Total Gastrectomy

Good morning.  Firstly welcome to this Forum where you will get much support.

I had my total gastrectomy in June 2025.  I had robotic gastrectomy so healing was very fast with no pain.  I will be honest and say the first few months are very difficult, not with pain but eating/drinking.  I also felt very weak and couldn't stand up or walk for long.  I have now lost over 3 stone.  I was a size 14 and now a size 8.  I had a severe thirst that no juice would quash.  I felt tired so please rest.  Everyone is totally different so this is my experience only.  Eat small portions and you will likely go off some foods.  I don't really like sweet foods now or crisps.  I was sick a few times due to "sweet foods" so your body will begin to tell you what it likes and does not.  Now the POSITIVE news.  5 months down the line and I feel much better and my portion size is increasing.  I can tolerate certain sweet food now etc.  I enjoy a tipple of "tawny port", I feel hungry most of the time and can eat more or less what I liked to eat before.  The weakness and tiredness has gone.  The only issue I have is my weight.  I need to speak with the Dietician to start protein supplements which I don't really enjoy.  You will get through this.  I was very fortunate and did not need chemo so sorry you are having to go through this.  It is best to try and eat every couple of hours which I find quite stressful as always "clock watching".  I also find it hard thinking of what to eat for snacks etc.  You will get through this and thinking of you.  I hope this helps.  Any questions please get in touch.  Shirley

It’s really good news that surgery is now an option for you. Dr Asif Chaudry is a very well respected surgeon and many people on this site have had very positive results! 
I found the book the Art of Eating without a Stomach really helpful as it gave me information and some control on how to manage my recovery. 
A couple of things helped me. Not eating and drinking at the same time. Very small amounts of soft foods at first..that’s not easy as you don’t know when you’re full! 
In hospital there was a clear pathway and once I was able to eat I ate a few teaspoonfuls then built it up to a cupful! 
High protein and high calorie foods were my diet! 
I’m sure others will share their experiences!

Good luck! You have done so well to get through this! X

Hi Shirley

Thank you for the info. Unfortunately I cannot have your type of surgery,,apparently due to a stent placed at the bottom of my Osophegus. So it’s between 8 and 12 hour open surgery. I am praying that I get through this and then after the downtime I can continue to live my life to the full. I will keep you informed through my journey xx

Hello Jac

Thank you so much for responding - I will look up the book for help. How was your surgery done? Mines got to be open surgery due to me having a stent placed at the bottom of my Osophegus 4 months a. I will keep you informed through my journey and possibly mither you with lots of questions xx

I had a partial gastrectomy through open surgery.  I honestly found the surgery easier than chemo!  The surgical team were fantastic and I was on an Enhanced Recovery so was up much earlier than when I had Bowel surgery ten years before! I walked out of HDU after five days and went home the next day.  My sister worked in the hospital so that helped! 
I was absolutely petrified before it and I tried to focus on getting as fit physically and emotionally as possible! 
Do let us know how you get on xx

Hi, so sorry to hear about your diagnosis… I was stage 4 signet ring… I was very nervous too before chemo, before the surgery… but I stayed positive thinking to myself I will get through this for the sakes of my family…

As Onedeal said the hardest part is learning to eat again and the weight loss… I lost 3 stone and then gained a stone and have maintained it now for 3 years… it’s been 4 years since I was diagnosed and I remember it like yesterday. 

The operation was in its self a painful recovery but I took my time and paced myself on what I could do to recover. Listen to your body if you know you can’t walk that day don’t as your abdomen area will hurt for a few weeks… The surgery team and nurses will be there all the way whilst you are in hospital and help with pain management if needed… 

If you need anything else please ask away. 
Take care Michele 

Morning Michele

Can I ask how you managed to put on a stone?  I am eating well and enjoying most foods but still losing weight.  My Dietician is sending out powder protein/high calorie milkshakes to try.  I am also going to try eating x2 main meals a day as feel starving all the time but find it stressful thinking about what to eat to put on weight as I am still trying out foods that agree with me so wasting a lot of food.  It is still only 5 months post surgery so early days.  I would love to put on a stone so that is my goal.  I would appreciate any tips you have please.  Keep well.  Shirley X

Hi, Protein shakes were no good for me as they gave me diarrhoea, too much sugar for me. I ate a lot of protein but mince meat as I couldn’t get on with chicken pieces to begin with… I made a lot sauces using milk to put on veggies like cheese sauce… lasagnes… crumbles with custard… I used full fat milk for cooking, but not to drink as I don’t like full fat in tea/coffee… I had high protein yoghurts too… I ate biscuits not to high in sugar.. crisps, cheese cubes for snacks. I set an alarm to remind myself to eat. 

Take care

Michele 

5 months is still early days! Focus on what you like, but try to increase the calories in these meals, things like adding full fat milk, butter, cheese.

Hi, wishing you good luck with your surgery.  I had my stomach removed and 130+ lymph nodes with open surgery in July 2024.  The operation went well, taking 7 hrs.  I was out of bed within 2 days, walking within 4, discharged after 7.  This was probably the easiest part of my cancer journey.  My scar has healed really well.  

I lost 2 stone in the next few months and had chemo. I found eating difficult but my dietician was a great help. Make sure you get as much advice from them as possible. After about 4 months I started to put on a little weight but I was on chemo and had a bad infection. 

I tried various soft foods and supplements and eventually found some I could eat. I could not find a supplement I liked.    Homemade vegetable soups with double cream and a poached egg work well for me.  I cannot eat bread or anything 'stodgy'.  Porridge with full fat milk was good for breakfast. 

Make sure you eat small portions of food  on a regular basis.  If I eat too much I get gut pain and my body does not tell me if I have eaten too much so its trial and error.

Good luck 

David