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    Tube feeding

    I'm thinking of making a slow transition to tube feeding. My swallowing is getting more problematic and my good arm is getting weaker. I'm still eating three meals a day. I've modified what I eat towards softer foods. So if it's not a daft question, should I start by replacing one meal with 2 bottles of Ensure? Should I have smaller meals and a bottle with each meal? Do people who use the tube let it flow in with gravity or use the syringe plunger? I'm going to ask my dietician the same questions. When you've tried to eat a good diet all your life, the thought of living off 7 milkshakes a day sounds like a disaster. How do you get fibre into your day? I'll probably think of more questions later.
    Each day is made easier with a bit of humour.

    #2
    Hi Gary, I started by when I hadn’t eaten well I’d just replace that meal with a Fortisip, but now further down the line I’m more or less all tube fed, I do try and have a bit of a teatime meal and the odd banana and a soft dessert. So I now have 3/4 shakes a day and actually put weight on. One of the shakes is higher in fibre. Janette x
    Janette x

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      #3
      I use this so my arm doesn’t ache while doing the bolus feed x
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      This gallery has 1 photos.
      Janette x

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        #4
        Originally posted by Nettie View Post
        I use this so my arm doesn’t ache while doing the bolus feed x
        Thanks for the reply, Janette. The holder looks handy. I was wondering how I'm going to keep Louise happy while she stands holding the tube up.
        How are you feeling today?

        Each day is made easier with a bit of humour.

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          #5
          I can’t do without mine it’s a godsend x
          Janette x

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            #6
            Hello, I have high fibre and high calorie shakes delivered free. I use a big syringe at the moment but I need both thumbs to push it in. You can wear a backpack which slow feeds you all day or have an overnight pump feed. I take only drinks through my mouth. There's only so much coughing and flem I can handle. 😁x

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              #7
              Hi I bought some bottles of food for Stephen just incase. He didn't want to eat the other day so I told him I would be feeding him through his peg. Have to say I found it tricky. Last night we tried a 2nd feed. I didn't use the plunger just let the liquid run into the syringe and let gravity do the rest. I'm more organized now. Yesterday the hospital called and now we will be getting a call and a visit from a company that is going to supply food and equipment for free. We didn't expect this so very excited about it. I was worried Stephen wasn't getting enough to eat so hopefully I can stop worrying. I'm not sure how many bottles replace a meal. The other thing is trying to do too much in one go because it will be coming back up the tube. Hopefully when we get a visit we will find out how much and when. 😁

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                #8
                I forgot to say that my nutritionist says 7 bottles a day but I average 6. 😁x

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                  #9
                  I do two bottles at a time with no problems 😁x

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                    #10
                    I was trying to put the feed in and coffee came out. It was like using a vending machine that had thrown a wobbly.

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                      #11
                      Good luck everybody on tube feeding. I don’t have a PEG yet but follow all tips to learn for the future. I noticed that you all mentioned shakes.’ My problem with this in the future is that I am intolerant of dairy. I hope that there are substitutes that have no dairy in them. Does anybody else have the same issue as me and if so how have you managed? Thanks, Lynne
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                      I'm staying positive and taking each day as it comes.

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                        #12
                        GaryM There's no rule book for feeding per se, people's stomach tolerate food and feeding methods differently and, as your digestive system gets used to being fed differently, people change the speed and/or delivery method of their feeding regimen.

                        So, for example, initially you may find that eating a small meal supplemented by liquid feed is too much - often the advice is to introduce new food types gradually if you can - and sometimes it's easier to introduce tube feeding into a stomach which isn't entirely empty. But only you'll know how you feel after you eat and what you can tolerate.

                        Food companies supply various bits of handy equipment, such as Jeanette's clamp, to make life easier. Also, the feeding needs to fit in with the daily household life.

                        If you want to move away from Ensure, Abbott do a 200ml bottle of Jevity 2cal, which is a tube feed, and might be an option. It does contain sucrose, but less than Ensure and, as its name suggests, provides 400cal per bottle.

                        Gravity feeding tends to be easier on the stomach to start with, some people move to using the syringe plunger and others never use gravity.

                        Good luck!

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

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                          #13
                          Lynne K Yes, there are lactose free products. x
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Originally posted by matthew55 View Post
                            I forgot to say that my nutritionist says 7 bottles a day but I average 6. 😁x
                            That's what I was thinking Matthew. Two bottles = 400ml sounds about enough in one go. I'm not sure how many calories per day I'm getting, but I don't think it can be much more than 1500. Still maintaining my weight just about. I'll ask about getting some with fibre, otherwise it'll take even longer to produce a pebble. 😉
                            Each day is made easier with a bit of humour.

                            Comment


                              #15
                              Originally posted by Ellie View Post
                              GaryM There's no rule book for feeding per se, people's stomach tolerate food and feeding methods differently and, as your digestive system gets used to being fed differently, people change the speed and/or delivery method of their feeding regimen.

                              So, for example, initially you may find that eating a small meal supplemented by liquid feed is too much - often the advice is to introduce new food types gradually if you can - and sometimes it's easier to introduce tube feeding into a stomach which isn't entirely empty. But only you'll know how you feel after you eat and what you can tolerate.

                              Food companies supply various bits of handy equipment, such as Jeanette's clamp, to make life easier. Also, the feeding needs to fit in with the daily household life.

                              If you want to move away from Ensure, Abbott do a 200ml bottle of Jevity 2cal, which is a tube feed, and might be an option. It does contain sucrose, but less than Ensure and, as its name suggests, provides 400cal per bottle.

                              Gravity feeding tends to be easier on the stomach to start with, some people move to using the syringe plunger and others never use gravity.

                              Good luck!

                              Love Ellie.
                              Thanks for your comprehensive reply as per usual, Ellie. I have occasionally had a bottle after a meal with no problems. At this stage I can't help feeling that Louise is going to be dealing with this PEG all day, but I'm sure it gets easier once you're used to it.
                              Each day is made easier with a bit of humour.

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