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Feeding Tube? - Rig procedure?

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    Feeding Tube? - Rig procedure?

    I am facing having to make a decision shortly as to whether to have a feeding tube fitted by something called a RIG procedure.

    From a medical perspective, I am being told that it is a very simple 48 hour procedure which provides a form of insurance against future swallowing difficulties. I am also told that I should have it done now whilst I am strong enough.

    At the moment I eat semi-normally - a steak dinner is not so easy bit most fish and meat seems fine. Occasionally, I have a bit of a cough and splutter when something gets caught but if I take my time and don’t eat too many stringy vegetables, I am reasonably ok.
    I feel that my condition is reasonably stable but that stability is very vulnerable. It is now April and looking forward to a nice summer possibly with a foreign trip or two. So I am desperate to avoid any risk that could put me onto a slippery slope on the one hand but equally acknowledge the argument for the future.

    I am concerned about the procedure itself and living with it afterwards - soreness, stomach behaviour, etc etc.. Equally, I am concerned about the consequences if I don’t have it done!
    My ideal option would be to wait until I need it but I am told that that is not possible - it’s a case of now or never!

    I would be very grateful to hear from both anyone who either has had it done and can tell me more about it and anyone who has not had it done and is living without one!

    #2
    Hi Julian. There are defo friends on here that know just about all there is to know about rigs. You asked for comments from anyone who is living without one. Well my wife never wanted one and would not have one. Sadly she passed away a few months ago. It was not the easiest thing to watch. I won’t go into detail here but PM if you want more detail

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      #3
      Julian50 The RIG procedure is straighforward and takes about 30mins. You can expect to be sore for a couple of days and uncomfortable for a few days more - most of us get away with taking paracetamol or ibuprofen, it's quite minor pain although not for some people.

      If you don't use the tube for feeding, you do have to flush it daily with water to maintain its integrity.

      A big factor in being able to place a feeding tube is breathing - although the RIG procedure can be done with the person wearing NIV, it can get complicated if lying flat for 30mins is an issue. If a person loses too much weight, that might also complicate getting a feeding tube. I say this so you know that you can defer the procedure if you think it's 'too early' to get one - yes, you may have time, but know what to look for.

      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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        #4
        Bowler Phil, personally, I don't think the realities of *not* having a feeding tube should be 'hidden' in PMs, if you don't mind me saying...

        Everyone needs to make an informed decision on whether or not to get a tube and the better quality info people have, the more correct their decision. Lots of people will read this thread with interest.

        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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          #5
          I had a PEG fitted at the beginning of November. If I hadn't had it done I would have died of starvation at the beginning of March.
          Each day is made easier with a bit of humour.

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            #6
            Have a look here, it made my mind up.

            https://mytube.mymnd.org.uk/
            Each day is made easier with a bit of humour.

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              #7
              hi julian.

              my husband had a peg fitted last year. he wasnt keen on the idea and made me cancel the first appointment. then after talking to our daughter he decided to go through with it. i will admit he was worried sick but he went ahead and had it done and have had no problems. about 2 months ago he started having coughing\choking problems. not always to do with food but it was a bit of a worry. he has been warned not to eat any more but there's nothing wrong with his mouth or swallow and i am certainly not going to deny him a bacon sandwich if he wants one. he is now having feed through the tube and seems quite happy. it's certainly taken away his appetitie. he does have days when he just eats food rather than the peg food but he does have the choice and i have to say the one thing with the peg food is that i know he is getting the right nourishment and he has put on weight and i know he is at less or no risk of choughing or choking. i dont know if there is or could be a problem if you wanted to say go swimming with one. no idea about that. perhaps someone else would know.

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                #8
                Originally posted by Ellie View Post
                Bowler Phil, personally, I don't think the realities of *not* having a feeding tube should be 'hidden' in PMs, if you don't mind me saying...

                Everyone needs to make an informed decision on whether or not to get a tube and the better quality info people have, the more correct their decision. Lots of people will read this thread with interest.

                Love Ellie.
                Of course I don’t mind

                Totally get that and I do agree but it can be upsetting to read and that’s the last thing I ever want to do. However now you’ve raised it I am happy to layout my experience.

                Comment


                  #9
                  Okay so like I said Ann didn’t / wouldn’t have a rig / peg. As a consequence the last 18 months of her life were horrendous for both of us.
                  Bit by bit the type of food she could take diminished to the point where for her last 12 months she survived on Tapioca, custard and yogurt. After 6 months the tapioca was not doable. That just left custard and yogurt. With virtually no calories going in she did as Gary said starved to death. I truly believe had she had the procedure she would almost certainly still be with me today. I would stress Ann knew from day one exactly what she was doing and what the outcome would be. My role was to make sure and to keep checking she understood the consequences and to support her through it.

                  I’m really sorry if this makes for difficult reading.

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                    #10
                    Phil yes it's difficult but then it informs people who want to make a choice.

                    that and what you both went through must have been a nightmare.

                    love and hugs Denise xxx

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                      #11
                      Thank you for being brave enough to share that with us Phil. Of course it is difficult reading but please don't apologise for that. It really helps those of us without a feeding tube to make a difficult and personal decision.

                      Its hard that we have to decide before it is really necessary but I totally get we need to be strong enough to cope with the procedure.

                      Love Debbie x


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                        #12
                        Hi Julian, I have been battling with this decision too. My swallowing difficulties seem to have plateaued and I don't want to have a tube to look after unnecessarily early. But I have recently found that my lungs are getting weaker, and near the point of needing NIV, so I have agreed to go ahead with the op, just waiting for a date now (and hoping my lungs won't have further deteriorated by this date).
                        Bowler, thanks very much for sharing this, must be painful memories. It sounds to have been really tough for Ann, and really hard for you to watch her and good of you to support her doing it. I had presumed that this would have been the tougher option to go through, I'm presuming you just get weaker and weaker and more feeling unwell and unable to do anything, and I think some people choke more and get chest infections? I have agreed to have the PEG because I feel it leaves me with more options, I can feel slightly more in control.
                        Love, Heather x
                        Diagnosed July 2020, ALS bulbar onset.

                        Comment


                          #13
                          Hi Julian,

                          I initially did not want to have a RIG, but glad I did. However there are some maintenance issues to consider other than daily flush depending upon the design you get. My initial rig had a water filled balloon retention design which needs the water regularly changing. Unfortunately a month later the balloon burst and I had to go to a and e for a replacement to be fitted(same design).

                          Another two months on with no problems I was called back into London Barts hospital. This to have a different design fitted called a Monarch. this one is purely a mechanical retention device and just needs flushing daily and rotating once a week. A much better design in my view.

                          I have had no problems since which is approximately four months.

                          I use it daily.

                          Hope this helps with some more background, and detail options.

                          Kind Regards

                          Nick

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                            #14
                            Julian, I asked my neurologist for me to have a feeding tube months ago. I told her I wanted it whilst my lungs are strong enough and for it to be there when it’s needed rather than an emerging procedure. She refused saying that I’m not at that stage yet and that they are experienced in doing this procedure even if breathing is weakened. I guess that different neurologists have different ideas. Lynne
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

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                              #15
                              May I thank everyone for their contributions, some of which cannot have been easy! To Nick, I would ask whether the bursting of the balloon resulted in medical emergency? I notice that most contributors have opted for the PEG as opposed to the RIG - is that for any particular reason?
                              Any further contributions are very welcome!
                              Thanks once again,

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