Never Give Up.......Motor Neurone Disease.

Tuesday, December 04, 2007

The "PEG"

A new stage in my life starts…

Wheeled into the operating theatre about 11am Tuesday morning 27th November. Twenty minutes later its all over and with Jan walking beside me I am taken up to the medical ward where as it turns out I am to spend the next two and a half days .
The procedure to insert the peg had gone well but shortly after being taken to the ward I was allowed to have something to eat. This was too soon after the procedure and my body reacted by going into spasms of intense pain. Later that day I was allowed to partake of the evening meal and within the space of half an hour the pain returned. A close eye was keep on me during the night with the peg being flushed out every four hours.
The same story followed with breakfast .( most of which I was unable to eat ,so I was given a Fortisip via the peg.) Jan turned up about the same time as the pain returned. So, I was looking forward to lunch which duly turned up. Having eaten and had a drink I needed to go to the bathroom so was moved into the appropriate chair and wheeled in. Jan had to leave at this stage which was fine but within half an hour I had the most intense pain I have ever had in my life. ( if this is anything like having a baby I don't want any part of it, I was thinking)
A shot of Morphine soon had that under control. And again that night some more pain.
I was keep in two days and by the morning of the third was feeling much better. Jan took me back home that afternoon.
It is now a week since peg was put in and have had a few restless nights as body was sore but the sleeping is improving. Walking with the frame has become so much slower as trying to not put pressure on to the wound site.
Do I have any regrets about having the peg put in….NO. I have read plenty of stories for and against having a peg but it all comes down to the individual concerned. Sure I had a lot of pain and wound is still sore ( and slightly inflamed but that is being monitored ) but I went into this with my eyes wide open and still believe that in the long run it can only help me with quality of life and a certain independence.

So, anyone with ALS/MND contemplating having a peg put in all I can say is go for it while you can. It may become your life line....

I want to say thank you to all the staff at Lower Hutt Hospital , you were fantastic in the way you cared for me....


  • Bob,

    I have not visited for a while. It is too bad that you had such a painful experience after the peg install. I was not allowed to eat by mouth for nearly two weeks after the surgery, during which all nutrition was thru the peg. I had no pain associated with the peg feedings. I did have to make sure my head was elevated to present reflux and possibility of aspiration.

    Perhaps eating solids so soon after the surgery was at least a partial cause for the pain.

    I just read your latest entry and I am happy to see that all is coming along well.

    I had my peg installed two years ago and am still fortunate to be able to take all nutrition by mouth. I have no regrets at the early install because there was no way to predict the rate of progression. It has been relatively slow. I can no longer walk, need a bi-level breathing machine at night and can barely speak, but my arms, hands and fingers remain unaffected. I feel so lucky.

    Happy New Year.


    By Anonymous Gamboachuck, At 5:11 PM  

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