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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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I really feel that time is the only answer. All of the problems seem to lessen to some degree over time but there's no doubt, the operation and recovery are both brutal. I wouldn't wish it on anyone else either. But still, there are many people who are going through much worse. May God bless your mother.
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1 ReactionI pray for you guys. I don't want to pick and pry to much. Is there anything that made a substantial difference other than time? I'm so sorry for all of the stuff that has went on for you guys for last couple of years. I think we are at year 2 of hospital complications, i wouldn't wish this life on anyone.
My husband is now more than two-years post-op. He still gets nauseous but nothing like what he got the first year and one-half. He is still on j-tube feeding (they re-inserted the tube after six months on TPN when he got an infection). Since then he's had so many issues--while in the hospital he got shingles. When that stopped and he went to a rehab center and contracted scabies. Now that the scabies are gone he's developed an unbelievable rash that the dermatologist diagnosed as eczema. That was in June and it hasn't cleared up. My feeling is that it's something hematological. The nausea seems to be very common after an esophagectomy and apparently some people suffer with it for two to three years. We tried acupressure and hypnosis but neither did any good. It's worth a try. I sympathize with both you and your mom--I'm sure that you're both going through hell. Hope her torture doesn't last as long as my husband's has.
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1 Reactionany update on your husband, my 61 year old mother is going through the same exact thing, with the nausea she's seen gastro doctors and has had brain scans done. i feel like we have tried everything its been about a year since her operation maybe a little more. however the formula is tolerable for her but still unbearable to live with.
Thank you for your kind words. The hospital here (in New York) is St. Peter's—they have an excellent reputation.
I'm so sorry to hear that. I don't know where you live, but I'm in Cleveland Ohio. From what I understand all hospitals aren't equal. We have some of the country's top hospitals and staff , and I understand that not all states have the best health care systems. I have a friend who moved to another state where his health started declining rapidly and the doctors there aren't really helping. Not to say they're not doing their best,... I'm just saying! He said that he wished that he was back in Cleveland where some of the world-class facilities are located. All that to say if you think it may be beneficial to take your husband elsewhere, ( that's if you think he's not getting the best treatment, ) if your insurance will allow that then I'd try that. As I've said, I don't know where you're at and you just may have the best there, but it seems like somebody can do something for him. Has anybody suggested steroids? My doctor put me on them for nausea and it helped alot. I pray for you and your husband to find relief. I'm headed that way to the same surgery in about two months, so I'm looking for some good news from you guys soon. Stay strong!
I'm very sorry to hear that and I know the feeling. It's a horrible, devastating disease for everyone involved. I'll keep you in my prayers.
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1 ReactionYes the patch definitely has some side effects especially if you try to discontinue it. I hope y'all are able to find the answer to getting your husband well again, my husband is losing the battle and I believe giving up and I'm falling apart.
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1 ReactionThank you for the suggestion, it's welcomed, but hubby has now had his j-tube removed because of the intolerance to formula...now he is taking TPN (IV nutrition) and his nausea and vomiting have subsided quite a bit because it is administer through the bloodstream rather than the GI tract. After he spent almost an entire month hospitalized, he has also gained some weight (about 14-lbs). Nevertheless, he now has to begin eating real food and if that causes nausea to resume, we will ask about that patch. However, while he was hospitalized, they tried a patch one day but it caused mental confusion. (I don't know if it was scopolamine but whatever it was, side effects included confusion, just as scopolamine does.)
I'm sorry and heartbroken to read your story about what you are going through with your husband, your husband medical situation is almost identical to my husband who is 45 years old he was 300 pounds before his surgery last August and he now weighs a little over a 170 pounds and I'm dying inside watching my husband of almost 30 years suffering and everything I come up with only gives temporary relief. But has your husband tried a scopolamine patch for nausea? It goes behind the ear and is rotated every 72 hours this helped my husband the most for awhile but just like everything else it's starting to not be as much help. If you need anyone to talk to please reach out ❣️
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