When I came home after surgery for esophageal cancer, a new era of my life began. Esophagectomy recovery meant learning how to eat and sleep again. Although my stomach was now smaller, I still needed the same number of calories to maintain my weight.
In addition, I needed to sleep at a 30-degree angle so gravity would not move the contents of my stomach into my throat at night. Because the sphincter valve that acts as a lid on my stomach was removed during esophagectomy surgery, there was concern that I might aspirate gastric content which could lead to pneumonia or even death.
In addition to these two major changes in my lifestyle, there still remained the fear that I might not have much time left to live. Should I be putting my house in order and making things easier for my wife to carry on after I was gone? I decided to ask her to start handling our personal finances. If I died, at least I knew she would be equipped to manage our finances after I was gone.
Depression Plays A Role
After surgery, I found that depression was causing me to feel too tired to exercise. I would excuse myself by reasoning, “If I am tired now, how much more tired will I be after I exercise?†As a result, I became a true couch potato.
Because I had no appetite, I wasn’t eating properly, and I became focused on watching the clock. My wife would ask me what I wanted to eat and she would go about making it.  But when she put it in front of me, I just couldn’t eat it.
Although my wife displayed a lot of patience with my lack of appetite, I continued to lose weight. When I went for my post-surgical check-up, my doctor saw that I was continuing to lose weight (from 250 pounds before the diagnosis to 170 pounds after the surgery.) He told me that if I lost another pound he was going to put a feeding tube in me.
Well, that was the turning point of my esophagectomy recovery! From that time I began to take ownership of my health and the life in front of me.
The Importance of Exercise For Esophagectomy Recovery
I began to exercise, which helped me heal quicker. It also activated my appetite and my mental outlook became more positive. I realized that I did not have any control over tomorrow, but God does, so there was no point to worry about something I had no power to control. I decided that I would live each day to the fullest, and if God decided to call me home, I would be ready. My chosen life saying, Make where you are better because you are there, was still my focus, but now it had a new sense of urgency.
Esophagectomy Recovery: Relearning To Eat
I knew I needed to be proactive about my esophagectomy recovery. That meant relearning how to eat and get a good night’s sleep if I wanted to fight the potential for recurrence. I found that eating smaller meals was the key to getting enough nutrition to maintain my weight. In time, I would regain some of what I had lost during seven months of chemotherapy, radiation and surgery.
Instead of the standard three meals a day, I needed to eat six times daily. My stomach was smaller now so my eating schedule now included two breakfasts, two lunches and two dinners. What I would have eaten in the past was simply cut in half and I ate half at one seating and the other a few hours later. Instead of a full sandwich for lunch prior to the surgery, now I would have half of the sandwich at noon and the other half at 2:00 PM.
Sleep Becomes A New Experience
During the chemotherapy phase of my treatment I wore a chemo pump that required me to sleep on my back.  After surgery I continued to sleep in this position but I also needed to make sure that the back of my head and upper chest were above my stomach. I used a medical wedge pillow to ensure that my upper body was properly elevated in order to avoid the danger of aspiration during sleep.
The first two months of esophagectomy recovery were definitely a challenging experience. But relearning such basic functions as eating, sleeping and exercising proved to be the essential elements of my post-surgical recovery.
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Bart Frazzitta is an esophageal cancer survivor and the founder of the Esophageal Cancer Education Foundation (ECEF). Read more of his story here >
- Esophageal Cancer: A Brutal Diagnosis
- Esophageal Cancer Treatment: Chemo & Radiation
- Esophageal Cancer: Overwhelming Emotions
- Surviving Esophagectomy Surgery
I had an Esophogectomy in 6/2015. i am depressed, i hate the reflux. i don’t sleep well. i got an fungal infection in my esophogus. do you know of any support groups on eastern long island?
Hi Donald
I don’t know or any support groups on Long Island. Our support group meets by conference call once a month. If you would like to be a part of this group please send me an email at bart@fightec.org. Our group met last evening and we will meet again on October 21st. If you would like to discuss your condition please call 732-385-7461 and we will see how we can help you out.
Take Care
Bart Frazzitta
Thank you for producing this article. Unlike most patients, I received an esophagectomy unrelated to cancer. I was in a bad accident in March & being just 20 years old, my life has definitely changed. Though I deal without the scares of cancer, depression has definitely sunk me under. Reading this helped me realize that I am not alone. So thank you. May your days be blessed and you recover fully to enjoy life as it comes.
Tessa
Hi Tessa
I have found that after my esophagectomy, for the cancer I had, depression also entered my life. I found that exercising helped. I would walk 1-2 miles 3 times a week. Given your age you should join a gym and have them give you a program that will help you with cardio exercises. It will help your self image as well.
Take care and remember God loves you.
Bart
I just had one in June
Wendell
Go to our web site https://fightec.org and look at patient services. We have a book called Esophagectomy Post Surgical Guide Q&A that will be a help in identifying issues you might experience. WE also have a conference call support group that meets once a month in the evening that brings patients together in one phone call. It gives people a sense that they are not in this journey alone.
Bart
I was cured from herpes with herbal means
God be with you
Email:Robinsonbucler ((@gmail)). com__________________ ❤
Hi tessa, i am going to have an esophagectomy surgery next week. Please i need your support and advice because mine is also not cancer related but due to an accident.. I am also very young. Thank you. Please reply
Hi Ester
See my previous message. If you want to talk about where you are at you can call me at 732-385-7461
Take care
Bart Frazzitta
It’s heavy no lie
c
Challenges include:
*need to eat with NO appetite
*maintain an active routine WHILE weak
*can’t sleep horizontal anymore – alternate between a small couch and a recliner with lots of pillows
*need to stop going to the weepy-feel-sorry-for-myself place (although initially 1 x day a good cry has been therapeutic)
*feeling scared – hard to avoid the mortality considerations – want someone to save me
blessings include:
*My wife Susie (can’t say enough)
*My Guru – the only alternative to the abyss
*I’m alive- cancer-free vs terminal diagnosis – cancer caught very early – no need for chemo or radiation
*moral support of many family and friends
could have been worse – should return to a normal albeit changed life within a couple of months
recipe to a successful event
Rick,
My surgery was in July of 2015. All of the points you mentioned are very valid.
Mine was diagnosed early as well so I am now cancer free as well.
People need to know that years of dealing with acid reflux will most likely cause the condition Barretts Syndrome of the esophagus and this will quite possibly develop into cancer.
So glad you are doing well. We are cancer survivors and our lives have changed but we are still here.
Jim
Thank God
Hi…my mother in law is diagnosed with esophagus cancer in early stage..she got operated last week..she is 60 years old.can you have any idea that in how many months she will be normal.
HI Ankita
Since you asked the question about your mother in law let me say that I am going on 17 years post surgery and everything is a new normal. The two thinks that are different is eating and sleeping. I eat smaller meals which is probably good for everyone and I sleep on a 25 degree angle, which when you think of it everyone should sleep with their heads above their stomachs.
Each person is different and will respond differently. You need to keep her positive about her recovery and you need to follow some basic rules. They are:
When she gets home make sure she exercises. Walking 1 mile 3 times a week will enhance her recovery process.
After the feeding tube is removed, make sure she eats 6 meals a day(2 BK,2 lunch and 2 supper). Do not let her skip a meal. Whatever she ate before she was diagnosed cut it in half and have it at two sittings.
Buy a medical wedge for her to sleep with.
Get a copy of “Esophagectomy Post Surgical Guide Q&A” from Amazon or your local book store. It is published by Authorhouse.
Take a look at http://www.fightec.org for additional information about esophageal cancer.
Good Luck
Bart
I am the caregiver for my friend of 30+ years. She had an esophagectomy on 11/13. We are having a problem eating the right things and the right size portions. And right now she is in pain (probably from eating too much). We just can’t seem to figure this out and I am totally at a loss! She is still weak (has lost 50 lbs thru chemo/radiation)but not much since surgery. I am just having a hard time figuring out how to help her with her diet. We have tried adding protein powder to some things, (she is not a person that likes shakes). I don’t know what to do next. I guess I really just need to know–do I cut portion sizes way down and offer them more often?? HELP
Hi Karen
I am sure if we can talk to her it will help.
Bart
I am Karan Veon’s friend. I have been having a terrible time with my diet. Doctor says it’s normal. Feels terrible, I am very weak.
Hi Nancy
There are so many questions to ask as to why your diet is not working out for you. It would be easier if you were to give me a call and we can discuss it. It could be you are eating to much at one time. Are you eating 6 meals a day? Exercising could be another area you need to look into . Are you walking 1 mile three times a week? Lack of exercise can cause you to heal slower and can leave you depressed. An important key is exercising even if you feel tired. You can reach me at 732-385-7461
Bart
Hi Bart! Nancy is sending you her information at this time–nankar@suddenlink.net–Her name is Nancy Irick. We are still having problems with food–she is on soft diet now, still not moving around much and is vomiting after eating. I don’t know if it is the wrong kind of food or if the portion size is wrong! I feel guilty for not being able to get a handle on this for her. I said we may need to go back to full liquids or just try smaller portions. ????? don’t have a clue and feel helpless!
Karan
I did receive a note from Nancy so I will deal with her directly. You are a caring person and thank you for that.
Bart
I’m not sure how this works. I was diagnoses owed in Aug 2014. I wentered through chemo, radiation, and surgery I ended up on life support two week hospital stay turned into 7 weeks. I am now doing well a d that’s what scares me I was told I had a 40% survival. I still have problems here and there but nothing major. It seems I’m waiting for it to return. My attitude through all of this has been and most of the time still is positive it’s the 40% survival rate that has crept in and terrifies me. I have lost a lot of weight but it’s so hard to eat when your not hungry. I would be grateful FOR any suggestions
First to address your not being hungry. You need to eat by the clock and you need to eat 6 meals a day (2 Breakfast 8:00 Am and 10:00 AM, 2 Lunches Noon and 2:00 PM and 2 dinners 4:00 PM and 6:00 PM). You need to exercise walking 1 mile at least 3 times a week.
Now let me address your comments about having a 40% survival rate. What is your survival rate in not being hit by a car tomorrow? what about a tree falling on your house and killing you? What I am saying is you have no control over what is going to happen tomorrow so why worry about it.
When you think about it the passed is the past you can only learn from it, the future you have no control over it so why worry about it, so let’s focus on the moment we are in right now and live that moment to the fullest. A saying I try to live by “Make where you are better because you are thereâ€.
Your future is in God’s hands, so pray to Him to eliminate your concern. Growing close to Him makes your 40% more acceptable.
Have a Healthy and Happy New Year
Bart Frazzitta
President
I was told that by undergoing cancer treatment before surgery my survival odds went from about 20%, to 55 or 60%. My surgery was in May, and my first set of test results were good, and I’m now cancer free. Since you made it this far, things are looking good; after all, all they can do is buy us time. May you have many years more!
Hi Stacy
WE have conference call support group meetings once a month for patients and caregivers who have undergone the surgery. You should join us and you can hear and talk to people who are on the same journey. ECEF web site is http://www.fightec.org and if you hit the join button (no Cost) and click on the support group link I will send you the contact information.
I was told that the first 2 years is where a recurrence is most likely to occur. The chance decreases each year until they say it is unlikely that a recurrence will occur after 5 years.
Take care
Bart
God bless you
Hi Bart, I’m glad I found this note and thank you for the wise words. I had an esaphogectomy in 8/15 due to end stage achalasia (not cancer). Many of the issues you raise here are true for me. I probably stayed on pain meds too long which prolonged feelings of lethargy and lack of energy. I’m back in the gym and feeling mentally stronger. Not 100% but much better.
It is great hearing you are on the right path and doing well. Keep up the good work and thank you for sharing this.
Take Care
Bart
I just had an esophagectomy 2 weeks ago for end stage achalasia. I am home with a feeding tube until I can eat the required number of calories. I am walking three x per day and trying to eat something every 2 hours. Thank you for the encouraging blog remarks!
Diane
Keep up the good work. Doing what you are doing will speed up the recovery process at least that was what happened to me.
Take care
Bart
Hi, please what are the things i can eat two weeks after my surgery as i dont have a clue and i still use my feeding tube. Thanks
Hi Ester
If your surgeon has given you the direction to start eating regular food in addition to the feeding tube nourishment you should eat soft food. Pudding, scrambled eggs, clear soups. The hospital where you had the surgery should have a nutritionist on staff that should tell you what they think you should be eating at this stage of your recovery. Our Foundation has Conference Call Support Group Meetings on a monthly basis for patients who have gone through the surgery. If you go to our web site http://www.fightec.org and click on the JOIN ECEF button and click on the support group question I will send you the information. No cost involved. We have two surgeons on each of the calls we have. The conference calls are in the evening at 8:00 PM (ET). Look forward to hearing from you.
Bart Frazzitta
President
Hello! I am so glad I came across this blog. My dad got diagnosed with stage 3 esophageal cancer in May 2013. He went through 40 rounds of chemo, and 40 rounds of radiation. Then he also had an esophagectomy after, which removed 1/4 of his stomach an 2/3 of his esophagus. My dad is now 60 years old. He only weighs 150 pounds, and that’s his most recent weight after gaining like 10 pounds. He did have a leak after the surgery which was fixed. The issue is that he throws up practically everything he eats…and it’s been 2.5 years since his surgery. He doesn’t eat a bunch at once, and also sleeps propped up at night. I’m getting extra concerned because he rarely keeps food down, and it’s hard to hear your dad get sick every single night. He’s simply hungry, and just wants to enjoy food again. If you have any advice, please let me know! Thank you! God Bless!
