Whole stomach being removed

K

Sorry to hear that you find yourself joining this group.  There are lots of people here to help you and will share their experiences of having a total gastrectomy.  They go on to lead a normal life.

I am due to have a partial gastrectomy on Monday and have written a blog of my experience to date.

I found this Forum invaluable as well as the information from the Oesphigal Patient Association OPA, a good place to start.  

Do you know if you have to have chemo before surgery?

Happy for you to message me if that would help.

Take care xx

Thank you so much for your reply!

I will look into the Oesphigal patient association forum.

The surgeon said it is unlikely that I would need chemotherapy before, but has to have the meeting with the multidisciplinary team. This meeting will happen tomorrow, so I will find out tomorrow afternoon. 

Xx

Hi K

My dad (54 years old) had his whole stomach removed and half esophagus in September 2018. His was also in a contained area. He was in hospital for 9 days in total after the surgery and he is now on the road to recovery and is doing very well. He is back to eating normal foods, he can eat anything he wants really! He has lost a lot of weight, that seems to be the tricky part for him putting back on, but his surgeon said this takes time to build back up. He will get a scan in March and every 3 months afterwards to check everything is clear. If you have any questions, feel free to message me. Been with him every step of the way. 

N

Hi. I had a total gastrectomy in Aug 15 at the age of 53. I was also a stage 2 and the tumour was in the top of my stomach. I now lead a near normal life although I do tire more easily than before my operation. I do think it’s advisable to join the Oesophageal Patients Association (OPA) as they supply a pack that advises on all manner of everyday living including diet. It’s important to try and stay healthy and eat well prior to the operation. Although I didn’t feel well enough to go fell walking which I used to enjoy, I would still go out walking locally. You will need to eat little and often post op and in the months following your operation you will learn to recognise when your body needs nourishment or a top up as you will feel your energy levels dropping. It is strange at first going into restaurants although the OPA sent a card in their pack to show in restaurants explaining that I could only eat a child’s portion. I show this card everywhere and I am usually told that they can supply a small portion or allow me to eat from the child’s menu although I refuse to eat chicken dinosaurs and chips. Ha ha. It’s possible to download this card in different languages which I always do when going on holiday abroad and I have never had a problem. I found that the time prior to my operation the worst time as there were so many unknowns. There are plenty of people on here to offer advice and support so please feel free to contact the forum anytime. You can also msg me anytime as I don’t mind anyone contacting me because I know how I felt in those early days. I was fortunate in that I had a good network of family and friends which was invaluable. Where and when will you be having your operation? Keep in touch.

Take care

Donna. Xx

Thank you so much for you reply!

It definitely helps bring on this forum. 

X

Thank you so much for you reply!

It is so reassuring that there is a end to the very hard road ahead. 

I really do value all they help and experience that you can give. 

X 

Hi K

sorry to hear about your diagnosis, I’m glad it’s early stages. Fingers crossed the rule out the need for chemo. 

I had my whole stomach removed 3 weeks ago so I’m in the early stages of recovery, the surgery wasn’t as hard as I expected, I was in hospital for 7 days and was surprised how mobile I was. 

I’ve been on a pureed diet and now onto mashed foods, I’m having a few problems with eating. It it’s early days and to be expected I suppose. I’ve lost about a stone so far but I did put on extra weight before the op in preparation, also exercised as much as I could to try and build a bit of muscle, I think it’s really helped. 

This is a really friendly place and always such good advice to be had, like the others have said, feel free to message me too. 

X

Thank you so much for your reply Lou and yes it’s the recovery which is scary. 

I think we probably push our selves too much and it sound like you are coping well considering. 

Thank you for your support. 

X

I hope that he recovers as quickly as possible. 

Thank you for your reply and support. 

X

Hi All

I have just read the posts regarding total gastrectomy and wanted to say thank you. You guys are so good to share your experience and give a lot of reassurance, hope and support.

My dad has been diagnosed with stomach cancer and advised to have his stomach out. I was wondering whether anyone has had or know anyone who has had a jejeunal pouch as part of the surgery? My dad is to have his food pipe joined to his small intestine.

The internet can sometimes give too much info and the outlook for those with a pouch sounds better for nutrition from what I have read. Unfortunately my dad's hospital team do not do the jejeunal pouch so I was wondering how common it is.

Thanks in advance

Asha

x