Feeling sick after eating. Can you help, please?
Dear all,
My name is Michaela and my husband underwent Ivor Lewis surgery at the end of 2021, he also received 6 chemo cycles, just in case, because he only had this one tumor and one lymph node which was suspicious. He developed this tumor due to his decades of reflux caused by histamine intolerance which has become worse, we think, after the surgery.
To make a long story short - I now leave out all the details - my question is: He still feels sick after eating after 4 years, he hates eating and is scared of feeling sick afterwards, getting histamine flashes and dumps. Anybody who experienced the same and can help? Thank you so much....Michaela
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Well... I'm well over 5 years post-esophagectomy (and now 67)... and yes, that first year sucked... many tummy aches and ass explosions... soft wet poops for most of that first year. But slowly my body re-wired itself and figured out digestion without those 2 vagus nerves. My new stomaphagus slowly expanded and I can now eat a Big Mac and some fries and my small drink... in about 10 minutes. I'm pretty full... but I'd say I'm pretty much back to normal. But I admit there were some dark depressing times on my post-op journey.
But since we run twice-weekly EC and Esophagectomy Zoom calls... we see a bit of everything... from new treatments, crazy side effects, stage 1s thru stage 4s... and we discuss the post-op journey quite often. And the problems are numerous... from anastomosis issues to various other strictures developing post treatments, to pylorus and motility issues, to absorption problems... you name it. We've had some who required revision surgeries to correct a "botched" Esophagectomy (if that's the proper use here).... some of these folks had "sumps" or side pockets created in their new stomaphagus... and others... their new plumbing was just not hanging straight and true... causing them issues.
So... what does your latest endoscopy show? Has a barium study been done... motility good? What is seen on scans, in terms of structure abnormalities... like paraconduit hernias?
Anyway... feel free to pop on any of our Zoom calls, Wednesdays at 6pm Eastern, and Sundays at 9am Eastern. Be well. I sent you the Zoom link in a pm to you.
Gary
Southern California
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2 ReactionsThank you so much, Gary, you are amazing. Well, 'inside' everything is absolutely perfect, the way it should be they told us. It is his histamine intolerance that really makes him feel sick, we think. But since we don't know about any other issues the surgery and the new 'set-up' can cause, we thought, perhaps anybody with histamine intolerance had the same experience. Thank you for the ZOOM link, and thank you for all the time you spent sending this reply.
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3 ReactionsI will assume ALL of these have been tried:
For histamine intolerance after an esophagectomy, focus on a low-histamine diet (fresh foods, avoiding fermented/aged items), supplements (DAO, B vitamins, Vitamin C), managing stress, ensuring good sleep, and working with a doctor or dietitian for personalized guidance, as the surgery impacts digestion, making dietary management crucial. Identifying triggers with a food diary is key, and addressing potential underlying issues like eosinophilic esophagitis (EoE) might be necessary, notes this article from Fact vs. Fitness.
Dietary Management (The Core)
Focus on Fresh: Prioritize fresh meats, fish (caught and frozen quickly), most fresh vegetables (avoid tomatoes, spinach, avocado, eggplant), and non-citrus fruits (apples, berries, mangoes).
Avoid High-Histamine Foods: Limit aged cheese, fermented foods, processed meats, alcohol, leftovers (histamine increases with time), citrus, and nuts.
Identify Triggers: Keep a detailed food diary to track symptoms and potential culprits like citrus, dairy, or leftovers.
Consult a Dietitian: Work with a professional to ensure nutritional adequacy, especially on a restrictive diet post-surgery, notes this YouTube video from The Fiber Fueled Cookbook.
Supplements & Medications
DAO Enzyme: Consider taking diamine oxidase (DAO) enzyme supplements with meals to help break down histamine, suggests this article from the National Institutes of Health.
Antihistamines: Your doctor might suggest H1 or H2 blockers for symptom relief, say this article from the Cleveland Clinic and this article from Verywell Health.
Cofactors: Vitamins C, B6, zinc, and copper support histamine breakdown; check with a doctor if you're deficient.
Lifestyle & Other Considerations
Stress & Sleep: Manage stress and aim for 7-8 hours of sleep, as poor sleep worsens symptoms.
Gentle Exercise: Regular, moderate exercise helps.
Check for EoE: If symptoms persist, ask your doctor about testing for Eosinophilic Esophagitis (EoE), a related condition.
Key Takeaway
Work closely with your medical team (surgeon, dietitian, allergist) to tailor a plan, as your specific surgery alters how you digest, making careful food management and nutrient balance essential.