Jenna
After two plus years the doctors should be able to diagnosis his problem and come up with a solution for him.
All I can say is if he were to take a mouthful of food and stop would he throw that up? if not what about two mouthfuls? Continue that until you fins his limit. Has he had an endoscope recently? This may give them a clue as to what is happening in his digestive track.
You may want to have him keep a food diary to see what he is eating and when, and see if that tells you anything that would help his situation. Make sure he eats slowly and he chews his food well.
Good Luck
Bart
Hello. Ive just read your entry re: your Dad’s complications. How is he doing now? My husband is going through the exact same as we speak.
Hi. I had an esophagoctomy about a year ago. It sounds like you have a lot of acid and that might be why he throws up. Ppi meds are ok but not long term. Slippery elm helps me a lot for the acidity, diarrhea and pulling feeling. Good luck and god bless you
My husband was diagnosed with stage 3 esophagus cancer in 06/2009 and after chemo and radiation therapy surgery was done to completely remove the esophagus and his stomach. Dr. Kenneth Kesler from IUPUI Indianapolis, In saved his life. My husband eats normally and has no problems eating. The problem that he has is the food that he eats does not stay in his system long enough to be absorbed properly, We are having a lot of anorexia issues. Severe hypotension when standing. Does anyone have any suggestions on what they have done.
We received your message and are looking into it. We should be back to you shortly.
Bart Frazzitta
Peggy
It in uncertain as to what is causing the problem. The suggestion is to see your internist to see what is going on.
My son 23 years , 3 weeks ago have just total esophagectomy (not because of cancer). After this surgery he was often coughing and vomiting, even when he is sleeping.His voice did not come yet. What should we do to solve this problem
His coughing and vomiting while he is sleeping could be because he ate late at night and then went to sleep. Try and have him not eat anything up to 3 hours before he goes to bed. Not sure about his voice comment. He should talk to his doctor about this.
Thank you for your quick response. We will try to do that. Is the rest of his life would be like this ?
There is a book on our web site Esophagectomy Post Surgical Guide Questions & Answers. You should get yourself a copy of that book. Does your son exercise? He should walk 1 -1/2 miles at least 3 times a week. He needs to sleep on a 30 degree angle. He needs (when he can eat if he is not on a feeding tube) 6 small meals a day. Since he had his total esophagus removed you should get directions on nutrition from the Institute where he had his surgery.
Hi, I had esophagectomy two years ago, I lost my voice also after surgery, I went to an ENT doctor and was told my vocal cord on the right side was paralyzed. So I went to a speech pathologist to get another opinion, and we did exercises for my vocal cord.
I can now speak without a problem I sound normal again. It must have just been a short term thing. But if I talk a lot during the day it does get horse. So I would try to go to an ENT and have him look at your vocal cord.
I had a esophagectomy 0n the 17th of November 2016 after the doctor burnt a hole during a Afib procedure in my esophagus.
lost 2/3 of my esophagus and don’t have a stomach anymore. I am 72 and lost during this time 30 pounds. a long scar in front and back hurts, pain pills don’t help very much. I cant sleep. eating is a problem I try to cook me my food compare to the recipes for it. I walked and even do light water exercise. Now I am going backwards in my recovery. I feel like something is in my throat, I have dumping problems, stomach? ache and nothing stays in. I am not hungry and eating is a problem.
I can cry all the time because I am so down.
I really don’t know what to do anymore.
anyone has the same problem, I feel like letting my self down, no energy to pick myself up.
Hi Elke
Let me better understand your condition.
You indicate you lost 2/3 of your esophagus and you don’t have a stomach anymore. Are you saying they removed your stomach when they did the esophagectomy?
The scars you mentioned I also have so that is not unusual. Since you are only out about 3 months the pain could still be there but the pain medication that they have given you should work. I suggest you talk to your doctor about this pain.
I will assume they did not take your stomach out in addressing your eating problems.
First of all you should eat 6 meals a day. 2 BK, 2 lunches and 2 dinners. Whether you are hungry or not you have to eat all these meals. You may need to eat by the clock. If it is 12 noon have a half of sandwich then at 2:00 PM have the other half. Dumping is part of not eating a balanced meal. Make sure you have protein fat and carbohydrates at each meal. Dry not to drink significant fluids with your meal as this will take up space in your stomach that you need for calories. Drink the required amount of liquid between meals so you stay hydrated.
The sensation in your throat could be you need a dilation. You should talk to your doctor and explain this feeling to him and see what he says.
It seems like your experiencing depression. Try an exercise on a routine basis. Try and walk 1 to 1 1/2 miles 3 times a week or do water exercising. If your depression continues you must see a doctor.
We have a conference call support group of patients who are recovering from their esophagectomy surgery. WE meet by conference call once a month in the evening. If you would like to be part of that call please let me know.
Good Luck
Bart
My wife had a total esophadectomy where they used her stomach for a new conduit. What is the number for the conference call and when
thanks
Mike
How can I obtain a copy of the Post surgical guide?
Mike
HI Mike
You can go to our web site http://www.fightec.org and you will see the book. Give us a donation of whatever you want and we will send you a copy of the book or you can buy the book at any bookstore for I think $18.00. It is published bu Authorhouse.
Take Care
Bart
HI Mike
You need to go on our web site http://www.fightec.org and click on the “join” button and click on individual and then on the support group question. I will then send you what the group is all about and if you want to be a participant in the group you can send me an email and I will put you in the group.
Take Care
Bart
Hi Bart,
Thank you for your helpful answer ,after I wrote you I went to the doctor, he said the feeling I have that some is in my throat should get away in time. I still have a stomach but it is like a tube from the stretching.
After I wrote you I got more sick nothing stayed in and I lost 5 more pounds which is not good, now I weigh only 124 and this is not good.
I try to eat more often but in the morning I be sick most of the time and I have to force me to eat. I really try to make me oatmeal, grits or soft boiled egg, I really don’t know what to do.
I buy me marrow bones boil them a long time to get all the nutrition out and make me vegetable soups.
Start to do exercise and even go to physicle therapy for my scarfs . I have a long scar in front and left side on my back. I know I should be thankful to be alive but I still did not come to terms with my condition. I was healthy till a hole got burnt in my esophagus after an Afib procedure.
I hope after all I read what other patient go through I should be blessed.
I will work on me, I hope to get my eating problem under controll, loosing 30 pounds all together is enough.
Thank you again for your encouriging words, I will keep in touch with you.
Elke
Elke
We should talk. Call me when you have the time. 732-385-7461
Bart
Hi Bert
Thank you so much for your call, somehow we got disconnected, but hearing your advice and you you cared enough about me made me feel good.
I looked for my timer and set it for 3 1/2 hour so I eat to the same time every day.
I know I also don’t drink enough which is not good.
Most of the time I am not hungry or thirsty so I just have to push myself more.
I do some exercise but I walk every day, but sometimes this is a struggle, I just don’t have enough energy.
Sometimes I have a hard time to except my condition, but after I read your story and how you picked yourself up after loosing more weight, encouraged me to do the same. Thank you again for your call I really appreciate it
Elke
HI Elke
Sometimes the lack of energy or not wanting to walk saying it will only make em more tired may be the start of depression. If you feel it please see a doctor.
Take care
Bart
Hi Bart,
You are really gave me a push when you said it could be depression. Went to my doctor he gave me some but I did not tolerated it.
Depression was the last one I needed, so I bought me theThai Chi cd for seniors. I pushed myself to do it every morning, swallowing was still a problem so my doctor changed me to a different medication , and it helped some, I also started to work a little in my garden , just pushing myself to be more active and get my mind off my sickness and pain.
So far I am doing better, but I still have a long way to go.
Eating is also still a problem , the last 2 weeks was the first time I did not loose more weight, I only hope to get some appetit back , right now I only eat because I have to and this is no fun.
I have good days and bad days but I try to fight my way through it.
Walking every day about 1 mile which I try to keep up.
I thank you so much for your encouraging words , hope to give you a better report later.
Elke
Keep up the good work. These challenges that you are experiencing will begin to appear smaller and eventually they will go away. That is what it was like for me. Stay the course you have outlined and take some time each day to just sit in a chair in a quiet part of your house and let your mind be open. I do this not as much now as I did before and it gave me a sense of strength knowing God was with me and I developed a saying that I repeat each time I have to see a doctor for an annual check and that is God sits on my right shoulder and there is nothing that He and I together can’t handle.
Take care
Bart
My wife is recovering from total esophadectomy where they used her stomach for the esophagus conduit. She too suffers with the nutrition specifically as a result of stomach dumping which you can look up on Google. There are ways to control it with diet in some cases. But with my wifes case they expanded the outlet of her stomach to let food pass easily which creates more problems. She gets nauseated and cramping whenever she eats or drinks. We are going to the GI doctor next week to evaluate a drug called sandostatin which is injected to slow down the movement of food. Her condition is complicated by irritable bowel syndrome as well
I just ran across you site. Wish I’d seen it a few months ago when I was at my lowest point. In August 2015 I was a 65 year old breast cancer survivor at my very fittest, exercising and weight lifting and running. Then got my esophageal cancer diagnosis. Concurrent radiation and chemo hit me hard but I recovered taste and energy quickly. Then, however, the operation, 12 hours, knocked me for a loop. The minimally invasive procedure turned maximal when esophagus was being stapled and tore. Was in hospital 13 days, in ICU for two stints, having gotten pneumonia. Had stent put in and it didn’t come out for couple of months. Each time surgeon took a look, he had to replace it. Didn’t get off feeding tubes til March 2016. Went from 115 to 95 pounds. Taste and appetite are coming back slowly but I sometimes feel things stick in my throat and up they come. Also, to my dismay, coffee, chocolate and wine taste perverted. (No lectures please; my daughter gets married in 2 weeks and I’d really like to enjoy a glass of champagne) I’m back at the gym and walking but no way can I run around with my three little grandchildren like I used to. That confuses them and makes me sad. I do understand that healing and recovery can take as long as a year. I could really use a support group. Among other questions I’d love to know if anyone else gets terrible night sweats!
Do let us know if we can join support group or groups. I live in Utah.
HI
Sorry you have been through so much. To address your problem of night sweats, It could be dumpling. Are you eating late before you go to bed? you should stop eating 2-3 hours before you go to sleep. As for feeling like some things are sticking you may need to have a dilation. This is a stretching of the esophagus because the scar tissue is narrowing the opening.
Yes you can join our support group. We will be meeting by conference call this coming Wednesday evening at 8:00 PM (ET). The call in phone number is 1-866-527-8664 and the code to use when prompted by the operator is 6413024625#. Look forward to talking to you on Wednesday. Just a reminder the call is on Eastern Standard time.
Take Care
Bart
My husband was diagnosed with esophageal cancer in August,2015.His first treatments were weekly chemo treatments for four and a half months and then twenty eight daily radiation treatments along with his last month of chemo.After a break of a month he underwent surgery to remove most of his esophagus and one tenth of his stomach. He was hospitalized for three weeks.He left the hospital with a j-tube and instructions for absolutely nothing by mouth.Returning home he had home health services-twice a week nurses for a month, physical therapy for six weeks and he is still receiving speech therapy for paralysis of his left vocal fold. His voice comes and goes.The therapist and his surgeon both feel his voice will return without further treatment.The vocal exercises are very helpful.He had nothing by mouth for five weeks. When we went back for his first post-op appointment he was given a FEES test and was then allowed to have solids but no liquids.We were given instructions to wean him off the j-tube over the next two weeks.We returned in a month for his next post-op.By this time he was eating normally with no restrictions and had gained two pounds. The j-tube was removed.The only food issue he has had is with spicy foods which have been easy to avoid.Before his surgery I would read blogs and wonder how our life would ever be the same.While no cakewalk he really has made tremendous progress and our life is returning to normal.As long as he eats small to normal portions, not extremely hot or cold foods he does very well.He sleeps on a thirty degree pillow wedge and has not had any problem with reflux. I attribute his success to the fact that his surgery and aftercare were done at Duke Hospital. His surgeon, Dr. D’Amico has an international reputation.My husband is seventy years old. His cancer was at Stage three. During the surgery they removed thirteen lymph nodes that all tested negative for cancer.I hope that this will give some hope to the people reading it that are in the same situation that we were in a few months ago. Our goal was for him to walk our daughter down the aisle at the end of May. He will be doing that cancer free. Celebrate every day. All are equally precious.
It sounds like he is on the right path. Tell him to exercise by walking 1 1/2 miles 3 times a week.
It is good to hear that there is a light at the end of the tunnel. Enjoy each day.
Thank you for sharing his experience with us.
Take Care
Bart
Hello Ms. Ganna, read your post that sounds very much like my son’s case. He got 6 chemo/28 radiation and then surgery esophagoctomy on Feb 19, 2015. He too had leak that caused hims stay one more week at the hospital and he lost his voice for almost 3 months. Now his voice is back but gets weaker if he talks consistently. He is recovering but abdominal pain is bothering very much. The doctors treating him have no solution for his problem. Keep worrying how to help him. And praising GOD to save his life to be with his wonderful wife and 2 daughters who turned 10 TODAY, 1st JULY…and the other one 6 1/2. Praying for good health to your husband.
