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Feeding Tube? - Rig procedure?

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    #16
    Hi Julian. I was diagnosed with bulbar onset in January 2020. I had. RIG fitted in September. I was told that the hospital were fitting RIGs instead of PEGs due to Coronavirus. The procedure took place without incident and I am glad I’ve had it done. My swallow has deteriorated a lot since then, and although I can still eat some foods, it gives me the option to use it if I want, and to prevent dehydration, as thin liquids are now hard to swallow. It also helps me maintain my weight. I suppose it just gives you options for longer, taking away a bit of stress. Good luck, whatever you decide.
    Love, Lizzie

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      #17
      Originally posted by Julian50 View Post
      I would ask whether the bursting of the balloon resulted in medical emergency?
      A burst balloon is not a medical emergency, no, but the tube needs to be replaced quickly. In fact it is advisable to tape the tube to the tummy, so it won't fall out as the stoma itself can close in a matter of hours.

      My tube is replaced at home by my family, so I always have spare to hand. That said, in my 13 years of having balloon retained tubes, not one has ever failed on me.

      Most of us don't get to choose which procedure we have, it's determined by the hospital's preference or an individual's health. Of course there is nothing stopping you asking for a different procedure. x
      ​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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        #18
        Originally posted by Lizzie View Post
        Hi Julian. I was diagnosed with bulbar onset in January 2020. I had. RIG fitted in September. I was told that the hospital were fitting RIGs instead of PEGs due to Coronavirus. The procedure took place without incident and I am glad I’ve had it done. My swallow has deteriorated a lot since then, and although I can still eat some foods, it gives me the option to use it if I want, and to prevent dehydration, as thin liquids are now hard to swallow. It also helps me maintain my weight. I suppose it just gives you options for longer, taking away a bit of stress. Good luck, whatever you decide.
        Love, Lizzie
        Have you been prescribed thickener, Lizzie? It makes swallowing liquids much easier. It's much more convenient putting a scoop of thickener in a mug of tea or coffee than using the tube. Having said that I only started using thickener just after I had the PEG fitted last November and by the end of February I couldn't swallow anything.
        Each day is made easier with a bit of humour.

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          #19
          Hi Gary. Yes I do have some thickener and I find it useful in some drinks eg coffee, but I sometimes just find it a lot easier and less stressful to take liquids through the tube. I use both. Lizzie x

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            #20
            I was lucky enough to get a PEG. It was a simple op and has never caused me as much anxiety as eating or drinking. Don't forget the drugs either. I had first symptoms in Jan 2020 and diagnosed in May 2020. I'm now mute and 100% tube fed. I live alone with no carers. 😉
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #21
              Hi Julian,

              You asked if my burst balloon was an emergency. The only reason I was told to go to A&E was because it happened less than 12 weeks after my original operation. After this time the support nurses can come to your home and replace the tube, a very simple procedure.
              The tube is normally changed after 3 months and then every 6 months if you have the water balloon type. It is at this stage that you may be able to switch to a Monarch tube which should not need changing for a couple of years. I now have all my nutrition, fluids and meds through the tube and have no problems.
              kind regards
              Nick

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                #22
                Julian, there's a very clear guide to RIGs and PEGs on the Oxford University Hospitals website at https://www.ouh.nhs.uk/services/depa...t/peg-rig.aspx I think the idea is that you should have the procedure before you absolutely need it and while you can still easily tolerate it.

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                  #23
                  Julian50 Just thinking, Julian - if you would rather not have a balloon retained tube but hospital insists on doing the RIG procedure, you can ask to have a disc retained tube instead, either initially or, as in Nick's case, at a later stage. Please don't let it dissuade you from having a feeding tube, if that's an important factor in your decision making. x
                  ​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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