3 Months Intense Chemo then full stomach removal

Hi N,

I had a total gastrectomy at the end of Jan, so I’m 4 months post operation.  Having your stomach removed seems a very drastic solution when it’s first mentioned. These forums are full of people’s experiences, take a look at the bloods section, there’s a couple of people who have made some really good blogs, I only found these after my treatments. Just search gastrectomy and you will get a few hits, Alimog92 and Amlux are two I know who have done a lot. 

My operation involved opening my belly to remove my stomach so I now have what can only be described as a shark bite on my belly.  I spent 9 nights in hospital after the operation. The nurses try and have you on your feet within a day or so. Your allowed to leave once you can eat, pooh and walk a flight of stairs.  

Removing your stomach does mean you have to make a few changes In life:

Your eating habits completely change, you have too eat lots of small meals throughout the day. 

You need B12 injections for life, this is once every few months. 

You have to sleep on a wedge or stack pillows to stop reflux. 

Dumping can be an issue for s9me people, I’ve yet to really experience this. 

Fatigue, after all major operations you fatigue quickly, but due to your new diet you need to get a good balance of calories in aga8nst out.  Most people loose a significant amount of weight, I’m now 3 stone lighter than pre op.  But I deliberately put on over a stone before the operation. 

Hope some of this info helps

Hi my hubby is 16 days post op..He is not your average 62 year old he is a real fitness freak today he has cycled 17.5 miles in just over an hour..

Anything is possible hold on to that there are amazing people on here that will inspire 

Xx

Hi Ant

Thank you very much for your advice this really does help going forward...gives us a better understanding of what to expect.

Its also good to hear that you are doing well after being through this same experience.

Take Care

Hello

That is brilliant to hear that your hubby is doing so well after being through this. I like hearing these positive stories and will keep in mind going forward.

Both of you take care x

Hey N,

So sorry that it's taken me a few days to reply, I've just finished up my chemo so I've been a bit under the weather. Nevertheless, welcome to the forum and so sorry to hear about your dad. Rest assured that the procedure of full stomach removal, while major, is more common than you'd expect. Like AntD78 mentioned, we've both had it done and we're now getting on with life without a stomach! All my friends are shocked when I tell them that I don't have a stomach but life certainly goes on, albeit with a few adjustments that AntD78 mentioned. 

A quick bit of info - I had four cycles of FLOT chemotherapy starting in November 2017; followed by stomach removal in February 2018; and four more cycles of FLOT chemo post-surgery which I finished last week. I'm now happy to report that I'm fully in remission. The chemotherapy before surgery worked wonders and reduced the tumour by a lot, my surgeons were pleasantly surprised when they cut me open! 

I'd recommend getting your dad to eat as much as possible before surgery/chemo if he can, as weight loss will happen. I started off around 70-75kg and sadly I'm now close to 50kg. As a 6ft male it's my biggest concern but I will slowly start putting weight on now. 

It's totally up to you, but if you click on my profile, you'll see a blog I've written on my journey. Some of it may come as a shock and may worry you, but please do remember that everyone reacts to treatment differently. My worst experience was chemo after surgery, but that's due to me being so skinny and the drug concentration not being adjusted to my new weight. 

I wish you all the best and do contact us if you wish to receive any further info, and please do send my best wishes to your dad! We'll all be rooting for him.

Ali 

Hi N

My mum had a full stomach removeal last September, I spent two weeks going to London everyday to be with her.

They told us the surgery was a success which at the time they thought it was.

She did go into intensive care for a couple of days afterwards but thats more so they have one to one care, don't be afraid of all the tubes.

Mum spent about 10 days in hosptital. Shes managing really well eating there are lots of things she can't but she gives everything ago.

Bread, pastry & meat are differcult. Sadly she does feel there are day where she is strapped to the toilet but being 68 & stubborn she refuses to do a food diary & eat little and often, i think if she did, the whole toilet thing would be much better.

Sadly when we saw her consultant in October we had the terrible news the cancer had spread, they offered mum 18 weeks of chemo to help pro-long her life. She did 7 weeks but it all became too much.

She hasn't given up but i do think it is about quilty of life. She gets up and dressed everyday but there does seem to be more time spent in bed now.

 I'm thankful for everyday i have lft with her.

Hi I wrote this post a while ago, can I ask how everyone is keeping? Did anyone get any follow up scans after their surgery?

Nina