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'Liquid Hope' - PEG and nutrition

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  • FlyingSoupDragon
    replied
    I agree, it would be something but a bit of a faff to set up. I think I'll continue doing what the Romans did for the time being though the minute a proper loo comes back on the horizon I'll be on to Amazon.

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  • Terry
    replied
    I have had that idea as well Norman;

    No not the dragon but a portable loo with a Bio Bidet on it. It would need a water supply and plugged into the electric but it would be possible with a lot of work. Not sure what sort of water pressure is required but a bit more than a level tank.

    Love Terry

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  • FlyingSoupDragon
    replied
    Thanks Steve. I'm using a Stand Aid to get me clear of the bed then put me onto a commode (lovely word: commode>commodium> Imodium>Komodo Dragon> Soup Dragon). It would be a Rolls-Royce device with a Bio-Bidet. 'Amazing the direction the mind wanders when sat on the commode. LOL

    Sorry, I'll get my coat...
    It wouldn't do to sit on this chap!

    Last edited by FlyingSoupDragon; 29 August 2015, 19:13.

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  • Guest's Avatar
    Guest replied
    yes, exactly.

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  • FlyingSoupDragon
    replied
    That sounds like a plan Steve, thanks, I will look in to it.

    Something like this?

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  • Guest's Avatar
    Guest replied
    norm, consider a bio bidet, they are brill.

    my chair goes over the top.

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  • FlyingSoupDragon
    replied
    Learning all the time here. Given the chance I'd squeeze a lamb chop down the thing but I guess that was never on the cards (not sarcasm). I was half hoping that well zipped up juices could do it, but given the narrow gauges and possible complications... For the moment soups and smoothies are working their way south down the throat ok.

    On another note the OT ladies came up trumps, my electric stand aid arrived today. The transfer from chair, via walker to the loo reached my physical strength and control limit making the operation hazardous. With this stand aid and a commode I achieved another life first, my missus wiped my bum and sorted me out. Funny isn't it how we mentally change gear, a year ago I'd have been mortified and so would she. As it was we just laughed and got on with it - what a trooper she is.

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  • Terry
    replied
    I guess so but it is the largest one. I had a lot of infection earlier and every time it is changed it bleeds a very small amount.

    With a PEG or PIG it has a lot of time to repair and get better but with a RIG it is in and out every 3 months. They say my site looks good???

    I swallow Rilutek riluzole, it has a better, longer lasting coating than Teva and the original Riluzole. I think people have had trouble with the coating when crushing but warm water might help a lot.

    Love Terry

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  • Ellie
    replied
    No I crush my Rilutek Riluzole in 50mls of warm water and flush with 250mls warm water. I have been doing this for 7+ years without issue.

    Is your tube ill-fitting causing leakages?

    xx

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  • Terry
    replied
    It should be here, but I can wait a while as my site is still leaking stomach contents a little.

    I am still OK drinking and eating, it was just that that medication tasted so bad and it used to stay with me all night. It would have been OK if we used more water, and warm water is nicer and better.

    Do you use liquid Riluzole, if not what brand do you use Ellie.

    Love Terry

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  • Ellie
    replied
    Hiya Terry,

    I always use fairly warm water with crushed meds or flushes. Meds seem to dissolve easier.

    Are you still thinking of getting a button?

    Love Ellie.

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  • Terry
    replied
    THis information sheet does have more info and says:-

    "No other fluids, including liquidised food or yoghurt, should be passed through the tube as they may damage or block it. This can lead to the tube needing to be replaced sooner."

    http://www.mndassociation.org/wp-con...be-feeding.pdf

    Love Terry

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  • Terry
    replied
    I am not sure but I think people have done that before. Would not know how to search it.

    I have a size 14 tube which i think is the largest of the two standard ones.

    I got this blocked by putting a watered down liquid antibiotic down it as it was one of those things, like custard powder, when it is first mixed with a little cold water goes nearly solid when it is under pressure.

    It's a real bugXXX when they get blocked so make sure that any liquid medicine or other stuff is suitable before hand and use plenty of water.

    Love Terry

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  • Guest's Avatar
    Guest replied
    +1. i was advised not to put food down, even blended, just too dense.

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  • Ellie
    replied
    Hiya Norman,

    If you’re thinking of putting home-blended food through a feeding tube, make sure the Gatroenterologist knows this beforehand, so you get the correct diameter tube to handle the consistency without clogging tube. (narrow FR sizes aren’t suitable)
    Don’t expect to be able to handle large volumes of food from the start, you’ll need to build up tolerance gradually.
    Dietitian can assess, advise and help.

    Ellie.

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