PEG nutrition

[DPcarer]

Hi everyone,

First time poster. I care for a friend with MND and he's had a PEG for 6 months. I know everyone will be different, but it would be really interesting to see how much people are taking through the PEG in a day. Now that it's much warmer, we will need to increase his water intake but are worried about the amount of liquids in total - perhaps the benefits will outweigh the negatives.

A normal day constitutes 1 litre of water and 1.2 litres of Ensure. Nil by mouth. (He was prescribed one bottle of ProCal per day too, but that was making him feel a little sick so we've cut that out).

For digestion reasons we were experimenting with increased water intake (about 1.8 litres) a couple of weeks after the PEG operation. But the dietitian warned us that because of the purely liquid diet, the kidneys would be working a lot, so too much liquid wouldn't be good. So we went back down to her recommended litre of water.

If you don't mind sharing, how does that compare with the rest of you? Thanks

[denise]

Hi dpcarer

my husband has 2 x 2 cal fibre. He should have another 1/2 sachet but he can still eat. Also has porridge, toast, tea, coffee and pizza or bacon sandwich by mouth if he fancies. Oh and a glass of wine.

I hope that helps.
Denise xx

[matthew55]

I try and have 1ltr feed plus a couple of bottles of complete meals with coffee and flush with double bubble water (120 mils) with every med during the hot weather. I also have a litre of water handy that I can put onto my pump. My weight is dropping and I look like an Ethiopian on a bad day! But I still have my health! Happy Days.😁x

[Nettie]

I have 3 x 2 cal & 1 x1.5 cal a day plenty of water and very little by mouth and I’m piling weight on 🤦🏼♀️

[DPcarer]

Thanks, it sounds like you're all still able to eat which is great. My friend's weight had dropped a lot until his PEG op, but since then we got it back up to a good weight. It's now staying the same which is good. The problem is he feels quite full if he takes too much liquid at once so we're trying to sneak in a few extra syringes of water in between feeds throughout the day to trick the body! To clarify he's on 6 bottles of Ensure TwoCal per day via the PEG - 2400kC

[denise]

My husband feels full. Sometimes he looks like he's had too much. It also seemed to bring about night time problems with incontinence. He is 70 so age probably doesn't help. He's also got some high calorie mousse but he hasn't got an appetite for them. They are very tempting 😉

2400 calories seems standard.

[Ellie]

A warm welcome to the forum DPcarer

I take either 500ml or 1000ml of liquid feed plus 1800ml-2200ml minimum of water through my feeding tube daily - this was my Dietitian's recommendation. Similar to calorie intake, recommended fluid intake is based on one's weight - I am 53kg.

If I feel thirsty, as I often do in summer, I'll have more water. Kidney function has never been an issue - checked in my annual blood tests - and, to my non-medical self, capping total fluid intake for a grown man seems on the low side, particularly in warm weather, *but* I'm not disputing your friend's Dietitian's advice, he might be very light.

I guess be on the lookout for him being thirsty, a drop in how often he goes to the loo, darker urine colour, increase in thickness of saliva and phlegm etc., as signs of dehydration.

Love Ellie.