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Thread: PEG or no PEG

  1. #21
    phred bear
    Hello the Kool guy,
    Wasn't able to post yesterday on what was hopefully 'P' day for you, but thinking of you and wishing you good healing and progress.

  2. #22
    Thanks to you all, yes I had the peg fitted last Wednesday, its a bit of job sleeping, but I did mange a few hours after I had it done, but it is real benefit as it used to take me a whole morning to drink a mug of Ovaltine.
    Now I can have a drink in seconds.
    Thanks to all those who gave me advice, and encouragement.

    Last edited by koolsilver; 30th August 2013 at 19:41.

  3. #23
    Forum Member Terry's Avatar
    Join Date
    May 2012
    That's great Mike. Did you have any complications or pain.
    Regards Terry

  4. #24
    Hi Mike

    Hope you get the rest you need, and a fast, speedy recovery.

    Good luck

  5. #25
    No Complications, just the usual pain, but not agony, with the paracetamol the pain is almost nil, the nursing staff were wonderful, I would say this government is trying to save too much money in the NHS, the day nurses were run off their feat, but still done a great job.

  6. #26
    I'm so glad it was successful for you xxx

  7. #27
    Northern star
    Quote Originally Posted by koolsilver View Post
    I have read a lot about PEG and I am seriously considering not having it done, I can still eat although about half the speed of my partner.
    Does anyone know of any one who has refused the PEG, and how they faired afterwards, will MND stop you swallowing eventually or does the swallowing mechanism keep operating, my MND visitor really wants me to have the PEG, but I do not want my body interfered with, I really need some input.
    Well I was very against the Rig I had but now I a, so glad I had it as I would be dead now and I am going in holiday next week . I can't take fluids as my swallow reflex is poor so I would be dehydrated . I can also take my medicines through the rig . It's a traumatic decision and I was very adamant I was nt going to have it but I am mangling now .. I have a blog which describes my experiences with bulbar onset NorthernStar 1.

    Best of luck with whatever you decide

  8. #28
    It has now been 10 days since I had the PEG inserted, all the pain has gone I am not taking any pain killers the hole where the pipe goes into the stomach has healed nicely, I had pain in the first few days after the OP, not agonising pain just niggling pain but the hospital gave enough Paracetamol to kill even that.
    If you are worried about having a foreign object, inserted into your body, by the time you get to having the OP, you are probably not getting enough fluids into your body, you need fluid, if you do not have the correct amount , you will start to sleep a lot, do not put it off until it is too late!

    I now pump my medication through the line and water, I can still eat, so I will continue until that becomes impossible, then that will have to go down the line too.
    I do hope my experience helps you if you are procrastinating, you are given all the syringes and medication, as the hospital cannot use open packets of your personal medication.

  9. #29
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Mike,
    Glad that it went well for you. Be sure to finish with a decent flush with water each time the PEG is used, to avoid any blockages.
    I have 200mls of warm water after each lot of (crushed) meds, which gives me 800mls per day, in addition to what I take by mouth.

  10. #30
    Thanks for the input Ellie, I love Dublin been there many times, I need some further help, before I had the PEG, I wasn't getting very much fluids at all barely two mugs of drink a day, now I am told I need 2.5 litres a day, so I started to pump the required amount inside me, and I am three times during the night to get relief, is that due my bladder shrinking and now I have to wait for it to expand again, or is there another explanation.

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