Hello
I am at a loss reading all these posts. I feel like I am a rarity! I am a 58 yr old female who was diagnosed with squamous cell carcinoma in April 2015. I underwent 6 weeks of chemo concurrent with 25 radiation treatments. I had a month to recover before I had my surgery in August 2015 (esophagectomy that lasted 11 hours) I was in the hospital for only 2 weeks, one week was in ICU. I was allowed to have ice chips after 4 days, then I was able to have small sips of liquid. I was even allowed Popsicles. Once moved out of ICU I was allowed to eat food that was puréed. I was able to eat mashed potatoes and broth. On the way home from the hospital I was able to eat McDonalds French fries.(not a lot but I was able to swallow them with no problems). I was also on a feeding tube but was encouraged to eat as much as I could on my own. The goal was to maintain my weight, once accomplished I could go off the feeding tube. During my surgery cancer was found in my fatty tissue. Even though it was completely cut out I would have chemo treatment again (as a precaution). Much more aggressive!! In September 2015 I started chemo treatment again, 3 different chemotherapies that required me to wear a pump 24/7 for one of the chemos. I had more problems with my second round of chemo then I did with my surgery and my first treatment of chemo and radiation. I went camping with my family on Labor Day weekend just after being released from the hospital on August 18th. In November 2015 my treatment was stopped. I had a pet scan that had NO evidence of cancer. Now in June 2016 I am still cancer free. I live pretty normal with what I consider is my new normal way of life. I am able to eat what I used to before I was diagnosed with cancer. I drink coffee in the morning with my breaksfast and occasionally will have a margarita when out for Mexican food. I went camping again in March 2016 and hiked 6 miles with my family ( rode bikes and played a little tennis). I won’t say it was a cake walk, I had to take several breaks but I know I need to build up my stamina. That is what I noticed the most. I don’t have the stamina like I used to but I know this too will pass. Like all of you I sleep elevated (I have an adjustable bed) my doctor has me on Prilosec that I take an hour before I go to bed every night. Yes I have had on occasion some acid come up while sleeping. Doesn’t happen all the time but I see it as my new normal and try to remember what I ate so it doesn’t happen again. I do also get night sweats when I sleep. This is still a side effect from chemo and probably menopause! My husband keeps the house cool for me when we sleep even though he is freezing most of the time. One of the first things I was told by my medical oncologists when he informed me I would need surgery was that the surgery needed to be preformed by a surgeon that specializes in esophagectomy. I was lucky enough to be sent to a surgeon 2 hours away that was a Thoracic specialist!! I owe everything to him!! I know there will be times I might have some pain, food might not agree with me but I am happy to be alive to deal with my new normal. I know in time I will get stronger and stronger.
Please know you will get better too! It saddens me to read so many of you are having problems!! Take it slow, remember you have gone through a lot and you are still here. Dig deep to find your inner strength. You will get through this!! Just remember you will have a new normal!! It may take a couple of years but each day is a good day!! Enjoy life, enjoy your family!!! This too will pass!!!!
Thank you for your comments. Be careful what you eat before you go to bed. You should not eat at least 2-3 hours before going to bed. One thought about the sweating you are going through at night and that is it could be dumping. Check what you have eaten on the day before you have the night sweats. If it is high in carbohydrates this could be causing the night sweats. Just a thought.
Again thank you for your sharing
Bart
My father was diagnosed with cancer in esophagus in the month of June . Then he undergoes 3 chemo on 29th of August he undergoes the surgery . His esophagus with some part of stomach removed. Both side margin came negative in biopsy report ..
He is able to eat food now by mouth .but he is having problem when sitting after food of cough .
Please suggest what should I do .
He is feeling so week he is doing some exercise for breathing but not able to walk more and even I don’t insist as he feels very week as it’s only 15 days of surgery.
He having problem of cough only .how to overcome please suggest
One of the issues that some patients experience is a cough. If he takes a candy to suck on that could relieve the cough. If it persists talk to your doctor.
I have end-stage achalasia and will be going in for my esophagectomy surgery at the end of June, 2016. Thank you, Bart, and everybody else who has written here. This blog has answered a lot of my questions. I already live with a diagnosis of Major Depression and am currently on meds, so that’s nothing new. And I really appreciate your advice to keep in Faith with God. Wish me Luck! Thanks again.
Good luck with your upcoming surgery. We have a book called Esophaegctomy Post Surgical Guide Q&A available on our web site. You should get a copy of it to make you aware of the posts surgical issues you may encounter. I have a saying that I developed during my chemo days and it is ” God sits on my right shoulder and there is nothing that He and I together can’t handle” It has been woth me ever since.
Take Care
Update: The surgery has been moved up. It’s now scheduled for June 13. Once again, thanks again for the info and advice!
We will keep you in our prayers.
Good luck
Bart
Wish you all the best
I am 20 years old and a month out from my partial esophagectomy. After a year of struggling to eat and losing a lot of weight we found that I had a large tumor in my lower esophagus, but luckily it was not cancerous. My operation was May 3rd and they had to take twice as much of my esophagus and stomach as planned. After a few days in the hospital my lung collapsed, my diaphragm herniated, and my colon shifted upward and settled between my lungs. I had an emergency surgery to repair my diaphragm and it prolonged my hospital stay by a week. I am home now and my sister is taking excellent care of me when she isn’t at work at the hospital.
For me, the worst part about recovery has been my anxiety. I have trouble sleeping and when I do sleep I wake up from nightmares about my incisions bursting or my tumor coming back. I find that I am afraid to eat too much, so I tend to under-eat and if I cannot gain weight my doctor is not going to remove my feeding tube. I also struggle to stand up straight and not cradle the feeding tube I have on my left side for fear that it will get stuck on something or someone will bump into it or a little kid will pull on it (which did happen once when it slipped out of my waistband at a family party). I would like to know if anyone else has this issue and if there are any methods you would recommend to cope with this anxiety other than medication. I appreciate any help you can offer! Thanks 🙂
I have never heard of what you have been through. I believe you need a Professional to help you to fight the anxiety and nightmares you are having.
I am not sure how strong your spiritual side is but meditating and taking time each day to be in a quiet place and think of a special positive place and how being in that safe place can be of help to you to overcome your experiences.
Allie, I think professional help is the answer. Check with your surgeons and see if there is anyone in theri institution that can help you.
Take care and let me know how you make out.
Bart
I develop a saying while I was taking chemo and it is God sits on my right shoulder and there is nothing that He and i together can’t handle.
Bart,
I talked to my surgeon and my primary care doctor. They have prescribed me a mild medication to help ease the anxiety when I need it and have referred me to a therapist who they think can help. I am going to give it time and hopefully the medicine and the sessions will help!
Thank you for your encouraging words. I will give you an update in a few weeks.
Allie
good luck
Hi Bert,
I am still doing well but eating is a little problem. I wonder how long it need to get some appetit back or just feeling hungry. On the 17. Of this month they Doctor check my throat to find out while I still have problems with the swallowing.
Sometimes I am going backwards in my recovery , but I try not to let it get me down, which is hard to do.
I do now more waterexcercise and could even swim a little. I always have the pulling in my chest down where they attached the stomach to the esophagus.
Do everyone has this after the operation ,
Thank you so much for all the help you gave
Elke
Hi Elke
I did not have that pulling sensation you mentioned. Just to be safe you should mention this to your Doctor and see what he says. Appetite is something that can take a long time to get back. While you wait for it to return you need to make sure you eat by the clock and not skip any meals. Keep expanding your exercising and that may have an impact of getting your appetite back sooner. Keep up the good work.
Take care
Bart
First, know that you are not alone. As you can tell from this blog, other people are going through something similar. But each person’s journey is uniquely their own. The best advice I can give is to find a person or group to talk about your concerns. Just talking out loud can be very therapeutic. Best wishes and God Bless!
Allie, I had the same anxiety and depression as you. Time may help you I am 9 months past surgery and I am feeling g better as I go. Try to stay strong and keep a active. As weeks go buy your mind will start to feel better then your body will follow.
I went through what many of you have described. While it was all unpleasant the worst time for me was after surgery when the depression started. I tried several drugs from the doctor none seemed to work. I think getti back to work was what helped me most. Life is still a struggle we just have to work at it everyday and be strong for our families. If you are at the begging or part ways in don’t give up it gets better. I am nine months out from surgery now and each week seems better.stay strong and keep fighting
HI Scott
Great advice. We find that exercising can be a help with depression at an early stage.
We have a conference call support group if you are interested. Its meets once a month at 8:00 PM (ET). The people on the call are patients like yourself that have been through the surgery and caregivers who have walked the journey with their loved ones. Let me know if you are interesetd
Bart
I would like to be on conference call. I had my surgery in April.
If you go to our web site http://www.fightec.org and click on the join button and then the individual button you will see a question about the support group. click on that question and send and I will sedn you information about the group. Look forward to talking to you
Bart
I had a partial esophogectomy on July 1,2016, after receiving chemo and radiation for 5 weeks March 28 – May 2. I was diagnosed with stage 2 esophageal cancer after a gall bladder attack in late December. it was found after routine testing. I had to have my gall bladder removed before starting treatment because it was in such bad shape. 1/3 of my stomach and 1/3 of my esophagus was removed, as well as some suspicious lymph nodes. I am recovering well, and eating 6 small meals a day, although I lost 65 lbs between December and August. I was way over-weight to start with, so I am not displeased with my weight loss. I continue to lose about 1-2 lbs a week. I returned to work after being off for 3 months. My main concern is having to take Prilosec to prevent acid reflux. My doctor had me start taking it shortly after the gall bladder attack even I never had any symptoms of reflux or indigestion. I do not want to wind up with kidney disease, liver problems, dementia, vitamin deficiency, or osteoporosis from long-term use. My surgeon told me to keep taking it to help prevent damage to my re- constructed esophagus. Do all post-esophogectomy patients have to take an acid reducer?
I did not have to take any acid reducing medication post my esophagectomy but in our conference call support group we have several patients who continue to have acid reflux post surgery. Although I have not had to try this, some patients use carafate which acts to protect the esophagus from acid. I would check with your doctor to see what his or her thoughts are about this.
You can keep a food diary and see if you get acid after meals and then see what may be causing that acid by referring to your diary. If you never had acid reflux to begin with your doctor (he or she) may agree that Carafate may be a goof alternative to PPI. Proton Pump Inhibitor
Take Care
Bart
My wife had her entire esophagus removed and her stomach was used to make a new one. No chemo. Her problem now is cramping and nausea when ever anything is swallowed, Maybe stomach dumping but no diarrhea. Can anyone help?
Mike
Mike
Have you checked with your doctors or a nutritionist at the hospital where she had her surgery? They can give her a pill for the nausea and see what is causing her cramping I have some questions for you before responding to your question.
How long has she been from surgery?
Is her weight steady or is she losing weight?
Is she eating 6 meals a day?
Is she eating a balanced meal carbs, fats, protein etc.?
This may sound funny but is she exercising. Walking 1 -1 1/2 miles 3 times a week?
Dumpling in lay men terms is when you have a concentration of carbs without the other food groups. Your stomach is emptying while your system is producing insulin to digest the food that was in your stomach and now it is in your intestines and that causes a dumping syndrome or a need to put sugar into your system to offset the insulin. I use a glass or orange juice and some peanuts and within 20 minutes that feeling of lightheaded or sweats or stomach problems will go away.
Take Care
Bart
We know she has dumping syndrome which we found out the hard way. Our surgeon failed to mention that she may suffer from that. When we inquired regarding the diet he said the rehab dietician would take care of it. When we spoke with the dietician she did not have a clue so I researched the UNIV of Pittsburg had a diet after surgery and I gave her a copy . The diet does not work well with my wife as stomach dumping is acute. The surgeon failed to mention stomach dumping we found out the hard way with high sugar nutrician dinks. So we are researching drugs to slow down the food transfer into the gut. There is an injection called sandostatin which we will discuss with a Gi doc next week. Her condition is complicated by irritable bowel as well
HI Mike
Please let me know what the Doctors say about your wife’s condition. We get a lot of questions about this and it will be good to know what the Professional are saying is a way to cure it.
Hi Bart… I have a question regarding sleeping on your back at the 30 degree incline. How do you protect the heels of your feet from becoming raw? Thanks… Dan
HI Dan
I have never had that problem. You may relieve some of the pressure on your heels by placing a pillow under your knees which would stop you from sliding down if that is what is causing your heels to get raw. You may want to wear athletic small socks that have a cushion in the heel.
I will have to ask our esophageal cancer conference call support group to see if anyone else has had this problem.
Take Care
Bart
I just came across your blog and find it helpful and informative. I had a complete esophagectomy in late April of 2016 including the stretching of the stomach. My recovery has been slow but steady. It was not necessary for me to have chemo or radiation. Unlike many of the patients who have blogged, my cancer was at Stage 1 a, discovered very early, fortunately. Despite the early stage I had to spend three weeks in the hospital including more than 10 days in ICU. None of this was the fault of my surgeon who did a brilliant job. One complication was my development of ICUP. This is translated loosely as intensive care unit paranoia. After the extensive time in the ICU I believed that the hospital I was in was in fact not a hospital at all, but rather a go between for Nicarogin drug dealers. As absurd as that sounds I believed it and while recovery from the surgery I was also treated by mental health professionals. I had for the first time a series of panic attacks which I had never experienced previously. I was informed that this condition is rare but is medically recognized.
My recovery has been slow but steady and I expect no miracles. Diahrrea has been a problem but immodium keeps that under control. I have lost about 30 pounds and fight hard to eat. I suffer the same loss of appetite as others but I’m actually getting some hunger back. My surgeon who specializes in esophagel surgery has advised me to absolutely NOT drink ensure. I believe it has to do with its sugar content and the effects following drinking it.
