Hello!

Hi Browndog, hope you’re well.

I was sent home post op from The Royal Marsden without a feeding tube too, after a total gastrectomy last August.

Its been trial and error for me too, but what my surgeon said to me was that if my eating was to get back to near normal, I’d need to push myself.

This led to some pretty uncomfortable experiences and some times of being sick after eating from pushing it too much and eating more than I was ready for.

But, nearly a year down the line it has helped. I can go to Pizza Express now and eat a full pizza (no starter) albeit slower than everyone else at the table, but wash it down with a few colas and half a brownie split with the wife for desert.

Or tonight, I managed a whole chicken tikka balti from the local curry house and Bombay potato with a couple of glasses of cola.

My surgeon said the cola is good as helps add calories to the meals after losing a lot of weight (around 15kgs on the post op chemo that floored me!) as well as telling me to eat Hagen Daas in the middle of the night if I woke up for a wee, as it packs some more calories on too.

So, keep pushing yourself and you will get better with it and you will be able to eat a lot more over time.

I don’t really get hungry either. I think after having my whole stomach removed, it isn’t there to rumble anymore and so I eat by the clock more nowadays or when my Wife reminds me as I’m looking a bit faint !

Can quite easily have my morning latte at 7am and then get to 2pm and realise I forgot to eat anything and only realise because I start feeling queasy !

Hope it helps,

Red.

Hi Red10, thank you for your advice, do you remember when you really started to push yourself to eat, (how many weeks after op)?  I went to see the team yesterday and they also said I’ve got to eat every 2 hours even though I’m not hungry. They said things should settle down after 3 months.  Good to hear you ate a whole pizza and curry, did you feel ok after this or did some of it come back up? 

No worries at all Browndog, happy to help.

My surgery was the last week of August and I really started pushing myself at Xmas, so about 3-4 months post op.

To start with, when I started really pushing myself some would come back up and I’d get sick but as things have expanded over time, I can eat the whole pizza or curry and sip away at the cola throughout the meal without any of it coming back up anymore.

For context, my surgeon said when he removed my stomach and connected my oesophagus to my small intestine, my pipes were the size of a tennis racquet grip, and now through pushing it and expanding things, on my last endoscopy he said it’s increased to the size of an inside trouser leg now which is why I’m able to eat almost normally again.

Anything else, let me know !

Stalis

I hope you don't mind me bothering you again? My husband is doing well in most respects (although not really gained any weight) but he is eating little and often, back playing table tennis and walking football and doing some walking. However he has hit a wall of depression and his main anxiety is that he dreads going out for meals/drinks with friends  (which we do very rarely now) and as that was a big thing he enjoyed he is in a spiral of depression which I am finding it difficult to tackle.  As you are further ahead than us I wonder how things are going eating-wise - does he have more of an appetite now? Does he enjoy earing again - my husband says he dreads meals....As a reminder we are 5 months post op. I'm trying to find things to cheer him/goals to aim for etc... hope you don't mind me asking. Liz00 

Hi,

I haven't previously replied on this thread, but I thought my experiences might help you.

My wife had Ivor Lewis surgery in February 2020 - so we are now more than 2 and a half years post up. My wife has been a brilliant patient, and has been religious in going walking every day. I think keeping as active as possible is vital - both for physical as well as mental health.

Specifically regarding eating: we have just had to feel our way through that - just as you will be doing - but I would say that after about six months my wife was eating more-or-less the same kind of food as we've always eaten (we're mainly vegetarians), just in smaller quantities. She does now have a good appetite; she does enjoy eating; and she enjoys going out to eat with friends.

However, she can't eat some things that were okay before. Bread for some reason causes her problems. (We think the problem might be the specific yeast used in certain processed bread.) And too much sugar is definitely bad.

The most troublesome aspect in the early days was diarrhoea: it could just come on unexpectedly and suddenly, particularly in the mornings. When you're away from your home, that can obviously be a problem - and the thought of the possibility of it might lead you into not wanting to go out at all. But, thankfully, that has improved over time.

The surgery your husband has had is major surgery, and everybody who has it will recover at their own individual rates. But I hope my anecdotes above give you some hope! My major recommendation is to encourage your husband to keep active, and to be aware that things will continue to improve over time.

Good luck, and best wishes.

Thank you so much. Very kind of you to respond. That gives me some more hope. I just want him to get an appetite back and to enjoy eating again. Good luck to both you and your wife, pleased she is doing well. 

Hi not at all my husband is 7 months from his operation then another 4 lots of chemotherapy been really hard but lots of different emotions going on we have just returned from turkey he has just started to taste his food and enjoy it I think depression is a normal part of everything keep strong x

HI Liz

Just reading through your posts my fella was the same he lost about 3+ stone he had the op in May, his eating is progressing a lot but he used to train in the gym daily he was very muscly, 5 months on hes back at the gym trying to gain muscle again hes a lot weaker than before however still going and eating several times a day, the dietician gave him tablets called CREON, they hold onto the fat/nutrition from the food and help gain weight, he has put on over a stone and a half tho has to take 4 everytime he eats, it could be something you could ask about to see if it would help.

I find the low moods hard to deal with also but on the more positive days my fella says hes lucky to still be here as some of the people he met during chemo are now no longer here so its more a case of look towards the positives and everything will come back slowly, this time next year hopefully they will all be a lot better x