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2 ReactionsGary, you are incredibly knowledgable. Yes, all of this tried, tested and partly successful. We have tried several dieticians, the doctors are great, because they saved his life, but they are not very helpful regarding post-surgery symptoms: "Seems like you have to live with it!" , " We cured you but now you have to get back to life yourself!", things like that. Doctors in Europe are very much different than doctors in the US, I am afraid, that's a cultural thing. Sleep is a very delicate matter, at full moon it seems, he cannot sleep for several days, then after a dump, histamine flash with diarrhea, etc. he sleeps for hours, but not during the night. Fortunately he does not show any symptoms of EoE, all is good and perfect inside. Any of the vitamins, blockers, etc. you mentioned he has tried and many of them he takes, H1 and H2 blockers very often, the only thing that helps, Dao enzyme supplements he takes loads every day before the meals and after, and it helps, without them, he could not eat anything. His hunger has not come back yet (they said it will take about 2 years) and his taste is obviously very different than before, as is his smell. Vitamine C he cannot take at all, Vitamine D, which is so important, only very low amounts in multi-vitamine supplements. I did some research yesterday with ChatGPT telling me L-Glutamine (which he has been taken for over a year now) and Sodium Butyrate. He bought the latter today in order to try it, perhaps it will help, fingers crossed, to support his intestines with breaking down histamine better. He has the feeling that when the weather changes, which has been the case all summer this year, it is worse and when the weather is stable, his entire condition is better. We are just guessing, trying to find any regularity or anything we can pin it down so that he can avoid things, but he avoids so many things that his quality of life really is not so glorious. His mood, of course, is not the best, he is very exhausted so even moderate exercise is too much for him and all of this makes him very unhappy and hopeless. At the moment he is better, i.e. he sees more hope and some things in life which are good, but he is very desperate since there is no regularity, nothing he can pin down and do. This is so frustrating. He has tried so many things, even before surgery, and nothing helps. His tinitus is not helpful either and due to AI taking away our job (I am an interpreter and we are organising teams of interpreters) we had 2 very, very bad financial years, which needed re-inventing ourselves and finding new ways to making money again, so this was not helpful either. Sorry for being so honest, but context usually helps to be able to help others. He is taking all kinds of supplements, fortunately, because the first two years he hardly ate anything and did not take any supplements. He started with supplements in March 2024 and it got better, but in the last months it got worse and we don't know why.....I don't expect you to reply again to this long post, I am sorry....thank you for listening and taking the time to speak to me/us
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2 ReactionsI had the same “sick” feeling and dumping for over a year after surgery. I started paying closer attention while eating. I realized that I got a runny nose and my mouth started watering while eating. As long as I stopped eating as soon as either of these things happened the “sick” feeling and dumping didn’t happen.
I’m sure you were told to limit eating to 1-2 cups 5 times a day. What I didn’t understand in the beginning was this includes drinking. So if you drink 8oz of water with your meal you definitely have to stop at a cup of food. I would recommend only taking necessary sips while eating
Hopefully this will help. Life is definitely still a learning process curve even after more than five years.
Best of luck
Lori
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2 ReactionsThank you so much, Lori. He eats very slowly, drinks hardly anything at meals and not much during the day, which he says, is not sufficient and makes it even worse. So he really tries hard to drink more tap water (which is very good in Austria). His stomach seems to be smaller, but not so small anymore like after the surgery, so we are clueless what is the cause of his feeling sick. But thank you again for your tip. Much, much appreciated.
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2 Reactions@michaelaaustria I don’t drink a lot myself. I tried incorporating more soups and things like ice cream and popsicles. I try to stay away from what I consider “useless” foods like breads and pasta, placing most of my attention on protein and fiber.
Lori’s
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2 ReactionsHi,
I have had a lot of digestion, malabsorption, weight loss issues in my 8 years post-esophagectomy. What I've found is to chew, chew, chew the food until it is totally liquid which makes it easier to digest and move through the body. And....very importantly.... I never drink anything while eating. minimum of 30 mins, preferably 45 mins, before I consume any liquid because it takes up too much space. It's time consuming and a pain to orchestrate but after a while it's just part of the every day normal routine. But it helps and I hope it helps your husband as well.
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3 ReactionsTHANK YOU SO MUCH, I will tell him. He really chews a lot, he really takes his time to chew and he hardly drinks with the meal, but I will tell him to wait for 45 mins before drinking something. THANK YOU SO MUCH and all the best to you!!!!!!
@lleigh Thank you again, Lori. All the best and I will share this with him!