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slp
28th February 2019, 16:15
:o
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
28th February 2019, 17:00
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
28th February 2019, 17:08
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
28th February 2019, 17:51
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

missmandikat
28th February 2019, 19:58
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
28th February 2019, 20:20
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.

missmandikat
28th February 2019, 20:43
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
28th February 2019, 21:12
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
28th February 2019, 21:56
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
28th February 2019, 22:25
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

Pinkelle
1st March 2019, 08:36
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
1st March 2019, 13:30
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
1st March 2019, 14:09
I enjoy getting extra calories by eating lots of Ben & Jerry's ice cream!
Kayleigh x

Ellie
1st March 2019, 14:21
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
1st March 2019, 17:15
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

slp
1st March 2019, 17:25
Maybe we can share some ideas? I like salmon with mayo and spring onions chopped up small , I crave a bit of flavour ,chicken sliced never cubed , mixed with mayo and pesto, I only eat a little bit but it satisfies my tastebuds!

Sarah x

Pinkelle
1st March 2019, 18:12
Sarah my feed is 750 calories overnight. I try to eat through the day even though I don't have an appetite. I reckon somewhere in the region of 800 calories.

Sheila
1st March 2019, 19:53
I have lost weight since I was diagnosed in January. Anxiety and stress about it all I think. Dietician is coming out on Monday. So I expect I will get lots of advice. I weigh 7 stone.

Take care all
Sheila

Streetwise
1st March 2019, 19:55
try adding extra virgin olive oil and sunflower oil to savoury things and coconut oil to sweet things they are both high in fat also appear to be very good for the skin

Ellie
1st March 2019, 20:48
Sarah, I know exactly what you mean about wanting tasty meals!

Because I only eat lunch - and I know I am lucky to be able to - it has to be nice! Everything has to be chopped up small and I can't manage dry food. My tongue doesn't work so I can't move food around my mouth, but my swallow is pretty good (relatively speaking)

Some of my usuals are: tuna mixed with mayo, olives, peppers, tomatoes (or whatever is in the fridge)

Hard boiled eggs mixed with mayo, grated cheese, spring onion, tomatoes, crumbled Carr's crispbreads (they are soft and not crumby)

Stir fry veg with noodles and packet sauce.

Omelettes or fritatas packed with anything and everything.

Halloumi in semolina, griddled, with salad, red onion, olives, coleslaw.

Pasta (I break up spaghetti before it's cooked) with mushrooms, tomatoes/peppers, broccoli in creme fraiche.

And garlic in whatever I can.

I don't eat meat and only recently started eating tuna.

My carers cook for me. My target intake is 1800 cals per day.

Love Ellie.

Pinkelle
2nd March 2019, 08:45
Ellie your 1800calories, does that include your feed? X

Ellie
2nd March 2019, 12:26
Yes, 1800 cals is my total for each day.

I am 51kg now, so if you're lighter or heavier, your calorie requirement will be different. The Dietitian set that figure and also said I should have 1800mls of fluids per day.

I either get 765 or 1530 cals from my feed, depending on whether I take 500 or 1000 mls.

Love Ellie.

Pinkelle
2nd March 2019, 12:35
Im 43kg. So i will be different. Ive never been told how much i should have. Im going to contact the nutricia dietician next week.

Ellie
2nd March 2019, 13:35
You are underweight Pink, so you will may have a higher target initially until you gain weight.

It's awful to hear you were never given advice on how many calories you should have daily :mad: hopefully the Nutricia Dietitian will give you an appropriate diet plan.

Nutricia do a high fat drink called Calogen which can go through the feeding tube in addition to the Nutrison pump feed. I had it for a while at the start as I was deemed to be light at diagnosis - I was 47kg, which was my normal weight for years - and the Dietitan wanted to fatten me up like a Christmas turkey, as low weight is not ideal in MND. It's a hungry disease!

If you are able, please be firm with the Dietitian if you feel like you're not being taken seriously. The good thing is that it's a Nutricia Dietitian, so it's in their interest to recommend extra feeds!

Love Ellie.

Jaxx
3rd March 2019, 00:18
My daughter just had peg fitted, going to have feed overnight then try to eat what she can through the day, we are all a bit nervous about it they are coming out to instruct us on the pump on Monday, do people find it easy to deal with re showering and lifting etc?

