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Feeding Tube? - Rig procedure?

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  • Ellie
    replied
    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

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  • SallyAnnB
    replied
    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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  • Nick
    replied
    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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  • matthew55
    replied
    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. 😉

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  • Lizzie
    replied
    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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  • GaryM
    replied
    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.

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  • Ellie
    replied
    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

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  • Lizzie
    replied
    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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  • Julian50
    replied
    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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  • Lynne K
    replied
    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

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  • Nick
    replied
    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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  • Heather R
    replied
    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

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  • Deb
    replied
    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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  • denise
    replied
    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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  • Bowler
    replied
    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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