Staying healthy after a total gastrectomy

Hi, I had pain but was told it was bruising on the inside after such a big operation… and not to over do it with moving around and not to do any bending or lifting… I also got a stuck feeling around my breast bone if I over ate, as I never knew I had eaten too much… 

Food wise I ate to begin with, mince meat in very wet sauces with rice, potatoes or chopped up pasta… lots of vegetable soup, rice pudding, cottage cheese, porridge etc, anything in high protein. I couldn’t tolerate protein shakes as they went through me. I did loose 3 stone in weight, which I’ve stabilised the same weight now since my last chemo last august. 

Take care 

Michele 

Hi Michele,

Many thanks for your reply, there are some great ideas there. What was your portion size like and has it increased over time?

I haven’t tried a protein shake yet but the ensures and ice cream don’t appear to agree with me I must admit that I hope that one day I’ll just be able to eat a normal sandwich / wrap again.

well done on stabilising your weight. I hope everything is going well for you x

My husband was eating most foods after about a month, small portions and often, snack… quavers, boiled eggs, baby bell cheese, jelly made with milk, tin fruit, Greek yogurt, dark chocolate, peanut butter by the spoon, anything high protein, full fat milk with added milk powder. He has a banana before going to bed, he thinks it may stop acid! He can eat sandwiches but mostly he leaves the crust, even has wedges so I’d say he could eat anything. 13 weeks since having his stomach out. He hasn’t had any pain though and sorry to hear you have. Good luck xx

Hi, portion size was very small to begin with e.g a shop bought lasagne for one person I would have half one day and half the next… a muller rice pudding was very filling too… I snacked often throughly the day…The portions increased slowly over many months… sandwiches and wraps, I only managed after 7/8 months after my operation but only with a wet filling… I find sour dough bread best especially toasted, I also find bread very filling still and need to chew it thoroughly or it gets stuck… pitta breads are quite easy too, better than wraps… Ensure shakes I couldn’t get on with… Fruit I struggled with, so I bought tinned fruit in juice and was soft to eat… 

I go out for meals and have a starter and another starter for a main or a small portion meal… the other week I had 2 courses with a glass of wine… my second course I just ate the fish (protein) and a bit of veg… I’ve learnt now not to over eat and to just stop as other wise it gets to uncomfortable for about an hour if I’ve over eaten… let me know if you have any other questions… 

Take care

Michele 

Hi Cestrian, well done for being out the other side of the op !

Yes, that was normal for me too with some back pain after eating … I remember eating a jacket potato in hospital after surgery before being discharged and was finding my feet with how much I could / couldn’t eat and ended up pacing around the room for about an hour holding my back, in pain and discomfort from eating ! In time all these things subside and you’ll find your stride and settle into it all and it sounds like you’re doing brilliantly. Like Michelle says, at dinner time try and focus your attention on the proteins first as that’s the most important thing for us to get in and I’ll always prioritise that and then veg over other filler stuff like bread (but I still eat it, as it tastes good!) that doesn’t really bring any nutrition to the table for us ! 

Try not to worry or overthink it all though, I take a multi vitamin in the morning with my coffee, and my B12 shot every 2ish months and in my bloods and levels checks at the Royal Marsden all my kidney, liver function, blood levels, protein etc etc come back in normal ranges so my body has adapted and diet wise is getting the nutrients etc it needs to function normally.

Hope it helps and have a great rest of the day ahead !

Hi Sue,

Thanks for your reply, there are some great ideas that I hadn’t thought of. From the sounds of things your husband is doing really well and it’s reassuring to hear that he can now enjoy a sandwich. It’s funny how you take such simple things for granted. I had peanut butter with banana for breakfast, I never liked peanut butter before I had my daughter but peanut butter, banana porridge became my go to breakfast after tasting hers one morning  

Hi Michele,

 I do think portion size is something that I need to get on top of and I do need to snack more during the day. I think I’m just struggling to ensure I get the nutrients and water intake needed without over doing it. I have a 1 year old so like to get out and about but before I know it I’ve gone 4 hours without eating anything so I definitely need to plan ahead.

having a starter for a main is a great idea, I look forward to getting to that stage. It sounds like you’re doing really well! 

Thank you, I’m sure I’ll have more questions as time goes on  xx

Hi Red10

Thank you, I have to admit that I was pleasantly surprised how quickly I recovered from the operation.

The back pain sounds exactly the same. It came out of nowhere, I also felt discomfort in my lower abdomen, part of me wondered if I was going into labour again I’m glad to hear that it subsides, I guess I’m just keen to get back to some kind of normality as quickly as possible so I have to learn to be patient I think I’ve mentioned before that I don’t smoke or drink but I love food and normally have an active lifestyle all so I can stay fit and eat what I like

it’s really reassuring to see people like yourself are able to adapt well and still maintain normal liver, kidney functions as this is something that I have been worried about.

No worries at all Cestrian, anything else feel free to ask !

One other piece of advice I’d give is to listen to your body regards supplements … especially your B12 shot.

The GP gives you the B12 shot as standard every 12 weeks / 3 months and it’s amazing, I walk out of there feeling like I’ve been plugged into the mains socket, haha !

You’ll know when it’s due without having to check your calendar as you’ll start getting tired, lethargic and a bit cranky !

The interesting thing for me is that the standard they give is every 3 months, however by coincidence my blood checks at the Royal Marsden coincided with my B12 shot.

So, I had my B12 shot at the GP and 2 days later had my check up at the Royal Marsden and my B12 level was > 1,000 ! I then had another check 3 weeks later for something else and it had dropped quite a bit, and with my surgeon we were able to see and work out individual to me how quickly my body was processing and using it and looked like I need it closer to 2-2.5 months rather than 3 months.

If you start feeling tired, lethargic and a bit cranky it’s probably that you’re due your B12 so rather than really struggling and soldiering to hit the 3 month wait, my advice is to call your GP and get booked in earlier for it as the 3 months seems like a broad standard but as always, individual circumstances are different.

Also, they’ve probably told you but if you’ve had a total gastrectomy you cannot get B12 via diet or supplements - we have to have it via a jab so oraL sprays and supplements are a waste for us !

Hope that helps and makes sense.

Thanks for the B 12 info Red10, Martin has to wait till 9th May for his, he’s been very tired for about 2 weeks so will ask about having it a bit earlier when he goes for his jab. Also Red10 do you get bile reflex, he sometimes wakes up with an awful taste and coughs a lot with it with gunk in his throat, he does have a wedge pillow but always ends up more or less flat. Apart from that he’s doing fine. He has his 3 months with surgeon 15 May. 
He also starts radiotherapy soon got his Lymphona.