My dad has just gone onto a soft diet and everything is just going straight through him . He looks dreadful and feels it, ive never seen him so poorly and down. My mam said he was crying as he is up all night.
I thought enough is enough so got the DR out to see him today who have px codiene phosphate for pain as he was only sent home on paracetomol. The Gp seems to think this will help with his loose motions and the pain of course. The gp ran some bloods on him too aswell as sending his urine away as he is up for a wee 6 times during the night.
I called the the dietician to ask if dad could have his jeg on during the day and she said no because it may hider his appitite. I then asked her when this jeg can come out she said how long is a piece of string ? And went onto to say if he has chemo they keep it in due how crap the chemo makes you feel post op.
Im guessing this jeg will be in untill well after the New year if he has chemo? I though i have seen posts on here that the jeg was taken out after about 4 weeks. ??
Why do they decide to take it out & when. My dad is so frustrated he hates it. But needs must i suppose.
He doing amazing but has had set backs and the main issue is the sleeping problem and loose motions.
I hear that the 1st 2weeks at home post op are the worst... im feeling a little helpless and my poor mam is getting over her radiotherapy treatment. I just feel like there is no help .... my mam cooking bits all day, doing his jeg on a night , shes even been doing his injection. The district nurse came in and changed the dressing but is not coming back till next Tue. His wounds are great .....so a positive. Im sorry about the long winded message.... i just want my mam and dad back to normal or normal as they can be.
Take care ❤❤
Written by
Hope1972
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I just wanted to send you virtual hugs - I do not remember this time but I know that it was tough on my husband (he had minimal help if any). It is true that it gets easier with time.
Just a quick one, my Dad had his tube out about 4 weeks post op. The originally said they would leave it in for chemo but he had steadied his weight and appetite by then.
If you can get your Dad to eat bits, speak the dietician and see if on a weekly basis they can reduce the feed. They reduced my Dads week by week to see if he could maintain his weight and because he did they just took it out.
He did lose weight again during chemo but now his chemo has been abandoned his weight is steady again.
Don't worry though, all this came a few weeks after being up all night, diahorroea and feeling really down. He soon picked up, although at the time it felt like forever.
Please reassure you're dad this doesn't last.
I know everyone is different and maybe the doctors will leave it in for your Dad, but my Dad was so determined to have it taken out that he ate as best he could to ensure it came out and it did just that!
Its a difficult time but its nice to know things become easier. I hate seeing my poir dad poorly. I hope your dad is doing ok now since stopping that nasty chemo ❤❤❤ ive copied and pasted your message and have sent it to my mam xxx
No problem. I know peoples replies really helped and still do help me. I know I have said some similar things to you on Macmillan site too, but honesty it does get better. I used to think it wouldn't, but some days now I feel like I have my Dad back! Which I haven't felt for over a year! So those days are good days!
My jeg remained in place for three months after the op', it may have stayed there even longer if a couple of the stitches keeping it in place hadn't come out. It was arranged for me to have the stitches replaced but - to cut a long story short, the jeg tube was accidentally pierced by the needle during the process and it had became quite painful the following day so they decided to remove it.
I had 'bouts' of diahorea but had been sick onstantly everytime I ate anything - that stopped once the jeg was removed. I was 72 when I had the op', had lost nearly three stone and with the sickness as well I suppose it made sense to leave the tube in place for as long as necessary but the food supplements were extremely sweet and 'I believe' that's why they were upsetting my stomach. It seems a bit odd that we're told that sweet foods may cause dumping while being 'fed' with food supplements that are far too sweet to be pleasant.
I realise they may not be the reason for your fathers diahorea but it might be worth asking if he could give the supplements a miss for a day or two, just to see if it makes a difference. Hope things will begin to improve for him soon.xx
Hi things will get better. My Jeg stayed in until 6 weeks after chemo. I lost 3 stone in all. The new plumbing as we call it takes time to settle down. Everything is overwhelming at first he has been through a massive operation.
Has he tried a meditation app like Headspace to help him sleep. My husband and I used to put it on at night and after a few nights would drift off to sleep without hearing the end of it. Good breathing exercise too.
You have a lot on your plate, take care of yourself too.
I'm sorry to hear about your Dad and the difficult time for you all.
My husband had surgery in Jan this year, and his Jej wasn't removed until 4 months. He didn't have post op chemo but did suffer from many complications.
