Help with nausea and vomiting relief post-esophagectomy

Posted by aheid @aheid, Apr 24 12:56pm

My husband is now 10-½ months post-op; his surgery was on June 7, 2023 (esophagectomy, removing the lower portion of the esophagus and approximately 25% of the stomach, pyloroplasty and insertion of a j-tube).

After all this time, he still continues with daily nausea and frequent vomiting, which seems to be brought on by eating, drinking, on taking formula. We have tried four different formulas hoping to find one that he tolerates—first it was Osmolite, then KateFarms, then Nutren (based on suggestions from people on the Mayo Clinic forum), and finally Abbott’s Vital Peptides 1.5 Vanilla (suggested by a hospital nutritionist as being very digestible)—but he has not been able to tolerate any of them. He can sometimes make it through a single carton before becoming nauseous but once he does become nauseous, it’s impossible for him to continue with the formula. I have slowed the delivery rate down as far as 55-mL/hour but that doesn’t seem to make any difference as to whether he is able to tolerate the formula. The Vital Peptides can be consumed orally as well as enterally—and its taste is similar to the high-calorie Boost. He takes in very little orally but deals pretty well with Boost, yogurt, etc., in fact better than the formula. His inability to consume sufficient calories over the course of the day has resulted in severe weight loss. He is down to 138 lbs. from about 218 at his finest! Medications (Ondansetron, Prochlorperazine) don’t relieve the nausea. He tried Dronabinol but passed out. It should be noted that the “nausea” that my husband feels is not coming from his stomach, but rather the abdominal area. And, he burps a lot, suggesting to me that he has too much air in his system—maybe he keeps his mouth open while sleeping—or could it be something else? I have no idea but I’m very careful not to get any air in when flushing his tube.

Speaking to the tube, hubby’s j-tube continues to be problematic—it seems to succumb to pressure and wants to come out. When I say pressure, I mean when he occasionally has to strain with a bowel movement, or has a forceful vomit. In fact, I believe that something, perhaps the straining, has caused the tube to move and enlarge the opening in the intestine because lately there has been a great deal of leakage around the outside of the tube (the leakage consists primarily of bile), about the same as when the tube has been replaced. It causes the skin around the outside opening to get very red and burn, and the tissue at the opening itself is very granulated. We keep the area clean with Hibiclens and coat it with Maximum-strength Desitin, which usually clears it up quickly but today it was extremely red and painful.

It’s heartbreaking to watch him going through this. He feels horrible. He is weak and fatigued, and both his white and red blood cells as well as his hemoglobin are low—I’m sure this is because he isn’t consuming enough. Blood work comes back with a notation of possible nutritional anemia. He is also suffering from ongoing shortness of breath—again, likely due to lack of nourishment. He has seen both an acupuncturist and a hypnotherapist, unfortunately neither with much help resolving the issue. Surely there must be some relief for him—he can’t be the only one to have suffered this way after an esophagectomy. In June, at the time of surgery, he was told that he’d be eating normally by September—that was three-months and now it is almost one year. I really believe that if we can get a handle on the nausea, everything else will start to fall into place. Please offer us some suggestions.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

@aheid, I'm tagging fellow members like @davidwrenn @socalkelly @atafitness @manz @ajbambe @aimeevuk @pj03 who have written similar experiences and may be able to offer suggestions. You may also find helpful tips in these related discussions:

- My dad has stage 4 esophagus cancer: Can't keep anything down https://connect.mayoclinic.org/discussion/my-dad/
- Eating and Esophageal Cancer: Anorexia 18 months after Ivor Lewis https://connect.mayoclinic.org/discussion/anorexia-18-months-after-ivan-lewis/

I can only imagine how heartbreaking this must be for you and how draining for your husband. I'm sorry to hear that even complementary therapies like acupunture and hynotherapy didn't bring at least temporary relief.

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Thank you; I will check them out.

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Hi aheid,I find renines or settlers help I also have lots of burping.im being investigated for inflammation of bowel.hope you get something that suits your husband.

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I know I've written before with respect to the issues that my husband has been going through since his esophagectomy last June (2023)—and I'm writing again because instead of getting better, he is getting worse. His cancer was in the cardia area and was Stage 1b...he did not go through chemo and/or radiation and you would expect his recovery to be quicker because of that but he is going through hell.

My husband is now 11-½ months post-op, still is unable to tolerate enteral formula (and we’ve tried four different brands), and continues to have chronic nausea and vomiting. He’s had issues with his j-tube (clogging, falling out, and leakage consisting of formula and bile). He’s had aspirational pneumonia twice as well as nutritional anemia.

He very recently had an EGD scan in the ER, where it was discovered that he has esophagitis. The doctor who performed the scan suggested that the pylorus be tightened up but the surgeon who performed the esophagectomy ruled against it.

The latest issue is a too-slow heart rate, erratic glucose readings and inadequate electrolytes. In addition, and I believe because of his failure to get proper nutrition, his red and white blood cells are very low, as is his hemoglobin. Now they want to take a bone marrow biopsy in hope of finding an answer as to why he is not producing enough blood….again I feel this is because of his lack of adequate nutrition. To that end, they will be providing nutrients via IV.

Anyone out there with similar experiences? Any suggestions? Help!

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