Eating post oesophageal operation

Hi Quilter56

I can imagine this must be a real worry. My dad is currently in hospital, he had an oesophagectomy yesterday. He has already been fitted with a jej feeding tube into his stomach. Basically this will help stabilise dad's weight until he can build up eating orally.  To be honest I'm glad he has that as a back up so that he still gets his nutrients and calories in. Can I ask why you want to avoid the feeding tube?  Surely it's better that he gets some form of food than too little? None of this is a situation we want to be in and it's such a worrying time. I do empathise with your situation. You could always contact the Macmillan support line and ask for their help/suggestions? I hope you find a solution. Do take care x

Hi,

I'd just like to say that its early days after such a major surgery so everything is still tender and healing. Eating small and often is important. Small being a meal no more than the size of the palm of his hand. I'd also suggest using the feeding tube as this will help provide essential nutrients for healing. Initially I wasnt hungry at all and I would eat on a schedule even if it was something very small. I had my op in January and I can say I can now eat quite a lot comparative to those early days after the surgery. Its still less than before but not massively so. My hunger signals have returned as well as my enjoyment in food. Balancing food and water is no longer an issue.

Might be worth talking with the dieticians. I found them quite helpful. I thought of learning to eat with my new digestive as stage 2 weaning and got ideas for food that could be liquidised by looking at my old recipe books I had for when my son was weaning...I just added more flavour.  I know probably not the usual way of doing this but it provided a structure as I found it quite daunting in the beginning. 

Wishing you both all the best. 

Suzy

HI

Why do you not want to use the tube at this early stage?  My partner used it for a few weeks he hated it but once he felt he could eat more himself we stopped the feeds and he worked on building himself up and now 9 months later has gained a lot of the weight back, its hrad to keep it on but hes trying his best.  The feed will give all the nutrients he needs for now until hes able to eat more.  Small and often is key and dont drink along with eating keep them seperate. x

Hi 

I can only speak from my experience but I just did not want to eat for quite a while and if my husband hadn’t kept putting food in front of me I doubt I would have bothered.  I felt sore, sick, pains after I had eaten and evertything went through quickly.  We stuck to small portions every few hours and concentrated on its better to eat a bit than nothing and gradually I felt more like eating and so eat a bit more.

I was told nothing was off limits and to eat whatever I fancied don’t worry about healthy, I got to enjoy a little bowl of ice cream in the afternoon.  I know you will have guidance on soft foods for these early days and it sounds like you are doing quite a good range.  My husband did cereal, soup, jacket potatoe, spaghetti hoops, cheese, mousse, wotsits, as well as the things you mention

i refused to leave hospital with the feeding tube, I can’t explain why it just upset me, so I do understand the reluctance at least you know it’s there if the eating does not improve.

it is normal to lose weight after the op, I lost about 3st which shows how my eating dropped off, so I would give it a bit of time and if it doesn’t improve make sure you speak to the dietitian.

All the best 

Hi Quilter

My husband had his oesophagectomy at the end of April and I completely get how hard it is for you. Like your husband, my husband had a feeding tube fitted but refused to use it beforehand and after he left the hospital. The mushy food was a nightmare as he refused almost everything, hates porridge normally so that was never an option. I felt like I was literally useless as I just couldn’t get him to eat. My friend is a dietician and suggested he try a mass builder milkshake from holland and Barrett, I got the hospital dieticians to check it had everything that he needed and was safe for him. Needless to say, he stopped losing weight, and it gave him time to heal both physically and mentally from the surgery, the fear alone was written all over his face, he was so scared he would be sick and cause irreparable damage to his new oesophagus. Anyway, he slowly started trying new foods and the portions are increasing although we know it will never be the same pre op but he is doing amazing. He has today finished cycle 8 of flot and we are all taking a deep breath now his treatment is finished. 
please have faith that he will get through this, slow and steady will win the race xx 

Hi Vanessa

Thanks for your response.  I will check out the Holland & Barrett milkshakes.  I really feel quite useless at the moment.  Hubby has gone into a decline over the past week or so.  Everything is just too much effort.  He doesn’t want to eat, or do anything and I have to be honest and say he is really dragging me down.  I don’t know what to do to help him.  I feel really guilty that I feel this way but I am at my wits end.  We have an appointment with the surgical team on Monday and I am hoping that may help. Xx

Hi Quilter56 it’s hard to eat at first ,first of all getting use to such small portions and also just not feeling hungry and almost having to force yourself to eat , I try to graze between meals either chocolate or grapes ,hula hoops  what ever , but did find the tube feed a life saver  best of luck

It will get better, I promise! I genuinely would sit and cry when I was trying to get food he could eat, I felt guilty when me and the kids would have “normal” foods but with each day it really does improve. I was literally watching my husband drop weight by the day and it was heart breaking to see, I’m just so grateful for my friend’s recommendation, those shakes were a lifesaver- literally!! Its called Optimum Nutrition Mass, £37 but worth every penny in my opinion (I don’t work for Holland and Barrett). I made my husbands with blue milk so even more calories and he just drank them throughout the day. Please just message if you want to talk, the battle we have or are enduring can be very dark and lonely, but it really doesn’t need to be x