He found the jej caused the runs when he first started it, as the feed id full of lactose and the hospital said this was common. I guess your Dad's new plumbing will also take time to settle.
The feed at night will help to keep his weight up as with this op it's so easy to lose it and hard to stabilise. My husband was in a rush as are most to get the tube out and return to normal, but normal takes a long time to adapt to, and riding the lows are sometimes arduous, so one day at a time has become our motto.
keeping your Dad's spirits up and knowing things will improve slowly is the best you can do at the moment. The site is here for you ~ good luck!!
Really sorry to read your post - it was familiar to me, as my Dad went through a big op and 10 months of chemo back in 2008.
He was miserable, went from a portly man of 16.5 stone to under 12 stone at his lowest. We got so worried about his lack of eating, or ability to keep things down. He didn't have a jeg, which meant we were doing everything we could think of to get calories into him. Chemo was awful for him - the first half of every cycle was hell, lots of vomiting and diarrhea, and he really retreated into himself. He'd gone from this happy go lucky food-lover to a man who literally couldn't stomach a teaspoon of plain boiled rice.
My mum was working, but I was off work and sort of trying to look after him a bit, which mainly involved cooking for him in the hope he wouldn't immediately vomit (he would), getting his medication and distracting him with TV/films.
Mum found herself having to do his injections twice a day, which really upset her. And on the rare occasions he felt a bit stronger and showed signs of his cheeky sense of humour, it's like it all hit her again suddenly and she'd fall apart.
It's so hard to watch people you care about go through something like this. I can't offer any advice (sorry...) but what I did want to say is that it gets better. It doesn't feel like it, it can feel like your entire life has changed beyond recognition. But I guess you just need to keep in mind that your dad is getting the care and support he needs (from you guys and from medical professionals). He's going to be frustrated and unhappy and despairing at times, and it's incredibly hard. Hard for you to watch that too.
Make sure you look after yourself too. It's so easy to get to the point where you're worrying so much about everyone else that you bottle things up. Communities like this are great (wish I'd found one back when my dad was ill). Talking to people really does help you work through your worries.
Take care,
Jo
P.S. My dad is back to the bloke I knew now, so hang in there. Took a while, and he had a lot to work through - he still has issues with food and sleep, but we got there. Stuff like this changes people, but it doesn't take away who they are.
You are lovely to be so caring .I don't know if it helps but I do think it's harder in some ways on loved ones than on the patient !
I think you should speak to the dietician again and stress about the constant diarreah . Ask if it's possible that a different type of feed might help .I know that there are various sorts ,some are high fibre for instance .
If you google peg/jeg feeding you'll see that some people make up their own feed .Of course this is a bit radical and understandably would send the dietician into a fit .They like the feeds and supplement drinks because they contain all the right nutrients in the right proprotions .
The painkillers from GP will probably help ,opiate based pain killers notoriously bung you up .If they don't I'd suggest supermarket own brand tablets for mild diarreah - not lopermide based but kaolin and calcium
both are milder than lopermide which can make you go too much the other way .
The pepto bismol makes your poo go black ,so don't panic .
I'd also suggest dioralyte or similar .I liked the ORS lemon flavoured stuff or if you google rehydration salts you can make your own .Your electrolytes get horribly out balance with diarreah and the rehydration stuff really helps .
My jeg was left in for ages after chemo had finished ,I think they forgot it and I had to nag .
Finally ,who is too know if your dad doesn't use the jeg feed as much as suggested ? Why not try not using it as much or using it in the day as opposed to the night ? A decent sleep is SO important to healing .
Im sorry for the late reply, ive been really busy with everything.
Firstly thankyou for all of your replies and the great tips which i take everyone on board as we need as many tips as possible.
My dad still has his jeg in and still hating it lol. However if he hasnt got the runs it goes the other way with the codiene and then needs to take movicol if its not one thing its another.
The sleeping is no better either .... he takes temazapm but that doesnt work apart from making him feel crap during the next day.... he sleeps 10 mins here and there during the day but is up passing urine all night ( ive never known anyone wee as much during the night). ... i feel its becoming a psychological issue ??
My dad has to go and see the oncoloigist next week ....i really hope they dont say my dad has to have chemo again. Anyway what benefit dies it have anyway ??? Any thoughts ??
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