What to do? Husband won’t drink enough 6 months after Ivor lewis

Let's chat. While the post-op journey is a bit different for each of us... There are many things to understand about what is taking place over 12 to 18 months post-op... and what is normal... and what may need to be fixed by a doctor.

Gary

Hi @deb005, how is your husband doing? How are YOU doing?

Hi Colleen, thank you for reaching out 🙂 we are managing ok. Kerry has an endoscopy next week by a surgeon in the town we live in. Not his surgeon that performed the Ivor Lewis surgery but one closer. Just having a look to see everything is healing and ok. He is still struggling to gain weight but is feeling ok in himself. We have started walking which I think is helping too. We spoke to Gary on this forum and he was very helpful and we now realise it’s going to take longer than we thought to start and feel somewhat ‘normal’ again. We’re hopefully on the right track. Thanks for the message.
Deb

Hi. New to this group. My husband had his surgery end of January 2025. He is still having problems with weight and drinking. He finds it tough to work in the fluid while trying to eat to gain back some weight. He has also developed a very bad cough which inhibits his intake of food and drink ing. Working with a nutritionist to get him to gain weight. There are many recipes for nourishing and weight gaining shakes as well as getting nutrition from glucerna , a meal supplement or protein shakes. I always check with his doctor and or nutritionist before I start him on something new like glucerna...a meal supplement and protein shakes

Hello, did tour husband have Ivor Lewis surgery also ? Does he suffer from reflux at night ? It’s difficult, we’ve been told sugar can affect his reflux…also can affect this dumping syndrome…we’ve tried cutting it out along with most of the other foods which can make his reflux worse ! It’s all been trial and error so far..are you in USA ? We’re in New Zealand, some of the products aren’t available here and hes also lactose intolerant which doesn’t help with his weight gain…it a very slow process trying to get his weight up..thanks for messaging 🙂

I'm 8 months post Ivor Lewis and having a similar problem. Over the last 2 months it's been very low humidity in Queensland, Australia. I've also had to revisit my diet as I was suffering from a persistent cough from reflux and occasional coughing reaching fits (very scary). I'm now having 6 small meals a day, instead of 4 and the coughing and reaching fits have stopped. (Fingers crossed) Prior to my diet change I was drinking 4-5 cups of of caffeine free, lactose free coffees a day and I think that was helping with hydration as well as energy and protein intake. My new diet only allows two lattes a day. I try to drink extra water but it's hard to do without triggering reflux or dumping. It's a work in progress.

Hi max, yes it is a work in progress. My husband had a few episodes of passing out due to dehydration..
He found the 6 small meals a day better than the 4 and helped with the reflux etc. he still finds it hard to drink enough. It must be difficult to get enough fluids in over there in that heat with a much smaller stomach…
At present he is in hospital here in New Zealand having a Jtube op so he can get more calories and nourishment in. He couldn’t maintain his weight over the past 11 months so hopefully this will help him. He is 6ft.2 and down to 57-58 kilos from 74-76. Kgs. We are praying this will be beneficial for him.
Wishing you well and hoping your health improves soon
Deb

I carry a bottle of water with me and constantly take small sips all day. By the end of the day, Im pretty hydrated. Works for me.

My husband had surgery on 8/21 and he did really well with the overall healing process after he got home. That said, he’s having a terrible time with eating. We’ve found that drinking room temperature water is much easier than cold water. He’s been eating a lot of soup, baby food, fresh juice. He’s able to eat protein bars if he eats them slowly, but he’s having trouble eating most solid foods. We aren’t sure if this is normal for where he’s at or if he needs to have his esophagus widened (the surgeon left him with about half his esophagus and a smaller stomach). He’s getting very frustrated. His pathology post surgery was very good; we aren’t sure what the next step will be. His oncologist wants him to talk with a doctor at Mayo who is looking at his chart. Where he’s at, he doesn’t feel like he will be able to do more chemo and isn’t sure he needs it. I’m terrified of a recurrence but can’t imagine him doing it right now either. I know he can’t wait too long to make this decision. He had a scary time in the first half his hospital stay, with trouble breathing and one bout of afib but hasn’t had difficulties with breathing since he left the hospital. He’s had an incidence the other day when he thought he was going to pass out and I know he’s not getting enough water either. This surgery makes it so difficult for the body to get what it needs.

Hi. I'm in nz.and 2 years post ivor Lewis. I've had to cut out sugar, baking is a big no for me and chocolate makes me very unwell. Beef is off the menu and curry, even mild. Elevation in bed is really important and my episodes at night have reduced heaps. I doubt they will ever go away completely tho. My symptoms are still changing regularly. What part of nz are you in?