My dad is 6 weeks post surgery and was fitted with a jej tube when he had his operation. We saw the dietician a couple of weeks after his surgery and she said dad could drop to 5 nights of overnight feeds. Dad isn't keen on having the feed so he decided to do alternate nights shortly after this. However, Dad's eating is not regular enough ( I don't think) He isn't snacking that much and says he feels full after eating a small plate of food. He's always been slim and never overweight. Last week, he weighed himself and he'd dropped another 5lb. He's currently only 10 and a half stone... I'm really worried so insisted he upped his overnight feed back to 5 nights which he agreed to do. (Thank god for these feeds!!)
Its really hard, he's learning to separate drinking and eating but he'll have his porridge and banana for breakfast, then not eat again until late afternoon. This is usually a small trifle or half a sandwich, then he might have a very little plate of dinner ( small piece of chicken with veg or similar) but then not eat much at supper. I realise it's only been 6 weeks since his op. Am I expecting too much of him? I'm just so worried about his weight. He just looks so thin. He says he'll try to eat more but I know it must be so hard for him when he feels full easily and says he doesn't feel hungry. I just can't stop worrying. I just wondered how anyone else has coped with eating after such a life changing op?. I know it must take time. I even made dad a chart with 2 hour gaps for eating times, but that's easier said than done.
I'm going to contact the dietician again and we due to see the oncologist next week, where he'll likely discuss Dad's intended post op chemo. That worries me too as dad lost his appetite during his pre op chemo and his sense of taste. It may be that he'll need the overnight feed every night once his chemo starts.
It's such an awful and unpredictable roller-coaster.... On the plus side, we were told that there was no evidence of the cancer after Dad's op and that there was none to be found in the 38 nodes they removed!! Basically the pre op chemo did its job very well and shrunk the tumor alot. Fantastic news to hear!!! Now we need to get the eating side of things sorted out. Any tips or advice would be greatly appreciated x
Brilliant to hear about your Dad’s post surgery results ..I’m sure you both must be very happy with the outcome so far ..Like you say it’s a rollercoaster of a journey ..We seem to rid ourselves of one issue only for it to be replaced with another !...
Going off my husband’s experience the eating side of the process has taken quite a while to find a regime which works for him ..I suddenly found myself trying to feed this ‘new person’ who had no appetite …Far from easy ! ..It’s taken eight months for his new ‘ little and often’ eating regime to become second nature …to reduce the Dumping.episodes . and for his weight to stabilise ..We are still learning even now…..He too has always been slim ..He’s still under 11stone but maintaining .and it’s taken him over twelve months to almost regain the three stone he lost ..so it’s been slow progress weight wise..
We found it’s just a case of persevering and building up food intake gradually ..We relied a lot on his JEJ every night for all the extra calories for six months post surgery and just reduced feeds gradually when we felt he’d had a good day nutritionally . Now I try to make every meal (albeit small portions ) as calorific as possible ..A dash of cream in his soup ..extra butter and cream in his mashed potato etc etc ! …It suddenly hit me like a ton of bricks one day that this was not a temporary measure either ..this is permanent and definitely one of the life changing consequences of the surgery ! Although it does seem to become easier as time passes and you do find yourself becoming gradually more relaxed about the whole eating side …It just takes time .
I also built up a good relationship with my husband’s dietitian and we’ve worked together to build up gradually to the point he’s reached now ...It’s definitely required determination and lots of patience ! Lol
I know it’s a worrying time so I fully understand how you are feeling but I’m sure you’ll find things will settle eventually .
Hope all goes well with your Dad’s oncology appointment next week ..
Thanks for your reply JPM. Yes, worrying has become routine with the whole situation. I just feel that, although the medical team are brilliant at what they do, they don't exactly fully prepare you for how things will be once the surgery part is over. Its like beginning a whole new chapter of life for dad ( and me) learning what foods can be tolerated and how much and how often. He does often say how full he feels. I just feel I'm always prodding at him to eat! So he must get sick of me ha.
Will see what the oncologist has to say next Tues. Next part will be the post op chemo. I know dad is dreading that as he now knows what to expect, plus I'm guessing tougher this time, having been through the surgery. It's awful what our loved ones have to endure (even though necessary!)
It is really hard for everyone involved and as you say I know I wasn’t prepared for just how much it would take to get used to the new way to eat and drink.
My husband really had to nag me to eat. I was told that during the op they can damage some of the nerves which includes the signal that you are hungry, hence most of us never feel hungry post op. Couple this with the frequent dumping really puts you off eating. I am sure you and your dad know he should be trying to eat 6 small meals a day this can be easier said than done in the early days. We didn’t worry about portion size to start it was more important to get used to eating regularly and drinking in between. When I did eat we added as many calories as possible, the dietitian gave lots of tips on this.
The dumping does settle over time, and it seems can be worse for some than others. I am 10 months post op and still have dumping most days. Through trial and error I now have a fairly bland diet such as only very small amounts of anything sweet, no salad or raw veg, only well cooked veg in smaller amounts than before, avoiding high fibre food, only small portions of carbohydrates, no spicy food etc. it has definitely helped me but I know some people can tolerate things I can’t and I may be able to eat more over time.
I lost a lot of weight in the first 4 months after the op however I could afford to lose it so never wanted a feeding tube, I think if you don’t have the weight to spare assistance with eating has to help with the recovery.
There is no way to sugar coat it the post op chemo is harder. I dreaded it but it does pass. However as you say the assistance feeding can be very useful as it can get harder to eat for a while.
It does settle over time and you do relax, it becomes the new normal, I was told to allow a year and I think that is going to be about right for me.
Good luck Tuesday and all the best for you and your dad.
I was in your Dad's situation 2 years ago, although not with the overnight feeding. After my Ivor Lewis I completely lost my appetite and took a lot of pressure from my wife and my daughters about not eating. Pressure to the point where I would snap back at them because I didn't have the energy to resist. I knew they were pressuring me out of love but I was so under the weather that all I wanted to do was sit there doing nothing. I would have maybe a banana for breakfast, some creamed rice pudding at lunchtime and sometimes some chocolate in the afternoon. I tried the high protein drinks but they tasted awful and made me retch. This all went on for about 2/3 months and I dropped from 105kg to 75kg, Then one day on our way to a post op consultation we passed a fish and chip shop and I suddenly felt peckish, on our way home we bought a portion of cod and chips and that was the start of my appetite recovery. I now have my appetite back and am still learning to eat small portions more often, my eyes are bigger than my stomach and over eating is easy. What I am trying to say is your Dads appetite will return and with your help and love his weight will stabilise.
Thanks JacPop. Yeah you're right in what you say and even dad is now admitting this whole recovery time could take a year, like we were initially told. Dad actually spoke with the dietician yesterday. She was trying to push the full fat milk option, but dad struggles to drink it as it's too creamy, so he has semi skimmed. She has said that dad can go onto 4 night feeds a week so we'll see how he copes with that. It's the snacking he needs to up as his regularity of eating isn't quite there yet. We will persevere though.
Thanks for sharing your experience Duncan. Yeah it's a worry when dad is only just over 10 and a half stone. The dietician has actually said he can drop to 4 night feeds a week. We're trialling that whilst keeping an eye on his weight.. its getting the balance right and I have to remind myself that its still early days after dad's op (just over 6 weeks). I really hope his appetite returns to some kind of normal in the coming weeks, but I also know that chemo badly affected his taste/hunger last time, so expecting that will be the case again! Will just have to take it day by day..