I was naive about the surgery…I didn’t realize its complexity and the long term recovery. I am pleased where I am to date. I believe the suggestions concerning how to eat, frequency and amounts, to be very sound. Likewise I am going to sign up for the local YMCA and begin a modest exercise program.Many thanks for the time and effort you’re putting into this educational effort. I am guided by the principle of one day at a time.
Ira
We have a book called Esophagectomy Post Surgical Guide that is available on our web site. http://www.fightec.org Also we have conference call support group for patients who have been through this disease. You can sign up for this on our web site as well. Just hit the join button and follow the individual category.
I had my surgery almost a year ago. I can’t seemto gain any weight! Has anyone had any success gaining weight after this surgery. I eat the many small meals and try to have high protein snack food with me at all times. Just can’t seem to grow any!
I was diagnosed with EC in January 2016, sent through chemo and radiation, and had surgery in May 2016. I know I’m only out of surgery 6 weeks, but have a question about my voice and breathing. I characterize my voice as a soft spoken Harvey Fierstein. Does anyone know when the voice comes back? If I try to yell, I can’t, then sort of run out of breath. Anyone else have these issues?
You indicate a voice and breathing issue. The breathing issue can be because now your lungs and heart have to make room for your stomach in your chest cavity and after you eat you could feel a shortness of breath because of this. If it happens all the time speak to your doctor and get his reaction to this issue.
The voice issue can be as a result of the surgery. Depending on the type of surgery you had, the surgeon could have touched your vocal cord. If that is the case it could be a lengthy time before you get your full voice back. You should definitely check with your surgeon and he may send you to another doctor to check this out.
I was diagnosed with stage 1 esophageal cancer in May 2015. During the summer of 2015 I underwent chemo and radiation, and ended up on TPN – intravenous feeding. In Sept. 2015, I had an esophagectomy. I lost a total of 70 lbs. I’m trying to regain at least some of that weight, and trying to learn to sleep at a 30 degree angle. I appreciate your blog because it is encouraging. I’m going to try to execise, hoping it will stimulate my appetite and improve my outlook.
Hi Randy
Exercising will help you through the recovery process.You should continue to exercise as it can help avoid a recurrence.
We have a book called Esophagectomy Post Surgical Guide Questions & Answers that you can get on our web site http://www.fightec.org or from your local bookstore. It is published by Authorhouse.
We also have a conference call support group that meets once a month for an hour. We have patient and caregivers calling in form around the country sharing their issues and seeing how other patient have coped with the same issue. You can be a part of this by going to our web site adn clicking on the Join button and follow the individual category.
Take Care
Bart
How do I get onto your monthly conference call?
Thank you so much.
Kathy
Go to our web site http://www.fightec.org and click on the JOIN button on the home page. on the next screen check individual and then answer the question dealing with the support group. We will respond with a description of the group and then ask you to send me an email with whether or not you want to be part of it. There is no cost involved in becoming a member of the group.
Look forward to talking to you.
Bart
As a 31 y/o male, I will be having the surgery due to Achalasia in late October. This has been an ongoing battle for 15 years now. I have good days and bad days, but not having the full ability to eat what I want is difficult and depressing. I’ve undergone two myotomy surgeries that were unsuccessful, but am hopeful the esophagectomy will finally work. My surgery is scheduled at the Mayo Clinic and the docs tell me I’ll make a full recovery!
I want to wish you good luck as you journey through your problem. An esophagectomy will generate eating and sleeping problems , all of which can be overcome in time. Take a look at our web site http://www.fightec.org and patient services. We have support groups that meet by conference call so no matter where you live you are a phone call away from being a part of a group. Also you may want to look into a book called “Esophagectomy Post Surgical Guide Q&A”. You can get it on our web site or in your local book store. It is published by Authorhouse.
Hi Todd,
I have had Achalasia for 26 years. I am 51 years old. I have also had two myotomys; one thorastic/thoracic and a P.O.E M. I have had over 60 EGD’s with dilitation over a span of 24 years. I have seen the doctors in the Houston Methodist Medical center. They want to perform an Esophagectomy with a gastric pull up. I have End Stage Achalasia, and I have a pouch sitting over my diaphram collecting debris. I decided to get a 2nd opiniin at the Mayo Clinic to just fix the pouch. I don’t want an esophagectomy because I already experience many of the problems people have discussed on this platform and I don’t have cancer. Our cases sound similar. How did your experience go at the Mayo clinic? Were they willing to give you any alternatives to this life altering surgery. I am already in poor health and worry I could not deal with additional problems after post op recovery. I don’t want to be left with the question…why did I do this?
Hi Ms. Rice
Did Mayo clinic confirm what your initial doctor at Houston Methodist indicated was the course of action that they wanted to take?
Bart
No. And, the Mayo hospital in MN has misplaced most of my medical records and scans that I had overnighted them almost 3 weeks ago. I called each week and was told they probably weren’t finished scanning them in. Then today, I find out they don’t have the complete set; only 20 out of 120 pages. They know the docors I have seen, and they are the best in Houston Medical Center; Dr. Duncan and Dr. Kim. Now, I have to cancel all my appts, and reservatiins for next week and try to get the info to them again. It is all a bad sign.
I am not sure how far away you are from Mayo but it might be wise to hand deliver what they were sent to insure that they receive it.
Bart
I’m in Houston, Texas. They are in Minnesota. I’m working on getting it taken care of and providing them with an updated Esophagram. Has anybody ever heard about having an esophageal transplant?
Ms Rice
There is a company that is now working on that called Biostage Inc. They have a material that they use and it hs been successful but they do not have approval for it. There may be other companies but that one is one I am aware of.
Bart
I just left a message for Todd and it isn’t showing up? How long does it take for your reply to be reviewed and posted?
We do not have a link to Todd
hi Bert, even after 8 month after my operation I still have problem sleeping and pain around the ribs on my right side.
My doctor suggested yoga, I make light Thai chi , do swimming and exercise, nothing helped. They send me to a pain clinic , the Doctor explained , since they had to go in from the back also this is the worst pain because the nerves are also damaged and this needs a long time to heal. The long scar was healing well but my ribs and nerv pain are still high.
They gave me lidocaine ointment 5% , so far no release from the pain. My next option is a shot to release my pain.
I am so discouraged it takes me so long to be pain free, but I try not to give up. I only want some sleep at nights. I also have problems with diarrhea or constipation . It is going up and down and I try to eat well to get this regulated, but no luck so far.
Still was loosing weight till 2 weeks ago went down to 115pound so the doctor gave me mirtazapine 15 mg ,
Gained 2 pounds which was good,
My esophagus got stretched again since I had trouble swallow my food, which is now better again.
I be so glad to find your helping group,
Elke
Elke
Our support group meets by conference call once a month. If you would like to be a part of it just go to our web site http://www.fightec.org and hit the JOIN button on the home page and check support group. I will get back to you with the phone number and dial in information.
In most cases 8 months should have been enough time to clear the pain from the surgery. You may want to consult a pain management doctor. I know with your pain it might be a problem to exercise. If you can I believe it will help with the pain management. Walk around the mall maybe 3 times a week.
Talk to you soon
Bart
I was diagnosed with stage 3 esophageal cancer at 33 years old I did 5 chemo treatments once a week for 5 weeks and radiation everyday for 5 weeks had a month break and then a complete esophagectimy in May 13th 2016, I continue to have problems swallowing and have to have dilation done every 2 weeks and have since the surgery, I have lost so much weight that I didn’t have to lose to begin with that the doctors are concerned, I can’t drink any kind of ensure boost or anything like that to try and gain weight because it makes me sick and I’m afraid to exercise because I don’t have the extra calories to burn because I can’t get enough as it is, depression is a very real issue along with the sleeping at 30 degree angle especially since I used to sleep on my side, some days are better than others, I still have a good amount of pain, but the eating us the worst.
Adam
The dilation is something people experience. I had dilation 4 times the first year then none there after. You need to do the following based on my 16 years post surgery experience and talking to over 1,000 patients who have gone through the surgery.
1. you need to eat smaller meals more often. You should have 6 meals a day. 2 BK, 2 Lunch, 2 dinner. Eat by the clock. have a half a sandwich at 12 noon and the other half at 2:00 PM. Try not to drink with your meals as that will take up space in your stomach that you should use for calories. Eat food high in calories. Avoid the boost and similar products as some patients can’t tolerate them. You can try instant breakfast as a possibility. Whatever you use to eat lest say for BK split it in half and have it at two sittings.
2. Exercise is critical. You MUST walk 1 mile a day 3 times a week and extend that to a 1 1/2 miles 3 times a week. Exercising will make you heal faster and will help with your depression. Your appetite will come back and it an clear up a lot of problems.
3. I would suggest you go to our web site http://www.fightec.org and JOIN ECEF. we have conference call support groups meetings with patients who have gone through the surgery. You can check that item and we will give you the phone number and code to be part of this group.It will help you feel you are not alone in this journey and it will give you the strength to do better.
If you want to talk about all of this give me a call 732-385-7461
Take care
Bart
My wife have same issues she get esophagustomy surgery and known she’s getting esophagus narrow stricture problem every three week dilation can you please tell me how long is stay like that thanks
HI Kulwinder
That is a question you should ask her doctor. Dilation can be done every day if needed. I had 4 dilations my first year after surgery and none thereafter. in my case the scar tissue stopped effectively blocking the opening in my esophagus. You should check with her doctor to see what he or she thinks as they know your wife’s case. If you would like to be part of our Conference Call meeting please go to our web site http://www.fightec.org and click on JOIN and you can ask this question at our meeting and get the comments form other patients as well as the two surgeons we will have on the call.
Take care
Bart
I also have had most of my esophagus removed and a portion of my stomach not due to cancer, but then also had to have a roué n y due to sever bile reflux. Then al my organs became fused together with scar tissue so had to have a third surgery to separate and place mesh in between. They also had to remove part of my liver , pancreas and intestines. Still have many issues with eating and sleeping. I have sever reflux to the point that it happens even standing up. They put in a spinal cord stimulator last year which helps with the pain some. But nothing helps me sleep. Any suggestions would be welcome please.
WOW you have been through a lot. Have you tried sleeping in a recliner? I find that this works for me. I don’t get the acid reflux during the night and I usually gee a good 6 hours of sleep.
Bart
Hello I have a question my husband us three weeks out if surgery he keeps saying something us wrong because he’s in so much pain he tells the doc n he gave him meds but it’s so painful is this normal and how long us it going to be when ge starts to feel better n the pain subsides
Most patients will leave the hospital with a pain medication. If your husband had the open surgery with major incisions in his stomach and his right side then the healing process could take a month to heal and maybe longer. Pain medication can be a problem with addiction so as soon as you can reduce the pain medication the better. After a few weeks I changed to Tylenol and that worked for me. Check with your doctor before changing and check with him as to how long he thinks you will be on the pain medication.
I’m just three weeks post-op for what was planned as an eosophagectomy, but turned into a remodelling of a colon transplant to fill a large gap in my oesophagus I had 42 years ago as a 4year old.
I had 13 days in hospital in Oxford (I live in Dorset in the UK and believe being referred to a specialist, rather than a general surgeon was really beneficial in my treatment, despite the geographical inconvenience). The surgeon prepared me superbly with lots of discussion on the long recovery period, weight loss, weakness and support of his dietitians to guide me through rebuilding my appetite and weight.
With such excellent care, I feel myself and my partner are able to take each day as it comes and look for small positive steps forward. I’ve had friends drive me to local coffee shops so I don’t feel cut off and can enjoy cappuccinos, as I used to. I try to focus on little treats I can still enjoy, like these outings (not up to it every day as still tiring but still accept its early days and getting tired on these trips is helping me sleep at night.
I was also told I can eat the top of a cheesecake slice with lots of cream, apparently quite easy to digest and full of calories but can now eat guilt free if I’ve had a protein shake or puréed meal a couple of hours earlier.
I am sleeping a lot with long lie ins but get up in the afternoon and don’t nap after 4pm so not to affect my nighttime sleep. I have always had to manage severe acid reflux and aspiration that has let to chest infections, but haven’t had a single incident post-op (fingers crossed!). I think Omeprazole is helping control this, despite only taking 40mg a day (20mg night and morning).
Due to life long acid reflux issues, I have always slept practically upright, with six stacked pillows and one vertically placed in front of them I lean into. I guess it’s awkward if you’re not used to it but it’s become the norm for me and l’m sleeping well now. I think fresh air, any exercise you can manage (even showering and sitting in the garden counts early days) and company of others helps you sleep and lifts your mood.
I am able to focus on how lucky I am to come through this and be going forward, after being poorly pre-op, I look at this stage as recovery and getting myself back again. I wish everyone here a good recovery, even if it takes a year, it’s worth it if we can come out the other side in the end.
Thank you for your story. You seem to be adapting to your “new normal”. A specialist or what we call in the U.S. a Thoracic Surgeon is the only way to effectively handle this surgery. You mention sleeping a good amount of time because you are tired. I would suggest you do more exercising as this will help with your tiredness. We tell patients who are in the same stage of recovery as you are to walk 1 mile a day 3 times a week. Please check with your doctor before you do this and get his or her approval.
I hope our web site http://www.fightec.org can be of help to you with the EC Articles we post daily.
Continue your positive approach and you should do fine.
Take Care
Bart
Hi Bart,
Just stumbled upon this site. I have learned a lot just by reading the comments. I am a new survivor. I had a transhiatal esophagectomy on July 1, 2016. This surgery was performed at the University of Washington Medical Center. I am experiencing many of the issues that other here have described. Forcing myself to eat is difficult, but I am making progress. My worst issue is discomfort in my lower abdomen. It is constant and very annoying, to say the least. Any thoughts on this?
