Diet after IL op

[Suelue]

My son had the Ivor Lewis op 3 weeks ago and is still in hospital after a spell in ICU due to breathing problems and an infection. He's not making a lot of progress with eating and I wondered if anyone could tell me what they started eating after surgery and how long it took to be eating a reasonable amount. The dietitians want him to be able to sustain his weight solely by eating and not using the jej tube which seems optimistic to me as he couldn't do this before the op. Any ideas would be welcome.

[brucemillar]

Suelue

First may I wish you both good luck. You have come to the correct place.

I am 18 months post op.

You will maybe find that this is one of the most commonly asked questions.

It is a very individual thing as we all tolerate and like different foods. We also all heal differently. But I think I would be correct in saying we all lost weight after the op. I lost 5 stone. I was only 13 stone to start with. Now 18 months on, I am steady at 9 stone. But I eat well.

Small and often is the general rule for food. Expirements are the only way I found what I was good with. This changes as you heal.

To start I would manage only two oatcakes with thin cheese or peanut butter a day. I liked salad but had to have it chopped in a blender or the leafs would get stuck in my throat.

He may well have to have some throat stretches done (painless) but they allow you to eat more.

Keep asking on here and be patient. Things change daily.

Good luck

Bruce

[DaveChuter]

Hi Suelue,

First thing is not to worry, it is very soon after surgery and it takes time to get back into eating properly, a lot longer than 3 weeks.

Try soup, home made so not so thick to start with, sometime with taste as well, I lived on sweet potato and coconut or butternut squash and cauliflower soup with a slice of toast for the first few weeks.

Little and often with a drink in-between rather than with food.

Do talk to your hospital team, especially the dietician who can advise about what to eat to firstly stabilise he is weight and over time increase weight, also contact OPA who have an advise booklet with recipes for patients.

It can take months or in my case nearly 2 years before my weight started to get back to near with I was before, take it slow and don't worry.

Is there a support group near you so you can talk to other patients?

Happy to chat, can send over my number or it can be found on the OPA website with the Guildford support group listing.

Kindest regards,

Dave C

[Mickheinz]

I found baby food from Sainsbury 's very useful for the first week or so. They come in handy pouches that can be easily carried about, and loads of different flavours. I moved onto more solid food very quickly after that. A booklet available from the Oesophageal Patients Association was very useful. They can be contacted on line. They can also provide a handy wallet sized card that has proved useful when eating out. It says "Due to a medical condition I am unable to eat normal portions of food. Please provide me with a child's size portion". This is also available in other languages for when travelling abroad.

[Mentalmicky6]

Hi Sue , I like your son, had very serious problems after the I L op with sepsis, I was in hospital for a month during which I couldn't eat anything. When I eventually got home I started to eat tiny amounts of food like things with cheese in which I found to be anti sickness. My eating was so poor my jej tube wasn't removed until about five months post op. After my post op chemo I gradually started to pick up with the food little and often and has I've said before was back at work plumbing eight months after the op at 65. I'm now well into my fourth year post op and still working with no plans to retire, I eat everything I ever ate before including curries and drink Guinness and plenty of cups of tea and coffee. The only thing I don't do any more is smoke.

Tell your son it can be a long road to recovery , but the body is capable of amazing things and not to feel down and keep positive, all the best.

[philsayer]

I had a comedy diet after the op. Crumpets, Sugar Puffs, tinned grapefruit in juice. And that was pretty much it. Even now, 18 months later, I have cravings and fads. The tube is a nuisance but if proper eating is a struggle it's valuable, giving your son complete nourishment. Dietitians, in my limited experience, tend to be a bit purist and evangelical - mine pushed me quite hard - but if you can't face food...

As ever, I echo previous views - everybody's different. Wishing your son a good recovery.

