Staying healthy after a total gastrectomy

The guy who was mentoring me had this happen to him (he had an oesphagectomy rather than our total gastrectomy) and was lactose intolerant post surgery …. I rather foolishly have just taken the bull in a china shop approach to everything and just pushed on through pain in the early days, being sick after eating too much, wind, diaorrea and even visited Nandos in Fulham by the Royal Marsden on 9th Sept ‘21 after my check up (my surgery was 15 days prior on 26th Aug ‘21) for a 1/4 chicken breast, peri chips and refill cola ! I didn’t eat it all, chewed a lot and took about an hour eating what I could of it … but I’ve just always gone gung ho at it … which sometimes I reap the consequences of ! A few months ago I was feeling a bit faint and needed a sugar hit, and Jelly Tots were my go to snack and I managed to vaporise a whole 150g bag of them in about 15-20 mins. Well, what ensued afterwards wasn’t great … I spent about an hour and a half pacing around my house in immense pain feeling like I was going into labour with child birth ! At my next checkup my surgeon explained it would’ve all come together into one big guava gum ball in my small intestine and then been quite huge in size for my tubes which is where the labour pains and giving birth sensations came from - it was a terrible experience but I’m learning haha !

The path to success is never a straight line, but we can get back to normality and lead good and happy lives the other side of this ! 

I guess the short answer to my ramble is, just because you’re struggling with dairy now … don’t worry too much as you’ll be able to work on it, push through and get back to your normal soon. I’d be lost without my morning latte as soon as I rise each morning, plonk my two feet on the ground and count my blessings that I’m still here !

Hi Jac,

I agree that it’s all trial and error. It’s just a little frustrating when one day I’m fine with something and the next the same thing is causing me discomfort. It must be something I’m doing.
I have alot to be thankful for though so hopefully it’s just temporary whilst the new plumbing settles down  x

Hi Michele 

I spoke with the dietitian today and they have said similar to yourself. Apparently the ensures are lactose free though so I have no idea why they’re having a negative impact. I also find that one day  I’m fine with an item and then the next day the same item causes me discomfort. Hopefully they’re just some teething problems x

Hi, I didn’t realise they were lactose free… the dietician did mention that the sugar in them were maybe to high for me too. Yes it will be teething problems to begin with, write a diary of what you’ve eaten that has triggered you, then reintroduce an item at a time and circle it in the diary if it’s flared up again. Hope this might help to narrow it down what is aggravating you. 
Take care 

Michele 

Hi Red 10,

I admire your approach but I have no idea how you’ve managed it. I think I get a little worried at the moment that if I eat the wrong thing then I won’t be able to look after my little girl whilst my partner is at work…I to have spent some time pacing wondering whether another child is on the way although I must admit that I love the idea of a Nando’s at this moment in time.

I must admit that your message made me chuckle. There have been many journeys where I have devoured a whole bag of jelly tots without thinking much of it (other than hiding the packet from my partner so he is unaware that I didn’t share ) so I’m happy that you learnt the lesson on my behalf there.

thank you, I’m hoping that it’s just a settling period. I had an oat milk latte yesterday which was nice and yes I still have so much to be thankful for

Thank you Michele

Maybe like yourself it’s to do with sugars then. It’s a bit of a minefield to start with isn’t it. A diary is probably a good idea to keep on track with things. I guess I just get a little worried that I’ll eat the wrong thing and struggle to look after my little girl x

I had a cake today and it went through me, but it’s always going to be trial and error I think… but I do try and be stay safe with my foods. If I know a few things that have worked I stay with them for a while as I’m so nervous if I’ve got work or going out to eat I don’t want to upset my insides… it’s early days for you so take it easy, do big changes when you’re not on your own with your little girl…. It’s been 13 months now for me and some days I think just one more biscuit or something else then I regret it, so listen to yourself and say no… just be kind to yourself and don’t rush into it. I must admit I’m eating more now and I have the cheeky wee glass of wine now and then too. But it’s been hard work and determination to get here. 
The diary worked well for me for the first 6 months then then the things I circled that aggravated me, I’m now eating with no problems… 

Big hugs…. You’ve got this!

Michele 

This is helpful. My husband has his stomach removed as well as majority of his oesophagus 6 weeks ago.  He just has a straight pipe down to intestine.

He has been having terrible abdominal pains last night,which didn’t go after a lie down.

We was told the join at the bottom has delayed emptying but wondering if his pains are more constipation and if this is an ongoing tthings.he has lots of burps today too.

Thanks

Hi Michelle,

Yes it’s made me really nervous too. I have a bad memory of a car trip home after eating a scoop of ice cream when my family and I went for a day out, needless to say that I will be staying away from that for a while and then trying it again at home first.

its good to hear that you’re eating well now. I can see that it’s a long road ahead but knowing that it gets easier helps. I think I need to look at snacks I can take out so it’s not a case of getting to teatime only having consumed 400 calories

Thank you x

Glad you found your way here Sue, if you start a new post and ask your question more people will see it and may be able to help xxx