running food pump at night tips- j peg feed

Hi Jules

I grew to hate that pump but couldn't have lived without it as I was nil by mouth for 4 weeks.

I was on 1400ml over 17 hours so didn't have much choice but to have the pump running at night, sadly. I used to have the pump on the stand on the floor next to my bed running on the battery. That way, if I needed to get up in the night I could carry the stand with me. I used to lie on my back, for a couple of months after surgery I found I couldn't lie on my side at all, too uncomfortable.

Hope that's some help, it does take a bit of getting used to.

Best wishes

Mutti

thank you mutti, i am the same, 3 weeks into treatment, havent eaten solids for ages , cant see that changing either, will do exactly that, on the floor by the bed, have had it on during day/evening so got used to that, and it has been a god send, will have a play this weekend, long day monday for chemo and radiotherapy, so will run it overnight then.

many thanks jules

Hi Jules. I had the feeding tube inserted during the operation and whilst in hospital didn’t even know it was there. I felt a little more concerned when I came home and had to continue with it. I used to start at 10pm at night and would finish around 8am (I think it was 1000 mls). My husband used to set it up every night and then flush it in the morning. I had ithe pump at the side of my bed and slept on my back, very propped up with pillows to keep me raised up. I kept it going for about 4 weeks at home and I really tried to persuade the dietician to let me finish sooner rather than later. However, they had to be sure my weight wouldn’t plummet after the op and that I was getting enough calories in through normal eating. I knew at the time it was good for me, just made me feel a bit of an invalid. I used to carry it with me when I went to the loo through the night. I always felt relieved in the morning when it was done and I did get used to the routine. 
Hope you can get your head round it. It’s not awful, just feels a bit odd mentally. Good luck with your treatment, Julie x

My experience of the JEJ feeding pump was almost identical to yours. I was initially on 1200ml over 12hrs (8pm-8am) and then reduced to 800ml over 8hrs (10 pm-6am). I was so happy when I finally had it removed nearly 11 weeks after my surgery. Unfortunately on the day I had my JEJ tube removed I also had a PICC line put in for the postoperative chemo so I had to wait a few more weeks to be totally tube free!

thank you all, almost feels wierd when its disconnected, think i need to get over 2000 calories, so depending where i will be, looking at to do the 1500 calorie 1 litre as i have been, then 2 x 200 ml @ 600 calories, stupidly had a proper tearful wobble yesteray.  was my 15th day of radiotherapy, but last time when i left churchill on 29th april that was my 15th last breast cancer zap, all i had to do was to adjust to the lop sidedness, didnt realise it would effect me so much emotionally and mentally knowing that this is all far from over.  and the image when i got out of the shower, devastating.  was just so angry and tearful at the same time, poor husband didnt know what the hell was happening, might explain why i just took myself off to bed at 8.  just downstairs while he catchces up on his sleep.  the amount of people that say just sit on the sofa and chill, i wasnt that person before, to get some little jobs done makes me feel like im not useless.  is that the same for you guys.  almost can feel my shoulders tensing for mondays chemo, had no saliva at all throughout the night, thats a first.

least im plugged into the pump early, and thank you for your support.  maybe a little potter in the garden with hubs before the temperature drops next week.

see oncologist 27th 2 days before treatment stops 29th, assume he will advise ref chemo after removal of the oesophagus if it can still go ahead, so up in the air, god these baby steps are annoying but realise this is where i am at.  Should have started a swear jar people!! would have been minted

thinking of you all and thank you

Hi Jules,

I’m the same as you. Used to being on the go all the time so sitting around all day doing nothing really was a struggle for me. Don’t do daytime TV at all and didn’t have the concentration to read (kept forgetting the plot & characters in the book) so I started using audiobooks instead. Kept setting the sleep timer to ‘end of chapter’ so that if I nodded off half way through then I knew where to restart from. I also had the dry mouth thing during chemo. Got through an awful lot of juicy fruits during that time (particularly pineapple - fresh & tinned) Things are a lot better now. I can actually do things, albeit in short bursts and with rest periods in between, so I don’t feel quite as useless as I was. I can also read again now so can happily while away a couple of hours in the afternoon & evening with a good book. Still use the audiobooks for my walks. Keep on hanging in there. Things do get better. CB

thank you, the days you feel useless are so soul destroying , but sure tomorrow will be better, thank you again cool blue, some good tips there to jump on x

Hi Cool Blue. Ironic. Getting rid of one tube to be replaced with another! There is no choice though is there; keep taking the treatment in order to be closer to the end goal. Take care, Julie 

Hi all

odd question but does anyone get a strange taste in their mouth from the Nutricia food ?.