My partner is 16 months post Ivor Lewis. Whilst he is doing well we are a little worried about his weight.
How long was it after your ops did you notice you stopped losing weight?
He is around the 70kg mark and can lose 1 to 2 kg every now and then if he is ill or has a problem.
So just interested to hear your experiences.
Maybe eating more healthy fats and proteins would help him keep and gain weight. eggs are solid choice daily and adding protein powder or extra butter, sour cream etc
Hi I'm 9 years post op now and it's only in the last two years I have stopped loosing weight every time I got a cold or felt ill, stomach upsets were the worst they took a while to get back on track after. I still don't get hungry and so if I'm busy often forget to eat till I realise I'm absolutely exhausted, and discover that I have been drinking tea all day for the past two days and not much else!
If I find I'm losing more than I want to now I do resort to adding butter and cream to foods I eat again, I use butter to cook with and add cheese to lots of things especially vegetables, I snack or graze all day rather than eat regular meals as I can have lots of high calorie snacks rather than one rich meal. Cheese and biscuits. With a few grapes or an appIe, I make sauces with cream, or Philadelphia, sometimes a rich gravy with butter, to go with my meals, adding the odd drop of alcohol to the sauces gives them a nice flavour and uses up left over wine, I keep frozen sauce in the freezer in ice cube trays or the baby food trays so I can just defrost it rather than make it up every time. I eat nothing low fat and where possibile. If you are losing it steadily go to the docs or your CNS, I had creon at one point which helped the body absorb fat, I took it for a while when I ate a meal with fat in, you have to follow the directions for taking it closely as it has to be with the meal not following it through the digestive system. I'm now looking at having to watch my weight for the first time since the op. I have been through many changes in how my gut has functioned since the op, getting dumping on and off and I still do especially when I change my routine. Tolerating certain foods and then suddenly finding they cause problems but others I had given up with were now fine. I still find doughnuts or really doughy food and some fried foods give me problems but friends who have had the same op have no problems with those but can't do steak or eggs. We are all different and it's lots of trial and error.
Good luck and well done
Cheers Lizzy
Hi. I am 1 year post op. I had an extra course of chemo radiation after the second FLOT. Then I had a very stressful time this January when a secondary was found in the brain. Each time I lost quite a few KG. But I am putting weight back on now and I maintain and increase my weight with high calorie shakes. I start most mornings with a protein shake, about 6 to 7am only 250 cals but 50g protein. Then about 930 I make a high calorie shake in the liquidiser with freshly made fruit and carrot juice 200
Cals e.g two apples two oranges a carrot and a clemantine, two tablespoons Olive oil 240
Cals, 2 oz cashews 330 cals, banana 90 cals or avocado 250 cals, full fat Greek yogurt 100 g 150 cals and I may add ice cream, other nuts. About 1200 calories
And I find it goes down well in the morning and is full of great nutrients and vitamins.
Look up high calorie shakes and you will find lots of recipes. But always have a protein shake mix (I use metapure) to add the 50g of protein each day.
Good luck Paul.
Thirteen months after Ivor Lewis op I have just started to put on a little weight again. I was unable to have chemo or radium treatment due to blood clotting issues so life has been a lot easier for me, luckily still all clear. I spend most of the day grazing, eating mostly at breakfast time, I eat little in the evening as this avoids night time digestion problems. As my throat has healed I can now swallow more food but I have never tried to rush things, I was overweight to begin with. I now have to cut back a bit as I don't want to put any more weight on. Had a late meal yesterday - birthday bash - and I did suffer some acid reflux during the night, so you can never let up.
Joanne:
As you can gather from the variety of replies it’s a problem with lots of solutions, from eggs and steak to protein shakes, with lots of fruit and veggies in between. My suggestion: in addition to eat often and high protein, exercise. Only way to add muscle mass back is to stress what you got, and ideally on a schedule to balance major muscle groups. Doesn’t matter whether it’s barbells or body-weight routines so long as it’s reasonable and regular. To that add patience: it’s a whole helluva lot easier (and quicker) for one’s body to chew through that lean muscle fiber to keep the machine running than it is to build it back up. I’m one year post Ivor Lewis following a 9-month FLOT-4 protocol. The 2 weeks of nothing by mouth/clear liquids after surgery took 33 lbs of muscle; so far, regained 5 and counting. How great your partner has a cheerleader—as important as protein.
