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FlyingSoupDragon
26th August 2015, 16:04
Here is a post from a blog I found interesting and thought provoking.

In Liquid Hope (http://www.ericvalor.org/liquid-hope/) Eric discusses something that strikes at the heart of life, nutrition. He had problems with the liquids being trickled down his PEG. Plenty of food for though, particularly if your lunch comes down a tube.

I'd be really interested in your thoughts guys... I'm awaiting a date with the endoscope operative.


408

Terry
26th August 2015, 17:23
Hi Norman;

I have never studied the ingredients and have never taken them.

I would recommend that you have a PEG operation rather than a RIG.

Love Terry

Ellie
26th August 2015, 17:26
Just to put things in perspective, HFCS High Fructose Corn Syrup, is NOT used in feeds this side of the Atlantic.
Ignore Eric’s scaremongering about HFCS, whatever about his “Liquid Hope” that he is flogging.

Terry
26th August 2015, 17:34
Hi Norman;

I don't think your picture is correct and it is labeled wrong. I'm no expert but I believe it shows the RIG procedure.

I think that there is a soft plastic disc on the inside and not any balloon. The balloon systems last about four months before needing replacing where the discs last for three years or more. Balloons require small maintenance every week as well.

I have been told by my specialist that there are slightly more problems after the RIG procedure than a PEG one.

Hospitals won't do a RIG if your breathing is poor and they will opt for a RIG or maybe PIG as they can resuscitate you easier and don't have to lay you flat.

Love Terry

Steve have amended this post to explain my views.

Steve
26th August 2015, 17:34
Hi Norman;

I have never studied the ingredients and have never taken them.

I would recommend that you have a PEG operation rather than a RIG.

Love Terry

can i ask why terry?

Terry
26th August 2015, 17:46
Hi Steve;

I was amending my post so have included your answer into that.

Just ask if you would like more info.

Love Terry

Steve
26th August 2015, 17:52
aah, well i had a rig and the disc.

i was told before my procedure that there are two systems, the balloon and the disc but they were not linked to the type of procedure. ie. you could have a peg with a balloon or a rig with a disc or vice versa.

Terry
26th August 2015, 18:22
Hi Steve;

I was pushed into a RIG as well by local hospital even though my breathing was Ok. Should have had it done at Addenbrooks as they were more than happy to do a PEG. Still we all make mistakes or perhaps don't push hard enough.

I think you're wrong or we have a misunderstanding about Balloons and discs. I am talking about what's inside your stomach.

I think that the PEG tube is fitted from the inside so can have a disc to seal and retain the tube inside the stomach and on the outside skin. Where as in a RIG procedure the tube is inserted from the outside inwards, making it not possible to have a disc on the inside so that is why they use a balloon to seal and retain the tube inside and a disc on the outside of the skin.

Not sure but a PIG might use a balloon on the inside???

Love Terry

Steve
26th August 2015, 18:35
during my rig procudure the whole tube went through my mouth so inside to out. they slipped my bipap mask to the side for a split second to feed it down.

trust me, disc inside and rig procedure. no balloons here.

maybe it varies place to place, i might be lucky.

Terry
26th August 2015, 18:46
I think your experts have named it wrongly. Looking at the info on the net, a Rig is inserted through the skin into the stomach.

To me it sounds like you have a PEG or maybe a PIG.

I'm no expert but would put money on it.

Anyway, I think you have a better method than me.

Love Terry

PS:- Where did you get that image from Norman?

Steve
26th August 2015, 18:58
it may have been a pig, although i'm not sure what the difference is between a pig or a rig. i know i wasn't fit enough for a peg.

there's a hole in the literature that i believe is being closed.

sorry about your tube!

Billie
26th August 2015, 19:02
Hi
My Mum had a RIG and it's definitely got a balloon. The district nurse comes weekly to maintain it which involves inflating it with water.
She was told a RIG would be better as she had breathing problems
It was done a year or so ago
Sarah

Terry
26th August 2015, 21:13
Hi Steve;

It appears that both PEG and a PIG are done by putting tubes in from the inside and going out and a RIG goes from the outside in. Both PIG and PEG use a plastic disc on the inside and are both long term tubes where a RIG uses a balloon inflated with normally 5ml of water and last about 3/4 months before being replaced at home.

