sleep since 2003, and wake up automatically about every two hours or so to check that all my medical bits and pieces are working fine. And to empty the stoma bag if necessary. This happens a few times through the night until the next morning, and the whole cycle starts again.

Despite being connected to this system for 24 hours a day, I do occasionally manage to forget that I’m attached to it. If I’m sitting down somewhere I will place the rucksack on the ground next to me. I’ve often then wandered off without putting the rucksack on. I always have several pieces of tape securing the giving set to my torso, which act as an early warning system – pieces of tape rip off from my chest before I can get too far from the rucksack.

Plus, once a week I need to change the dressing on the exit site (this is where the Hickman line emerges from my chest). This procedure also needs to be sterile, and takes about 15 minutes to complete. For this I need another five items of equipment, for single use only:

  • 1 bionector (a small filter that fits between the end of the Hickman line and the giving set)
  • 1 luerless syringe (this is to protect the end of the Hickman line while I clean it)
  • 1 sterile wipe (to clean the end of the Hickman line)
  • 1 IV3000 dressing (to cover the exit site after it has been cleaned)
  • 1 Chloroprep broad spectrum antiseptic to clean skin around exit site

Here is a list of the single use items that I need each day

  • 8 dressing towels
  • 2 giving sets (tube connecting the feed to my body)
  • 2 10ml sterile flush syringes
  • 4 detergent wipes
  • 12 antiseptic wipes
  • 4 pairs sterile gloves
  • micropore tape
  • spirigel antiseptic hand cleaner
  • 2 3-litre bags of feed
  • kitchen towel

Reusable items

  • 2 rechargeable long life batteries
  • 1 electronic pump
  • 1 battery charger
  • 1 flat tray
  • rucksack
  • carabiner and bungee cord to hang up feed whilst connecting