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Thread: PEG Advice

  1. #21
    Forum Member Ellie's Avatar
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    Some pain is normal Hayls and it does take about 2 weeks for the stoma site to recover fully, so take painkillers if and when they are needed.

    Is the site clean and normal looking, apart from having a feeding tube fitted 4 days ago

    Is it a long feeding tube or a low-profile button? If long tube, does it have a fixator (plastic triangle) near the skin?

    If you are concerned, you should contact the hospital, your GP or nurse.

    And sorry your hospital experience wasn't great

    Love Ellie.
    Last edited by Ellie; 21st December 2019 at 18:02.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #22
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    Hello Ellie,
    Itís got quite a length and Iím sure the tube is dragging/pulling on the stoma site which probably wonít be helping, if Iím lay down or back On the chair the area doesnít hurt and flushes are pain free so I should be grateful, I suppose I should get use to having these changes in my abilities, you all put a brave spin on these things, I think Iím just 4 days in and feeling cooped up, thank you for your reply, Iíll get there

  3. #23
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    Hi Hayls
    I had my peg fitted just over 2 weeks ago. Like you I only stayed in 1 night, couldn't wait to get out. I am still trying to get use to it, I think it all takes a time to settle down. It's odd we have to try to adapt too things we don't really want.
    Take care
    Sheila

  4. #24
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    Hello Sheila,
    Awww thank you for your message. Iíve been getting very dehydrated so Iím definitely feeling the benefit but not being able to walk very much Iím getting a lot of air in my tummy that will just gargle for hours and even cause a bit of pain, Iíve been very lucky that as of Monday I was walking round Hyde Park Winter Wonderland and Iíve been sat or lay down ever since, your helping me see Iím expecting to recover too quickly and that what Iím experiencing is not out of the ordinary, one day at a time, youíre all are so brave, thank you for your support

  5. #25
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    Hi Hayls , I have been getting dehydrated too, and I am not eating so much, so I am pleased I had it done. Should of had it done earlier, as I can hardly walk now, I am getting alot of gargle and wind, how embarrassing. Should be a interesting Christmas. Take it easy.
    Sheila

  6. #26
    Forum Member Ellie's Avatar
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    Oh Hayls, please don't be too hard on yourself!

    Yesterday was only day 4 and people are often kept in for 3-5 days after having a feeding tube fitted. There's you having a wander around a park the day after getting your tummy muscles sliced open (I know it's a small cut, but a cut nonetheless)

    Take it easy and, as I said, if you've pain, don't suffer and take a painkiller - you'll do more harm than good if you keep tensing your muscles.

    As for the gurgles and wind - your stomach was inflated with air during the procedure and what goes in has to come out!! You'll feel more comfortable once it's out. You could use the tube to vent your tummy of air but I imagine it's travelled to your intestines by now??

    Onward and upwards with the hydration.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #27
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    Iím 10 days in and the pain from the RIG has improved so much I donít need Morphine no more however Iím getting chronic muscle spasms in my chest/ abdomen and now my back and Lorazepam isnít working, I canít sit up and stand up for very long before my muscles go into spasm (cause they are in use) itís making it very impossible to get anything done, does anyone have any tips on what I can do or take to help, please

  8. #28
    Forum Member Gillette's Avatar
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    Hi Hayls

    Are you taking any medication for spasms? I take Baclofen through my PEG which mostly keeps the spasms under control.

    Good luck with getting them sorted.
    Dina

    Trying to keep positive, but not always managing.

  9. #29
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    Dina, wow thank you, sounds like itís just what I need, your a superstar, Iím on the case, fingers crossed Iíll have a better new year compared to my Christmas

  10. #30
    Forum Member Ellie's Avatar
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    Sorry you're getting spams in your trunk Hayls.

    The good thing about an antispasmodic such as Baclofen is tht it does reduce the muscle tone and lessens spasms. However it cannot discriminate between normal muscle tone and high muscle tone areas and, given you can walk, may leave your leg muscles too relaxed and affect your walk.

    Have a chat with your GP about the spasms and see what meds, or other treatments such as heat, stretching etc. is best for you.

    Actually, does it only happen after sitting/laying down and then you move to get up?

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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