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Thread: Peg feed advice please

  1. #41
    Forum Member Lynne K's Avatar
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    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
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #42
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    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

  3. #43
    Forum Member Lynne K's Avatar
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    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
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #44
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    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.

  5. #45
    Forum Member Ellie's Avatar
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    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #46
    Forum Member Sueb's Avatar
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    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

  7. #47
    Forum Member Ellie's Avatar
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    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #48
    Forum Member Barry52's Avatar
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    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.
    Iím going to do this even if it kills me!

  9. #49
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    sorry to hear that Steve is in hospital Sue. I hope he is feeling better soon and back home x

  10. #50
    Forum Member Sueb's Avatar
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    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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