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Feeding Tube? - Rig procedure?

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    #31
    its ok they have turned up. i dont know what they are called but the pointy bit. its because stephens set up is old and doesnt quite match the uk model. he's going to have to go for a refit.

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      #32
      Originally posted by Ellie View Post

      Oh that would have been unpleasant indeed - having endoscope, feeding tube and guide wire/stitching passed through your mouth isn't for the fainthearted...

      The RIG procedure is usually offered if breathing determines against sedation because the procedure can be done whilst the patient is using NIV, and the tube is placed through the skin, rather than through the mouth. I'm sorry this option wasn't given to you. xx
      I had it done that way, it wasn’t very nice 🙈 apparently they had to mov several body parts to get to the stomach and also discovered I had hiatus hernia also 😬 not looking forward to when it has to changed x
      Janette x

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        #33
        Originally posted by Nettie View Post
        apparently they had to mov several body parts to get to the stomach and also discovered I had hiatus hernia also 😬 not looking forward to when it has to changed x
        Bet they'll draw straws to decide who'll replace it 😍😍😘
        ​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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          #34
          Originally posted by denise View Post
          its because stephens set up is old and doesnt quite match the uk model. he's going to have to go for a refit.
          Ah, do the syringes you use have purple plungers and screw into the feeding tube or are they clear plastic with pointed tips? xx

          ​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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            #35
            denise And, if you do use the purple syringes, do they attach directly to Stephen's feeding tube or do you need an adaptor? xx
            ​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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              #36
              Hi Julian..In my case I was booked for a PEG but when procedure was almost done it was discovered I had polyps in my stomach so the procedure was not completed.I was then told a stomach scan was needed and after that I was advised to have the RIG procedure.
              I wasn’t offered a choice of procedures when the PEG was discussed initially.
              Best wishes
              Mary

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                #37
                The syringes screw in so we have to use adaptors. It's difficult to hold everything keep it all secure. If I tighten it all up I have difficulty getting it apart and if it's not tight enough it empties it all over the place and makes such a mess. 😩

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                  #38
                  Everything to do with tube feeding got their own unique connections in Ireland/UK in 2016 (Europe in 2017) but it appears that Portugal didn't read the memo 🙄🙄

                  Stephen's tube isn't an ENFit tube, so it's understandable that the doctor/nurse wants to change it, apart from you having to use those fiddly connectors which, btw, won't be manufactured for much longer, the tube doesn't comply with current safety standards.

                  I am rather amazed that Stephen had that old style tube so long after the new standard came in... xx
                  ​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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                    #39
                    Think they wanted the wider tube because they've only just started providing the prepared food solutions. I'd have had to liquidise everything to feed him. Stephen was one of two people.

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                      #40
                      So, will he get his tube changed for sure and how does he feel about it? xx
                      ​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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                        #41
                        Yes he's been put forward for it, he will go into derriford for the day. This two pronged thing keeps coming loose and leaking all over the place. The dietician came out to secure it and we have spares. Luckily the are in mount gould which is 5 minutes away. Not sure what they do as this tube is a lot thicker than the one they'll put in its place. Stephen seems very ok with everything. He seems quite happy. 🙄😘

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                          #42
                          Thank goodness they're doing it as a day case, though I daresay you could do with a few nights on your own...

                          It'll be interesting to see if the stoma site will shrink to the smaller tube size. I know that the whole site can close over in a matter of hours if a tube were to fall out, but no idea what will happen in Stephen's case. xx
                          ​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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                            #43
                            Plastic ties and cling film and a washing up liquid bottle might do it. I'll polish up my blue Peter badge. 😊

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