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Help with nausea and vomiting relief post-esophagectomy
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.
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@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.
Thank you; I will check them out.
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1 ReactionHi 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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1 ReactionI 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!
@aheid, I'm just catching up with your message now. I'm sorry to hear that things have gotten even more complicated with your husband's health with heart issues too. Do you know about cardio-oncology?
Cardio-oncology offers expertise in addressing heart problems, potential or current issues during cancer treatments. At Mayo Clinic for example, the Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.
It sounds like your husband is already in the care of a cardiologist, so cardio-oncology may not be necessary. It must be frustrating when you're getting differing opinions on what to do next. Did he have the bone marrow biopsy?
Although he has been seen by a cardiologist, even while in the hospital, his heart is not the issue. His main problem is nausea, vomiting and reflux, which has resulted in both esophagitis and aspirational pneumonia. Currently he receives TPN via IV—hopefully this will give the inflammation in the esophagus a chance to heal. In the meantime, it should give him the number of calories that he needs in the right amounts as to proteins, etc., to start to see improvement in his blood numbers.
Apparently there haven’t been any studies on nausea, how and why it forms—at least not that I could find. I believe that most surgeons just accept it as part of recovery. Hubby refluxes bile and probably stomach acid as well. Bile has been very obvious in the vomit and in leakage from around the j-tube. So, I wonder, is bile produced in response to fat in the diet and, if so, would it be better to have a mostly fat-free diet? If he stops producing bile, it may be less likely to reflux. Something has to be causing the nausea—how can I find out what that is? If we can get a handle on the nausea, he should be able to start eating.
And yes, he did have the bone marrow biopsy but the results have not yet come back.
P.S., I have read that nausea starts in the "vomit center" area of the brain. If that is, in fact, true, and it starts in the brain, the message must then follow some neural pathway toward the stomach or intestines—does that mean the vagus nerve? The vagus nerve is severed in an esophagectomy.
The vagus nerve (cranial nerve X (10))... you don't want to see the organ innervation of this nerve (it'd be easier to list what these nerve branches don't control!).
The problem for us is allowing (maybe hoping?) our bodies to find a new way (after esophagectomy) of getting the old job of digestion done once again. I often refer to our first year or two post-op as a time when our bodies are re-wiring themselves without certain vagus nerve branches.
Now... do our bodies actually re-wire themselves? All I can say is ... is that things have changed massively for me the past 4 years. The first many months post-op... NOTHING worked well. I'd put food and drink down my throat... and my body had a shitfit (medical term). I would get flushed, heart rate out of whack, breathing harder, nauseous some, stomach (or new stomaphagus creation) hurting a bunch... dumping syndrome with intestinal spasms soon to follow. And much softer stools, even gaseous diarrheal explosions! And this lasted for what seemed like an eternity.
But... as the many months rolled by... these crazy symptoms I was seeing slowly (and I do mean painfully sloooowly)... started to subside. It's as if my body was starting to figure things out... a new way of getting digestion done... without the old set-up. So... is this to be considered "re-wiring"... ya got me.
All I know is that I can eat a lot more, tummy aches few and far between now, I poop like a champ now (and some very nice firmer poops once again). I sleep normally again, flat with head on a single pillow (never saw that being a possibility). So... many things are possible... given enough time... and not giving in to our new rearrangement down below. I suffered but stayed the course, eating what I wanted to... forcing my body to adapt and find a way to get things done. It just took 18 months or more!
But... as for nausea... the problem is... There just aren't any doctors who specialize in nausea. And that's because it is considered a temporary state... due to chemo, or radiation treatments, or from anesthesia effects, or post-op effects, ir being pregnant, etc. It usually passes. So our symptoms are treated with certain meds (like Zofran, Reglan, dramamine, etc)... but mostly doctors just wait for it to pass.
But I know a few post-op patients who have persistent nausea... even years later, and it is not caused by eating even... it can happen at any time of the day. So, does the oncologist have the answer? Or the thoracic surgeon, or GI doctor? Doubtful any of these Docs have a clue. Maybe a neurological specialist is needed... to find a way to permanently block any nerves that carry these nausea signals to our brains. It is puzzling to those I talk to and who come on our Zoom calls.
Thank you for the suggestion....I guess my next step will be to try to find said neurological specialist.
I'm just starting chemo and radiation for esophageal cancer. Sounds like your husband and I have the same problem. I'm praying that you guys find him some relief.