Hi David
You should talk to your doctors about this constant pain. It may involve your ability to digest food but I really don’t know.
We offer a book on our web site called Esophagectomy Post Surgical Questions & Answers that addresses the more common issues that a patient may experience post surgery. We did a survey of the people who have the book and 95% of them said the good was of help to them.
We also have a support group of post surgery patients that meet by conference call once a month for about an hour discussing various issues. It may be helpful to you to participate in this group and share your issue to see of anyone else has had this same problem. I fyou lcikc the join button on http://www.fightec.org it will lead you to the support question. No charge to be part of the group.
Take Care
Bart
I just went to the site to order the book. I am only 3 months post surgery as of yesterday and I am not doing well. Throwing up whatever I eat so I barely eat. I try to sip on an Ensure or Boost each day, but I’m doing well to get a 3rd of it down. Never finish. I cant eat 6 meals. The above may be all I get in for the day. Even water is hard to drink. When will this get better. My stomach is in my throat now (conduit) Why do I always feel full? Like nothing else can go down there? Is it gas? The surgeons just tell me give it time. They are good surgeons but not helpful afterwards.
It could be the valve at the end of your stomach where your intestines and stomach meet may not be functioning well. I would suggest you talk to a gastroenterologist and see what he or she thinks. They may need to do an endoscope to check it out.
I am not a doctor but a 16 year survivor of esophageal cancer.
Take care
Bart
I Mr. M. K. Shinde, from India, had under gone Esophagectomy for Cancer, on 11 Feb. 2016. After surgery I am having cramps in stomach and loose motions after every eating. Will you please suggest any solutions for the same.
Thanks and regards.
Mr. M. K. Shinde.
Some suggestions. Eat very slowly and make sure you chew your food very well. Keep a diary of what you eat so you can look back and possibly see what is causing the problem. Try not to drink with your meals only take sips if needed. Hydration ( drinking water or Green tea) should be done between meals.
thank you for suggestions and prompt reply.
greetings! so grateful I found this website. thank you everyone. I had an esophagectomy on august 5th, 2016 and since then the recovery has well… been quite a challenge. I am having the beginning of my esophagus expanded tomorrow due to not being able to eat anything. And haven’t had the energy to exercise for more than about 5 minutes at a time on a daily basis. and depression is a large component here as well. ah, good to talk. thanks I hope to join the support group mentioned above also.
WE have a book called Esophagectomy Post Surgical Guide Q&A that is available on our web site and at your local book store. It is published by Authorhouse. Your experience of not being able to eat anything is covered in the book. What you are having done is called a dilation, and it is caused by the scar tissue at the incision site narrowing, thereby closing the opening in your esophagus.
I had this done 4 times in my first year after my surgery. Once this is done get back to your exercising and eating 6 smaller meals each day. Exercising will help with your depreession as it did help with mine once I got to walking 1 1/2 miles 3 times a week.
Good luck
Bart
I am 55 years old and had my esophagus removed because of cancer This was on 7/15/16. I have lost 71 pounds. My problem is nausea and vomiting. I can be find and all of a sudden the nausea is here and I’m throwing up. I can’t get it under control. They have given me 5 different anti nausea pills with no luck. I am also havin trouble eating. Nothing sounds good and if I go ahead and eat it it comes back up. HELP!!
There are a lot of things we need to go through so here we go.
Are you exercising. Walking 1 to 1/2 miles 3 times a week is a guideline. If you exercise you will heal quicker and you will avoid depression which can easily set it. You probably say I am now tired and walking can make me more tired. A sign of depression. If the depression intensifies please see a doctor.
Are you eating 6 meals a day (2 BK, 2 Lunch and 2 dinners) Small portions. eat very slowly and chew your food very well. Try not to drink a lot of fluids with your meal but get your fluid intake between meals.
Keep a food diary of what you are eating so when you get hit with any side effect you can look back and see what you ate that may have caused the problem.
If you have the sensation of being full you may have a problem with digesting your food. Talk to your doctor and he can give you a medication that will help you digest your food quicker.
Are you sleeping on a 25 or 30 degree angle? You need to get proper sleep so whatever way you can achieve this be it sleeping on a bunch of pillows or a medical wedge or an adjustable bed or a reclining chair sleep is important and the best way is unique to you.
We have a support group that meets by conference call once a month. It may benefit you to hear what other patients are doing for the same problems you mentioned. Go to our web site and JOIN.
If you want to talk about all of this please call 732-385-7461
Good luck
Bart
–
This website is a great reference.
I had my esophagectomy a little over 2 months ago. Things were progressing well, then my throat closed up. I’ve had it dilated three times and got up to about 17mm. Since then, it has started to close again, and I have another scheduled for next week.
Eating enough food is tough. Even when I could swallow well, it’s hard to get six “meals” in during a 12 hour span (8am-8pm). Qdoba Chicken Quesadillas are nice. I can eat half now and easy to heat up for later. Things like spaghetti or mac/cheese that is easy to portion or even set aside for later if you can’t eat it all are nice options.
Thank you for your comments. Try thinking of eating every two hours. The key during this time is to maintain your weight. As you get further out you can try and eat a little more. Eat slowly, chew your food well. Dilation is not uncommon. I had 4 of them during my first year post surgery and I know patients who do the procedure themselves.
We have a conference call support group that meets in the evening for one hour a month. It gives patients to hear what other patients are experiencing. It gives patients they are not alone on this journey. GO to our web site and click join and say yes to support groups and I will send you the call in information.
Take Care
Bart
At the age of 61 seventeen years ago I went through the ordeal. Now at age 78 I still play tennis try to stay fit and healthy. If I can help with some sharing of my challenges and experiences I gladly do so.
Klaus
We have conference call support group meetings once a month for people who have gone through the esophagectomy. The call is made up of patients and caregivers who have gone through the surgery some of which are out only a few months and others like you and I have been out of surgery for some time. If you would like to be a part of this one hour conference call please go to our web site http://www.fightec.org and hit the join button and say yes to support groups and I will send you the phone number and access code.
I look forward to talking to you.
Bart
My husband has had an esophagectomy. His was on October 11, 2016. HIS weight is 115-121 I’m having a lot of trouble with his eating he is on a nectar like diet. I measure the food just as the recipe’s say and still he doesn’t eat every day. We go to the park every second day for a walk. Will he ever come out of this. I don’t no what to do. When I talk to the Dr’s they don’t know either as this was a trial,study.
Karen
Is he still on a feeding tube? If not he should be eating 6 meals a day. in effect what he ate for breakfast before the surgery, cut it in half and have a portion at say 8:00 AM and the rest at 10:00 AM. Have half a sandwich at 12 noon and the other half at 2:00 PM. The idea is to maintain his weight and not lose any more weight at this time. Is he depressed? He should see a doctor or a social worker if that is the case. Exercising is good. How much of a walk does he do? he needs to walk 1 1/2 miles 3 times a week or have that as a goal.
Bart
Also his voice and epiglottis are damaged will it go back to normal.
This is a question for the doctors. Voice problems have happened in the past to certain patients and they have undergone procedures to help them recover their voice. Not sure about the epiglottis. Your doctors should be able to tell you what to expect. You may want a second opinion on the problem.
Bart
Wow was I surprised to find this blog! I just had my esophagectomy on nov. 1, 2016! New to all this! Getting my drainage tube removed tomorrow! Will be coming back here to learn as much as possible! Not feeling to good right now!
Kenneth
Go to our web site http://www.fightec.org and look at patient services. We have a book called Esophagectomy Post Surgical Guide Q&A that will be a help in identifying issues you might experience. WE also have a conference call support group that meets once a month in the evning that brings patients together in one phone call. It gives people a sense that they are not in this journey alone.
Bart
I had an oesophogectomy in October 2014. I had 9 weeks chemo before and again after. I recognise many of the post-op concerns expressed on this site. A couple of things which I was told at the time helped me greatly to “keep calm and carry on”!
The surgeon told me I was embarking on a very long and difficult journey; he said the operation was the biggest you could have voluntarily, and the effect on the system was like being hit by a truck – twice!
I was told that the tissue/cut muscle healing would take at least nine months and that the effects of the chemo would take up to two years to clear!
I was also told that the post-op healing alone would take about 2,500 calories a day! – you needed your cals for living/exercise on top of that. That’s a lot when you don’t want anything.
In the year after the op I had five “stretch” procedures to expand the joint in the gullet which tightened as it healed. Totally painless and quick procedure which finally dealt with very frequent blocking when eating.
One year out I had an implant in my throat to compensate for a permanently paralysed vocal cord; a fairly frequent bit of collateral damage.
So far so good. Sleeping “upright” is still a bore; regular proper exercise is very, very important; and at 3 in the morning any pain or twitch or “feeling” I get immediately becomes CANCER in my mind!
I hope it might help some of your correspondents cope if they can see their problems in the context of the very long and life-changing (and life-saving!) experience they’ve had. It gets better!
Best wishes to you all – from over in England.
Nigel thank you for your comments. The vocal cord comment is not that frequent here in the U.S. You probably had the surgeon do a three hole procedure so he entered your neck area and I guess this may have caused the vocal cord problem.
I like to think we are living a new normal life style. When you think of it everyone should be eating smaller meals and sleeping on somewhat of an angle and the exercise we do everyone should do.
We have as part of our web site http://www.fightec.org patient services namely a 24 hour hot line for quality of life questions:; a book called Esophagectomy Post Surgical Guide Q&A and conference call support groups that meet once a month by conference call. Are these types of services available to you in the UK? Do you think these services would be welcomed in the UK? We plan to take The Esophageal Cancer Education Foundation, International and we are looking into making these services available.
Your thoughts would be appreciated.
Thanks Again
Bart
Bart, I have to say that I’ve very little knowledge of what support is available in the UK. From a quick look, I saw three organisations that provide post-op guidance and support; the Oesophogeal Patients Association, HeathUnlocked and the Oxfordshire Oesophogeal and Stomach Organisation but I have no experience of them. I’m sure that support for when “you’re back on your own” is very valuable; I was struck by several of your correspondents saying they suffered depression. Personally, I’ve been very fortunate in having the support of my wife – without whom I might have got through this but it would have been very, very hard! She has frequently reminded me of what the surgeon and his team have said – many months ago – about how long the “repair” process would take and how the aches and pains and wierd sensations are all quite normal. It helps to know that you’re not alone and you’re not going off the rails!
I wholly agree with your comment that we’re now living a new normal life style! I sometimes think that if I’d always been eating, sleeping and behaving like I am now, I wouldn’t have got into this fix! – but who knows?!
Good luck with your plans.
Nigel
Nigel Thank you for your comment. If we get to the UK with our services I will let you know.
Take Care
Bart
I had my esphagectomy on July 15, 2016. The first good 2 months were spent in severe nausea that wouldn’t go away. I had a feeding tube at that time. Feeding tube has been removed now. I have lost 85 pounds. From a size 20 to a 12. However, I have trouble when eating. I have been told to stop when I fill full. I don’t feel the full feeling until 30 or so minutes after I eat. So a lot of times I over eat which then gives me ALOT of stomach pain. I have only found a few things that don’t cause me pain after I eat them. Eggs and potatoes. Meats keep getting lodged in my “NEW” stomach so I was told to avoid meats. I still have a lot of pain from where the 4 chest tubes where put. I have ALOT of acid reflux. Nightly I fight this evil thing. It feels like fire coming up in my throat. I take medicine for this but it doesn’t help.Anti-acid chewable pills are my friend, but even then they rarely stop it. I just want to sleep and figure out the amount that I can or should eat. Any help you can give me is appreciated.
I might also add that I sleep in a adjustable bed almost sitting straight up
a 30 degree angle should be high enough. Think of gravity you want to make sure nothing roles up into your throat and 30 degrees should suffice. See comments in my other response
Bart
Dottie
Lets begin by saying you should be eating six meals a day. Whatever you had before the surgery cut it in half and have it at two meals. In effect 2 BK 2 lunches and 2 suppers.IN this way you get the number of calories you need to maintain your weight since you are consuming the same amount of food except you are doing it at 6 sittings instead of three. If you still are having full feelings post eating then take some food away from what you eat. Your goal is to maintain your current weight not necessarily to gain weight at this point in your recovery time.
If you are having problems with swallowing meat it may be you need your esophagus dilated. The scar tissue when they made the connection could be getting tight and when that happens the hole gets smaller and food can’t pass. Talk to your doctors and see what they think.
If you are having acid reflux at night could it be you are eating to close to going to bed. You should stop eating between 2-3 hours before you go to bed.
Dottie, we have conference call support group meetings once a month for an hour. We get about 20 patients calling in with issues similar to yours and sometimes hearing other patients issues can be of help in your recovery process. Go to our web site http://www.fightec.org and click on JOIN. There are no charges for anything we do. click on individual and then support groups and I will send you the information.
We also have a You Tube Channel https://www.youtube.com/channel/UCDkh7_H9BOnNASdmG4pdF0g. Take a look
Bart
Hi Bart. I’m not sure how I stumbled across this. But it’s so helpful and informative. My dad had an Esophagectomy a few months ago. He is dropping a ton of weight,his throat keeps closing. At first they told him this is normal and he might need to have 4baliin treatments to stretch his trait to break up the scar tissue. We are now on our 7th treatment and the throat appears to be closing faster each time. They keep putting him on a liquid diet prior and post these procedures. My dad scar tissues really bad. Is this normal??? It’s closing to the point that he can’t swallow a pill. 🙁 also what is the number for the conference call and when do they take place? I feel like that would be an excellent support system for him. Thank you.
