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    #46
    Originally posted by Heather R View Post
    Yes I found with putting the camera down my throat my whole body instinctively wanted to fight and get it out, they kept pausing and asking if I wanted to continue, which was a difficult decision and difficult to communicate back, but eventually I managed to relax and tolerate it. Then I felt really ill when I came out, but feel a lot better now. Hopefully going home tomorrow, and hoping my hands will be able to cope with cleaning ( though I know there are always good careers out there). Thanks all for accompanying me through this milestone x
    So glad you are ok 👍 that’s how I had mine done, I’m glad I had it done when I did because I don’t think I could do it now 🥴 wishing you a good recovery x
    Janette x

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      #47
      Originally posted by Heather R View Post

      .......

      . Hopefully going home tomorrow, and hoping my hands will be able to cope with cleaning ( though I know there are always good careers out there).

      ....
      The weekly advance and rotate might be the difficult bit. Well done for persevering though.
      Each day is made easier with a bit of humour.

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        #48
        Hope you're passed as good to go home tomorrow Heather, only 1 more sleep to go 🤞🤞 x
        ​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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          #49
          I have had a peg for over 18 months. I am not using it yet. I have to flush it once a day. It has leaked from day one and is still seeping daily, but not a problem. I can still swallow if the food is wet/moist. To that end my wife blends/liquidise my main course meals. Meat and 2 veg goes not have much taste when they are all mixed together. I have lost my speech so communicate with a boogie board. I just think I have been fortunate that the MND has not advanced. Hope all has gone well for you. Edwin John S

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            #50
            Wow Edwin, that's a long time to go without needing it, and glad it's been troublefree (if seepage isn't a problem). I finally got out of hospital on Tuesday evening. It's wonderful to be out, though feel pretty wiped out and sore still. The day after my op, the nurse was vigorously cleaning around my stoma, and I got a really bad pain, that lasted about 10 minutes. They called a doctor, I was taken down for an X-ray, nothing found. They had prepared me in case I need another op, and I was cursing that I had decided to have the PEG (My bicarbonate level just before the op was 24.somehitng!! So how to make sense of the 26.5 previously) Next day I went for a contrast scan (I think!). still found nothing, though my inflammation indicators were raised, so kept in another night to start on antibiotics,
            When I got home on tuesday evening, I tried to open the bottle of sterile water I had been given (Baxter) but couldn't figure it out. Does anyone else have these? I used an open bottle in the hospital, which opened by unscrewing the blue, which came off with the lid in tact. However, when i unscrewed the blue on a new bottle, the bottle was still completely sealed! I had to resort to sharp knife to cut the top off, obviously wrong, but the district nurse who came out didn't seem to know either. Got dietician coming tomorrow, hopefully they will know xx
            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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              #51
              Hi Heather

              Sorry it wasn't plain sailing with your opposition.
              From what I can remember you screw the top down even further and it breaks the seal at the top. This then allows you to unscrew the top.
              Hope this helps.

              Kevin

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                #52
                I just use cool boiled water to flush and wet wipes for cleaning.
                Each day is made easier with a bit of humour.

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                  #53
                  Sorry predictive text, should say opp

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                    #54
                    Heather, like Gary, I flush with cooled boiled water - there is nothing sterile about the site. I found this video on how to open your bottle (safely!)

                    ​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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                      #55
                      Thank you Kevin and Ellie and Gary! xx
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                        #56
                        I use good old tap. It's my stomach and when my little angel had one she has no immune system so everything was sterile. She caught encephalitis from a coffee morning. Makes you think don't it? 😉😀x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          #57
                          I was told that it was fine to use tap water by all involved here - so have been doing for the last 18 months. They do have a real concern over the risk of buried bumpers though so insist on a "push in and rotate" daily - where it's weekly in many areas! Just another example of localised differences I guess.
                          Best

                          Robin

                          Diagnosed 05/2017 Familial ALS Limb onset

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                            #58
                            I used tap water for years but as we now have a well, the tap water is rather cold on my Princess tummy, so I now use boiled water, cooled to a nice warm temperature suitable for a 👸
                            ​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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                              #59
                              I use tap water too x

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                                #60
                                Thanks everyone, a dietician came today and said use tap water too and an ordinary cloth for cleaning, (wish all the people I see would agree on advice!) That 's so sad about your little angel, Matthew. Your daughter? How old was she when she got encephalitis? x
                                Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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