Ivor Lewis Diet weight gain

[Carisbrooke-24]

Hello , haven’t written on here for a while but would like some advice . Now my husband is now 9 months post op from having an Ivor Lewis and all successful .Down side is his weight from 12st4lbs to 9st 6 lbs not gaining weight at all .He’s taking Creon 12 aday and eating small nutritious meals and snacking between meals no weight gain .Is there any advice on how we can get his weight back up a little .He’s looking rather skeletal at the moment .

[Hidden]

Hi, I am no expert and like most here have lost a lot of weight but in my case I had excess in the first place so I wasn't too concerned (a staggering 119 kilos after surgery). I'm assuming he's seen a nutritionist, I had a follow up with mine from the hospital and took a log of my eating habits which she then told me what I was doing right and what I could improve on. I graze all day in fact I am a conveyer belt of eating and if something looks good I eat it, but also I do make sure I get my quota of protein, carbs, fat (as we still need some fat in our diet) and calories so I start the day with a bowl of fruit and fibre, then granary bread with a generous helping of peanut butter and often finish that off with coffee and a few squares of dark chocolate. an hour to 90 minutes later I have some soup with a piece of granary bread again. Later I'll eat lunch with the family 'whatever they're having but smaller portions' although I have given up red meat and pork so if they're having bacon I'll have something else. An hour or so later I'll be raiding the fridge again, maybe have some desert like trifle or something with ice cream and this go's on all throughout the day, even after dinner with the family I'll start grazing as soon as my stomach will let me, until my cut off point so I don't get any problems sleeping (which I manage to sleep laying down) My weight is down to 66 kilos (about 10 .6 stone) but it's been there for about a year and at 65 that's a good weight to be heading in to my golden years. Obviously I wouldn't want to lose any more now and I think that's really the way to look at your husbands weight not so much putting it back on but not losing any more and unfortunately he may look odd to you not because he's skinny but the speed he's shed the weight unfortunately leaves us looking a bit of a weird shape, my wife is still having trouble getting used to how I look as I have retained loose skin from being overweight and dropping the weight so quickly. Anyway I hope this gives you some ideas but we are all different and although this works for me really a consultation with a nutritionist would be of greater help. Martin (7 years post op)

[hunsdon]

Hi I am glad to hear your husband is doing well but it so early days yet , little and often is a what we all adear to his will gain weight back very slowly but not for a while yet, enjoy nice walks to gain strength back into the body and a clear mind for the time ahead, I wish you lots of health and happiness.

[Brett77]

We’ve all been there. I focused heavily on protein and that helped a little but introducing good fats is what made a big difference for me. I regained all my old weight and then with a greater focus on bulk weight lifting (higher weight, short reps) I managed to eventually add a couple of kilos.

A Dietition who specialises in oncology guided me on the food side. I recommend speaking to such a person. The lady I use in Australia does all of her sessions over zoom. PM if you want her details.

Good luck.

[Notknowmuch in reply to Brett77]

Hi Brett, your post encourages me to have hope in helping my husband through his recovery journey.

He has been losing weight since surgery (was 89kg and now 16 mths post IL op weighs 68kg) and has been eating high calorie and protein food which now resulted in his good and bad cholesterol counts to be too high.

We will be consulting a dietitian to advise how to manage his diet to help him not lose further weight as well as to stabalise his cholesterol levels.

We are in Melbourne, could you please provide me the details of your dietitian?

Thank you and take care.

[Brett77 in reply to Notknowmuch]

I’ll PM you

[Cosmobabe]

Hi there! I am glad to hear that all went well with the op etc. I had surgery and it took over 2 years for my weight to start increasing. You will get there - it will just be slow. With the lockdown as I have not been so quite mobile etc it has gone up even more.

So don't worry about it. At the moment its probably all trial and error in the food front. I am roughly 3 years post op and I still have issues around food and can still only tolerate small amounts eg. sometimes half a toast will be enough.

It is early days.

Regards

Cosmobabe

[Molly14]

Hi - I’m afraid some people find it very hard to gain weight after Ivor Lewis - I am 6yrs on and still can’t get above 7 stone at 55yrs - I used to worry so much but that made things worse - my consultants and doctors aren’t worried so I decided to just accept it and hope that one day I gain weight - I am like a walking skeleton but dress in layers and I’m lucky I look well enough and can enjoy my hobbies, walking, gardening, riding.All the best to your husband, it’s still very early days for him x

[Cavalier3]

Hello.. I’m 7 months post IL too and I’ve managed to keep my weight stable. I was 64 kilos (I’m 5ft7) before diagnosis. During treatment I managed to get my weight up to 68 kilos and I’m not 60kilos post op. I lost 7 kilos fairly quickly and my weight has been stable for the last 6 months. Not gained but not lost. My dietician told me to enrich everything with cheese, butter, cream.. I find cream a bit difficult. I eat at least every 2 hours. Frequency is key I think enrich as much as possible. Mash potato with plenty butter is my favourite.. I do eat healthy as part of my grazing so I will eat yoghurt and fruit too. I’ve never felt hungry since my surgery so it’s easy to forget. It’s also very early days for us so if he’s maintaining his current weight then hopefully the weight gain will come. Xxx

[Carisbrooke-24 in reply to Cavalier3]

Thanks for your reply good to here all this advice it’s encouraging. Chris

[liz_crisp]

Hi I'm 11 years on it was 5 years before I really gained weight. It is a slow process, but grazing all day and eating whatever you fancy so it doesn't become a chore to eat helps. I ate lots of proper all full fat , yoghurt, cheese , butter, cream, advacados, mayonnaise, and home bakes. Didn't worry about cholesterol and how healthy it was just calories and used chocolate or hiGI foods if I needed to use energy. Ie housework, Swiming, going for a walk, gardening, so I didn't use up precious fat reserves. He is doing well if he keeps it stable. As the gut relearns how to function it does improve but it takes time for it to work. In most cases the vagus nerve has been cut And needs to find new pathways. It will come eventually xx

[Carisbrooke-24 in reply to liz_crisp]

Thank you .