Ellie
3rd March 2019, 13:09
Hi Jaxx,

I don't know if you mean showering & lifting with a feeding tube in general or when pump feeding, so I'll answer both.

Your daughter should have been given instructions on immediate aftercare of the feeding tube and the PEG site re cleaning and turning the tube day 2-14 post procedure (at least I hope she was!!!)

Once the initial healing period regime is over, i.e. from day 14, it's back to normal really with showering and lifting. (It's important to dry the site well)

The tube is tucked up into her T-shirt, but some people tape it to their tummy to lessen the chance of the tube being pulled by mistake.

When the pump is attached, it's best to stop the pump and detach the giving set from the tube for a few mins for lifting, then reattach giving set and restart pump - this is quick and very straightforward.

The pump wouldn't be brought into the shower, feeding would have to be stopped for showering.

Jaxx, her eldest girl might like to be part of setting up the pump feed, my kids did and it demystified the enteral feeding for them as well as them "helping mummy".

Initially just a small amount of feed will be given and that should be during the day.

Best wishes to you all.

Love Ellie.

Pinkelle
17th March 2019, 09:19
Had the dietician round. Weight dropped to 40 kilos now !! Have a new plan. Increasing my night feed from 750 calories to 1000 calories. Plus adding 300 calories by having a nutricia drink via rig. Hopefully that will put some weight on and get a bit more energy!!

Ellie
17th March 2019, 11:42
Hi Pink,

I'm sorry your weight loss is continuing unabated :(

TBH, I think you need more than an extra 550 calories per day to start regaining weight at a sustainable level.

How many calories will you get daily now? I'd have thought you would also have been prescribed 3 x 30mls of Calogen daily - it's high fat, mostly good fats, and it great for boosting energy and weight.

Did the Dietitian estimate how long it'd take to get you up to a desired weight?

I hope you start putting on vital weight very quickly.

Big hug.

Love Ellie.

Lynne K
17th March 2019, 14:56
Good luck managing your weight Pink.' I'm watching this discussion for the future. I'm not in that situation yet. My weight has gone up since diagnosis from my preferred 64kg to 78kg. I don't like this extra weight. 67/68kg would be ok. Take care Pink,' love Lynne x

Jaxx
17th March 2019, 19:04
Thank you Ellie, she has an overnight feed of around 750 mls building it up eventually to 1300mls and anything she manages to eat during the day is a bonus, I’m glad we can put water via the tube as I was so worried because she was drinking next to nothing, we have stopped lifting her now and are using the hoist as it causes too much pain in her shoulders, downstairs wetroom almost complete so no more lifting on and off stairlift.

Pinkelle
17th March 2019, 19:38
Ellie she never mentioned calogen. I doubt she will as she works for nutricia. Im seeing my mnd nurse tomorrow I'll chat to her x

Ellie
18th March 2019, 11:21
Hi Pink,

Calogen is made by Nutricia - it's good for putting on calories fast and boosting energy as it's very high in fat.

Hope your Nurse suggests something good, you need to put on weight!

Love Ellie.

Kayleigh
18th March 2019, 23:04
Hi Pink,

I hope all is going well with your increased calorie intake, and that your MND nurse was helpful when she visited you today.

Love and best wishes to you and your family,
Kayleigh x

Pinkelle
24th March 2019, 08:32
Ive started the increased calories in my feed. Ive neen waking feeling a bit nauseous. Also feel a bit nauseous after putting the nutricia milk shake through the rig as well. Ive started apreadi g the drink throughout the day. That helps a little. Anyone else have this problem.
It's making eating very hard!
?

Sheila
24th March 2019, 13:02
Hi pink,
Sorry I am not much help as I haven't got a peg or rig at the moment, not yet. I am sure someone will come along with good advice shortly.
Take care
Sheila

Ellie
24th March 2019, 13:30
Hi Pink,

I daresay it'll take time for your system to get used to those extra calories after such a long time without.

Has the pump rate been increased I wonder?

Also, how fast is the milkshake being put through the feeding tube? If it's put through quickly, given you are not used to them, it would make you feel nauseous.

