Peg feed advice please

[slp]

Hello lovely people

I have been using my peg almost entirely for 5 months having daytime syringe feeds but I am losing weight still so I am thinking about trying overnight feeding to get more calories in,I really need to put some weight on I am so bony

I know that some of you use them so I would like to ask for advice,how does it work? do you still sleep well? how does it affect your day?

thanks in advance

Sarah x

[Kayleigh]

Hello Sarah

I am sorry to hear that you are losing weight. Boney legs and arms etc can make sitting and lying down particularly uncomfortable, and so I hope your OT is providing you with any extra cushions etc you might need to make you more comfortable.

I would have thought that your nurse and/or dietitian should be pro-actively monitoring your weight and doing what they can about your feeds etc to ensure that you don't lose weight - but it's good that you are being so pro-active by asking for advice. I don't have a PEG, but hopefully others on the forum will be able to advise you.

Take care.
Love Kayleigh x

[Ellie]

Hi Sarah,

Sorry to hear you're losing weight, that's not what we want really! Any bit of padding on our bony bits is welcome.

Can I ask if your calorie intake requirements were assessed and set by a Dietitian? You ought to be reassessed, or assessed, to stop the weight loss.

The pump feed works well overnight - it's programmed to take 8-10hrs (or however long you want it to take) so you are fed whilst sleeping. It's just a case of an easy set up of the feed and pump and let it do its thing.

A few things to note:
The pump is very quiet, or at least the one I use is (Nutricia Flocare Infinity)

The feed goes in slowly, so you won't feel full as after a meal, but you won't feel hungry either.

You cannot lay flat whilst being fed because of a risk of aspiration, your head needs to be raised a bit.

You may need supplementary calories during the day, e.g. Fortisips or Ensures or a shortish pump feed.

You maybe can continue with your daily feeds and get supplementary calories for 3-4hrs by pump during the day/evening if you normally sit and relax - though my pump is small and portable.

If you start pump feeding, it is best to start low and slow and let your system get used to it.

The Dietitian will prescribe a feed best suited to your needs and the feed, pump, giving sets etc will be provided and you and your family/carers will be shown how to use them.

Love Ellie.

[Terry]

Hi Sarah;

I've know of many people that have a pump feed during the day. I don't know how you keep up with enough food using a syringe, it's quite labour intensive if you don't eat and drink as well.

As Ellie says. start off with a very low amount per hour and build it up gradually. Some pumps can run off of a built in battery so you can use them when out and about.

What and how much do you eat, drink and put through your feeding tube per day, roughly?

Love Terry

[Guest]

Hi Sarah, my husband Richard is about to start over night feeds too. He was diagnosed last March and over the last year steadily things have got worse. He has problems swallowing but still eats orally at the moment soft foods,but like you he has lost a lot of weight over the last month. The dietician came yesterday and a feeding system is being delivered tomorrow. We had been using supplements in the form of a shake which I put through his peg but that hasn't stopped the weight loss. Only this last week, he has not wanted to eat very much not feeling hungry or maybe its through fatigue. So it has been agreed that this is the next thing to do to try stop the weight loss, like you I have no idea how this will work but have been told someone will come to show us what to do.
I hope you get on well with the overnight feeds and it has the desired effect. I`m sorry you find yourself in this position,
love Amanda

[Ellie]

Hi Amanda,

I don't mean to sound glib but honestly, but it's easy to get into the swing of using the pump for feeding.

It really is far better to start with small amounts of feed, maybe 100-1500mls, and at a rate of 25-50mls per hour on Day 1. It can be gradually increased in volume and rate over a week - the normal rate is 125mls per hour, so 1000mls takes 8hrs or a typical overnight.

Some Dietitians go right to the full volume and rate of delivery, but this can cause problems in the tummy.

I'd also suggest Richard try it first during the day.

I hope it works well for you both and his weight stabilises.

Love Ellie.

[Guest]

Thanks Ellie, I`m sure once we get into the swing of things it will be as you say x

The dietician thought overnight might be better so that Richard could still eat food orally during the day as he fancied. We questioned that if it was done during the day he might not want any food orally as wouldn't feel hungry. I guess its all a bit trial and error to start with.
We will see how things go, just as long a he maintains his weight, preferably putting some on, but I know this is hard to do once the weight is lost,
Thanks Ellie for the advice I will check that their suggested way is the best option for him

Love Amanda

[Ellie]

Amanda, I still eat orally (slowly!!) and eat lunch @12.30-1pm and have my 500mls pump feed from 5.30-9.30pm most days.

Because the feed goes in @125mls per hour - that's only 8 tbsps per hour - I don't feel full, yet I get all my calories. The digestion process nearly keeps pace with the delivery of the feed, so again, I don't really feel "full" and can eat orally even during feeding!

Some days I take 1000mls overnight and just have a snack or two during the day. It's not an either/or regime, whatever Richard prefers he should do. He can choose to get the bulk of his calories the easy way (pump) and eat orally as he wants to.

Good luck tomorrow!

Love Ellie.

[slp]

Thanks everyone

Terry at the moment I have 3 bottles of Fresubin 200ml 400calories daily although my dietitian would like me to have 4 but anymore leaves me feeling very sick on top of meds
I do still drink and eat to have a taste but not enough to add worthwhile calories
The dietitian will be out on Monday and go through all the options and I am sure that it is the way forward

Ellie thanks for all your advice ,I am happy to try whatever works I am not afraid of change and have a great team around me ,I am very fortunate

love Sarah x

[Kayleigh]

Hi Sarah,

Just a thought (but your dietitian will probably have some better suggestions), as you are able to eat a little, have you tried high calorie individual pot desserts, such as chocolate mousse or custard?

Also, I find that Complan with whole milk is quite tasty (but it could be that Complan is too similar to your current nutrition drinks).

I expect your dietitian will have some great advice - it's good to hear that she will be seeing you on next week.

Love,
Kayleigh x

[Guest]

Ive been on overnight feeds since end of October. I loat a lot of weight previously to this. I do eat theought the day to compliment this but i cant seem to put any weight on either. Im going ring the nutricia dietician and have a chat.

[slp]

hi Pink

how much do you have over 24hrs? and what do you have? it is not fun being so skinny!
best wishes

Sarah x

[Kayleigh]

I enjoy getting extra calories by eating lots of Ben & Jerry's ice cream!
Kayleigh x

[Ellie]

Hi Kayleigh,

Remember that some people on the Forum are nil-by-mouth because they can no longer swallow safely

Yes, even ice cream - although I can still swallow some foodstuff, I can't manage ice cream or similar consistencies as they are too runny, strange though it sounds. Though that doesn't stop the family eating bowls of it in front of me!!!

Love Ellie.

[slp]

Hi

Icecream is a funny one isn't it because some bits can melt and cause coughing and I have to hold it in my mouth for a while and then swallow , I find custard and yogurt easier

It's strange the things you can and can't eat isn't it? I can eat chicken and duck and fish in small amounts but not potato or fruit x