[Mauser1905]

OPA diet advice as below:

opa.org.uk/opa-swallowing-n...

Specialist advice from Dietician

opa.org.uk/edit/files/nutri...

9 months is way too early to present New Normal.

Objective is to achieve New Normal weight which is stabilised and persistently sustained. Aiming to regain pre-surgery weight (if above normal BMI to begin with) and can be counter productive. Exceptionally few patients have put on additional weight above their pre-surgery levels. Majority lose weight post surgery and manage to sustain the New Normal weight.

Experimenting without understanding the dumping syndrome, frequent grazing collateral damage such as blood glucose imbalance can cause more hardship for the patient and the carer.

Whatever has been working, please sustain that and any new additions or changes suggest keeping to singular basis to weed out trouble triggers.

[fastoldguy]

Hi. I had the same problem as most of us who went through this. I was lean before the operation, always have been, so not much to lose before getting to a danger point. I am about 6' tall and weighed 165lbs before the procedure, then dropped to 145 lbs as a low point about 2 months afterwards when I got off the feeding tube. Lost all my muscle mass, was basically bones and skin, and I am a very active person. I got up to the low 150's eating/drinking rich foods of protein and fat which was still too low and I wasn't very strong. What made the biggest difference to me was switching to whey protein and creatine as a protein drink each day. I gained muscle mass and strength allowing me to cycle 3-4 times a week for 1-1/2 hrs and sustain my weight. I feel much healthier and can do most of the things I used to do. My weight hovers in the upper 150's and would probably go a little higher if I did not ride so much, but that is my passion. I tried plant protein initially, but it was not nearly as effective with muscle gain which was essential for me to increase. Hope this helps and keep trying.

[docLocke]

Like other respondents here, I’d urge patience. The combo of chemo/radiation/surgery is a fairly massive body insult, affects all systems including those interconnected sensors and feedback items that determine “normal” for a body. Takes months for all those items to rearrange, reconnect.

I’d also suggest your guy engage in some form of modest regular exercise. Not heavy weights or strenuous reps, just enough to move blood and breath a bit. Like walking, for example.

[Carisbrooke-24 in reply to docLocke]

Thank you for your helpful reply . Chrid

[speakman]

I am now some 10.5 years post Ivor Lewis and throughout, have had real difficulty with eating. I often say to people that if I could live without food, I would do so. I can't now recall what I weighed in advance of my surgery but with a height of 5 feet 9 inches, I now weigh in at some 11 stones, which was what I weighed when I left school at age 18. I am 77 years of age and reasonably active. We have a 6 year old Labrador and walk him for 1.5 hours per day. I also do modest weights.

On the food front, my breakfast consists of bran flakes with full fat milk. Every mid-morning, I then have a full fat yogurt and lunch consists of one slice of toasted brown bread with butter and cheese, accompanied by a banana, 8 dates or so and then, depending on the season, a nectarine/tinned pineapple. I have a glass of fresh fruit juice. Mid afternoon, I have a mug of hot chocolate made with full fat milk and the evening meal can be anything from home made pea and ham soup, to sandwiches, to fish/fried potatoes/green beans, or egg and bacon but always a pretty small portion. These are followed by either fresh strawberries and double cream in the summer or tinned fruit in the winter, again with double cream. I drink either fresh orange or grape juice with the evening meal. That uninspiring diet just about keeps my weight steady at 11 stones or so, though to tell the truth, I rarely weigh myself, since it gives me something of a downer if I have lost weight. By and large, I can tell from my clothes whether or not my weight is reasonably steady and it is, I think. The only food which gives me modest enjoyment is sweet food and I should add that on 4 nights per week, I get through 2 bottles of white wine i.e. 2 bottles of wine a week. Quite often, during mid-evening, I have a decent sized portion of ice cream and a handful or so of unsalted cashew nuts.

And there it is. Not too inspiring but it keeps me going. However, gone are the days and never to return, when you felt as though you could eat two fish and chip suppers and when it was very pleasant to eat out at decent restaurants. On the other hand, I am still around to tell the tale and long may it continue. May you all be so blessed.

Kind wishes,

Speakman.

[FKM100]

After my IL in June last year, I now have the opposite problem and have started regaining more weight than I want (I was very heavy before I got cancer and don't want to go back there again).

Although there are no quick-fix solutions, one suggestion is to try and find at least one high-calorie, high-fat and protein rich food that your husband really likes and that his digestion will tolerate well, without dumping or reflux. For some people it's peanut butter; for others it's ice cream or chocolate - everyone is different.

For me, it turned out to be double cream Greek yogurt with a bit of honey. I can happily eat a couple of good-sized bowls every day and, best of all, it is so digestible that I can even eat it quite late in the evening without having to worry about reflux when I sleep. This is what turned the corner for me, although I now have to limit myself to keep my weight down.

Good luck and best wishes.

[Carisbrooke-24 in reply to FKM100]

Thank you for your reply such a learning curve . Peanut butter seems to be my husband favourite at the moment on toast . He can tolerate this with out reflux and it’s very nutritious as well . Hope you keep your weight down and keep well .

[FKM100 in reply to Carisbrooke-24]

Thank you - and yes, it is quite a steep learning curve. No only that, but nothing is static. Your digestive system keeps on changing for quite a while after the op. Which is encouraging, because what doesn't work so well right now may work a lot better in a couple of months' time - persistence can pay off. And "stomach" capacity definitely improves with time. Hang in there.