Love Ellie.

shrew
24th March 2019, 13:33
hi Pink sorry ur feeling sickly. I’m sure someone will be along soon with advice. Although Mick has a rig hes just on 50ml water. Hope ur feeling better soon x

Pinkelle
24th March 2019, 13:48
The pump rate is slowly increasing to the rate i was on. When having the drink it gets poured in and let gravity do the work which is very slow. I also have started having the drink spread through the day. (3portions)

Ellie
24th March 2019, 15:49
Hopefully it's just your body adjusting to the extra feed Pink, as well as the new ingredients in the milkshake (especially if you're unused to milk products)

If it persists, you should tell the Dietitian.

Best of luck.

Love Ellie.

JAY TEE
24th March 2019, 18:02
Sarah and all, I had peg fitted three years ago .but can still eat well so long as food mashed. Not having Peg food yet having read through the posts I have learnt a lot. So thanks all for comments.
Best wishes John

Lynne K
24th March 2019, 23:11
Hi Jay Tee. What made you have a PEG fitted 3 years ago? We're you able to eat normally then? I can eat most things but slower than in the past. Lynne

shrew
25th March 2019, 06:23
hi
Mick had his rig done in january. He eats and drinks normally at the moment. I suppose its ready then for when you need it. I suppose things can change quickly

Lynne K
25th March 2019, 13:04
Thanks Shrew. I'm going to speak with my consultant about when she would advise I consider it, now or later. I next see her in May. Lynne

miranda
25th March 2019, 13:59
As with most aspects of MND, progression is unpredictable. I had my PEG fitted 12 years ago on the basis of "sooner rather than later". Four years ago a new one was fitted because no one knew if it might have deteriorated. I still can eat a soft food diet and only use the tube for meds. I flush it through with water and rotate it daily which has become routine and no more onerous than brushing my teeth. I hope this helps those of you who are yet to make the decision.

Ellie
25th March 2019, 15:37
Hi Lynne,

When and if to get a feeding tube can be a bit confusing to say the least. A lot has to do with what type of MND one has.

Often those with Bulbar onset ALS need a feeding tube sooner than a person with limb onset ALS. As people point out, a tube is an insurance policy and it is way easier to recover from the procedure when relatively healthy and strong.

People with PLS or UMN Dominant ALS have slower progression and, as Miranda pointed out, may have a tube for a long time without needing to use it. Also not everyone with ALS loses the ability to swallow.

It's a bit of a red flag for needing one though if anyone is struggling to swallow safely, coughs when eating or drinking, has sustained weight loss or has marked declining respiratory function.

Having said all that, it's up to the individual whether or not to get a feeding tube - some people don't want any interventions.

Love Ellie.

Sueb
25th March 2019, 21:15
Steve has just had a rig fitted. Can I ask what type of feed you have. Steve was started on bolus feed 2 to 3 times a day using Nutrison Energy multi fibre. He can still eat a soft diet but after 2 feeds he was feeling very bloated and had an urgent need for the toilet.

Unfortunately he is in hospital at the moment with pneumonia, they think he could have got it from the hospital when the rig was fitted. He is doing well.

They have changed his feed to a pump over 24 hours with a 4 hour break while he is ill and are trying to increase the rate everyday, but he was feeling a bit sick. He is now on a protein food same make. Just wondering what everyone else uses.

Sue

Ellie
25th March 2019, 22:39
Hi Sue,

Sorry to hear Steve is in hospital with pneumonia - hope he hurries home to you.

I also use Nutrison Energy Multi Fibre through a pump.

Nutrison is made to be given slowly really, so bolus feeding may have been too fast for his stomach?
maybe he can switch to the non Multi Fibre version, just the Nutrison Energy which is still 1.5cals/1ml. That will allow him to see if it's the fibre that is causing the bloating and bowel issues. (He doesn't have IBS does he?)

Starting him on a pump for 20hrs in 24 might be the reason for the nausea, continuous feeding takes getting used to. It's usually eased in gradually, but if he's being fed over such a long period it must be at a slow rate - any idea how many mls per hour the pump is running at?

Is his total calorie intake ok?

Love Ellie.

Barry52
25th March 2019, 23:34
Hi Sue,

I’m sorry to hear that Steve is in hospital. Please give him my best wishes and I hope he is back home soon.

Barry x.

shrew
26th March 2019, 06:30
sorry to hear that Steve is in hospital Sue. I hope he is feeling better soon and back home x

Sueb
26th March 2019, 07:00
Hi Ellie

Steve doesn’t have IBS. It’s unusual for him to go to the toilet so often and that’s why they gave him multi fibre to start with.

