Post IL battles with food!

Hi all,

I hope this finds you well, my dad is now 8 weeks post Ivor Lewis and thankfully requires no further treatment but will be followed up v closely

I have seen several similar posts.......trying to get enough calories in and it's really getting him down. He is such a trooper and physically has recovered well in terms of getting out and about but he is still losing weight and it is really frustrating him! He has been given the all clear to come on holiday with us in 2 weeks but he still has his feeding tube in and he is scared this will still be in place for his holiday which he doesn't want

The feed is reduced at the minute but he lost MORE weight this week and he is really struggling- he is trying hard and he is also taking the build up drinks but any tips on foods that people found calorific? I have read crisps/chocolate/cheese etc am wondering about red meat? Is it worth adding cream or cheese to soups? Any tips will help, he is trying to do the little and often which works well some days but others he just doesn't fancy anything!

Lynsey x

23 Replies

  • Yes, definitely - add cream and butter, also make milk puddings and custard using full fat milk rather than skimmed or semi skimmed. I still find beef a lot harder to digest than pork or lamb but I'd say, anything that your Dad's able to eat without it causing him discomfort should help. It's good that he's getting out and about as long as he isn't trying to do too much, too soon and burning more calories than he can comfortably replace. He could start rebuilding his muscles with gentle exercise, walking is good but he shouldn't overdo it - seated exercises will help and would probably use fewer calories. I hope you all have a lovely relaxing holiday.

  • Thank you very much :) I think the change of scenery will do him good- he has been doing walks as his exercise but he has now built up quite an exercise tolerance - which is good but I think probably burning more calories than he's taking in at the minute! Think you're right- what works for others may not work for him and vice Versa just got to keep going and it will work out

    L x

  • For sure go for the highest calorie food you can- I was very lucky as I know many had reactions to dairy after their operation but i was using Jersey milk, cream a 200g bar of chocolate every day (if not more) as the chocolate melts in your mouth and whilst it may be the fattiest diet I ever was on I still had immense difficulty not losing weight. I went from around 15.5 st pre op down to almost 11 - so don't despair I am now (after almost 8 years ) back to just under 12 st and still have to work hard to maintain that weight- It will get easier and hopefully if hr can get the feeding tube out it will feel much more 'normal' for him. I eat lots of trifles, cream, chocolate, sweets,now and still add full cream to soups etc - and also sugar (25 calories a spoonful) gets added to almost everything - :)

  • Thanks ray! Prior to his op he was on the cusp of having problems with his cholesterol being too high so it's been quite hard to try and think of foods that will help with calorie intake but not push the cholesterol of the edge either!! He doesn't have the biggest sweet tooth by has been having trifle and custard pots! I think from reading others stories his weight will stable out eventually but realistically as you say it will not be like pre op and it's just about still trying to get our heads around that too!

    L x

  • Hi Lydney. Do you have the OPA book on post op eating? We added butter cream cream cheese cheese and all those sort of things to food. Making soup with proper stock and filling that up with cream and butter works too


  • We don't actually but I will look into that- the dietician is very good and given us some literature to look at, someone has also mentioned a high cal smoothie book too - thanks for taking the time to reply :)

    L x

  • I was really struggling the first few months post my total esophagectomy in early 2007 and had also had a lot of severe complications. I was looking at everything and trying to see what was high calorie and low volume but milk was out at that stage (I still can only have full fat milk) then new husband got me to go on a holiday and I started eating fish paste with mayonnaise, it helped build me up when I needed it though I can eat most things now (except broccoli, cabbage, low fat milk). Everyone is different and I do feel that a lot is trial and error at first but it does get hugely better with time,

  • Thanks aoife - think you're right it's about trial and error and what is right for him! Think he gets frustrated and at times but he is very determined and focused on his goal so that's half the battle!

    L x

  • I think that the 'little and often' rule is very important. He won't be able to cope with 'normal size' meals, but will be able to take small amounts say six or seven times a day.

    Keeping a food diary is always worthwhile.

    If he can take the creamy things, fair enough. But trying to eat to gain weight can be enormously unproductive if he suffers from 'dumping syndrome' ie insulin spikes after meals. As long as he is maintaining reasonable nutrition levels, with adequate mineral and vitamin levels, I personally think it is best not to be too concerned about weight. His body will settle down to a new normal - that might well be quite a bit lighter than he was before.

    I would try and stay away from anything too sweet or with added sugar. There can be quite a lot of sugar in cream. Try Slimfast. Which sounds utterly mad, but it does reduce the high GI diet content as if he were diabetic.

    It is quite normal not to feel hungry. Sometimes the top of the stomach, where the ghrelin is produced that sends the hunger signals to the brain, has been removed, so it is a question of eating by the clock rather than by hunger pangs.

    There are some useful downloads from the website of the Oesophageal Patients Association.

    Food might be tricky in a strange place on holiday, depending on your destination. You ight want to pack a stash of soup just in case. The OPA will send you some restaurant cards that ask for small portions, and these have been available in different languages. The OPA helpline is 0121 704 9860.

