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'Liquid Hope' - PEG and nutrition

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    #16
    I had a rig In sheffield in January. I would imagine that you had the same, Steve. I have no balloon, no nurse involvement, just a feeding tube that has to be rotated every week. Joycie. X

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      #17
      yeah thats the one.

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        #18
        Hi

        My hubby has refused to have one. Has anyone else decided not to have a PEG/RIG? Has anyone changed their mind and what made you change your mind to have one?
        Thanks
        Sylv

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          #19
          My Trevor had a PEG. The food was produced by Fresubin. It was delivered to the door every four weeks following a phone call weeks previously to make sure the date was convenient. It was an excellent service. There was a helpline to phone if any problems with the PEG arose during times when his dietician was not available (say out of hours).
          Trevor did get constipation issues a couple of weeks before he died despite his particular food being the "energy fibre" option. He was very well hydrated too. I am pretty sure that the constipation was not so much a result of the food but of the fact that he was less able to evacuate normally simply due to be exhaustion and the MND itself.
          Don't fear the PEG or food in this country folks.
          X Nettie.

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            #20
            Sylvia, I debated long and hard but it was the common sense approach that swung it. I felt it was better being done sooner rather than later, while I was fit. Now I know that, if I need to in the future, I can get sustenance through it, can take any medication through it. I only use it to flush it out with water at the moment. I am pleased I had it. It is something of an insurance policy. But I know some people never have one. It is your own personal decision. Much love. Joycie x

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              #21
              Approaching the time when a PEG gets fitted makes you curious doesn't it? I haven't done any detailed research but broadly understand the process and some of the issues. Reading Eric Valor's post brought forward questions we must all have - what exactly is it that dribbles down that tube? How effectively does it nourish, sustain and dare I say it, satisfy?

              It doesn't necessarily follow that what is given to the US goose is fed to the British gander, but can the concoctions be that different given the job they do - keep us alive and in trim to fight on.

              My wife is very focussed around the nutrition issue, she lovingly builds my fortifying soups from a huge array of veggies. The idea that these, or something like them, might make it down a PEG tube is intriguing and a great topic for conversation with others, some of whom (here) have skin in the PEG game.

              After all, it's been said many times that we are what we eat.

              Thanks for the responses folks.

              PS: The I pulled the graphic from the web.
              Toodle pip!

              Norman
              Wordpress Blog

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                #22
                Hiya Norman,

                If you’re thinking of putting home-blended food through a feeding tube, make sure the Gatroenterologist knows this beforehand, so you get the correct diameter tube to handle the consistency without clogging tube. (narrow FR sizes aren’t suitable)
                Don’t expect to be able to handle large volumes of food from the start, you’ll need to build up tolerance gradually.
                Dietitian can assess, advise and help.

                Ellie.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

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                  #23
                  +1. i was advised not to put food down, even blended, just too dense.

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                    #24
                    I am not sure but I think people have done that before. Would not know how to search it.

                    I have a size 14 tube which i think is the largest of the two standard ones.

                    I got this blocked by putting a watered down liquid antibiotic down it as it was one of those things, like custard powder, when it is first mixed with a little cold water goes nearly solid when it is under pressure.

                    It's a real bugXXX when they get blocked so make sure that any liquid medicine or other stuff is suitable before hand and use plenty of water.

                    Love Terry
                    TB once said that "The forum is still the best source for friendship and information."

                    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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                      #25
                      THis information sheet does have more info and says:-

                      "No other fluids, including liquidised food or yoghurt, should be passed through the tube as they may damage or block it. This can lead to the tube needing to be replaced sooner."

                      http://www.mndassociation.org/wp-con...be-feeding.pdf

                      Love Terry
                      TB once said that "The forum is still the best source for friendship and information."

                      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                      Comment


                        #26
                        Hiya Terry,

                        I always use fairly warm water with crushed meds or flushes. Meds seem to dissolve easier.

                        Are you still thinking of getting a button?

                        Love Ellie.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

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                          #27
                          It should be here, but I can wait a while as my site is still leaking stomach contents a little.

                          I am still OK drinking and eating, it was just that that medication tasted so bad and it used to stay with me all night. It would have been OK if we used more water, and warm water is nicer and better.

                          Do you use liquid Riluzole, if not what brand do you use Ellie.

                          Love Terry
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment


                            #28
                            No I crush my Rilutek Riluzole in 50mls of warm water and flush with 250mls warm water. I have been doing this for 7+ years without issue.

                            Is your tube ill-fitting causing leakages?

                            xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #29
                              I guess so but it is the largest one. I had a lot of infection earlier and every time it is changed it bleeds a very small amount.

                              With a PEG or PIG it has a lot of time to repair and get better but with a RIG it is in and out every 3 months. They say my site looks good???

                              I swallow Rilutek riluzole, it has a better, longer lasting coating than Teva and the original Riluzole. I think people have had trouble with the coating when crushing but warm water might help a lot.

                              Love Terry
                              TB once said that "The forum is still the best source for friendship and information."

                              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                              Comment


                                #30
                                Learning all the time here. Given the chance I'd squeeze a lamb chop down the thing but I guess that was never on the cards (not sarcasm). I was half hoping that well zipped up juices could do it, but given the narrow gauges and possible complications... For the moment soups and smoothies are working their way south down the throat ok.

                                On another note the OT ladies came up trumps, my electric stand aid arrived today. The transfer from chair, via walker to the loo reached my physical strength and control limit making the operation hazardous. With this stand aid and a commode I achieved another life first, my missus wiped my bum and sorted me out. Funny isn't it how we mentally change gear, a year ago I'd have been mortified and so would she. As it was we just laughed and got on with it - what a trooper she is.
                                Toodle pip!

                                Norman
                                Wordpress Blog

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