[Suelue]

Thanks for all your comments, they give me hope. He did ng feeding at night before the op so I don't see why he can't keep the jej tube and continue with that while he gets back to eating. I can't say a 'normal' diet as his eating wasn't 'normal' before. He is struggling with anxiety and depression which he had before and I'm not sure this is being considered properly. He just wants to be at home but if they're going to insist he eats then I have no idea when that will happen. Again thanks for your replies.

[Spikey]

When you say your son is "not making a lot of progress with eating" is it because he is not hungry, or does he feel nauseous, or is he still having difficulty swallowing?

Personally, I was eating small but reasonable amounts by the time I left hospital, which was two weeks post-op. Unlike Dave, I couldn't eat soup - too much liquid content - and, like many other people, found bread difficult to digest. But I was lucky in that I could manage things like cottage pie, spaghetti bolognaise, fish and vegetables.

It's early days yet. Things will get better.

[Suelue]

Just had a thought. Did anyone see a speech therapist to help with swallowing issues. They're often used for TOF babies which Chris was. I don't know if they're available for adults.

[yorkshirerose in reply to Suelue]

Hi, yes l saw a speech therapist twice over 18 months, but was absolutely no help at all. My surgeon did say as she hadn't had to deal with anyone with my surgery he felt she didn't know how to deal with my problem. All resolved itself though and five years on I still eat little and often but on the whole live happily with my new plumbing 😊

[fortunatus]

I totally agree that he should for the time being take nourishment via the jej tube. Solid food was impossible for me for at least 3 months, 2 of which were spent in hospital (including a fortnight in ITU). Eventually appetite of a sort will return, but if my experience is anything to go by, will never be what it was. As to "little and often", that oft-repeated trope works for some. In my view, however, it is better if possible to try and resume as normal a meal schedule as possible. All the very best to you and your son.

[wherethewindblows]

I had my op at St Thomas' in London .

Their policy was to routinely insert a j peg during the surgery and leave it in place until post op chemo was finished . So months after op .

I tube fed at home at night after op although I only lost the tinest amount of weight .I did find the tube feeding reduced my appetite .

I'm really struggling with the idea that your son's team want him to maintain weight by eating at such an early stage .Your body uses huge amounts of calories when repairing itself after surgery .

Could it be that even with tube feeding he's not maintaining weight and they want eating to supplement tube feeding ?

I liked M&S tins of chicken noodle soup and lemon cheescake /mousse type desserts .

Also poached eggs ,haddock ,mashed pots .( add milk powder and butter to potatoes and soup )

[Hidden in reply to wherethewindblows]

HI, thanks for the info,, no idea what a j peg or this jet tube is??? I go for my op tue 22 may 2018,,, maybe they explaine this after the op???? Mmmm cheese cake, yummy,,, but i also read many say sugar causes dumping,,,?? When i mention this DUMPING to the clinical nurse at st,thomas's she got all weird on me,, mentioned id read of this on this site, all she said was thats not what dumping means,, cant say was impressed with her,, ADD MILK POWDER you say,,??? So not actual milk???? wHY IS THAT?

[guzzirob]

Another thing to try to understand is that the surgery cuts the Vagus nerve, which controls, among other things , links between the oesophagus, the brain and the stomach. Some if not all suffer post op from total lack of appetite. I personally was amazed that cooking smells including those from supermarkets, shops and takeaways had no effect on my senses for at least 3 post post op. en.wikipedia.org/wiki/Vagus...

[Hidden]

I understand the dieticians wanting him to maintain his weight without the feeding tube, but it does take a long time to achieve this, and people regularly lose a great deal of weight in the process. One of the polls on this site showed that 2 or 3 stone was not unusual, and it can often be more. Specialist Upper GI dieticians are generally a lot more helpful than generalist dieticians in this situation.

