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    PEG update

    I had to discover this myself but if you have or going to have a PEG feeding tube fitted then you really should get one of these: G Tube Holder Feeding Tube Supplies Peg Tube Peritoneal Dialysis Belt Catheter Cover Drainage Belt Pad Abdominal Dialysis Protector Fixation Device Me No tape, no tucking and bare arse sleeping again! πŸ˜„πŸ˜„πŸ˜„x

    51F9fCab8oL._AC_SX425_.jpg
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Good heavens. It doesn't look like much but it has a really long important sounding title

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      #3
      Looks are deceptive πŸ˜‰πŸ˜„x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        Does everyone with a PEG use some sort of bag like the one Matthew has displayed? Or do some just use tape? I'm wondering if the tape will start irritating my skin eventually. Any preferred design?
        Each day is made easier with a bit of humour.

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          #5
          It's a mix, Gary - some tape, some tuck, some let it free, some then switch to the low profile button - whatever suits your skin and situation. The important thing is that after the first 2wks, or as soon as you don't need to cover the wound, that the site itself is left uncovered and kept dry (to help prevent fungus and nasty bacteria flourishing in dark, damp places)

          Love Ellie.

          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          ​

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            #6
            It's been uncovered since the operation, Ellie. My wife has been cleaning the area daily with sterile water following a demonstration by the Abbott nurse on my first day back at home. First advance and rotate booked for next Thursday. I've had conflicting advice about when I can have a shower, but I'm leaving it two weeks.
            Each day is made easier with a bit of humour.

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              #7
              I have to say that the human body is a bit stronger than health professionals say. When my daughter had her peg sterility was essential as she had no immune system. I was in the shower on day three. Common sense is undervalued. πŸ˜‰
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #8
                Stephen was told showering is fine but no bath. I used boiled water for cleaning and flushing. He's had no medical examination since the operation which is concerning. He looks fine but I think after I gave notes to the local gp surgery they should have followed up.

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                  #9
                  GaryM Showering is OK from the day after procedure, just avoid the site and tube. Taking a bath is different, 4 weeks after procedure to immerse tummy in water, so that goes for swimming too.

                  As you get more and more used to the feeding tube, you'll see it for what it essentially is, a mouth, and you'll be more relaxed about it. It's not a sterile area - it sits in the middle of a (hairy) belly, under clothes, catching fluff - and, whilst I wouldn't let dirty hands touch it (or my mouth) I happily 'drink' tap water and wash the area as I would wash any body part. I know this realisation just takes time.

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

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                    #10
                    A good point well made mate πŸ‘x
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #11
                      Mathew, does your daughter have MND too or another condition? Lynne x
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                      I'm staying positive and taking each day as it comes.

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                        #12
                        Sadly she was born with DMS which means dead kidneys. If I wrote my life story no one would believe it was fact. 😍x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #13
                          Mathew that’s horrid. X
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

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                            #14
                            Life is not fair, just or kind, it just is. πŸ˜‰πŸ˜„x
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                            Comment


                              #15
                              Forrest Gump.png
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

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