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    #16
    My wife had her peg fitted in January in royal Berks hospital, she was walking the next day up and down the stairs, they kept her in six days, she had a side room and I was allowed to sleep on a mattress on the floor, all the nurses were excellent .

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      #17
      Hi Tim, does she find it uncomfortable to use/live with.
      Regards Jerry

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        #18
        Hi Tim;

        I don't understand why they keep people in for three days let alone six nights when doing a feeding tube opp unless there is a problem. Glad they made you comfortable in there, as my wife slept on a chair but only one night. I am pleased that you stayed with her in hospital as they don't normally have the time or skills to deal with Mnd people that can't speak.

        Jerry; they are quite easy to live with but if your swallowing, eating and breathing are OKish I would probably leave a feeding tube opp for a while.

        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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          #19
          Thanks Terry I'll do that.

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            #20
            I’ve just had my RIG fitted and stayed 1 night thank goodness as 1 was enough, Royal Bournemouth Hospital didn’t have clue what my needs where or what I could do, it was very frustrating, when the doctors came round the next day they could clearly see my RIG was set too tight so reduced the balloon inside to relieve some pressure but I’m convinced it’s too tight still, they’ve told me to wait 2 weeks and it’s only been 4 days, if I walk the pressure on the area where is was fitted feels like it burns and I have to sit down, is this to be expected :’(

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              #21
              Some pain is normal Hayls and it does take about 2 weeks for the stoma site to recover fully, so take painkillers if and when they are needed.

              Is the site clean and normal looking, apart from having a feeding tube fitted 4 days ago

              Is it a long feeding tube or a low-profile button? If long tube, does it have a fixator (plastic triangle) near the skin?

              If you are concerned, you should contact the hospital, your GP or nurse.

              And sorry your hospital experience wasn't great

              Love Ellie.
              Last edited by Ellie; 21 December 2019, 18:02.
              ​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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                #22
                Hello Ellie,
                It’s got quite a length and I’m sure the tube is dragging/pulling on the stoma site which probably won’t be helping, if I’m lay down or back On the chair the area doesn’t hurt and flushes are pain free so I should be grateful, I suppose I should get use to having these changes in my abilities, you all put a brave spin on these things, I think I’m just 4 days in and feeling cooped up, thank you for your reply, I’ll get there

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                  #23
                  Hi Hayls
                  I had my peg fitted just over 2 weeks ago. Like you I only stayed in 1 night, couldn't wait to get out. I am still trying to get use to it, I think it all takes a time to settle down. It's odd we have to try to adapt too things we don't really want.
                  Take care
                  Sheila

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                    #24
                    Hello Sheila,
                    Awww thank you for your message. I’ve been getting very dehydrated so I’m definitely feeling the benefit but not being able to walk very much I’m getting a lot of air in my tummy that will just gargle for hours and even cause a bit of pain, I’ve been very lucky that as of Monday I was walking round Hyde Park Winter Wonderland and I’ve been sat or lay down ever since, your helping me see I’m expecting to recover too quickly and that what I’m experiencing is not out of the ordinary, one day at a time, you’re all are so brave, thank you for your support

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                      #25
                      Hi Hayls , I have been getting dehydrated too, and I am not eating so much, so I am pleased I had it done. Should of had it done earlier, as I can hardly walk now, I am getting alot of gargle and wind, how embarrassing. Should be a interesting Christmas. Take it easy.
                      Sheila

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                        #26
                        Oh Hayls, please don't be too hard on yourself!

                        Yesterday was only day 4 and people are often kept in for 3-5 days after having a feeding tube fitted. There's you having a wander around a park the day after getting your tummy muscles sliced open (I know it's a small cut, but a cut nonetheless)

                        Take it easy and, as I said, if you've pain, don't suffer and take a painkiller - you'll do more harm than good if you keep tensing your muscles.

                        As for the gurgles and wind - your stomach was inflated with air during the procedure and what goes in has to come out!! You'll feel more comfortable once it's out. You could use the tube to vent your tummy of air but I imagine it's travelled to your intestines by now??

                        Onward and upwards with the hydration.

                        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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                          #27
                          I’m 10 days in and the pain from the RIG has improved so much I don’t need Morphine no more however I’m getting chronic muscle spasms in my chest/ abdomen and now my back and Lorazepam isn’t working, I can’t sit up and stand up for very long before my muscles go into spasm (cause they are in use) it’s making it very impossible to get anything done, does anyone have any tips on what I can do or take to help, please

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                            #28
                            Hi Hayls

                            Are you taking any medication for spasms? I take Baclofen through my PEG which mostly keeps the spasms under control.

                            Good luck with getting them sorted.
                            Dina

                            Trying to keep positive, but not always managing.

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                              #29
                              Dina, wow thank you, sounds like it’s just what I need, your a superstar, I’m on the case, fingers crossed I’ll have a better new year compared to my Christmas

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                                #30
                                Sorry you're getting spams in your trunk Hayls.

                                The good thing about an antispasmodic such as Baclofen is tht it does reduce the muscle tone and lessens spasms. However it cannot discriminate between normal muscle tone and high muscle tone areas and, given you can walk, may leave your leg muscles too relaxed and affect your walk.

                                Have a chat with your GP about the spasms and see what meds, or other treatments such as heat, stretching etc. is best for you.

                                Actually, does it only happen after sitting/laying down and then you move to get up?

                                Take care.

                                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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