Anorexia & nausea 3 months after esophagectomy

My husband did not have the surgery, but he does have a feeding tube and it has been a God send. Saved his life. When diagnosed he could not keep food or liquid down due to a tumor blockage. He was dependent entirely on the feeding tube. Chemo and radiation shrunk the tumor and eventually he no longer needed it. He still has it, doc wants it in for a few more months just in case because he has more chemo coming up. He just needs to keep a dressing on it and flush it regularly. No big deal. Feeding tube allowed him to keep his weight and strength up. It’s not a forever thing. It can come out when he no longer needs it. I would urge him to reconsider the feeding tube.

@caregivernle, I'm sorry to hear that your friend is suffering. Being a long distance caregiver is challenging, but I'm sure he is grateful to have you researching for him.

Please note the Community Guidelines that offer 12 short rules of conduct that help keep the Mayo Clinic Connect community safe, supportive, inclusive, and respectful.

See guideline number 2.
2. Remain respectful at all times.
– Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
– Personal attacks against members or health care providers are not acceptable. Such posts will be removed.

As per the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) I edited your comment questioning the qualifications of another member, who also lives with esophageal cancer and has a wealth of experience to share.

Your friend sounds like he might benefit a team approach that includes physician, dietitian, speech pathologist and possibly a social worker or therapist. I'll point out that dietitians specializing in oncology do much more than suggest diets and what foods to eat. They can also provide assistance with
- managing high risk malnutrition and maintaining nutritional status during treatment
- tube feeding
- nutritional supplements
- general counseling
- providing solutions to problems, including tips for taking food when nauseated
- preventing treatment interruptions
- helping to ease side effects
- improving their overall quality of life
- advocating for the patient
- being a liaison to other team members

Do you know if your friend saw a dietitian specializing in esophageal cancer patients?

Yes of course he did see a dietician specializing in oncology as part of his team at NYU. Basically all the dietician did was tell him to eat small meals, avoid eating late in the day, and avoid fatty foods. The dietician did not get involved after that and has not been proactive despite the fact that his oncologist and surgeon there know he is not eating and not hungry. He had a stay in the hospital as a result of the anorexia. The oncologist there prescribed him dronabinol which did not work for him. And yes he has a team that includes all of the people you mention, however the team is not giving him all the help he needs. Otherwise I would not be posting here for support. His hospital is NYU, one of the leading hospitals, however no one on his team is proactively reaching out to him, and because he has no energy and is losing hope, he is not in a position to reach out himself. There is no patient advocacy happening there on a proactive basis.

I am sorry you felt the need to delete my post. I did not find his comments helpful or insightful and they did not share any personal experience, and also I don't tend to find people who write things like "r u" for are you to be very educated. I am at a point of frustration and looking for actual help from people who have something actually helpful to contribute, like the other two kind folks who responded. I have to say I also found your scolding of me here not terribly helpful either, and also condescending. I don't think I'll be posting here anymore.

I've had a G tube in place for 2 yrs as I was not a good candidate for surgery. It's literally been a life saver. It's allowed me to regain weight and muscle mass. I change the dressing, and clean around the stoma with an alcohol swab everyday and flush it after every feeding or medication administration. Works great for me. I have replaced every 3 - 4 months.

Come chat with me. I'm no miracle worker... just an EC patient... still on my own journey, now 3 years post-op. It is a bitch! But do-able.

I'm interested in the term anorexia here... as if this is self-imposed? Sorry... most of us post-op, early on, well... I wouldn't describe us as anorexic. We simply have other issues related to the surgery and trying to get digestion working once again.

Anyways... here if you need me. Much to discuss.

Gary

I am possibly using the word "anorexia" as shorthand for just having no appetite at all. No hunger at all. No motivation to eat or to want to eat. On top of that, he has constant nausea whether he eats or not. And even if he drinks just a little Boost or Ensure, he feels extremely sick, and this is true every time he eats anything at all. I apologize if I'm using the term anorexia incorrectly and maybe I can and should find a different term that doesn't include the implications about deliberately intending weight loss, etc., which he isn't doing. And thanks for asking for a clarification. I didn't realize it meant more than just "not wanting to eat" and so I'm wrong there. [EDIT: I just Googled "medical term for no appetite" and saw this: "The medical term for a loss of appetite is anorexia." So I guess it also means just not wanting to eat.]

