Feeding tube

[denise]

I would have thought they would have to supply adequate care if you couldn't do it yourself? Though nothing would surprise me otherwise. 😐

[WheelsOfSteel]

Just to throw my own experience into the discussion...
I got my PEG quite early. It was suggested to me as I had noticed my swallowing becoming affected, and I had experienced a couple of breathing "episodes". Although the suggestion was possibly more for their convenience than mine, I agreed.
My PEG was done back in August, but I am still eating and drinking normally.
I thought it best to get it done because, as others have said - it gives you options. It's a way to get nutrition in if your ability to swallow gives up, and it is something that can be withdrawn if you choose to.
We just have to do the regular care regime with daily water flushes and a weekly "advance and twist" (sounds like a dance ).
I would recommend it.

[JamesW]

So I am having a RIG fitted in two weeks time. I only have some very early swallowing symptoms but they are keen to get me one installed and leave it dormant ready for when I need it. I also have some early respiratory symptoms and I think they are keen to do the work now while I can still lay flat on my back.

they are suggesting three days in hospital, is that everybody else’s experience?

[Ellie]

... they are suggesting three days in hospital, is that everybody else’s experience?

Sounds an average length of stay JamesW, anywhere between 1 and 5 days.

You'll be shown how to use the tube and how to care for it, and perhaps you'll have nutrition through it.

If you have a lot of pain or have any problems or questions, you've assistance on hand.

Hope it goes smoothly. xx

[WheelsOfSteel]

they are suggesting three days in hospital, is that everybody else’s experience?

I was in and out on the same day, but PEG and RIG are different procedures.

[Piglet]

My husband went to have RIG several weeks ago and it was unable to go ahead as his stomach had moved too high due to his weak diaphragm. It takes him a long time to eat and drink, he is able to swallow at present but has coughing/ choking episodes.
ideally it’s better to get sooner rather than later.
JamesW good luck with your procedure xx

[JamesW]

Thank you Piglet xx

[JamesW]

Hope it goes smoothly. xx

Me too 🫣🫣😘

[Claireflo]

Hope it goes well JamesW

[JamesW]

Thanks Claireflo x

[Ellie]

JamesW Given that you're having a RIG procedure, chances are you'll have a balloon retained tube which means, in time, you can swap the long tube for a dinky little button. xx

[JamesW]

JamesW Given that you're having a RIG procedure, chances are you'll have a balloon retained tube which means, in time, you can swap the long tube for a dinky little button. xx

That will match my other bits perfectly 👍🤣🤣🤣

[MMG]

Dean had a two night stay at Stoke. The night before the op and the night of the op.

The procedure itself took 7 minutes. He had no problems with the surgery and no infections. But they did clip it very tight.

I was shown how to care for it during his stay in hospital as Dean had no use of his hands, and a nurse from the feed company Nutricia came out to the house a few days after discharge to check up on it and showed me the twist and turn. There is a 24 hour helpline which I never had to use.

I was a little squeamish at the beginning but it was fine.

The tube was much higher up than I thought it would be, a good 3-4 inches above his naval.

We initially only used it for his medication until he needed it for feeds. The overnight food pump became a bit of a lullaby.

He could still drink coffee (thickened) even though he had food via the PEG.

[Jane]

I had a PEG fitted last week. I went into hospital on Monday, had the procedure on Tuesday and came home on Thursday, after having a training session, with my husband, on how to care for the PEG and set up the pump feeding system. As my swallowing has deteriorated in recent months and I was living off mainly scrambled eggs and yoghurt, having the PEG fitted has been a relief and I have put on a couple of pounds already! There are some downsides of course, the main one being that I am on a 15 hour overnight regime, but I am hoping to reduce that to 12 hours within the next week or so. I haven't yet tried having the feed "on the go" while out of the house, but am sure it will be possible, with careful planning. So for me the PEG has been a positive thing, as I was not enjoying meals at all. As I can still swallow some food, I can eat small amounts normally, as and when I feel like it, knowing that there is no longer any pressure to eat if I don't want to.

[Ken]

My wife has declined a peg and the 12-18 hours of daily ventilation that her consultant recommended. Her logic is that although this would extend her life by 9 months or so, the disease still progresses. She would therefore be likely to become locked in. This is most definitely not what she wants.

These are tough decisions and there are no good answers. You just have to evaluate what is important to yourself and your family and choose your path through MND. Its beyond tough but I fully appreciate the bravery of her decision and support her.