The main difference between PEG and a PIG is the method they use to find the site hole.

Love Terry

Steve
26th August 2015, 21:29
i wonder how they decide between pig and rig then.

Terry
26th August 2015, 21:35
I think that they do a RIG when the breathing is okish and a PIG or a RIG when there is a concern. I don't think that all hospitals offer or do PIG's and my hospital only done RIG's for people with Mnd, at least that is what she said to me.

willsandco
26th August 2015, 21:49
I had a rig In sheffield in January. I would imagine that you had the same, Steve. I have no balloon, no nurse involvement, just a feeding tube that has to be rotated every week. Joycie. X

Steve
26th August 2015, 21:51
yeah thats the one.

Night walker
26th August 2015, 21:51
Hi

My hubby has refused to have one. Has anyone else decided not to have a PEG/RIG? Has anyone changed their mind and what made you change your mind to have one?
Thanks
Sylv

Nettie B
26th August 2015, 21:54
My Trevor had a PEG. The food was produced by Fresubin. It was delivered to the door every four weeks following a phone call weeks previously to make sure the date was convenient. It was an excellent service. There was a helpline to phone if any problems with the PEG arose during times when his dietician was not available (say out of hours).
Trevor did get constipation issues a couple of weeks before he died despite his particular food being the "energy fibre" option. He was very well hydrated too. I am pretty sure that the constipation was not so much a result of the food but of the fact that he was less able to evacuate normally simply due to be exhaustion and the MND itself.
Don't fear the PEG or food in this country folks.
X Nettie.

willsandco
26th August 2015, 22:06
Sylvia, I debated long and hard but it was the common sense approach that swung it. I felt it was better being done sooner rather than later, while I was fit. Now I know that, if I need to in the future, I can get sustenance through it, can take any medication through it. I only use it to flush it out with water at the moment. I am pleased I had it. It is something of an insurance policy. But I know some people never have one. It is your own personal decision. Much love. Joycie x

FlyingSoupDragon
26th August 2015, 23:15
Approaching the time when a PEG gets fitted makes you curious doesn't it? I haven't done any detailed research but broadly understand the process and some of the issues. Reading Eric Valor's post (http://www.ericvalor.org/liquid-hope/) brought forward questions we must all have - what exactly is it that dribbles down that tube? How effectively does it nourish, sustain and dare I say it, satisfy?

It doesn't necessarily follow that what is given to the US goose is fed to the British gander, but can the concoctions be that different given the job they do - keep us alive and in trim to fight on.

My wife is very focussed around the nutrition issue, she lovingly builds my fortifying soups from a huge array of veggies. The idea that these, or something like them, might make it down a PEG tube is intriguing and a great topic for conversation with others, some of whom (here) have skin in the PEG game.

After all, it's been said many times that we are what we eat.

Thanks for the responses folks.

PS: The I pulled the graphic from the web. (http://www.oralcancerfoundation.org/nutrition/tube-feeding.php)

Ellie
27th August 2015, 14:45
Hiya Norman,

If you’re thinking of putting home-blended food through a feeding tube, make sure the Gatroenterologist knows this beforehand, so you get the correct diameter tube to handle the consistency without clogging tube. (narrow FR sizes aren’t suitable)
Don’t expect to be able to handle large volumes of food from the start, you’ll need to build up tolerance gradually.
Dietitian can assess, advise and help.

Ellie.

Steve
27th August 2015, 14:49
+1. i was advised not to put food down, even blended, just too dense.

Terry
27th August 2015, 15:00
I am not sure but I think people have done that before. Would not know how to search it.

I have a size 14 tube which i think is the largest of the two standard ones.

I got this blocked by putting a watered down liquid antibiotic down it as it was one of those things, like custard powder, when it is first mixed with a little cold water goes nearly solid when it is under pressure.

