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Eating after an esophagectomy
I was recently diagnosed with esophagus cancer, long story short diagnosis was late (months past initial symptoms) partially my fault, partially doctors. Anyway, I am about to start chemo and immuno therapies next week, then supposed to have an esophagectomy in mid/late July; and I'm terrified of "life after" that surgery and am hoping to hear from people here, real world examples I suppose, of what that is like primarily around eating.
I can handle the smaller meals, sleeping at a bit of an incline etc albeit not happy about it of course, but what really concerns me is actually eating / chewing / swallowing.
I've discovered even with my esophagus closed up so I can't really eat I can still get some "treats" past it; a Reeses PB cup for example. Although regardless I'll pay with some discomfort while my system processes it, if I chew it to the point of being just nothing, like liquid/paste, I can get it down. Same with other items even a bit of cheese etc. Trick is to chew to the point of being a liquid / paste before attempting to swallow.
This is where my terror kicks in. I don't even do the treats like this after discovering this because frankly having to process it in my mouth for that long, chewing etc, takes every ounce of enjoyment out of it. Gone. It's a chore & miserable.
TLDR; will this need to be done with all meals for life after this surgery? Or will I be able to get back to "normal'ish" chewing and swallowing? I know I'll need to keep with the j tube, then move onto liquids, then soft foods etc till I can get to solid food during recovery likely months worth. But, I'm terrified that I'll have to chew to this extent for the rest of my life, absolutely demolishing my love of food (I'm a good cook/foodie; it's something I love).
Would love to hear some first hand accounts of what you're experience has been with this?
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Good morning
My tumor was located also at the esophagus stomach junction.
I just finished four months of eight rounds of chemo about four different types at one time over a two day. Period. Sounds similar to yours with the immunotherapy..
Back in December, my tumor was rated at an SUV of 11.4 and it sounds like mine shrunk like yours did just in March. They did another pet scan and it showed it had shrunk to 2.7..
I’ve seen a surgeon where I live in the DC area at John Hopkins, who wants to open my chest to do the surgery but next week I’m heading to Mayo Clinic in Jacksonville to see the surgeons there on the 13th for hopefully better options.
I have a question is anybody experienced anything in the regard of leakage where they have repaired the esophagus I know that can be a big issue. I’ve seen statistics of 3 to 5% at both Mayo Clinic and the John Hopkins, but a national average could be as high as 20% so I guess I’m asking. Does anybody experience this and how it worked out for them.
@firedog Yea. I'm not too into the idea of the surgery either. My oncologist and surgeon however are both 100% into it REGARDLESS of getting a complete clinical response (CCR) from chemo, if that were to happen.
I'm concerned about the level of life long changes to eating, sleeping etc with surgery vs the surveillance approach.
@mcdonsco hi. I had stage 4. Discovered fairly late. Chemo and radiation followed by surgery. I'm 3 years post now. I eat normally. You soon find out what your new system can and cannot digest as this is where the problems occur. Chewing and swallowing is normal. Small quantities are very important. I get frustrated by this frequently but if I want to avoid vomiting it's a must. Happy to discuss further if you want. Everyone is a bit different and it's a bit of a journey of discovery. Fibrous meat like steak is a struggle for me and I have to avoid sweets as they give me late dumping but I know of others who can eat what they want.
Hi. I had many rounds of radiation then rested for a month and then 5 sessions of chemo. More rest and then surgery. My esophagus was removed and replaced with part of my small intestine. The stomach was stretched up to the throat area. I ended up in ICU for 7 weeks due to complications with aspiration. I'll be honest...it's been a long road. I am now CURED. I was informed a couple of weeks ago. Cancer was discovered Nov. 2019 and today May 2026.
Eating has been a challenge. You should try different foods to see which affects your stomach. I can't eat spices. None. Things like donuts because of baking soda. No sparkling drinks incl. soda. I don't drink alcohol so I can't comment on that. Greasy foods, limited coffee, chocolate (although I eat it). I don't like meat but chicken I eat. You have to be careful with steak, pork as it may get stuck in your throat. It has to be cut very small. White squishy bread is a no no. You are better off with whole wheat. No nuts, raisins, hard candy. DRINK LOTS OF WATER. I have about 6 bottles daily. If you can tolerate the taste, drink Boost. There are so many but this is a start. Spices for sure. I aspirated often at night at first, but I have the solution and have shared it many times and people say it works. GAVISCON tablets. Godsend. I eat dinner about 5 pm. It takes about 2 hours for the stomach to empty....sit up, don't lay down. I take 1.5 Gaviscon right after I eat. I go to bed and take one more Gaviscon. I have a good wedge pillow. RARELY do I aspirate.
I hope this helps. If you have more questions just ask. Good luck and I am sure you will be OK. Green side up!
@supportivewife
My experience is very similar to your husband’s. I can swallow and eat most foods but I am careful about the portion size and I do have to chew
My bigger issue is the dumping. I’m almost 2 years post surgery and still have bouts of chronic diarrhea. I am also lactose intolerant so dairy is off limits for me.
Even after 2 years, I don’t always know how a certain food will affect me.
Have no fear. You will be eating in two weeks, lose the jtube in a couple of months and eat normal in four to six months. Do not overeat! That will give you cramps for a while. It take a while for stomach to get used to eating normal again but I was eating big meals with steak and dessert and drinks after six months. I know eat grilled meats, drink margaritas, and live life as normal as can be. It does take some time though.
For me, once the chemo started the tumor must have shrunk and I had no issue swallowing.
Post esophagectomy I had a few episodes that looked like choking but were me pushing myself too fast to return to normal. It was food irritating the esophagus and causing something kind of like vomiting but not really? It’s hard to explain and this sounds worse than it was but once the food came back up and I calmed down everything was fine. And after about six months of unusual feelings with swallowing and food passing out the other end too quickly things returned to somewhat normal. I still get a quickly “at capacity” but not full feeling with slight pain, but have learned smaller meals seems to work. Typing this up I realize this sounds much worse than it is and was. Just expect panic due to things being different with j-tubes, and returning to eating until you realize what your new normal is. Some people struggle more than others with it - my dietitians said eat only soft foods while my surgeon said eat what you want and figure it out based on how your body responds and she had the better advice on this one.
@firedog I had the gastric pull through with connection in the throat. I think they fed me too soon and I developed a leak that required extra hospital stay. I think that resulted in significant scarring which affected my swallowing. I frequently gag on food and keep an empty cup with me when I’m eating just in case that happens. I would try to avoid that leak at all costs. Even delay eating for a couple more days after they tell you you can’t eat. I’ve had to have my throat stretched about 15 times in the last 2 1/2 years. I think I’m a rare case on that and most people do not develop this Leake but you do need to be careful.
@firedog
I am 9 months post Ivor Lewis esophagectomy and as far as I know , no leaks