PEG and sleep comfort

[Gilamon]

Hi
I wonder if you can help. My husband has semantic dementia and a working diagnosis of ALS. He is really struggling with swallowing and has agreed that a PEG would help. We had an assessment a couple of weeks ago.
We've just been advised that he could have a PEG fitted on Friday pm. Apparently he'd have it fitted and be home by the early evening. Knowing that there is no community support over the weekend and that it sounds like any advice or training I'd receive would be rushed, I have refused this time slot. He's having an MRI on Monday and he'll be overwhelmed with both procedures so close together. I'm just hoping that I haven't delayed the PEG fitting hugely.
I've explained to him the above and he is pleased with my reasoning. However it's become very real for him and he has raised a concern regarding his sleep. He currently sleeps on his side. I'd be grateful if any PEG users could let me know if their PEG affects sleep or causes irritation? Is there anything anyone can suggest to aid a more comfortable sleep if necessary?

[Ellie]

I think you did the right thing in not taking the Friday afternoon slot for Dave’s PEG procedure, as you say, you’ll probably be rushed out the door with only a leaflet.

Gill, he will be sore for about 2 weeks, with the first few days being the worst - the abdominal muscle has been cut through, after all - but most people do OK on paracetamol and/or ibuprofen. It’s best to take painkillers for non-stop relief for the first few days so he won’t be tempted to tense his tummy muscles, causing more pain. If Dave isn’t comfortable taking tablets on a regular basis, maybe his GP can give you a script for slow release painkillers which you can be all set beforehand.

The feeding tube itself can be fairly long, at around 30cm. It can be taped to the tummy, loosely so as not to pull at the site, tucked up into the clothes or there are pouches you can buy but they are tied around the body (which might annoy him) If you think he might pull the tube, now or in the future, or if Dave doesn’t like the look of the long tube, once the stoma tract is healed (2-ish months) he could get a little low-profile button. It is another hospital visit, but it may be worth the short-term upset?

Sleeping: once the initial pain goes, he shouldn’t be aware of the tube which, if he’s worried about lying on it, can be taped up as above. The tube site is left of centre of the belly so if Dave sleeps on his left side, that may be more of a reason to make sure the tube is tucked out of the way. Honestly, I am blissfully unaware that I've anything going from my skin into my stomach - it's like if you have your ears pierced you're unaware of earrings - but he will be aware of the site as it heals.

Any other questions either of you may have, feel free to ask - somebody here will likely have an answer!

Love Ellie.

[Gilamon]

Thanks so much Ellie. It's so good to have a realistic idea of what to expect. Thanks for the suggestion about painkillers too.
Yes at the time I was concerned that I shouldn't have delayed but I'm happier now. Thank you xx

[Ellie]

No harm to ring the hospital and make sure he's not bottom of the list for his PEG.

[miranda]

As ever, Ellie has provided a comprehensive response. I can only add that I too am unaware of the tube whilst asleep, even though I usually turn from one side to the other at least once a night.

[Gilamon]

Thank you both for your reassurance. Great idea Ellie - I'll check with the hospital.
Thank you for all your help xx

[matthew55]

I really should buy a lottery ticket. Last night was night 5 post op and the first night that I had no feelings whatsoever when I turned in bed. I have had no painkillers the entire time and I have had no pain. btw I have a PEG fitted.x

[Gilamon]

Thanks Matthew. That's great news and very reassuring. I hope Dave has a pain free experience too xx

[fortuna]

I am waiting to have the peg fitted. And have heard horror stories of not being able to cope with using it. Carers who are not trained to deal with the peg. Also I have Rheumatoid Arthritis and my hands don't have much strength. So I may well need help. As a diabetic type one for 40 years. I wonder how giving my self insulin will be.
I have no idea what a peg looks like and became very confused reading about there being a very long tube. Maybe I have this wrong? I thought there would be a cap on the end of it. Think I need some advice, pleas?

[matthew55]

It's a simple procedure and easy to maintain. Yes it has a cap and the tube is not too long. You can be hooked up to a pump which means wearing a backpack or use a syringe like I do at the moment. Anyone who has a horror story will no doubt not had one fitted. Anything else please just ask. Stay Strong Matthew x

[Ellie]

Oh Jill, sorry you've read such horror stories - honestly, they are the ones which grab the headlines and not the boring, run of the mill stories of nothing to report, all going smoothly!!

Here's a good website to learn the ins and outs about feeding tubes: https://mytube.mymnd.org.uk/

And you can ask us anything too.

Love Ellie.