HI Jamie
He needs to eat 6 meals a day and eat whether he is hungry or not.
I know of patients who have been given the instrument to do the dilations to stretch the scar tissue themselves. Some do it every morning and they live a normal life. Once they show you how to do it a patient once told me “its a piece of cake:.
Some patients never experience the need to have a dilation. I myself had it done 4 times my first year post surgery but nothing thereafter.
To be a part of the ECEF conference call, go to our web site http://www.fightec.org and click on the JOIN button and check off ye to be part of the support group. I will get an email off to you telling you about it and asking you to send me an email if you want to join. WE have them once a month. One group meets on a Wednesday evening and the other group meets on a Thursday evening at 8:00 PM (EST).
We also offer a book called “Esophagectomy Post Surgical Guide Questions and Answers”. This book is published by Authorhouse and can be gotten at your local book store or on our web site.
If you want to talk about your Dad’s situation you can call me at 732-385-7461
Bart
Balloon treatments to stretch his throat and break up the scar tissue*
see my previous email
I was diagnosed in Nov 2010, had surgery in January, followed by chemo, this was difficult due to post surgery issues, made steady progress but medics found unrelated tumor in right kidney, so! Re admitted to hospital to have kidney surgically removed, asvyou can imagine this was a set back both medical and emotional. However I have just past the magic 5 years, I’m now 73 yrs, fit, healthy and still running my locksmith business.
I simply wanted to say to you all, there is life at the end of that long difficult tunnel.
God bless you all.
Dave
Wales United Kingdom
Dave
Thank you for sharing your journey. I am a 16 year survivor of stage III Esophageal cancer. People have asked me how did I do that. What is my secret.
I realized that we have a body, mind and spirit and if all three have a positive outlook anything you do will be done effectively and efficiently. Having a positive outlook brings all three into play.
When I was diagnosed they told me after chemo, radiation and surgery that I would have a 5-10% chance of living 5 years. I took that on as a challenge. I sought out the best surgeon and found him at Memorial Sloan Kettering Cancer Center in New York. I put my mind in a positive position thinking I had three grandchildren that I wanted to see go to college and I involved my spirit in asking God to be with me every step of the way and if I fall please help me back on the right road.
I came up with a saying as I was being wheeled into my surgery and it is “God sits on my right shoulder and there is nothing that he and I together can’t handle”
I am now 74 and have 7 grand kids and a great grand daughter on the way. My motto for life is two fold:
“Make where you are better because you are there”
“Our life is God’s gift to us and what we do with that life is our gift to Him.”
Dave stay the course
Take Care
Bart
Bart, many thanks from across the pond, I can see through your posts what a great help and comfort you are to many gals and guys on here, well done I’m sure it is much appreciated.
Our health system over here is wholly state funded, therefore we dont search for treatment centres, we have regional general hospitals that deal with everything from A&E through to the Big C treatments. I myself was treated at a large hospital here in Wales less than 20 miles from my home, this was excellent for family visits,support etc. I had caring treatment from day one and still visit for chat and check up with my
specialist nurse, my dietician and of course my surgeon.
In 2012 my wife and I became founder members of the Oesphageal Cancer Support Group, we now have approx 20+ members, we meet 4/5 times a year at the
local hospital, room, food and drink donated from charity and hospital funds.We invite guest speakers- tomadvise on dietry, money matters and any other issues of relevance. My only regret is that we didnt have a support group at the time of my diagnosis, it was difficult to meet face to face with other patients or survivors, I feel this is so important.
Thanks for your response, god bless you all.
Dave.
Hi Dave
Thank you for your kind words. We are taking The Esophageal Cancer Education Foundation International and hopefully we will be able to supply you with the services we provide patients and their caregivers here in the U.S. Take a look at our web site http://www.fightec.org and let me know if the services we provide here in the US would be ones you could use in the UK
Keep up the good work.
Take Care& God Bless
Bart
I am 67 years and I have just been diagnosed with esophageal cancer this month. I am having my operation removing the esophagus in three weeks and I am trying to do what I need now, to get prepared for post surgery. I have and am a positive person. I thank you for this post because everyone is helping me to understand what I may experience, and to be prepared. If I can understand what is coming I can at least be braced. I know everyone is different, and I will take one day at a time. What would you say to someone like me that is trying to prepare for this operation and how to prepare for the recovery period at home. Thank you and everyone on this post for your help.
Hi Andy
I tried to call you on two occasions. The last a few minutes ago. I sent you a text. I will be attending a fund raising event in Frankfort IN tomorrow.
To prepare for the surgery you indicate you have a positiveness and are ready to take on the challenge. That is excellent. There is a book called Esophagectomy Post Surgical Guide Questions & Answers that you can get on Amazon or at your local Bookstore. It is published by Authorhouse. You can also get it on our web site http://www.fightec.org.
This book addresses the most frequent issues patients have experience post surgery.
You can respond to my email and text.
Good luck with your surgery.
Bart
I am getting ready to have an esophagectomy for Barretts esophagus with high dysplasia. My surgeon us getting it set up now. I have researched and watched videos if the surgery as well as read alot of your posts. This helps me get prepared for what will come and what to expect. Thank you everyone for sharing. I will keep you posted on how I am doung.
Patty
Have they ruled out doing your surgery endoscopic with a qualified gastroenterologist?
Bart
I had to have my surgery at the University of Cincinatti Barretts Center. They were great. I was in surgery 7 hours, in SICU for 3 days and in a room for 4. During the time in my room I was able to start eating yogurt, pureed foods and other liquid foods. I am on my 4 th week after surgery and I am eating mashed potatoes, Yogurt, oatmeal, jello and other soft foods. I’m not taking any pain medications because I am just sore. I walk every day. I don’t bend over because it makes me sick. My first post ok visit the Dr. Said I am well ahead of the game. I had the Iver Lewis surgery. I do have dumping which I already had so im use to that. I just try to keep positive thoughts and let my healing continue. I am working on using a child size fork and spoon so I dont get very big bites that helps. I also use tiny bowls for my portions. I feel strongef each day, but I know I have a long wsy to go. I still have my feeding tube in for night feeding.
Patty
Your doctor is right. You are ahead in your recovery process. We have a book called Esophagectomy Post Surgical Guide Q&A that is published by Authorhouse and is available at your local bookstore or on our web site http://www.fightec.org
Stay the course and continue to exercise and being positive will help in the recovery process.
Take care
Bart
I have had 3 endoscopic ablation procedures for high level dysplasia. My gastroenterology guy sent me to be evaluated for hiatal hernia repair. Yesterday the surgeon told me I was borderline but recommended a complete removal of the esophagus. I am still in shock and reading your posts has me all the more frightened. I’m not sure wat my next step should be.
Mark
Get a second opinion from a cancer hospital that does thoracic surgeries.
Bart
Thanks Bart. 2 more questions- is there a hospital in Florida that anyone recommends? Also, what do you do about sleeping when you travel? I frequently stay in hotels. I also enjoy cruises. Will eliminating this be part of the lifestyle change?
Hi Mark
I think if you look for Cancer Centers you can’t go wrong most of the time.
As for travelling they have inflatable wedges that you can purchase on line. These will come with a pump so you can store this in your baggage and pump it up when you get to the hotel and deflate it when you ready to leave.
Check the internet for inflatable wedges.
Take care
Bart
My husband is having surgery in a few weeks, and I can find little information about bed options. The wedge pillows I see online are all 1 foot tall, which is less than the 30% elevation the doctor said he’d need. If one wants to be able to roll over at all, it seems you would need to raise the head of the bed 3′ above the foot, which isn’t practical, but a taller wedge would make it hard to move at all at night. Should we plan to raise the entire head of the bed a half-foot and then use the wedge? That would add up to about a 30% rise.
HI Karen
You should be able to find a wedge big enough to not go through the elevation of the bed. Try this site http://www.alimed.com/foam-wedges/?atrkid=V3ADWA342718F_19458175204_kwd-122732412724__198226709906_g_c___1t1&gclid=EAIaIQobChMIso7i4cOG1wIVTweGCh23jgPmEAAYASAAEgJv8fD_BwE
WE published a book called “Esophagectomy Post Surgical Guide Questions & Answers” that will help identify some issues your husband may experience post surgery. You can get this book at any bookstore. It is published by Authorhouse. You can also get it on our web site http://www.fightec.org
Take car
Bart
Hi,
I am so glad to come across your site and I will order the book. My father had his esophagus removed on nov 27 and he does not need chemo and radiation. Eating has definitely been a challenge as he says nothing tastes good. Things he used to enjoy all taste bad and he is hoping to find something he actually wants to eat. Have you heard of this before? He also finds his strength isn’t returning as fast as he had hoped – he is 85 and doing pretty good and getting in some walking.
He is displaying the common issues patients experience post surgery. It will take a good 6 months before he gets his appetite back. The things he use to like will come back eventually. Make sure his weight stabilizes. Have him get on the scale every day. If he is losing weight he needs to eat more. He should eat 6 meals a day. 2 BK, 2 Lunches and 2 dinners. Have him eat by the clock. for instance have a half a sandwich at noon and the other half at 2:00 PM. Whatever he ate before the cancer cut it in half and have it at two sittings. The book explains all of this.
We do have conference call support groups so if he or you want to be involved in the call just go to our web site and hit the JOIN button and say yes to support groups.
Good luck
Bart
Thanks so much! He is trying to eat by the clock which is good – but really won’t eat the things he did before. He seems sort of unwilling to try. I have explained that it really doesn’t matter if it takes good or normal you just have to get it in! So far he has lost a bit of weight during the surgery but nothing extreme. I know you mention walking a mile three times a week. At this point he can’t but he is doing some time on his exercise bike. I will encourage him to join and I will as well. I think it is helpful to know that his experience is normal and will improve. thanks!
He is on a “new normal” journey and he has to get use to the idea that he will never be able to eat what he ate before. I am out 17 years form surgery and I still can’t eat what I use to eat. Stay the course and tell him to take a positive attitude. His attitude may dictate recurrence and we don’y want that.
Look forward to your involvement.
Bart
Dear Bart,
Thank you for your posts and information!
My father had surgery to remove his esophagus post radiation and chemo last January. He spent 3 months in ICU, 2 of those on a trach and vent. After surgery he has had huge problems with the stent moving and not staying in place. He has had to have it replaced numerous times, and without it his esophagus gets very tight. Now he is currently in the hospital and they put the g tube back is as he is losing weight because each time he eats the food gets stuck and he has to vomit it out. This occurs with liquids, soft and ground food. The doctors don’t understand why this is happening. They have thrown out there that perhaps his esophagus/ stomach (whats left of it) is stretching??? Could you please offer any insight on this? We are all at a loss and my poor father is so devastated.
Thank you!
Hi Laci
One thought is he may not be digesting his food fast enough. Have they checked the muscle at the bottom of his stomach. It may need to be cut or a botox injection done. Also when he eats does he eat slowly and does he chew his food very well. If the stent is moving it could be that he is not chewing his food well and he is swallowing chunks of food. If you use a blender to turn his food into almost liquid form does that work? Let me know what you think about what I have written here.
Take care
Bart
I had esophageal cancer 5 years ago stage 3 plus 1 am cancer free now. I get acid reflux and cough and have some phleme sometimes otherwise i live a normal life i am 80 years old and am still working. If anyone has esophageal cancer go to Columbia Presbyterian in manhattan and see Dr Joshua Sonett he was a doctor who opetated on PRESIDENT CLINTON.He saved my life!!!
Dr Sonett operated on me as well. That was in 2013. He saved my life. INCREDIBLE DOCTOR!
Good blog, thanks for giving information.
VTS Bharath providing free cancer treatment and free medicines
thank you
I wanted to furnish a generally upbeat personal story here, even if it is still very early going.
I was diagnosed with stage III esophageal cancer in late August 2017. I proceeded with the usual rounds of radiation and chemo into early November. In mid December I had a minimally invasive surgery at Georgetown Hospital in Washington DC. The surgery, which lasted 11 hours, removed a fair portion of my esophagus and at least a third of my stomach. I was back on my feet the next day, though for short stretches, and left the hospital four days later. The doctor allowed me to get back onto solid foods within a week and to eat as I pleased, though judiciously.
Back home, I rested for three weeks, while also pushing to go on increasingly long walks, and then returned to work three weeks after the surgery. I have had no eating issues, no acid reflux issues at night, and have pretty easily adapted to a new eating routine of multiple smaller meals a day–which is a better way to eat anyway. (Oddly, my capacity appears to have increased since surgery, though I am being careful not to push that.)
Now two months out from surgery, I have regained my stamina, and am back to running and going regularly to the gym. Yes, I am about 20 pounds lighter from where I was in August, but essentially the weight I was in my early 30s, a couple decades ago. Nothing wrong with that.
We all know that the odds of recurrence aren’t small, and that the consequences of recurrence can be grim. But for the moment, I am back to something closely resembling normal, which is a very nice feeling after the past six months.
Wishing everyone on this page well as they push forward with their own challenges. And Bart, thanks for your attentiveness to this blog and the time you devote to answering questions.
