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Peg feed advice please

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  • shrew
    replied
    sorry to hear that Steve is in hospital Sue. I hope he is feeling better soon and back home x

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  • Barry52
    replied
    Hi Sue,

    I’m sorry to hear that Steve is in hospital. Please give him my best wishes and I hope he is back home soon.

    Barry x.

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  • Ellie
    replied
    Hi Sue,

    Sorry to hear Steve is in hospital with pneumonia - hope he hurries home to you.

    I also use Nutrison Energy Multi Fibre through a pump.

    Nutrison is made to be given slowly really, so bolus feeding may have been too fast for his stomach?
    maybe he can switch to the non Multi Fibre version, just the Nutrison Energy which is still 1.5cals/1ml. That will allow him to see if it's the fibre that is causing the bloating and bowel issues. (He doesn't have IBS does he?)

    Starting him on a pump for 20hrs in 24 might be the reason for the nausea, continuous feeding takes getting used to. It's usually eased in gradually, but if he's being fed over such a long period it must be at a slow rate - any idea how many mls per hour the pump is running at?

    Is his total calorie intake ok?

    Love Ellie.

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  • Sueb
    replied
    Steve has just had a rig fitted. Can I ask what type of feed you have. Steve was started on bolus feed 2 to 3 times a day using Nutrison Energy multi fibre. He can still eat a soft diet but after 2 feeds he was feeling very bloated and had an urgent need for the toilet.

    Unfortunately he is in hospital at the moment with pneumonia, they think he could have got it from the hospital when the rig was fitted. He is doing well.

    They have changed his feed to a pump over 24 hours with a 4 hour break while he is ill and are trying to increase the rate everyday, but he was feeling a bit sick. He is now on a protein food same make. Just wondering what everyone else uses.

    Sue

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  • Ellie
    replied
    Hi Lynne,

    When and if to get a feeding tube can be a bit confusing to say the least. A lot has to do with what type of MND one has.

    Often those with Bulbar onset ALS need a feeding tube sooner than a person with limb onset ALS. As people point out, a tube is an insurance policy and it is way easier to recover from the procedure when relatively healthy and strong.

    People with PLS or UMN Dominant ALS have slower progression and, as Miranda pointed out, may have a tube for a long time without needing to use it. Also not everyone with ALS loses the ability to swallow.

    It's a bit of a red flag for needing one though if anyone is struggling to swallow safely, coughs when eating or drinking, has sustained weight loss or has marked declining respiratory function.

    Having said all that, it's up to the individual whether or not to get a feeding tube - some people don't want any interventions.

    Love Ellie.

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  • miranda
    replied
    As with most aspects of MND, progression is unpredictable. I had my PEG fitted 12 years ago on the basis of "sooner rather than later". Four years ago a new one was fitted because no one knew if it might have deteriorated. I still can eat a soft food diet and only use the tube for meds. I flush it through with water and rotate it daily which has become routine and no more onerous than brushing my teeth. I hope this helps those of you who are yet to make the decision.

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  • Lynne K
    replied
    Thanks Shrew. I'm going to speak with my consultant about when she would advise I consider it, now or later. I next see her in May. Lynne

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  • shrew
    replied
    hi
    Mick had his rig done in january. He eats and drinks normally at the moment. I suppose its ready then for when you need it. I suppose things can change quickly

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  • Lynne K
    replied
    Hi Jay Tee. What made you have a PEG fitted 3 years ago? We're you able to eat normally then? I can eat most things but slower than in the past. Lynne

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  • JAY TEE
    replied
    Sarah and all, I had peg fitted three years ago .but can still eat well so long as food mashed. Not having Peg food yet having read through the posts I have learnt a lot. So thanks all for comments.
    Best wishes John

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  • Ellie
    replied
    Hopefully it's just your body adjusting to the extra feed Pink, as well as the new ingredients in the milkshake (especially if you're unused to milk products)

    If it persists, you should tell the Dietitian.

    Best of luck.

    Love Ellie.

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  • Pinkelle
    replied
    The pump rate is slowly increasing to the rate i was on. When having the drink it gets poured in and let gravity do the work which is very slow. I also have started having the drink spread through the day. (3portions)

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  • shrew
    replied
    hi Pink sorry ur feeling sickly. I’m sure someone will be along soon with advice. Although Mick has a rig hes just on 50ml water. Hope ur feeling better soon x

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  • Ellie
    replied
    Hi Pink,

    I daresay it'll take time for your system to get used to those extra calories after such a long time without.

    Has the pump rate been increased I wonder?

    Also, how fast is the milkshake being put through the feeding tube? If it's put through quickly, given you are not used to them, it would make you feel nauseous.

    Love Ellie.

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  • Sheila
    replied
    Hi pink,
    Sorry I am not much help as I haven't got a peg or rig at the moment, not yet. I am sure someone will come along with good advice shortly.
    Take care
    Sheila

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