It's a real bugXXX when they get blocked so make sure that any liquid medicine or other stuff is suitable before hand and use plenty of water.

Love Terry

Terry
27th August 2015, 15:12
THis information sheet does have more info and says:-

"No other fluids, including liquidised food or yoghurt, should be passed through the tube as they may damage or block it. This can lead to the tube needing to be replaced sooner."

http://www.mndassociation.org/wp-content/uploads/2015/07/7B-Tube-feeding.pdf

Love Terry

Ellie
27th August 2015, 15:50
Hiya Terry,

I always use fairly warm water with crushed meds or flushes. Meds seem to dissolve easier.

Are you still thinking of getting a button?

Love Ellie.

Terry
27th August 2015, 16:12
It should be here, but I can wait a while as my site is still leaking stomach contents a little.

I am still OK drinking and eating, it was just that that medication tasted so bad and it used to stay with me all night. It would have been OK if we used more water, and warm water is nicer and better.

Do you use liquid Riluzole, if not what brand do you use Ellie.

Love Terry

Ellie
27th August 2015, 16:28
No I crush my Rilutek Riluzole in 50mls of warm water and flush with 250mls warm water. I have been doing this for 7+ years without issue.

Is your tube ill-fitting causing leakages?

xx

Terry
27th August 2015, 16:46
I guess so but it is the largest one. I had a lot of infection earlier and every time it is changed it bleeds a very small amount.

With a PEG or PIG it has a lot of time to repair and get better but with a RIG it is in and out every 3 months. They say my site looks good???

I swallow Rilutek riluzole, it has a better, longer lasting coating than Teva and the original Riluzole. I think people have had trouble with the coating when crushing but warm water might help a lot.

Love Terry

FlyingSoupDragon
27th August 2015, 18:15
Learning all the time here. Given the chance I'd squeeze a lamb chop down the thing but I guess that was never on the cards (not sarcasm). I was half hoping that well zipped up juices could do it, but given the narrow gauges and possible complications... For the moment soups and smoothies are working their way south down the throat ok.

On another note the OT ladies came up trumps, my electric stand aid arrived today. The transfer from chair, via walker to the loo reached my physical strength and control limit making the operation hazardous. With this stand aid and a commode I achieved another life first, my missus wiped my bum and sorted me out. Funny isn't it how we mentally change gear, a year ago I'd have been mortified and so would she. As it was we just laughed and got on with it - what a trooper she is.

Steve
27th August 2015, 18:18
norm, consider a bio bidet, they are brill.

my chair goes over the top.

FlyingSoupDragon
27th August 2015, 18:22
That sounds like a plan Steve, thanks, I will look in to it. :)

Something like this? (http://www.amazon.co.uk/Luxury-Bidet-Auto-Electronic-Toilet/dp/B00H1URCJ4/ref=sr_1_1?s=kitchen&ie=UTF8&qid=1440696244&sr=1-1&keywords=bio+bidet)

Steve
27th August 2015, 18:32
yes, exactly.

FlyingSoupDragon
29th August 2015, 19:06
Thanks Steve. I'm using a Stand Aid to get me clear of the bed then put me onto a commode (lovely word: commode>commodium> Imodium>Komodo Dragon> Soup Dragon). It would be a Rolls-Royce device with a Bio-Bidet. 'Amazing the direction the mind wanders when sat on the commode. LOL

Sorry, I'll get my coat... It wouldn't do to sit on this chap!

http://www.remotelands.com/blog/wp-content/uploads/2012/12/Walking-with-Dragons_main.jpg

Terry
29th August 2015, 19:53
I have had that idea as well Norman;

No not the dragon but a portable loo with a Bio Bidet on it. It would need a water supply and plugged into the electric but it would be possible with a lot of work. Not sure what sort of water pressure is required but a bit more than a level tank.

Love Terry

FlyingSoupDragon
29th August 2015, 23:02
I agree, it would be something but a bit of a faff to set up. I think I'll continue doing what the Romans did for the time being though the minute a proper loo comes back on the horizon I'll be on to Amazon.

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