Staying positive through this disease is essential and it seems from what you have written that you are on the right road.We have a way for you to share your journey with other Georgetown esophageal cancer patients so if you are interested I can tell you how. You can reach me at 732-385-7461 or from our web site http://www.fightec.org
Take care and good luck
Bart
Some very interesting comments that give me hope. I was diagnosed with a hole in my esophagus on March 15th dr. Tried to patch 3 times wouldn’t hold so my esophagus was removed. No cancer. My stomach was pulled up to be my esophagus on oct.8th. Had some leaks afterward, but by middle December was tube free. I felt really positive thru x mas. But as I write this on feb 18th feeling very depressed no appetite and not hydrated enough. I am 52 and kinda feel hopeless maybe expected to much to soon. I live in northern Canada very cold for walking, just going to ride it till spring. Some very good tips on this blog and I have to realize that my old normal is gone, and adjust to my new normal. Thanks for this blog is has gave something to think about for sure. Take care
Hi Murray
It seems you will have all the effects of a cancer surgery without having cancer. Lets go by the numbers.
First of all when they did the connection (stomach to remaining esophagus or to your throat) did they remove any of your stomach? If they did you will need to eat more meals each day since your stomach will not be large enough to hold enough food to stay at your normal weight with three meals. Try and eat 6 meals a day (2 BK,2 lunch and 2 dinners). Eat by the clock if you don’t have an appetite. Eat every two hours.
Second they will have removed your valve that connects the esophagus and stomach so you will probably have to sleep on a 25-30 degree angle. Reason being when you lay flat in bed your stomach will be higher then your throat and anything in your stomach could roll up into your throat when you sleep and you can aspirate that content and this could be big trouble.
Third you need to look at these things as a NEW NORMAL and getting back to what you ate before the surgery is gone. We have a book called Esophagectomy Post Surgical Guide Questions & Answers that deals with post surgery issues. It is published by Authorhouse and you can get it at any bookstore or on our web site http://www.fightec.org.
Please remain as positive as you can and this will help in the healing process.
If you have any questions please let me know.
Take care
Bart
Thanks for the reply. My stomach is the same except for what was used to connect to throat. They had to remove part of my collarbone and when I swallow it doesn’t go straight down but curves around the where collarbone was. I do not have reflux,but have lots of dumping and stomach aches. It has been quite a challenge for me to get enough calories into me as I just don’t feel hungry or thirsty. Sleep patterns all turned around and starting to get anxiety now and depression has started to creep into my life. I know things will get better and it is a work in progress. I will definitely buy that book. Thanks so much for this blog it has given me peace of mind reading others struggles and things will get better. Peace and joy to all.
The dumping is because you are not eating a balanced meal. usually too many carbs will cause the dumpling. The 6 meals a day plan (2 BK,2 Lunch and 2 dinners) you may be trying to eat to much at one meal and that can cause both dumping and stomach aches. Exercise is also very important and will help on the depression side.
Try the above and let me know how you do.
Take care
Bart
Hi,
I am 46 years old and recently had an Esophagectomy for severe acid reflux. I had the nissen fundiplication surgery twice and both failed within a couple of months due to a severely eroded esophagus. I had the Ivor Lewis surgery on March 6 and supposedly the surgery itself went very well. However, I developed pneumonia and went into Acute Respiratory Distress Syndrome. They put me in a medically induced coma for 9 weeks and I spent 3 months in the hospital. I was lucky-I survived. My lungs are healing well but I still feel like I can’t breathe when I stand up. My lung doctor thinks it has to do with the change in my anatomy due to the surgery. I am wondering if anyone else has felt this. I have been going physical therapy but don’t feel like I’m getting better. Also, very depressed. I was very active before all this happened.
Stephanie
Exercise is very important in the recovery process. You should continue to walk at least a mile 3 times a week. This could help your depression. If the depression continues you should see a doctor.
I know when I had my esophagectomy, i had a shortness of breath after I ate and they attributed it to my surgery. They said that my chest cavity which at one point had my lungs and heart now have a portion of my stomach and when I ate a little to much the portion of my stomach that was in my chest fought for room and usually won which had the effect of pressing on my lungs and reducing their ability to expand,
This eventually went away and after 18 years from surgery I only get shortness of breath when I exercise and push myself.
Take care and good luck
Bart
Hi Bart. I wrote on this blog in February. Took your advice and started walking and I have improved. But last couple weeks I feel very lethargic have no energy my appetite is gone and depression is starting to creep in again I just seem to get over the hump. Very frustrating. I have maintained my post op weight but can’t gain an ounce. I was just wondering if you had any hi calorie hi protein or some high energy food that you might recommend. I find it hard to eat even tho I know I need the nutrients. Thanks for your time
Murray you need to continue to exercise. This is not just after surgery but it should be consistent throughout your life.
Do you have any goals that you would like to reach or family you would like to see graduate from College or get married or have children? Having a goal is good and gives you something to look forward too.
Talk to the nutritionist form the hospital you were at and see what they recommend. If you add cream to your prepared soups that would help. You should continue to have a balanced meal because that will help avoid dumping. We have conference call support groups for patients who have gone through the surgery. We have one group that meets on a Wednesday evening and another on a Thursday evening at 8:00 PM (ET). If you would like to participate go to http://www.fightec.org and click on the JOIN button. There is no charge to be part of these groups and it will help talking to other patients who might be experiencing the same issues.
Greetings! My esophageagectomy was May 23rd 2018. About twice a week I have gastric juice flow up into my mouth and get a nasty wake up call. Sometimes I aspire some, and spend the morning coughing it up. I sleep elevated, with antacids and pepto at the ready; I’m looking for advice on how to eliminate this problem. Thanks!
Hi Stacy
I responded to your second email first.
Let me say a few things about your comment.
First you should stop eating or drinking at least 2 hours and preferably 3 hours before you go to bed. This will enable your stomach to digest the food you have eaten so in theory there is nothing in your stomach to come up at night.
Second if you do not digest your food quick enough you may want to have a bigger meal at lunch time and a smaller meal at dinner time.
Third are you sure you are not sliding down from your pillow during the night. If so try and place a pillow under your knees to further prevent you from sliding down.
As I mentioned in your other note check out our conference call support group . http://www.fightec.org
Take care
Bart
My husband had his esophagectomy 14 years ago and is still cancer free. A few times a year he still gets severe acid reflux, says it feels like he swallowed acid. He also aspirates the reflux and recently had an aspirational pneumonia.His current problem is that his food does not digest very quickly i.e., was going to have an EGD and stopped eating solid food 18 hours before the EGD – during EGD still had a large “glob” of food in his stomach (after 18 hours). Wondering if anyone has this problem?
It sounds like his muscle at the bottom of his stomach is not working efficiently. There are treatments available that your surgeon can perform that can help this valve function better. One being Botox.
Take care
Bart
Hi My name is Cndice and I am 38yo now. I was diagnosed with esophageal cancer in 2017 when iwas just 37. I had a young 5yo and a loving husband but I still have trouble dealing with this whole thing. From being diagnosed to finding a new normal. I unexpectedly became pregnant just 5 months after my esophagectomy so I haven’t really had time to find a new normal yet. Sometimes I can eat the same thing for a week but then I can’t handle it suddenly makes me ill. I have researched, read and listened but I find no relief. I can’t even find a support group near me. Any ideas? I’m losing my sanity and I want a normal life with my children. I have missed out on so much. Thank you!!
HI Candice
What you are experiencing with your eating situation is not that far from what we have heard and what I have experiences as an esophageal cancer patient. I had a stage III tumor and went through chemo, radiation and surgery. That was 19 years ago. My wife and I formed the Esophageal Cancer Education Foundation ECEF 16 years ago to help patients navigate through the recovery process. We have, currently, conference call support groups that have patients calling in from all over the U.S. once a month. Putting yourself in the company of other patients experiencing the same journey that you are is a good way going forward.
The calls as I said are on a monthly basis. WE have one group that meets on a Wednesday and one that meets on a Thursday. Both are at 8:00 PM (ET). WE will have 2 doctors in attendance on each monthly call. If this is of interest to you go to our web site http://www.fightec.org and click on the JOIN link and check the support group question. If you tell us which evening works for you I can give you the phone number and access code to use.
Look forward to hearing from you
Take care
Bart Frazzita
President
Four years now. I was forty pounds overweight at the time of my surgery. I’m 5-9, 65 years old. Weigh 152 currently. More trouble eating than normal lately. Severe stomach aches accompanied by whole body severe flu like symptoms. Lasts about two hours. Unable to vomit since surgery, although dry heaves lesson pain. I often self induce. Just a different way to live. Beats the alternative…your welcome to contact me. Especially if you are facing the procedure and want to know what to expect.
Frank
There could be several reasons you are experiencing the difficulties in your note. You should be eating smaller meals more often.
You could be experiencing dumping. This is when you don’t eat a balances meal. Usually a lot of carbohydrates will create this problem. What is basically happening is if you eat sugar, cake or dessert without other food elements (protein, fats etc) your stomach is saying I can’t handle this and is dumping the food into your intestine while your pancreas is putting insulin into your system to handle the food in your stomach. Since that food is not there you can get a low blood sugar reaction which would be sweating, stomach pain, shakes, heart attach feeling. no energy. If this is happening to you take some orange juice and some nuts and the feeling will go away i about 20 minutes.
You should eat very slowly and make sure you chew your food very well. Let a meal take a half hour or more for you to consume. This will give your stomach time to digest the food rather then placing all the food you are eating in your stomach at one time.
We have conference call support group meetings that meet once a month and if you would like to be apart of it just go to our web site http://www.fightec.org and click on JOIN and then click on support groups. There is no charge.
Take care
Bart Frazzitta
President
ECEF
732-385-7461
Hello sir, I have been reading the comments, your help and Godly advice since before my Esophagectomy on Nov. 4th 2019. July 3rd I was diagnosed with stage 4 Esophageal cancer, it had spread to my liver. They started chemo and palliative care. I was given 12-15 months to live. I had a lot of people on their knees on my behalf. When they did my second PETscan my Dr called me within a few hours. They wanted to try and do an Esophagectomy. I found your website before the consultation with the surgeon. Long story short it came out good, I still have chemo to do but the picture isn’t as bleak as it was. The day I came home from the hospital I started eating, determined to get the feeding tube gone asap. I did good that first week, maintained my weight and felt stronger. I then had my first post-surgery chemo treatment followed a MugA scan. About 3 hours after they injected me with the radioactive isotope I got sick to my stomach. Here’s my problem I eat small meals, I stay as active as I can, either walking, driving, shopping, whatever I can do to help take the load off of my wife this has created. Every evening between 9:15pm and 9:45pm I have wave after wave of diarrhea. It doesn’t matter what I eat, when I eat, portion size, activities after, it is like old faithful. I saw my surgeon last week he said it was from the chemo. I had chemo before surgery, the side effects only lasted about 10 days. We’re going on 3 weeks now. I’ve cut sugar, dairy, bread, and tried various other combinations. A baked potato is what I’ve been eating for dinner. A couple of bananas for breakfast, for lunch a sandwich with fruit in between. Even if I use my feeding tube, it goes right through me. The surgeon says it’s the chemo. My Oncologist says it’s the trauma my body has been through. Bottom line is I’m continuing to lose weight. I’m at 135lbs,I haven’t weighed this since middle school. Any thoughts or suggestions would be greatly appreciated sir! JESUS IS LORD!!!
John
Let me first say I am an esophageal cancer survivor and not a doctor. I have talked to many patients over the 19+ years from my surgery as part of the Esophageal Cancer Education Foundation (ECEF) http://www.fightec.org.
My experience is many people who have chemo post surgery have stomach issues. It seems as if your new stomach can’t tolerate the chemo that you are on.
I am surprised that they did an esophagectomy with a liver metastasis although I know of a couple of cases where they did liver surgery and then followed that with an esophagectomy. My question to you is “Are there still cancers in your system or did the the scan indicate that the liver cancer was gone (helped with prayers) and they are doing Chemo now as a safe guard against any cancer that they didn’t detect through the scan? If the answer is no cancers detected then stopping the chemo should eliminate the problems you are experiencing. If the answer is yes there are other cancers in my body then I think chemo is the only answer, IS Immunotherapy an option? check with your oncologist.
I look forward to hearing from you
Take care
Bart
Hello There!
I had my Esophagectomy 02/15/18. I have the new eating habits mostly worked out by now. After sleeping on a wedge for the first month, I told my thoracic surgeon during a follow up visit that it was super uncomfortable and made it hard to sleep. He gave me a pamphlet for the Medcline pillow, and I ordered it that afternoon.
https://medcline.com/
This is definitely a much more comfortable option as it allows you to sleep on your back & side while still staying elevated.
However, now that I’ve been sleeping upright for almost 2 years, I find that my tailbone is starting to hurt, which is radiating to my hips and down my upper legs. It’s causing a fair amount of weakness in my legs, and I feel like an old lady when I’m walking…slow, with a slight limp…trouble with steps and uphill walking. I’m only 46 yrs old. :/
I’ll be making a doctor’s appointment after the holidays are done, but I was just wondering if anyone else has experienced this kind of “side effect” from having to sleep upright?
I am not sure how upright you are when you sleep. You could try and reduce that angle and see how that works. Also when you receive your new wedge that should take some of the pressure on your back.
We have conference call support group meetings on a monthly basis. If you would like to hear what other patients experience you are certainly welcome to join. If you go to our web site http://www.fightec.org and click on the JOIN button and click on conference call support group we wills en you the details.
