Peg

[Andrew]

I was put on a puréed food diet 3 weeks ago due to swallowing deterioration. I couldn’t get away with the puréed food and opted for PEG. The PEG was fitted last Monday at RVI Newcastle.Procedure went well and I was home Thursday night. Now taking all medicines and liquids and feeds through PEG. Such a relief to not struggle over every mouthful waiting for the next choking fit. Starting to feel much better than I was a week or so ago.

[denise]

Hi Andrew well done you for having it done. It must be such a relief.
Love and hugs
Denise xxx

[Arcadian]

Thanks for sharing a positive and reassuring experience of this

[Ellie]

Andrew Great to hear that 👍👍

Isn't it wonderful not to have to worry about nutrition, fluids and taking meds anymore xx

[Arcadian]

Andrew Great to hear that 👍👍

Isn't it wonderful not to have to worry about nutrition, fluids and taking meds anymore xx

The sensual, social aspects of eating and pre-existing medical intestinal problems (Crohn's and hiatus hernia) are still a psychological issue regarding my own look-ahead - but this OP positivity gives some reassurance (together with reading Dr Scott Morgan's elective procedures).

[Ellie]

The sensual, social aspects of eating [....] are still a psychological issue regarding my own look-ahead

Absolutely Dan, there's no escaping those factors but once eating, drinking and taking basic painkillers orally became difficult or impossible for me, the weighting I attributed to the social aspect of eating with my very young children changed, and I placed an emphasis on moving my 'mouth' to under my T-shirt in order to stay healthy for as long as possible.

But, just because I chose to get a feeding tube, doesn't mean that you or anyone else should get one. xx

[Claireflo]

That's great to hear the PEG is working well and you're starting to feel better. A big relief to be getting the nutrients without the fear of choking.

[Hope]

It is good to hear that the PEG is working well.

I am really struggling with the idea of having a PEG. I can still eat without choking or coughing but have to eat very finely chopped food.

[WheelsOfSteel]

But, just because I chose to get a feeding tube, doesn't mean that you or anyone else should get one. xx

I reckon I went a bit too early with mine
My breathing is affected, and a while ago I had really bad morning struggling for breath. My swallowing assessment showed that I can still eat normally, but I am aware that swallowing takes a bit of care and effort.
My medical people suggested that PEG may be "worth getting done", and despite the lovely Ellie sounding a note of caution I agreed.
I got PEG'ed 3 weeks ago and in the meantime I have learned how to manage my breathing and choose which foods are easier to swallow (chicken curry - Yay!).
I now have a tube that I have to manage with the usual cleaning and flushing regime, but which is otherwise not being used.
I got ahead of the game, but maybe a bit TOO far ahead.
You have choices folks!

[Hope]

WheelsOfSteel I have never had a swallow assessment, not sure if I should have by now? As for chicken curry, yes I can still eat that too! x

[WheelsOfSteel]

Hiya Hope The swallowing assessment was "interesting".
It was set up by my Speech and Language people. It was meant to be done in hospital, but they changed it to a video call from home.
I had to assemble a menu of drinks, yoghurt, bread, a banana and a chocolate chip cookie
I then had to sit in front of my laptop eating this as a sort of "virtual picnic" while 2 ladies watched me and asked questions.
It was like a surreal socially-distanced dinner date...

[Zante]

Andrew also same from me am really glad to read that it went well and you are managing well with the Peg and feeling better for it and decent nutritional intake.
I also am trying to balance the timing of the procedure. I don't like the thought of a hole in belly! And am feeling squeamish about the whole thing. Respiratory assessment showed vital capacity is 72% and told me that my Respiratory muscles are affected but am not at point I need NIV. And am not in a hurry for peg as there are only a handful of foods I can't swallow and so avoid them. I know its a personal choice and I wondered do majority of mnd patients go ahead with it? Also haven't had the SLT appointment yet and don't feel need to yet. Its a lot to consider isn't it. Sorry just wanted to add to post. Did everyone feel it was the right thing to do having the peg early? Xx

[denise]

Stephen had the peg done 2 years ago. I thought best while still strong enough to deal with the operation but I don't think its that invasive. He wasn't keen but we went ahead with it. He had a very quick recovery, no pain killers and no problems. My idea was that with covid about there would still be the opportunity to feed him and give him meds if he had breathing problems or felt ill. Then of course it was removed in December 2021 for a UK compatible peg. Again a quick operation and home same day. I'm glad we had it done even though he hasn't used it for quite a while but handy to know it's there if required.
🙂

[shelly21]

Great hearing how well its gone. I had mine early. In fact 12 months ago. I can still eat but my jaw is failing and the energy needed to chew really tires me out. So I find comfort in that its ready for when needed.

I love my peg for my fluid intake. Plain water that is easy and fast.

[Zante]

Hope do you see a slt professional? I dont know if they are always involved right from the beginning or not? I had that referral done beginning of July but havent heard yet but have no clue as to how long these things take. x