Try and avoid eating to put on weight. It won't matter very much if your son settles down at a new lighter weight as long as he takes in a reasonable level of nutrition. Weight does not equal health except in extreme cases. So 'little and often' is the key to it, to gradually train the body into its new system and its unusual habits. If he can manage to eat a little bit and cope with it, then that is OK, and it can gradually increase. But the risks and pain of trying to over-eat far outweigh the benefits of any notional weight gain. Try and avoid food with too much sugar and sweeteners in it because that can lead to 'dumping' (ie insulin spikes). Supplement with build-up drinks from the hospital if he can stand them, and change the flavour or brand to see what suits him by trial and error.

The fundus, or top part of his stomach, is where the ghrelin is made that controls the feelings of hunger, so it MAY be, depending on the details of his surgery, that he simply does not ever feel hungry any more; in which case he will have to learn to eat by the clock rather than by appetite.

This eating business is a major quality of life thing for recovering patients and it tends to assume enormous symbolic importance on the road to recovery. Try not to worry about the speed of attaining a reasonable intake by mouth; just concentrate on making a little bit of progress from one week to the next, without being unduly concerned about the odd day's setback. Like a lot of things, you cannot rush this; the body sets its own timetable regardless of how impatient for results we are. There is no standard time to worry about achieving or not achieving, but I know that won't stop you worrying. Recovery does take an awful lot longer than we ever think it will, and this is likely to be the same for your son, as it has been for so many of us.

[Suelue]

He can't afford to lose much weight as he only weighed just over 7 stone before the op. I understand that using the tube can fill him up so he doesn't feel like eating but it's still early days. After visiting today he was told he could come home tomorrow so we will see how he gets on. I'm sure he'll be more relaxed at home which will help him. Thanks again for your advice and comments.

[cherrybailey in reply to Suelue]

Try not to worry with time he will gain a bit of weight you will read no end put few pounds on after back to work list endless!

[cherrybailey]

It is so hard for you and your son I did not have the Ivor Lewis but my stomach and lower part of the oesophagus, had bad time ICU with breathing 10 days intensive care finally got out of hospital after 4 weeks. I struggled to eat the feeding tube to my stomach made me ill after a couple of weeks. Try tempting him with something he likes my mum brought in a sandwich cheese and pickle crusts cut off cut in to little 4 ate as much as I could enjoyed. Another time beans on toast the same small allowed the kitchen end of the ward. Scrape off the big plate of dinner hospital food looks little!

keep strong hard battle I would not have fought as hard as I did survived without the love and support I got from my daughters, family and friends. A hard journey but it will get better with time. xxx

[DebR]

I had an oesophagogastrectomy in October 2013 and I am still not back to how I ate before, I just learn to live with it. I was in hospital for 6 weeks and couldn't eat or drink for most of that. I couldn't have a peg fitted for some reason so I was on TPN.

When I could start eating again I started of by eating very ripe mango and skips with humus or taramasalata only in very small amounts. 1/2 Weetabix for breakfast was a struggle. I then found I could eat soft things like fish fingers, potato or mince. I did lose a lot of weight but I was lucky that I had weight to lose. Unfortunately after the chemo afterwards I went off the skips and taramasalata. I found I couldn't eat bread but could eat toast with marmite. I would say just get him not to think about eating meals but just to to eat small amounts of whatever he fancies and things will start to get better.

[Hidden in reply to DebR]

what is skips?

[kierank]

Hello Suelue

Very best wishes . I am 6 months and everything is much better now . Like everybody i struggled with what to eat in the early stages but I managed Avocado pear which is high in nutrition, also cream crackers and cheese, prawn crackers , pop corn . I found dairy products difficult . If I felt I didnt like it then I could not take it regardless of advice .Best of luck

Kieran

[Hidden in reply to kierank]

IM surprised at cream crackers,,, thought be a problem,, mmm ill make sure i get some in,

[Lucoid]

Hi Suelu. I really didn't want to eat for a long time post op and my feeding tube never worked from the outset and was removed. My dietician said eat anything you can that gives you calories at this stage. It may be junk food but it all counts.

Just takes time. Good luck