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    PEG fitted

    I am back home with my PEG and I have to tell you that I have had no pain at any point. Sure it felt odd for a few days but now I have pure aloe vera gel and it's like it's not there. Shame I don't sell it anymore. I'm very happy to have the PEG it as it makes eating stress free! Missed you all x

    #2
    Welcome to the club mate 😘 Wondered where you'd got to.

    So glad it went smoothly.

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

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      #3
      Thanks Ellie, you have no idea how much your reply means to me x

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        #4
        Awesome to here, onwards and upwards, no stopping you now

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          #5
          9 days in and my first day 100% PEG day! I can still chew sort of and swallow when I try but the sheer relief of a day without solid food is hard to explain. It's even worth the hassle of getting the equipment.
          Rock on feeding tubes!!!! x

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            #6
            Are you using a syringe or a pump for the feeding?

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

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              #7
              Syringe due to the fact that my baby daughter many years ago had a PEG. Sadly she didn't make it. x

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                #8
                Oh so sorry to hear that, Matthew 😥

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

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                  #9
                  hi matthew
                  how are you getting on with the peg? my husband was booked to have his done but he panicked and refused to go. he seems to be coming round to the idea so i will be interested in what you have to say and hopefully with help from his doctor he might change his mind and hopefully it will help him.
                  many thanks
                  denise xx

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                    #10
                    Hi Denise, I had nightmares before having it done but now I am so very happy! I use a syringe while my hands work and combine tube with eating 'normally'. I don't feel it anymore and no one notices it. I can't recommend it enough and urge your husband to get it done while he is still fit enough to have the operation. x
                    ​​​​​

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                      #11
                      Today I cooked a soft bite lamb casserole with two veg, whizzed it up in a blender and spent 10 minutes syringing it in. Tough on my muscles but bliss as no bits in my teeth. Best thing that has happened to me since diagnosis is the PEG! x

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                        #12
                        hi matthew - glad you enjoyed it! My dad has MND and is deliberating over getting a PEG. I'm sorry, I hope you don't mind me asking, but how does it feel now that you've syringed the casserole and veg - what is the good feeling you're feeling? Full-ness? Energised? Thank you for replying, and I hope my question isn't inappropriate.
                        Dad's really doubtful about having a PEG.

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                          #13
                          matthew when you bought those foods before that you threw out. couldn't you have put them in the tube? so yeah id like to know how you feel after having a meal like that? to make sure you dont miss out on the taste you could do both really couldn't you? eat a bit and tube the rest? sorry i am just trying to give stephen an idea of what he could do after having it fitted. i have noticed the mnd has some information on youtube but not the same as being able to ask on here.
                          hugs
                          denise

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                            #14
                            Well after I felt exactly as I felt from eating 'normally' and I didn't have the PEG when I threw that stuff away.
                            I do actually taste it when I burp after. Like my ensure drinks. Plus I will not do it every day but it's great to have the option.
                            ​​​​​​
                            ​​​​​

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                              #15
                              I had mine fitted two weeks ago and stitches came out yesterday - bliss. Still on soft food diet and weight is stable for past month. Flushing each day but i suspect my dietitian wants me to start using it - got a conference call with her tomorrow... Blended big soups are very tasty - sausage, beef, lamb, chicken and all with veg.- I have every night and medical milk shakes twice a day. Sometimes we blend a braising steak stew done in a slow casserole with all sorts of veg and potatoes. I have weetabix with warm milk for breakfast and blended soup for lunch.
                              Last edited by jd58; 28 July 2020, 10:56.

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