18 months after esophageal Cancer Surgery, still on feeding tube

Hi dh1942 @dh1942
I had 28 chemo and radiation treatments for esophageal cancer tumor, and I used feeding tube for several months when I could not swallow food and lost 15 pounds. I'm now 79. The good news in my case is the treatment worked and I did not need surgery. Scans are now clear and I'm feeling normal again.
When I was using feeding tube, the docs recommended ISOSOURCE which got me over 2200 calories with 6 feedings a day. I wonder if your husband is getting enough calories, and if your docs can recommend changes to improve the current situation?

We are having a similar experience to that of dh1942. My husband had an ablation to remove Barrett's Esophagus about 12-years ago and has had routine endoscopies ever since. Last year the endoscopy showed some cancer cells in the cardia area, a very early detection—the small mass was removed but some cells remained, thus an esophagectomy. 10-15% of the lower esophagus was removed, as well as ¼ of the stomach; vagus nerve was cut, pyloroplasty was performed and a j-tube was placed.

He’s not only had constant nausea and vomiting issues since the operation in June 2023, but it seems to be getting worse as time goes by. He can’t even take a sip of water without getting nauseous or vomiting and he can’t finish one container of the enteral formula either. We are on the fourth brand of formula but the issue is the same no matter which brand we try. We’ve reduced the flow rate in increments all the way down from 110 to 55 mL at one point, without any noticeable change in tolerance. He does drink the high-calorie Boost drinks (530 calories each) but they also bring on nausea. He is losing weight—went from a perfect-for-his-height 220 lbs., to a skin-and-bones 138. In the almost 11-months since the surgery, he’s had less than 10-days without nausea or vomiting.

He’s also had problems with his j-tube—becoming deflated or falling out—and has had to have it replaced on a few occasions. Each time it is replaced he goes through a week or so of leakage around the tube, which I believe is a result of the opening in the intestine widening when the new tube is inserted. Lately there is leakage and the tube hasn’t been replaced. Each time he drinks or has a container of formula, his bandage gets soaked (primarily with bile and probably some of whatever he has consumed)—and it burns his skin. We clean the area with Hibiclens, coat it with Desitin and change the bandage constantly. We just got a script for an abdominal scan to see if there’s anything else going on in there that may be causing this.

His quality of life is non-existent…he sleeps (or tries to sleep) most of the day—he can’t get away from the nausea no matter what he does and we don’t know what else to try. His entire area, abdominal and of what’s left of the stomach, is painful. There has to be someone else out there who’s resolved similar issues—we need suggestions.

I believe my husband is getting enough calories from feeding tube Promote (2200 cal). he also gets an extra 600- 700 calories from Chocolate Mighty Shake that come frozen, better tasting than Boost. His weight is quite stable at the moment, although I feel he should be gaining weight with all the calories consumed.
The big issue for him is to get enough calories by mouth to get rid of the tube, which would improve his life by 75%. Luckily, he never had problems with nausea, but the mucus in his throat causes him to cough a lot and is an obstacle to eating, he cannot drink water, of course, he does not have appetite, feels full when barely eating etc. Also, I believe that he has somewhat given up the battle, I need to prod him to eat without nagging. All the suggestions I get to make little appealing meals for him does not help in his case.
Thanks for the replies, it helps to know we are not alone with all these problems.