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Thread: Peg/Feeding tube operation - does it make symptoms progress?

  1. #1
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    Peg/Feeding tube operation - does it make symptoms progress?

    Hi all,

    My dad recently had the peg operation. It was a bit of a rushed job as a bed became free so he didn't have much time to discuss it with his medical people. He is a lot more unsteady on his feet since the op a few weeks ago and we just wonder if the intervention was worth it. He's still eating fine and I know the tube is there for the future but it seems such a shame for people to knowingly undergo a procedure which exacerbates the symptoms of this horrible disease. Is there no alternative?

    Anyway, it's done and we can't change that, I just wondered about future patients and other people's experiences.

    thanks x

  2. #2
    Forum Member Calum's Avatar
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    Hi Kolabear - This recently launched site should answer most of your questions/concerns - http://mytube.mymnd.org.uk - I think in the long run getting the tube fitted sooner rather than later is better as surgery becomes more challenging as things progress. Having the tube means that as your dad deals with the various dips and challenges ahead at least he won't have to worry about nutrition. Having the tube should enable him to enjoy eating the things he really likes for longer and supplement with tube feeding for keeping up any short fall in calories. Calum.

  3. #3
    Forum Member Ellie's Avatar
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    Hi kb,

    Sorry to hear dad's feeding tube placement was a rush job.

    Having a feeding tube fitted rarely speeds up progression. It's impossible to say if your dad's weakened legs is due to the procedure or not and, if it is, he may find that as he regains his strength, he'll be better on his legs. Unfortunately, given your dad's age, recovery can be slower and any procedure takes more out of elderly folk, which may explain why they were anxious to get it done asap.

    He has it now so that's one huge thing off the to do list. Feeding tubes directly into the stomach are best for long-term use. Naso-gastric tubes (up the nose & into the stomach) are most often used for short periods of time.

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

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    Thanks both for your replies. That is reassuring. Really appreciate you both getting back to me.

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    Thank you Calum for the mytube link. This is my first posting. My husband was diagnosed with ALS in January and his taste buds have altered so I'm struggling to find things he wants to eat. Also, because he lost a lot of weight, the dietitian has put him on a high fat diet but he's finding all that food over-facing just to stay the same weight. At our second MND appointment last week he asked our nurse for information on a PEG tube which we're waiting for. I will use your link to familiarise myself with the process as my husband doesn't want to be involved in the research side of it so I'm finding the info and telling him all about it. Thanks again.

  6. #6
    Forum Member Ellie's Avatar
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    Hi Annie and welcome to you both.

    Some people's taste buds do change, either due to the MND itself and/or medication.

    If your husband is struggling with the high-fat diet, it may be easier on him, and his digestive system, to eat his favourite normal food more often (with some high fat foods he likes added in) Ask his dietitian if he can do this. It's horrible on the stomach to be fed like a pre-xmas turkey !!

    If he gets a feeding tube, he can use it to supplement his oral intake of calories, or just as a stand by. Having a tube doesn't stop him from eating (swallow permitting)

    Feel free to ask any questions - many of us here have a tube.

    Best wishes,
    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #7
    Forum Member JAY TEE's Avatar
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    Koalabear, guess what I had my peg fitted last June and have not used it yet, luckily can still eat well and managed my usual Saturday meal a curry. Mine is well fitted and my wife flushes it every day and twist it twice a week. So it is ready to be used and I was advised to have it done early.
    Best wishes John

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    Quote Originally Posted by anniewannie View Post
    Thank you Calum for the mytube link. This is my first posting. My husband was diagnosed with ALS in January and his taste buds have altered so I'm struggling to find things he wants to eat. Also, because he lost a lot of weight, the dietitian has put him on a high fat diet but he's finding all that food over-facing just to stay the same weight. At our second MND appointment last week he asked our nurse for information on a PEG tube which we're waiting for. I will use your link to familiarise myself with the process as my husband doesn't want to be involved in the research side of it so I'm finding the info and telling him all about it. Thanks again.
    the MND association has produced an Eating and Drinking guide which has lots of tips and advice as well as recipes. It's also available as a web app.
    Last edited by miranda; 26th March 2018 at 19:37.

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