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Peg feed advice please

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  • Kayleigh
    replied
    Hi Iron Will,

    You might find some useful information about trousers for gentlemen on the 'Clothing to make life easier' thread - the Able2Wear website is recommended by John (Jay Tee) on that thread:-

    http://forum.mndassociation.org/show...light=Trousers

    https://www.able2wear.co.uk/wheelcha...-trousers.html

    Hope all goes well with kitting out your new downstairs pad. Great that you want it to include a bar! (all round to yours to celebrate the grand opening - what time is happy hour?! )

    Best wishes
    Kayleigh x

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  • Iron Will
    replied
    thanks people. I just can't shift any weight. which brings me to another question if you don't mind. I thought I saw on here that I could trousers with a Velcro flap at the front for using a bottle easier. any clues? my illness is beginning to bite now. legs went ages ago but arms are now very weak. bed and hoist ordered . bit early but I best get them sorted. my downstairs room is built and being decorated. I have asked for a bar in there

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  • Terry
    replied
    Originally posted by Ellie View Post
    Hi Will,

    You may be stuck with a long tube and not be able to have a low profile button if you need an internal length > 5cm, but that's about it.

    Love Ellie.
    For the first time ever, you're wrong Ellie;

    Micky only goes up to 5cm but there are other makes that make them longer. They are not so well made as regard to there fittings and shape but they are available.

    Love TC

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  • Ellie
    replied
    Hi Will,

    I think you'll be OK at that weight to have a feeding tube fitted!

    If morbidly obese people can successfully have a PEG procedure, I'm sure your belly won't preclude you from having it

    You may be stuck with a long tube and not be able to have a low profile button if you need an internal length > 5cm, but that's about it.

    Love Ellie.

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  • shrew
    replied
    Mick is about 106kg. He had a rig January.

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  • Iron Will
    replied
    just reading this thread makes me wonder how I will go on when I need a PEG. I weigh 115kgs, I reckon i'll have to get Dyno rod to fit my PEG

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  • Lynne K
    replied
    Good luck Sheila, Lynne x

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  • Sheila
    replied
    Hi Lynne
    I have my first visit to the clinic in early May. I bet a peg will be mentioned. I am not sure yet what to do. I suppose everyone is different.
    Sheila

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  • Sueb
    replied
    Hi
    Thank you everyone. Steve is obviously very tired. He is using cough assist to get the secretions up and the physios come 4 or more times a day. They are very happy with him. He will taking the cough assist home with and the family are coming in for training.

    Ellie thanks, Steve to have tolerated the feed better today and they been able to increase to 75mls. He is a bit frightened about eating at the moment until the infection is better, he doesn’t want to undo all the work he has done, but will try again once home.

    Terry we are in an excellent ward in hospital. They have had MND patients before and are very aware of his needs. Our MND nurses and respiratory nurse also come to see him regularly.

    Sue

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  • Terry
    replied
    Hi Sue,

    I hope that Steve feels a bit better and that the meds soon start to work.

    Always consider trying to transfer him to the hospice because they generally have a lot more care available and are used to Mnd people. Many of us have been in them.

    Love Terry

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  • Kayleigh
    replied
    Hi Sue,
    I hope Steve is starting to feel much better. Hopefully he will be well enough to return home very soon.
    Love to you both,
    Kayleigh x
    Last edited by Kayleigh; 26 March 2019, 14:22.

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  • Ellie
    replied
    Sue, it took me 10 days to work up to comfortably tolerating continuous feeding at 125mls/hr - started off @25 for 3 days, then upped in increments of 25s untilI had feed at 125mls/h on day 10

    But... I had the luxury of eating orally too, so there wasn't the urgency of "getting the calories into me" so to speak.

    I'm sure he'll get there.

    Love Ellie.

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  • Lynne K
    replied
    Thanks for the info Ellie. You are a star. Lynne x

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  • Sueb
    replied
    Thanks Barry and Shrew I hope he is too. I will pass on your best wishes Barry and hopefully he will be well enough for the next meeting.

    Sue

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  • Sueb
    replied
    Hi Ellie

    Steve doesn’t have IBS. It’s unusual for him to go to the toilet so often and that’s why they gave him multi fibre to start with.

    They started the pump at 30mls and are gradually increasing. He had it at 75mls but then felt sickly so went back to 50mls which he seemed to tolerate. They are starting to increase again and want to get to 100mls. They are talking about pump feed overnight when he comes home. Perhaps all the different medications are not helping also.

    Sue

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