Paddling with Crohn’s, stoma and TPN

Justin says:

Logistics for this trip are mind boggling! Packing equipment is a major challenge. There are over 50 separate items of TPN, stoma and ancillary supplies to take. I’ll need nearly 300 units of some of these items! Plus my regular medication. For this reason alone it can take many months of planning. This is before even thinking about clothing and kayaking equipment, accommodation and food for the crew and son on.

It’s a far cry from my earlier life when I would spend about 15 minutes packing before heading off around the world for 2 years. I still hate planning of this sort, and I depend totally on and thank everyone who’s helping make all this possible – my sister Victoria, skipper Richard Carpenter, fellow paddlers, St Mark’s Hospital, Bupa, sponsors etc.

One of the most frustrating and debilitating aspects of my condition is fatigue. I could happily doze off at any moment regardless of how much sleep I may have had. This means my hours of activity are severely limited. We are usually on the water by 9.30 and could finish any time between about 2.30pm and 6pm. Then I head to my cabin to deal with my medical procedures. My day consists of either paddling or sleeping. It is for this reason that our 420 mile kayaking trip will probably take longer for us than would normally be expected. We have set aside 30 paddling days, plus 2 days off, to get from Skipton to Bristol which should allow me enough time to rest en route. Personally, I’d be happy to not have the rest days, but I’ve included them for the benefit of my fellow, non-bionic, paddlers.

Another aspect of my condition that has to be carefully monitored is dehydration. Exercise of any sort, sweating or changes in temperature, can very easily cause me to become dehydrated. Drinking fluids makes the problem worse! The only way for me to counter dehydration is to be connected to my liquid nutrition or a saline drip. In this way, fluid is pumped directly into my bloodstream. For this kayaking trip we plan on paddling for about 6 hours a day. I will not be able to achieve this without additional hydration. So while the others are having a lovely refreshing pub lunch next to the canal, I shall be sitting there hooked up to my little backpack full of intravenous feed.

My feed comes in two 3 litre bags. One is for nutrition – I am connected to this one while I paddle. The other is for hydration – I am connected to this one overnight. I usually switch bags at about 7 in the evening and again at 7 in the morning.

Richard Carpenter coordinates the delivery of all my medical supplies while I happily paddle on ahead. He liaises with Bupa to ensure that their delivery men know exactly where we are on the water and when to deliver.

In addition to these considerations is the stoma (a surgically created opening in my intestine that allows the removal of faeces out of my body and into a collection bag). The stoma tends to have a mind of its own and can be either no problem or a total nightmare. Generally, if something goes wrong it’s more of an embarrassing inconvenience than a full blown crisis. But in any case it’s essential to have some spare clothing and replacement supplies close at hand.

Anything I consume goes through what’s left of my digestive system very fast, and finds its way into the stoma bag. This can be an annoying and uncomfortable distraction whilst paddling, so I tend not to eat or drink anything during the day. Otherwise, I would forever be having to get out of the kayak and emptying the bag.

When I paddled down the Thames a few years ago I had numerous leakages while paddling and decided it was better simply not to eat anything in order to avoid this hassle. After a few years of incessantly trialling various stoma accessories I now have a set up, from Convatec, that has proven itself to be reliable and, so far, hassle free.

If you have any of these conditions or would like to discuss more about dealing with them, please feel free to contact me : info@gutlesskayaking.com

Justin