They started the pump at 30mls and are gradually increasing. He had it at 75mls but then felt sickly so went back to 50mls which he seemed to tolerate. They are starting to increase again and want to get to 100mls. They are talking about pump feed overnight when he comes home. Perhaps all the different medications are not helping also.

Sue

Sueb
26th March 2019, 07:03
Thanks Barry and Shrew I hope he is too. I will pass on your best wishes Barry and hopefully he will be well enough for the next meeting.

Sue

Lynne K
26th March 2019, 11:14
Thanks for the info Ellie. You are a star. Lynne x

Ellie
26th March 2019, 12:51
Sue, it took me 10 days to work up to comfortably tolerating continuous feeding at 125mls/hr - started off @25 for 3 days, then upped in increments of 25s untilI had feed at 125mls/h on day 10

But... I had the luxury of eating orally too, so there wasn't the urgency of "getting the calories into me" so to speak.

I'm sure he'll get there.

Love Ellie.

Kayleigh
26th March 2019, 13:06
Hi Sue,
I hope Steve is starting to feel much better. Hopefully he will be well enough to return home very soon.
Love to you both,
Kayleigh x

Terry
26th March 2019, 15:48
Hi Sue,

I hope that Steve feels a bit better and that the meds soon start to work.

Always consider trying to transfer him to the hospice because they generally have a lot more care available and are used to Mnd people. Many of us have been in them.

Love Terry

Sueb
26th March 2019, 18:06
Hi
Thank you everyone. Steve is obviously very tired. He is using cough assist to get the secretions up and the physios come 4 or more times a day. They are very happy with him. He will taking the cough assist home with and the family are coming in for training.

Ellie thanks, Steve to have tolerated the feed better today and they been able to increase to 75mls. He is a bit frightened about eating at the moment until the infection is better, he doesn’t want to undo all the work he has done, but will try again once home.

Terry we are in an excellent ward in hospital. They have had MND patients before and are very aware of his needs. Our MND nurses and respiratory nurse also come to see him regularly.

Sue

Sheila
26th March 2019, 19:49
Hi Lynne
I have my first visit to the clinic in early May. I bet a peg will be mentioned. I am not sure yet what to do. I suppose everyone is different.
Sheila

Lynne K
26th March 2019, 21:50
Good luck Sheila, Lynne x

Iron Will
13th April 2019, 20:21
just reading this thread makes me wonder how I will go on when I need a PEG. I weigh 115kgs, I reckon i'll have to get Dyno rod to fit my PEG :)

shrew
13th April 2019, 21:56
Mick is about 106kg. He had a rig January.

Ellie
14th April 2019, 19:13
Hi Will,

I think you'll be OK at that weight to have a feeding tube fitted!

If morbidly obese people can successfully have a PEG procedure, I'm sure your belly won't preclude you from having it :D

You may be stuck with a long tube and not be able to have a low profile button if you need an internal length > 5cm, but that's about it.

Love Ellie.

Terry
14th April 2019, 20:32
Hi Will,

You may be stuck with a long tube and not be able to have a low profile button if you need an internal length > 5cm, but that's about it.

Love Ellie.

For the first time ever, you're wrong Ellie;

Micky only goes up to 5cm but there are other makes that make them longer. They are not so well made as regard to there fittings and shape but they are available.

Love TC

Iron Will
15th April 2019, 20:12
thanks people. I just can't shift any weight. which brings me to another question if you don't mind. I thought I saw on here that I could trousers with a Velcro flap at the front for using a bottle easier. any clues? my illness is beginning to bite now. legs went ages ago but arms are now very weak. bed and hoist ordered . bit early but I best get them sorted. my downstairs room is built and being decorated. I have asked for a bar in there ;)

Kayleigh
16th April 2019, 14:57
Hi Iron Will,

You might find some useful information about trousers for gentlemen on the 'Clothing to make life easier' thread - the Able2Wear website is recommended by John (Jay Tee) on that thread:-

http://forum.mndassociation.org/showthread.php?8657-Clothing-to-make-life-easier&highlight=Trousers

https://www.able2wear.co.uk/wheelchair-clothing/wheelchair-trousers.html

Hope all goes well with kitting out your new downstairs pad. Great that you want it to include a bar! (all round to yours to celebrate the grand opening - what time is happy hour?! ;))

Best wishes
Kayleigh x

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