  • Thank you- I am aware lots of people are suggesting cheeses and full fat milk, butter milk etc which is great but he had problems with his cholesterol being very close to starting statins that we really want to keep a balanced diet too so as not to push things over the edge! On the whole he is eating quite healthily and although has good days and bad days we are learning that on the good days to just go with it and he will eat often and what he takes 'notions for' encourage him to go with! Someone has mentioned a high cal smoothie book, so full of fruits and veg too so going to look into that and possibly give that a go!

    L x

  • I know others may disagree but personally I would concentrate on nutritional value rather than calorific. Chemo kills off so many nutrients I would be thinking about protein, vitamins and minerals. Eggs are great for nutrition but also calorific, maybe things like oily fish and stews or things like Bolognese sauce (get plenty of tomatoes, red peppers it too) that can be blended. Weight gain may or may not happen but as long as your Dad is healthy and has energy that's the main thing. I know the weight loss is awful, my Dad is a third of the way through post op chemo and is painfully thin but high fat foods make him feel worse as they cause reflux he is eating healthily and still has energy for walks with me and my dogs.

  • Thanks natchap- I agree with you! Dad previously had high cholesterol before the op and while we want him to put on a bit of weight I very much want it to happen sensibly! As the surgeon said to him 'all the pipes are working' so it will take time and effort but will all stablise out in the end!

    He's generally such a positive person but this does get him quite down at times, he is eating and while it may not be the portions he is used too he has the energy to be out walking daily and is really looking forward to his hols! Hope you and you're family are doing okay!

    L x

  • I think it's just a waiting game, as it has been right from the start unfortunately. I'm hoping that once my Dad's chemo finishes he will start and gain weight again, I know he may never get back to the weight he used to be but hopefully enough so he doesn't look ill!! My Dad is also a positive person but this bloody illness and the awful treatment it requires is enough to get anybody down :-( My Dad like yours is also busy planning holidays which is helping keep his spirits up. Hopefully we will all be able to celebrate a fresh and healthy start this coming New Years Eve ;-) xx

  • I certainly hope so! Keen to put 2017 behind us and look forward and sure you are too!

    It's so hard......and so draining and we're all only human but thankfully we've all got each other at home and have to say the support and the chat from this page has gone a long way to help!

    L x

  • It is unbelievable how this illness completely takes over your lives ....know idea where this year has gone ....or what we did before Cancer took over ! Like you say I just want my hubby to be able to gain even some of the weight back ...which I'm sure he will in time , he's only 6 weeks post op ....but beforehand he didn't look ill ...but now with the weight loss, he does.

    We've had two solid years of this dreadful disease , one ending sadly , 2016 and 2017 ......not again .....roll on 2018 😒

  • Somebody posted a while ago about a little book of weight gain smoothies. We've found those very successful.

    I tend to agree with Nat-we've tried to get the calories in using protein rather than fat. I usually give my husband (about 6 weeks post-op) a full portion of meat or fish and reduce veg . He takes a multivitamin and probably always will.

  • Hi! Yes I saw that when I did more of a search through and have sent him the link! It looks good- one of the smoothies has 2000 cals in it so fingers crossed!

    L x

  • i'm also 8 weeks post op from the ivor Lewis operation.I'm finding it hard to have 6/7 small meals but have maintained my weight for the last 2 weeks.Eating yoghurts and more cheese and eggs than i use to and trying not to worry about my weight. problem with me is worrying about what not to eat that will upset me, found out the hard way with some fish at Whitby last week. Holiday will do you the World of good and hopefully take your mind off things.

  • Aw thank you :) I think it will be a good change of scenery for him and a nice change of pace! I think he can get a bit bogged down with what weight he is so hoping the holiday will be a distraction and not focus on it too much :)

    L x

  • I just watched a programme on super foods and thought of you immediately as they say that peanut butter is very high in calories and protein and only has good fat in it, hope this is an option, wouldn't have been for me because I hate peanut butter! Anyway, just a thought :)

  • I think you guys watched the same programme 😊 When I called yesterday he was in Sainsbury's looking for 'whole earth organic peanut butter'!! Must give it a watch myself thanks ray! Hope you're good

    L x

  • About three or four months post op I found I could start to eat nuts and nut butters. This had made a huge difference. It's high in calories but without the problems of cheese and high fat dairy which still makes me feel sick. I am eighteen months post op. I can keep a small supply of nuts and dried fruit with me for emergency snacks or instead of cakes etc if out and about for the day. They don't set of the dumping syndrome symptoms that high sugar or other high fats do.

    Although I have tried high fat foods to boost my weight I find that this backfires as I find them hard to digest. My weight is best if I eat small ordinary meals through the day. With some protein each time.

    It does time to work out what works best for you. We all seem to be a bit different with some things in common. I'm constantly trying to think of new ideas which is hard when I don't feel hungry! For example. The other week I suddenly realised that fish fingers come in tiny protein packed portions. So now now they are in the freezer for when I need an easy protein packed snack!

    My weight is low but has been stable for a year and I can pretty well do as much as ever

    So in short be a bit creative, work out what works out best for you and very good luck!

  • Thanks so much for this :) Dad is the same with the high saturated fats- makes him feel sick but then we are told to try these things to get the calories in! He is about 3 months post op so still v early days!

    Thank you for your reply! Just to hear everyone’s experiences is helpful- seems everyone is different and it’s about finding out what works for the individual!! Take care of yourself!

    L x

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