Total Gastrectomy

Dear Paula,

I understand what you are going through. My husband is apx 10 weeks out, and keeps losing weight. So far he has been losing around 1 kg per week..

The eating got better and more comfortable, but the nutritional drinks are still out of his list. He won't take them, as he says they distrub his intestines, give diaherrea and make him feel crampy. And yes, they are disgusting. 

We have come to terms with the fact that some sort of weight loss is inevitable, but seeing your partner waste away is very very difficult. I am looking forward to the day that this weight loss will stop, and a new balance will establish itself.

Just try to be patient; there is a positive curve to the recovery of this tremendous surgery, and it truly gradually gets better. Try to serve him everything to a mush. on the early days there is really no medal for eating solid food. Also, in our experience very heavy foods on the early days are difficult to digest. Remember that with the new anatomy the enzymes from the pancreas and the bile duct cannot work their magic as they used and the small intestine tract for absorption is considerably smaller, both making it extremely difficult for the body to absorb nutrients the way it used to.

If you have any questions in particular i am happy to help best to my knowledge so far. 

Hang in there,

Thanks for your reply Oyita, so glad to speak to someone who understands what he's going through. I'll try to be extra patient. Trying to buy high calorie soft foods, and keep encouraging him to eat, without becoming a nag bag! I want to hear him make suggestions for himself, like I'll go for a walk today, but finding he is making excuses not to do these kind of important things. He doesn't want to return to every day living tasks, that he did prior to surgery. I know he is feeling down, understandable with what he's gone through. Maybe he is just not ready, and these things will come in time. That must be it? 

Hi Paula

Although I was lucky enough to get away with a partial gastrectomy I too struggled with weight loss. I couldn’t tolerate the supplements at all. I had my surgery in December 2018 and finished post op chemo in April 2019. It took 4 months after chemo finished before my weight stabilised. I haven’t gained any weight since then but I am no longer losing any. 

My taste buds slowly returned to near normal which made eating more enjoyable. During those early months I tried to add cheese, mayo etc to as many foods as I could and also tried having full fat custard with banana as one of my snacks during the day. It does get easier. 

It is difficult to motivate yourself to try to return to pre treatment activity, particularly during winter months. Everything was such an effort and I would be left feeling exhausted even after a short period of activity...but again, it does get easier.  I found that as time went on I  was doing more and more without even thinking about it. I am now back at work full time, I joined a gym and go 3 times a week (I am 58) and I have a better social life now too. I planned loads of events with family and friends throughout my treatment and continue to do so now.

 I think what I am actually saying is be patient. It will get better. It may be worth talking to one of the MacMillan nurses or his GP if things don’t improve over the next few weeks. We all react differently and I know that I approached every aspect of my diagnosis and treatment positively and with humour which helped. Others are overwhelmed by what has happened and what they are going through. 

Karen 

Hi 

Like others I found eating a challenge after my operation for a partial gastrectomy. I ate things I hadn’t eaten before as I focused on high calorie and high protein foods. Like others adding cheese and full fat milk worked for me.  I made porridge using coconut milk and banana- it was a Deliciously Ella recipe.  I ate eggs and avocado at lunchtime and at night ate things like fish pie, cottage pie, baked potato with cheese 

I had to watch sugar at first.

I hated the drinks but I made a jelly with the milky ones!  

I tried to avoid eating and drinking at the same time as it filled me up too quickly.

It does get easier and I now eat pretty much as I did before though my husband says I am a cheap date as I don’t eat as much as before!

Good luck!