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Thread: Indegestion with Peg feeds or not.

  1. #1
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    Indegestion with Peg feeds or not.

    Hi All ,
    This might be a silly question but does anyone know I it's possible to still have indigestion and heart burn or nausea when being peg fed.
    Mum had had the dietition show her a peg feeding tube but she is very reluctant at present. She suffers from nausea, acid reflux and heartburn/ indegestion.
    I was wondering if anyone had experience of these symptoms continuing even with peg feeds. I'm hoping if I get some positive answers that these symptoms are not as bad after having a peg it might be something i coukd tell mum that might make her tbink its a good thing to have.
    I know I can't make her have one and it's her choice at the end of the day but i just want to pass on as much positivity as I can.

    Also on the other hand if mum decides not to have the peg and gets to the point of not being able to eat safely. What sort of symptoms of starvation will she experience.

    Any advice greatly received, Jude x

  2. #2
    Forum Member Ellie's Avatar
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    Hi Jude,

    Does your mum currently take a PPI, eg Lansoprazole, for her tummy troubles?

    To answer your question: Yes, you can get indigestion and reflux if tube feeding BUT if feed is delivered by a pump set to an appropriate rate, the problems should be lessened. It's also important not to lay flat during eating/feeding, or for a while after.

    Either way, if your mum isn't on stomach liner meds, there are plenty of options available to imrove her quality of life - her GP will advise.

    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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    Passing on thanks. Refusing nutrition but accepting breathing machine Is there any p

    Quote Originally Posted by Ellie View Post
    Hi Jude,

    Does your mum currently take a PPI, eg Lansoprazole, for her tummy troubles?

    To answer your question: Yes, you can get indigestion and reflux if tube feeding BUT if feed is delivered by a pump set to an appropriate rate, the problems should be lessened. It's also important not to lay flat during eating/feeding, or for a while after.

    Either way, if your mum isn't on stomach liner meds, there are plenty of options available to imrove her quality of life - her GP will advise.

    Love Ellie.
    Hi Ellie,
    Sorry I haven't answered your question sooner, yes mum takes Lansoprazol at the moment but recently itc eams to not be as effective as in the past. Thanks for the tips on avoiding indegestion if she ever agrees to the feeding tuble.

    I'm not sure she feels ready for it at the moment, but I try to point out her rapid wait loss recently and difficulty in consuming enough calories in a day is only a down ward spial and it's important to fit the tube when she is at the best she can be., leaving it longer might mean she's too ill to fit it. Im going to have a frank conversation with her next week when both my sisters will be with us, as I don't understand how she can use the breathing machine to sustain!/enhance her life but then refuse a feeding tube. What's the point of enhancing breathing ability without nutrition. One without the other is not going to be life sustaining, its hard to get her to understand. On the other hand I do wonder if she feels if she just gradually stops eating and refuses anyother form of nutrition it will be her way out of this tortuous journey of MND.

    This is a tough question to ask but, does any one know how long it takes for nature to take its course, once someone stops taking in all forms of nutrition? Is it a painfull, distressing journey to take?
    No one has explained to mum exactly the consquences of refusing a feeding tube and all nutrition. I think her idea is that she would just gradually, gently, wither away.

    Is it that simple though ? I'm sure it would not be as simple and peacful as she hopes???

    Kind Regards , Jude x.

  4. #4
    Forum Member Ellie's Avatar
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    Exclamation Contains End of Life Content.

    Some people may not wish to read this post as it contains end of life info.


    Hi Jude,

    I am sorry for the dilemna in which you find yourself - your mum undoubtedly has valid reasons for her decisions and, however difficult it is for you and your sisters to understand her thought process, it's her decision to make...

    If a person loses the ability to swallow safely, they are likely to aspirate food or liquid into their lungs causing chest infections or pneumonia. Repeated bouts of pneumonia and/or infections can be fatal.

    If a person loses the ability to swallow and stops eating and drinking, there is no standard 'timeframe' as to how long an individual will survive.

    Palliative Care however is key to end of life care in MND, be it from pneumonia, lack of nutrition or declining respiratory function. Palliative care can be provided for in the home by community nurses or specialist nurses or in a hospice as an inpatient.

    In cases where food is no longer being taken, medicines are given to ease hunger pangs. Moist swabs in the mouth allieviate thirst sensations. Anti-nausea and anti-anxiety meds are given as needed. As the person grows weaker, meds are often given continuously using a syringe driver. If a person uses NIV (BiPAP) it is often discontinued at this stage.

    Because the person is more and more sedated, the end stage is not (how should I put it) spent in a state of pain and agitation, which must make a terribly sad time for family a bit more bearable.

    There are more detailed leaflets available but you may want to digest this first.

    With good palliative care, your mum nor you (nor any of us) should fear the actual physical manifestations of the last days...

    Big hug.

    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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    Thank you so much for this reply Ellie and for initially posting Jude.

    These are the answers to questions I really wanted to know but hadn't dare ask.

    Love Debbie x

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    Quote Originally Posted by Deb View Post
    Thank you so much for this reply Ellie and for initially posting Jude.

    These are the answers to questions I really wanted to know but hadn't dare ask.

    Love Debbie x
    Thanks again Ellie,
    you truly are the font of all knowledge and your answers are always writen so sensitivly. I still fear how supportive our local hospice is going to be towards the end, espicially when our OT says things like, and I quote , " you know we're predominently for cancer patient" and when asking how we would go about restbite care and symptom management she said "well we only have 9 beds you know, so we advise you see your GP to try and resolve symptoms in the community". So in all I don't have much hope of any support.

    Hi Debbie, I always ask questions how ever sesitive because I know this forum is a safe place to ask anything and everyone's reply is with sensitivity, compasion. Plus you can feel confident the aswers come from a knowledgeable source, be it from personal experience or professional knowledge.


    Hugs to you both x.

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    Forum Member Kayleigh's Avatar
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    Hello Jude,

    Sorry to hear that that your mum's hospice isn't being very supportive.

    It sounds like your mum was referred to a hospice that is not ideal for MND patients - but maybe the person who referred her there isn't aware that the hospice is primarily for cancer patients?

    If you have time, perhaps mention to your mum's GP that her current hospice is unable to provide her with the appropriate support and care that she needs. Hopefully your mum's GP will consider referring her to a different hospice (if there is a more suitable hospice nearby).

    Love
    Kayleigh xx
    Last edited by Kayleigh; 15th May 2019 at 19:21.

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