I posted here hoping to see if there was anyone else with direct experience with this and had a suggestion about what could work. I can't poke or prod his "team" at NYU unfortunately. But I can make suggestions to my friend to carry in to his meetings with doctors or to make special appointments to address these concerns. His brother has recommended a feeding tube and there are a few folks here who have supported this idea. So if I can call him and let him know it might make a difference and give him examples of people who it has helped and how, it might motivate him to actually let them do it.

I am possibly using the word "anorexia" as shorthand for just having no appetite at all. No hunger at all. No motivation to eat or to want to eat. On top of that, he has constant nausea whether he eats or not. And even if he drinks just a little Boost or Ensure, he feels extremely sick, and this is true every time he eats anything at all. I apologize if I'm using the term anorexia incorrectly and maybe I can and should find a different term that doesn't include the implications about deliberately intending weight loss, etc., which he isn't doing. And thanks for asking for a clarification. I didn't realize it meant more than just "not wanting to eat" and so I'm wrong there. [EDIT: I just Googled "medical term for no appetite" and saw this: "The medical term for a loss of appetite is anorexia." So I guess it also means just not wanting to eat.]

I posted here hoping to see if there was anyone else with direct experience with this and had a suggestion about what could work. I can't poke or prod his "team" at NYU unfortunately. But I can make suggestions to my friend to carry in to his meetings with doctors or to make special appointments to address these concerns. His brother has recommended a feeding tube and there are a few folks here who have supported this idea. So if I can call him and let him know it might make a difference and give him examples of people who it has helped and how, it might motivate him to actually let them do it.

And apologies for my confusion of the use of anorexia. I tend to think of anorexia as an eating disorder, where the person has a disturbing vision of their own body, and abhors gaining weight... and simply won't eat. Not that a person cannot be a true anorexic and still have EC... but this is rare... and to be honest... having esophageal cancer might be an anorexic's dream come true... because they are going to lose a ton of weight, without even trying!

But for us EC patients, all along our EC journeys... we lose weight for a variety of reasons... and they can be for completely different reasons too. Stress and depression and hopelessness when being diagnosed. Chemo and radiation treatments can cause much nausea... loss of appetite... loss of taste buds... more reasons to lose weight. And if symptomatic enough... the ability to swallow can be lost completely (I saw this... could not swallow a sip of water for 3 weeks). And then, if esophagectomy is done... post-op is a crazy journey unto itself... more reasons to lose weight as our bodies try to once again figure out digestion (and this can take a year or more!). Much to discuss still... we're just scratching the surface here.

I believe that "anorexia nervosa" is the accurate medical term for people with the intent and desire to be skinny who starve themselves. Etymology: From the scientific term anorexia nervosa (1957), from the symptom anorexia (“loss of appetite”), from Ancient Greek ἀν- (an-, “without”) + ὄρεξις (órexis, “appetite, desire”), and Latin nervōsa (“nervous”).

It seems to be a subset of anorexia, apparently, which simply means in Latin: without appetite or without desire.

He is now four months post-op. He did not have chemo or radiation. But he did have to have a tracheostomy, and the tube was removed a few weeks ago. He can physically swallow. So his chief complaints are lack of hunger, constant nausea, and if he forces himself to eat or drink even a small amount of food, he feels very sick.

I don't want to go to phone conversations and neither does my friend. These discussion boards are extremely helpful for others to read so I think this is the best way to communicate. But not everyone may want to share in writing. I am VERY appreciative of the helpful comments most have given here. At this point I am going to see if he will get the feeding tube. I spoke to him yesterday and will again today. He was struggling with drinking and keeping down a half bottle of Boost and was feeling extremely nauseated.