Hi lm 10 years post op . Things really don't change,was over weight before op,I now say just as well,as a very small person now, and just cannot put weight on, don't know what I would have looked like if small before op . Had very nasty bug a few months ago, which went on and on and out come was another 5 lbs lost . Because food doesn't interest me or others,who have had the same op,or never hungry ,I cannot get even some of that 5 lb back on Doc now has put me in touch with a nutritionist (not a dietian) as didn't help me at all.So remember food little and often ,if you can And onwards and upwards Good Luck
Hello Joanne, I weighed 76kg immediately before my oesophagectomy. Afterwards, I lost weight slowly but steadily for almost two years, falling to 60kg. Nine years later, I am now 63kg. I eat well, take lots of exercise and am generally fit and healthy, but no matter what I do I never put on any weight. It's something I've learned to live with.
If your partner is healthy and getting enough nutrition, then my advice is don't worry about it.
Thank you all for your experiences. It is hard to see him go through this and we have found you all on here are amazing at giving advise.
We have gained more info from reading your posts than we got from the 'experts'
My weight didn't start turning till about 6 months after op. Then it went up gradualy to 7st 6oz where it has stayed. Gp says it's a bit low but not to worry if it stays there and doesn't go down. Make everything high protein and high calorie was the advice I was given plus cheese with everything!
Hi there,
I always read these replies with envy, I can't help feeling envious when I read about the weight of people post Ivor Lewis.
I am now three and a half years post operation, and before my weight was at 67 Kg. I wasn't too bad initially post operative but after about six months my weight had dropped to 43 - 45 Kg and no matter what I try that is where it stays. I know it sounds horrid and wimpish, but I still don't want to look at my emaciated body in the mirror.
I have many different nutritious additives to my food, some prescribed, ensure plus and calogen daily. Others on recommendation, Soy protein, Hemp protein deactivated yeast and I also add flaxseed, Tahini and Chia. I also take additives in tablet form as prescribed.
I eat at least twice as much as my wife, have been a vegetarian for thirty plus years and I am now vegan because I have suffered seriously with dumping problems ever since the op. I still can't eat any dairy or bread, pastry or cereal based foods. In truth my diet is an absolute nightmare.
Post operation I suffered from aspiration of food up into my lungs whilst I slept and this has unfortunately damaged my lungs and reduced their capacity. I was keeping pretty fit before my operation and am back to doing regular daily exercise which does help with my overall fitness, but in truth I am only a shadow of the man I was before I contracted cancer.
I crave the sort of food and cheeses I use to eat, and the various breads, but I know that if I indulge even slightly I will suffer, but I do still try every now and then to see if I can get away with a small slice of pizza or half a slice of cheese on toast! To no avail as I suffer every time.
It really is a lottery how you are going to get on after such an operation, but we always have to consider what the alternative would have been and so I am lucky to be still here, but in truth it is difficult to keep your chin up sometimes.
Good Luck with your recovery.
Thanks for your reply.
My partner too finds it difficult to see himself. And no matter what we try the weight still comes off.
It is true, we are lucky he is still here but getting through each day is a struggle at times.
Yes I agree wholeheartedly, but I expect you find like me that some days are better than others and company can make a big difference. The most important thing is to try your best to laugh as much as you can (without pain) and keep your chin up.
Just another quick bit of info, if you can exercise it's a good idea to try to maintain your fitness and it slows down the weight loss as apparently muscle is dense and heavy and takes a while to renew. Don't forget that what has happened to your body is extreme surgery and If you don't do much exercise you will lose weight, I found this out the hard way. Best wishes to your partner.
Good Luck
Richard
Gaining weight post op total gastrectomy
