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Thread: peg or not to peg

  1. #1
    jay jay

    peg or not to peg

    Hi all
    I have to see gaztro people on wed about having peg fitted.To be honest the thought terrifies me.
    I know a lot of you do have pegs fitted and wondered how soon this was done
    I am still managing to eat and drink most things and have not lost any weight
    my mnd consultant thinks it would be best to get one before actually need it even if its not used which seems a bit
    pointless to me why have a procedure you dont need.
    What would you lovely people advice do you think its better to have it before its needed or wait and see if it becomes
    needed then have it.
    Any advice would be much appreciated
    Jay jay

  2. #2
    Hi jay jay .. my friend who was diagnosed in November 2015 with bulbar mnd was advised to have the feed tube put in whilst he had good strength and weight as if he lost weight and strength it could take longer to get over or maybe not be able to have the tube fitted ..also before he lost the ability to eat or swallow ..he can eat soft diet at the minute .. so he went ahead and had a Rig fitted .. the Rig and the Peg do the same job they are put in differently .. ....
    the peg is put in from" the inside out "....the rig is put in from" the outside in" ... the procedure was approx 20/30 mins and my friend did not even have sedation and he had no problem .. you will be told by your Neurologist which one they will fit.
    Am sure there are folk on the forum that could tell you more about this procedure than i have .. good luck in whatever you decide to do ..

  3. #3
    Hi JJ Wait . As long as you can eat and drink (Ensure later) I see no logical reason to decide to have one now . Gastro like to tick the box. give it a swerve. Dude

  4. #4
    Forum Member Terry's Avatar
    Join Date
    May 2012
    hi jj,

    So much depends on your rate of progession, your breathing ability, eating, drinking and general health.

    For the vast majority, it is probably better to have one done early on. Some of us, like Dude and me don't need to have it even after more than six years.

    I had one fitted nearly three years ago after a bad cold were I had some real problems drinking.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
    i listened to the advice of my neurologists and the advice on the forum - and had a feeding tube fitted in January 2015 I didn't need it at all till October when I had a succession of medical problems which, for a while, prevented me swallowing

    How I would have got medication down, I really don't know!

    I have real problems swallowing now and am using the peg for feeding.

    It was common sense, this decision to have the peg fitted. I never wanted it but I am so pleased I have. When I had a succession of chest infections in October I would not have been fit for any medical procedure

    My advice to you is. Have it done. It is a safeguard. I have never regretted it

    Much love

    Joycie x

  6. #6
    +1, just because it is there it doesn't mean you have to use it. Get it while you can tolerate it not when you really need it.

  7. #7
    Forum Member
    Join Date
    Jan 2011
    I've had one for eight years and only use it for medication. It's impossible to predict when anyone will need it for feeding so it's not easy to decide on timing.

  8. #8

  9. #9
    My mother waited until she couldn't eat and then had her peg. It leaked into her diaphragm and killed her three days later, she died of peritonitis and this was 18 months after diagnosis. Some would say that she was too weak to have it and the skin too fragile to heal itself properly. Others may say it was hospital negligence. Still others may say this is a known risk with the procedure and it was bad luck of the draw. Either way, I recommend you have it done sooner rather than later to reduce the risks associated with those I have listed above. Either way, please, please, please, please ...... Absolutely insist on having coloured dye put through the tube first and then an X-ray before you are fed through it to ensure there is no leakage. X

  10. #10
    Dude it is an interesting bbc news item - could it work for us.

    JJ. I had a PEG fitted in July 2014 and only recently started to use it for Fresubin drinks as I find with thick saliva they are difficult to swallow. My neuro at the time said early while breathing is good, as one needs to lie on one's back for about 30 minutes. Also the fitter the better. The PEG is no problem nor inconvenient. I have bulbar and so swallowing is tricky, when I need it it will be there. I have no regrets. Xx

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