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Thread: Peg consultation

  1. #11
    Forum Member Ellie's Avatar
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    Hi Lisa.

    Of course it's upsetting for you - it's a brutal reality check isn't it At the same time, you know it's the sensible thing to do, and, once it's done, it'll take one bit of stress away.

    If I can suggest something to you? It is always best that children know exactly how and why equipment and aids will help you, so maybe have your daughter give you a "drink" of water through your PEG so she will understand more and the tube is nothing to fear.

    My own kids used my PEG from a young age and I often was a "Show & Tell" subject as they revelled showing their friends how to give me food and water!! The concensus was it was "so cool"

    Hope your daughter enjoys her next big adventure of secondary school.

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

  2. #12
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    Thankyou ellie, i really really appreciate that advice. And yes, i definitely need ti have it, but i dont want to neeď it! But we've planned in a trip somewhere nice afterward, and my nutritionist is going to hold my hand (or see i don't back out,haha!)
    Lisa x

  3. #13
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    Hi Lisa,
    I am going through the same thing about the peg as well. I somehow need to get over my anxiety about it. The nurse said to me, you can always back out. Which dosent really help. Let us know how you get on Thursday.
    Sheila x

  4. #14
    Forum Member Ellie's Avatar
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    Hi Sheila,

    It must be really hard for you with your anxieties to go through the whole thought process of whether or not to get a feeding tube, then to have the procedure - I'm sorry.

    I'm glad you've a supportive hand-holder

    Do you think there's anything that would make you even a bit less anxious? Is there anything about the whole thing that particularly increases your anxiety?

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

  5. #15
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    Thanks Ellie, I think it is the thought of tubes going down my throat and into the stomach. Even thinking about it makes me gag. I know I am being silly, but it is a major thing for me. I don't mind so much about the hole they make into the stomach, if they could do it all from outside I would feel calmer. But there you go I have to get it right in my head and over come these anxieties. Also I fear choking during the procedure and bleeding. The list goes on. Thanks for listening Ellie you are very kind and have lots of knowledge,
    Speak soon.
    Love Sheila.

  6. #16
    Forum Member Terry's Avatar
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    Hi Sheila,

    They might well recommend that you have a RIG, which is a very similar result but carried out from the outside. You do have a little tube put down through your nose but I hardly felt it, like you I was scared of gagging.

    I don't think that a RIG is quite as good as a PEG but they will advise and hopefully listen to your concerns.

    If you want to know more than there is a information sheet on the subject and I can sort out a link tomorrow.

    Love Terry

  7. #17
    Forum Member Ellie's Avatar
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    Sheila, you are not being silly - everyone is terrified of something and, no matter how irrational that fear may seem to others, to the person with the fear, it's very, very real.

    This will sound odd but, do you think if you watched a video several times of doctors doing a PEG procedure that it would 'desensitise' your fear of having the procedure? This would, in theory at least, lessen your anxiety over the procedure by exposing you to very thing causing your fears. It's maybe something to think about...

    And just to stress to you that you will be sedated for a PEG procedure, so you will be asleep and oblivious to any tubes or scopes - you will wake up and everything will be done. You can make the endoscopy team aware of your anxieties.

    Anyway, I won't go on about it. I really just want to say please don't think you're silly re your feelings.

    Big hugs to you.

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

  8. #18
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    Hi Terry,
    I did mention the rig to my nurse, but she said there was a alot of mucus involved and didn't seem keen. But I see on here quite a few people have the rig. I think it could help me, seems a better way maybe.
    Thanks Terry.
    Love Sheila

  9. #19
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    Hi Ellie,
    I have watched on you tube the peg procedure, it didn't help much. The nurse at the hospital said I would get a throat spray and that's all. She must be wrong because no way I could get through that without sedation.
    Thanks again Ellie for your help.
    Love Sheila.

  10. #20
    Forum Member Ellie's Avatar
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    Hi Sheila,

    If your breathing is good, the preferred method of fitting a feeding tube is by the PEG procedure, if your breathing isn't great, the RIG procedure is preferable.

    In the PEG procedure, patients are given intravenous sedation. This is because they must be relaxed for the endoscope to go down the throat.

    In the RIG procedure, patients are not normally sedated, but get a local anaesthetic nasal spray for the tube that goes up the nose and into the stomach, through which air is pumped so the stomach is inflated.

    Love 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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