Announcement

Collapse
No announcement yet.

PEG tube coming out a bit

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    PEG tube coming out a bit

    After a district nurse had undid the clip on the tube and pulled the tube in and out of the hole as a weekly task last Friday, on Saturday I noticed the tube was coming further out of the hole despite the clip still being on. I rang the district nurses, and one came out and refastened the clip, saying it wasn't properly pulled up against the stomach lining before. However, the tube still seems to be able to come out quite a bit, though I am trying to keep it down with a second plaster-thing. (Not sure of the words for these things!). So do I ignore this until a district nurse comes again on Friday? If the tube is loose, surely it must also be loose against stomach wall? (i.e Not enjoying having this tube, but I suppose it will be useful in time).
    Diagnosed July 2020, ALS bulbar onset.

    #2
    Panic not Heather R the fixator, or as I call it the part with two bits that fit together, is very easy to move and a replacement part for any part is easily ordered. PM if you want a detailed explanation. ๐Ÿ‘๐Ÿค”๐Ÿค—๐Ÿ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    Comment


      #3
      Hi Heather. Did you manage to get sorted out? If not could perhaps PM mnd_admin and ask if they could phone your nurses

      Comment


        #4
        Hi Heather.

        Iโ€™ll use the attached illustration to help me explain what is probably happening with your feeding tube, if you donโ€™t mind.

        The external fixator/bumper/clip usually sits about 2-3mm from your skin, the internal bumper usually sits against the stomach wall, or very close to it, meaning that when the bumpers are in their normal positions, the tube cannot move more than a few mm. Your weekly tube in and out dance is done so the internal bumper doesnโ€™t become embedded in the wall of your stomach.

        If nurse #1 didnโ€™t clip your external bumper in place when the internal bumper wasnโ€™t against your stomach wall, you can see from the picture, that the feeding tube would have more length to allow it to come in and out of the stoma site.

        Tubes often have cm markings on them - if yours has, I wonder if you can remember where your external fixator/bumper/clip was before Friday? Or maybe there is a slight indentation on the tube?

        G tube.jpg


        Please donโ€™t be stressed over it, ring the nurse for peace of mind.

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

        โ€‹

        Comment


          #5
          Many thanks you three. I have felt reassured by you all, starting from Matthew. The thing is that the last nurse was supposed to correct what the previous nurse supposedly didn't do, pull sufficiently up to the stomach wall. But anyway the contents of my stomach aren't coming out of the hole, like I worried it would do if the tube was insufficiently pulled up! I keep asking the nurses what the reading on the tube is, as I can't see myself. But they never seem to give me an answer, which I shall ask again for so I can keep a note of it. Helpful diagram Ellie, thanks. Love, Heather x
          Diagnosed July 2020, ALS bulbar onset.

          Comment


            #6
            Looking at the diagram again, I don't have a plate keeping my tube in position, do people normally have this?
            Diagnosed July 2020, ALS bulbar onset.

            Comment


              #7
              Originally posted by Heather R View Post
              I don't have a plate keeping my tube in position, do people normally have this?
              Yes Heather, feeding tubes usually have some type of plastic bit near the tummy, like in the picture, that's not saying they all do, as yours obviously doesn't. If there is no bumper/fixator at your tummy, then your tube will move easily - not neccessarily a bad thing, just odd!

              Any idea of a brand name? Anything written on the ports or body of the tube?

              There's nothing at all on your tube apart from a clamp? By clamp I mean one of these:


              g tube clamp.jpg
              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              โ€‹

              Comment


                #8
                I use this and have very few problems download.jpeg Available f for free from Community neuro contact. ๐Ÿ˜€๐Ÿค—๐Ÿ˜๐Ÿ˜€xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                Comment


                  #9
                  My tube definitely stops when I pull it up for daily rotation and I control any irritation at the site with good old aloe vera. Never without a minimum two tubes these days.๐Ÿค—๐Ÿ˜๐Ÿ˜€๐Ÿ‘xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                  Comment


                    #10
                    I've wondered how it is meant to stay in place. Looking at the photo, is the fixator properly closed ? Don't understand your picture, Matthew, where does the tube come out? Is it just something to attach the tube to? x
                    You do not have permission to view this gallery.
                    This gallery has 1 photos.
                    Diagnosed July 2020, ALS bulbar onset.

                    Comment


                      #11
                      I suppose it would stop it coming out if it was tight against the stomach wall at the other end.
                      Diagnosed July 2020, ALS bulbar onset.

                      Comment


                        #12
                        Too close for too long causes irritation, so loosen regularly .๐Ÿค—๐Ÿ‘๐Ÿ˜๐Ÿ˜˜xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                        Comment


                          #13
                          Thanks Heather, the photo is very helpful.

                          That's a Corflo feeding tube which has a differently shaped external fixator, but it's a relief that your tube has one!

                          I would say it should be fully closed - was it like that only since last Friday or was it like that from the start? xx

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

                          โ€‹

                          Comment


                            #14
                            Stephen hasn't got an external fixation thing.

                            Comment


                              #15
                              ๐Ÿค” Did it ever have one Denise? I think he has a Cook tube, or maybe I'm mixing him up with somebody else... xx
                              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              โ€‹

                              Comment

                              Working...
                              X