I've had a Peg tube since November and started immediately with an overnight pump feed, with flushes of water before and after. Now I am struggling to drink normally as I can only take tiny sips of liquid, so I am starting to have regular 60ml syringes of water via the tube during the day. I've been a bit of a hermit since November but now that Spring is here I hope to go out and about more. My question is, should I take a large bottle of cooled boiled water with me on days out, or can I just buy a soft drink in a cafe or pub and get my husband to administer it via my Peg? What sort of drinks can go down the Peg tube, other than water? What about a glass of wine if I feel like it?! Any tips or advice would be welcome.
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Diagnosed November 21, ALS limb onset, started in right hand June 2020 -
Hi Jane,
Lots of different fluids can go down a feeding tube, including wine 😄
Just be careful it's not too hot, too cold, too thick or too acidic - too many acidic fruit drinks could damage the tube - and I'd still do a water flush afterwards to make sure only water is left sitting in the tube, so you'll still need to bring water with you, or buy some, but maybe not as much.
If strongly coloured fluids regularly go down the tube, it may get discoloured but, in the grand scheme of things, as long as the tube isn't damaged, that's no biggie.
Love Ellie xx
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Thanks for this useful advice Ellie. I'll think of you when I have my first glass of wine down the tube!
Another question I have is: how do I do that thing where people want to answer someone and they type Ellie (or whoever) and it comes out in orange and shows you are answering that person in particular? I'm sure it must be simple but I can't work out how to do it.Diagnosed November 21, ALS limb onset, started in right hand June 2020Comment
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Ellie I seem to have done it without knowing how! I hope I've got the right Ellie!Diagnosed November 21, ALS limb onset, started in right hand June 2020Comment
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Originally posted by Jane View Post
Just remember to 'drink' at normal speed and not pour the glass contents straight down the tube!
Cheers 🍷
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Yup, the One & Only 😉😁😁Originally posted by Jane View PostDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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