Question about overnight pump feeding

[SarahWP]

Hi

I’ve been pump feeding overnight for a short while now but wake each morning and have a dose of diarrhoea. We’ve tried a couple of different types of feed but it’s still happening. My wife thinks having a litre overnight is too much for my body but it’s over the course of 8 hours so I think it should be doable. I really want to stick with the overnight feed as it doesn’t disturb my sleep and gets it out of the way, freeing up my day.

Can you advise please?

Thanks
Sarah

[MNDConnect]

Hi Sarah

It's common to experience diarrhea with PEG feeding. The digestive system wasn't really designed to have liquid pumped directly in to the stomach and so this can often cause irritation. This tends to happen less, the slower the feed is given.

Have you discussed the issue with your dietitian? I know you've tried several different feeds but I wonder if the dietitian has tried something like a lactose-free feed which can sometimes be a bit easier on the stomach? It may also be worth discussing with the dietitian if it's worth trying to extend the length of time that the feed is over. 8 hours is quite a long time but it can sometimes take a while for the body to adjust to tube feeding. Starting very slowly and then gradually increasing the speed can sometimes help to prevent stomach issues.

Best Wishes

Rachel
MND Connect Adviser

[SarahWP]

Thanks Rachel

I’ll speak to my dietician again and try doing it over a longer period.

Regards
Sarah

[Ellie]

Hi Sarah,

Sorry you’re still having problems even after trying different feeds.

Some culprits to rule out:
A reaction to one of the allergens in the feeds or the wrong amount of fibre.
IBS, GI issue or diabetes.
Interaction with meds.

Some suggestions:
‘Line’ your stomach before feed starts - milk, yoghurt etc. (I take Lansoprazole to protect my stomach)
Short term: try taking 500ml during the day and 500ml at 60ml/h overnight which will let your digestive system get used to feeding or confirm an intolerance of sorts to a feed/feeds. (I agree with you in saying 125ml/h is not ambitious)
As Rachel said, there are specialised feeds available to try - Nutrison probably have more options than Jevity.

I know people who tube feed with blended normal meals (using a very good blender) but do it during the day and this obviously requires more time, thought and effort.

Do you think the Nutrionist on board to coming up with a solution?

Best of luck.

Love Ellie.

[SarahWP]

Hi Ellie

Thanks so much, this is, as ever, really helpful. When you say you take Lansoprazole, what form is that in? I'm on it too, tablet form (it's a chalky consistency so melts in my mouth). I might try having less at night at a slower rate. Or just wait it out till my body adjusts!?!

Yes, my dietician is trying to come up with solutions. She suggested taking Imodium before bed last night but that didn't work so i've let her know.

Just praying something works eventually....

Thanks again
Sarah xx

[Terry]

Hi Sarah;

I have no experience or knowledge of night feeding but along with your wife that reducing the rate would not do any harm for a while.

Love Terry

[Ellie]

Yes Sarah, my Lansoprazole is orodispersible form too (don't bite the little hard balls, they're the good bits!!)

I am not a fan of Imodium, yes take it very short-term in emergencies but not to mask an underlying issue - it can cause too many knock-on problems, but it's telling it didn't work on you...

Are you still trying different feeds and have they all been the same brand?

It could be that your issue may not be feed related, sorry to say, and needs further investigation - did you get checked for any lurking nasties - salmonella, C Diff etc? You can't be getting sufficient nourishment if you've daily diarrhoea

I feel for you.

Love Ellie.

[slp]

Hi Sarah
I feel for you. I have just recovered (fingers crossed ) from two months of dreadful constant diarrhoea. It started for no conceivable reason and I ended up in hospital for a week. I had lots of tests and tried 6 different feeds and nothing made a difference. I was sent home on a large dose of imodium and a recovery feed at a much slower rate than I am usually on. I had to take 4 tablets of Imodium , every three hours to stop the diarrhoea so don't dismiss it until you have given it a good try. I started cutting it back after a month and have now been off it for a week and have gradually been increasing my pump rate and I am nearly back to my normal rate.
Looking back the only thing that might have triggered the diarrhoea was changing to a high fibre feed to try and reduce my constipation !
I don't know if any of this helps but try the Imodium again in a higher dose.
kind regards Sarah xx

[slp]

PS I also take Lansoparazole but in liquid form in my PEG x

[Ellie]

Oh that's great to hear, Sarah/slp - you certainly went through the mill but got there in the end! It should give SarahWP hope, though without the hospital admission...

I never knew Lansoprazole came in liquid form, that's good to know. It isn't listed as coming in liquid form - was it hard to get? Is it a smooth liquid? Oh, it says on the NHS website that it's "made to order" ?

Thanks a million!

Love Ellie.

[Terry]

It's always worth making sure that liquid medication is suitable for going through a PEG, some is not but often OK if mixed up and pumped very slowly.

Love Terry

[slp]

Hi Ellie
yes it is a smooth liquid and you have to keep it in the fridge x I have been having it in liquid form for 12/18 months
love Sarah xx

[SarahWP]

Hi all

I’m pretty sure it’s not an underlying problem as the diarrhoea was only happening in the morning. Last night I had 600ml over about 8 hours, so at a slower rate (& Imodium) and...no diarrhoea! Yay! Now need to fit in the remaining 400ml this afternoon. Really hoping I’ve finally cracked it but not counting my chickens just yet!

Thanks for that advice and support all. This really is the gift that keeps giving isn’t it...

Love to you all
Sarah

[Ellie]

Yay, that's such good news Long may it continue!

I'm sure you can rig up something for later but the special backpacks are very handy to have - maybe ask Abbott for one? If they're as good as Nutricia, and I've no doubt they are, you'll get one promptly.

I put mine on the back of my wheelchair, so I can eat on the go or just pootling around the house. They have pockets and openings in all the relevant places so the whole backpack need not be opened for access - good for privacy in public. (I know you intend to do full overnight feeds but you never know)

This is what the FreeGo backpack looks like:

FreeGo backpack.jpg

Hope tonight goes well too.

Love Ellie.

[SarahWP]

I think I have a back pack that the Abbott nurse gave us somewhere- we’ll dig it out as that will be ideal for pootling about, as you say. :-)

2 successful nights now - yay!

As an aside, I had quite a time of it today. 2 carers turned up who had never been before and put my sling on so badly I promptly very nearly fell right through it. It was very scary. They had to man handle me back onto the bed and I’ve stayed here for the rest of the day. We rang the office and complained of course. Luckily one of my regulars came tonight, with someone who’s been twice before, so I was in safe hands.

Good night all!
Sarah