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    To PEG or not

    I hear a lot of us are refusing to have a PEG feeding tube fitted. While I respect their wishes I would like to point something out: You will loose the ability to swallow food long before liquids but only some liquids. When your tongue becomes weak you can't move it around, and when your cheeks and lips loose feeling food gets lost in your mouth. You will spend more time cleaning your teeth than eating. Oh and food gets stuck in your throat. Basically if you become too weak for an operation you will starve to death. Now that's maybe what you want but at least be honest with those people around you when you try and explain. Have a great day

    #2
    Well done. That was a very honest and personal description of what is in store for those that think not going through with the feeding tube will be like. It doesn't sound nice to have it done but the alternative is a lot worse. 😐

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      #3
      Thankyou. I can pass the info on, but the decision is out of my control.

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        #4
        I know but unless someone's tells us what it could be like we would never know.

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          #5
          I've agreed to get my PEG fitted in coming weeks, can still eat and drink OK but consultant advised this was the time to do it so I said yes!

          Neil

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            #6
            At least if it's in place you have a choice weather you use it or not. Matthew enjoys experimenting with his not sure I'd recommend what he does

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              #7
              My wife decided for the PEG which was fitted just at the beginning of the lockdown. We had to have it privately because at the last minute the procedure was cancelled at UCLH. She hasn't needed it yet, and she is ambiguous about using it. In her darker moments she feels it would be better to refuse all intake and drift away like that. For me as her carer this is a really difficult thing to contemplate, but I will have respect her wishes if that's what she decides. I hate the stress and difficult decisions this disease forces you to deal with.

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                #8
                Well I don't follow the feeding plan and just syringe a bottle when my stomach tells me it's empty, I'm not doing it to stay alive, just to feel comfortable. 😁

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                  #9
                  the responsibility is a dreadful. stephen had finally agreed to a peg after i agreed to him having it done and then having to phone and cancel. now he is going ahead. i have the consent forms to sign and after reading them there is a part of me thinking what am i signing here but then if you read the paper work that accompanies medication i dont think you would take the stuff because you could end up with worse. i suppose its like clothing that comes with 'dry clean only' even thought its just made of cotton. if you sign and agree its your fault. so i felt panic but i if hes got it then he uses it or he doesnt. if there is a problem i dont know how i will feel. im just dreading the day we go to the hospital. i just wish he would talk about his thoughts and feelings. sometimes when we are talking to the doctor i feel as though i am doing all the talking. last time the doctor actually said 'let him speak!' then i told him about him not exactly being polite when talking to people (enough to make me want to hide) and the doctor said well you need to tell him to shut up. ok you just told me to shut up so which is it?! life sure can be stressful.

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