I LOVE the snow, the feeling of it beneath my board, the glare of the sun and the curves made as I flow down the mountain. My illness has tried to hold me back from snowboarding, but I’m not (totally) letting it. My feeding tube has frozen on the mountain soooo many times and the energy and hydration spent snowboarding is not easily replaced.
For those of you in a similar situation, here is my adaptation to get outside in the winter with a continuous tube feed. (I’m fed via a J tube, but this could apply for continuous G feeds as well – & maybe continuous IV?)
- Hand warmers: duct taped (3 per side) to the formula bag
- Insulation: some sort of fabric wrapped around the formula bag
- Tube to body: taping the tube to minimize the exposed portion, this means wound tubing duct taped to the inside of my inner layer (touching my skin)

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This entry was posted in Uncategorized on April 18, 2017.
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