Take care
Bart
Hi Bart,
My father had most of his esophagus removed on 12/11/19 due to esophageal cancer. He was doing well 7 days after surgery and was released from the hospital and started eating soft foods, but developed a leak 11 days post-surgery and had to be re-admitted to the hospital for repair and recovery. He was then released last week on a liquid diet and started eating solids again on Saturday (3 days ago.) The problem is that he can hardly eat anything (2 eggs, half a protein drink, half a piece of fish, etc.) without feeling full. He doesn’t have a feeding tube (never has) so he’s losing weight and is unable to get the recommended protein, calories and fluids each day. He had a check-up yesterday and his tests were good. The doctor said that he needs to try to eat more or he’ll end up back in the hospital. He’s already trying to follow the 6 small meals a day and walking, but he eats a few bites and is full so here we are. Anyway, we’re unsure whether to push the doctor to do more tests or to just keep encouraging him to eat more. Have you heard of anyone having a physical problem that was making them feel full? Or does it just take time to build up to eating enough to satisfy your daily calorie needs? Thanks for any thoughts or advice.
HI Laura
Feeling full after a small amount of food is consumed is an issue that some people experience. The meal you mention in your note sounds to me as being to much at one time. Whatever he ate before he had the diagnosis you should cut in half and have it at two sitting. For instance one egg and a one slice of toast should be one meal. the fish he could have at the second meal and the drink between the meals. He should not try and drink as part of his meal. His stomach is smaller now and liquid takes up room that he needs for the calories he consumes. Fluids should be consumed between the meals. Have him eat very slowly. Have him put his spoon or folk down between bites. Make sure the bit he had is completely swallowed before he take the next bite. If the doctors examined him and said everything looks OK there is no reason to push them as, I think, it is all as a result of approach to eating. Eating 6 Smaller meals each day should work. It will allow his digestive system to work better if he eats slowly.
I am assuming you are not in the U.S. given the example of the food he is eating. Most surgeons in the U.S. use a feeding tube so that the connection they make when they do the surgery has time to heal properly before food is taken through the mouth.
Please let me know if what I have suggested works.
Bart
I recently had surgery in Monterey California the counter was between the esophagus and the stomach they had to remove like half of the esophagus and stretch the stomach up and reconnected it to the esophagus this was all done orthoscopic Lee if you can believe that I was in surgery for seven hours my question is I’m having a really hard time trying to figure out my meals since my stomach now it’s half the size because if I donate my blood sugar it gets really low when I start shaking and almost feel like passing out if you could reach out to myself that would be great thank you
Jim
Because your stomach is smaller and you still need the same amount of calories to maintain your weight you need to eat smaller meals more often. We say in our book “Esophagectomy Post Surgical Guide Questions & Answers” that you need to eat 6 meals a day. In effect two Breakfast, two lunches and two Dinners. Whatever you had before your diagnosis cut in half and have it at two sittings. Example, If you had a sandwich for lunch have 1/2 at noon time and the other half at 2:00 PM. Try not to drink with your meal, a sip is OK, since you want to reserve the space in your stomach for calories and not fill it up with liquid drinks.
You need to eat balance meals and not just say carbohydrates. Your experience of low blood sugar is call a dumping syndrome. What is happening, in lay terms, is your stomach is getting the carbohydrate and says i can’t handle this and empties the contents into your intestine at the same time your pancreas is putting insulin into your system and there is nothing in your stomach for the insulin to work on and this cause the low blood sugar reaction. Drink some orange juice and eat some protein (nuts) and you should feel better in about 30 minutes.
Our Esophageal Cancer Education Foundation http://www.fightec.org has conference call support group meetings for patients at which patients share their issues and we have two surgeons on the call to respond to the issues being discussed. There is n o charge to be part of this group. Hit the join button once on our web site.
Take care
Bart
Hello Bart,
I was very grateful to find your blog. It’s been helpful reading of others experiences. My 67 year old husband was one of the “lucky” ones, as his EC was found at Stage 1. However, his Ivor Lewis failed and he had to have emergency surgery that provided him with a feeding tube and spit fistula. After 7 months, he had a total esophageal reconstruction in November which used his small intestine as the conduit. Thankfully, after many complications on this journey, he survived. However, he is struggling with getting used to this “new normal”. (physically and mentally) The guide ECEF published was definitely helpful. Are there people in your support group that have had this type of surgery? Are you aware of any additional dietary issues other than the ones that apply for an Ivor Lewis? Thanks for your time.
HI Anne
Actually no there are no patients in our groups that have had to use something other than the remaining stomach to pull up as part of the surgery. I know of a colon interposition where they use a portion of heh colon to act as the conduit in the surgery. I am not familiar with any dietary restrictions but I would check with a nutritionist at a major Cancer Hospital to see if they have any directions
Take care
Bart
How have others dealt with feeling nauseous after eating? Is it okay to take Pepto Bismal often? Are there certain foods that might help?
Hi Anne
There can be various underlying reason a person gets nausea after eating. It could be that you are eating to much, and your stomach can’t move the food to your intestine fast enough to empty your stomach for your next meal. It could be you eat to fast or don’t chew your food well. It could also be that the lower muscle that connects your stomach to your intestines is not working properly. If this condition happens often you should tell your doctor. There are medications that you can take to help this situation once they identify the cause.
I do not know the impact of taking Pepto Bismol often.
You should keep a food diary and write down everything you eat and when you eat it and see if this condition happens every time you eat or only on occasions. Seeing what you eat can target certain foods that cause this condition to happen in you. Its a trial and error situation.
Good luck
Bart
Hi, thank you so much for having this website, it has been very helpful. I am 42 years old and last Oct 2019 discovered I have esophageal cancer stage 3. I have gone through 7 weeks of 2 types of chemo and 28 radiation sessions. In the next couple of months I will have my surgery. My surgeon will be removing half of my stomach and part of my esophagus. I have read and researched the surgery and know some of the severity of it… My questions are, how long do you think I will be out of work if surgery goes as planned? How many weeks will I have a feeding tube? Every how often do they introduce liquid, to soft foods, to solids? How long will I need someone with me when I go home from surgery? My husband and sisters work… How did you cope with the pain after surgery? My body does not like opioids. I am scared and very nervous, but I know that this surgery is what will keep me alive, I have a 10 year old and husband that need me. But like you said, God will be the one in control, and I have put my faith and trust in Him! thank you again for this website! Susy Polk
Hi Susy
Let me first say to you that we have conference call support groups for esophageal cancer patients. Most of the patients are post surgery patients but we do have pre-surgery patients calling in as well. The call is at 8:00 PM (ET). It is held monthly. Let me know if you are interested.
Let me now respond to your questions. Let me say that everyone is unique and therefore what works for one patient may not for another
My questions are, how long do you think I will be out of work if surgery goes as planned? For me I left the hospital on May 27th and went back to work August 1st about 2 months. I had the open surgery so there were two large incisions that had to heal. If you will have minimally invasive it could be less.
How many weeks will I have a feeding tube? I did not have a feeding tube as part of my surgery. The surgeon will want to see you two weeks or so after your surgery and make that determination. Depending on how well you are doing he or she could take the feeding tube out at that time. You should exercise when you get home from the hospital. Walking is acceptable. If you can walk about 1 mile 3 times a week that would be good.
Every how often do they introduce liquid, to soft foods, to solids? While on the feeding tube they will try and ween you off by first adding liquids to your mouth intake. they will then go to soft mechanical diet of pudding and jello and even scrambled eggs. If you do well they will then go to solid foods. When you begin to take food by the mouth make sure you eat very slowly and chew your food very well. Your stomach is like a new baby’s stomach so reintroduce the foods you liked before the surgery carefully. We have a book called “Esophagectomy Post Surgical Guide Questions & Answers”. You can get this book on our web site http://www.fightec.org or on Amazon or at any book store.
How long will I need someone with me when I go home from surgery? My husband and sisters work… The one area you will need help in is the preparing the food you will have during the day. IT is suggested that you eat 6 meals a day since your stomach will be smaller yet you will need the same amount of calories to keep your weight up. If they can prepare your foods and all you need to do is heat it up in a microwave that should be all you need. I would say if someone was around for the first 3 weeks that would be fine. You can also play it by ear and see how you are doing. It could be less time.
How did you cope with the pain after surgery? When I was in the hospital after my surgery the nurse would come in every morning and take my vital signs and ask me to rate my pain. Zero being no pain ten being horrible pain. Depending on what I said, her intent is to get my pain level don to the 4-5 level so I could do the walking exercise (at least one mile a day) breathing exercise 10 reps an hour and coughing exercises 10 reps an hour. They gave me pain medication to take home with me but I found that Extra strength Tylenol was as effective and I could drive once off the pain medication they gave me,
I am scared and very nervous, but I know that this surgery is what will keep me alive, I have a 10 year old and husband that need me. But like you said, God will be the one in control, and I have put my faith and trust in Him! thank you again for this website! Susy Polk You need to remain positive and confident as you go into the surgery and when you come out of the surgery. Set your sights on your husband and your 10 year old and think of them constantly and see being there for them as your goal. I have a saying that “God sits on my right shoulder and there is nothing that He and I together can’t handle.” In May of this year I will be out of surgery 20 years and I still thank God every day for allowing me to be here.
Susy thing of becoming part of our conference call support group and get yourself a copy of the book I mentioned.
Take care and good luck
Bart
I had surgery 7 mos ago. I am 100 % cancer free. In March I started feeling so much better. But last week I started dumping a little bit again. I have had a cough ever since the surgery so I have also coughed up a lot of mucus. But a couple of nights ago I actually coughed up some blood. The next day there was a small amount in the mucus one time. Today I didn’t have any blood. Have you dealt with this before
Judy
The dumping and the coughing yes but bleeding needs to be looked at by your surgeon or gastroenterologist.
We have conference call support group meetings once a month for two group of patients who have been through surgery. If you would like to be a part of one of these groups please let me know. We have a group coming up this Thursday if you are available. There is no cost involved. The meeting is at 8:00 PM (EDT) and it will last an hour or so. We will have two thoracic surgeons on the call as well. Go to our web site http://www.fightec.org and click on JOIN and check support groups and I will get back to you with a phone number and access code for you to make the call on Thursday.
Take care
Bart Frazzitta
President
Hi,
Just found your website doing a search on what’s normal post-op.
I belong to a couple of Facebook Groups on EC Survivors and caregivers.
I’ve read all kinds of stories – good, bad, and hybrids thereof and have done a lot of reading on my own.
My biggest challenge is post-op “living” as a survivor.
The scan-to-scan anxiety and just the day to day struggles I face – nausea that I have to “eat and drink thru it” that comes and goes either daya to day or sometimes meal to meal. Feeling ok more or less, then suddenly not so good.
Frustration and depression are very common to my work-a-day exhistance.
Anyways – since I’m new here, I figured I’d leave a post and give a brief look at my particular case – maybe some can relate and tell me I’m not going to crazy because some days, I really don’t know how well I’m doing.
In Dec of 2018 I was watching football – having a pizza and drinking a few beers.
I was on my own, having separated from my wife in March of 2018. I took a bite of pizza, swallowed then grabbed my bear for a swig- suddenly couldn’t swallow – wasn’t choking like it went down the wrong way, it was like my throat had a spasm.
After about 5 seconds of panic, it cleared and I swallowed. I thought I just swallowed wrong somehow, took another swig – all better.
Then it happenned – again… and again.
As the days went by it continued – never swallowing food but always some kind of liquid – water and beer the worst (probably because thin liquid-no substance to it.)
I thought I must have lifted something at work that aggravated my long-time hiatal hernia – more than 40 years of acid re-flux causing acid re-flux only at night if I ate or drank too close to bedtime.
I only had reflux problems at night-during the day, it was under control with Prevacid.
Suddenly, I had reflux symptoms during waking hrs at this time – also getting worse and not controlled too good with Prevacid and antacids.
It was time to see the Dr – ask to get a barium swallow to check out the hernia.
So my primary scheduled one in March 2019 and they “saw” something in my esophagus.
Week later they did an endoscopy with biopsy – cancer confirmed.
My wife was with me when I found out – and we fell apart for a while crying over this diagnosis of unknown prognosis – but reading about it and it’s 5-yr survival stats on Mr Google, we were both scared to death.
My whole world crumbled – but it brought clarity – all the boneheaded reasons we separated seemed to fade – except the fallout effects were still there and I had just signed the lease for the second year “on my own”.
Long story short, the only way out was to pay 3 months as penalty as well as the last month should I want/need to leave if I couldn’t work thru the concurrent chemo/radiation prior to surgery, if it didn’t metastasize in the interim.
DX: 62 years old: Adenocarcinoma distal third of esophagus. Stage 3. Treatment: curative – concurrent 5 weeks of chemo (once a week), radiation M-F. I tried to work thru that – made it to week 3 when I came down with cold which led to pneumonia. 5 days in hospital then last 2 weeks of treatment.
5 week rest before IL OPEN procedure turned into 6 week rest before MIE (Minimally Invasive – referral given to explore that technique he didn’t perform from looking at Mr Google looking for options since OPEN procedure terrified me and included feeding tube and probably nursing care post-op.
MIE – all I read was comparable effectiveness, perhaps less complications, quicker healing and no feeding tube or nursing care needed-probably.
I had MIE July 2019 at MGH Boston and 4 months post-op, after 102 “issues” (exaggerated but didn’t seem like it at the time – let’s say ‘lots’ instead), I returned to work full-time.
I no longer needed pain pills, and was eating enough to gain back 17 lbs of my 33 lbs I lost post-op and stabilized.
I have maintained that “new weight” for the last 7 months-give or take 2 lbs up/down… it oscillates but very stabile.
So I’m eating and drinking what I should be, but lots of that is even eating and drinking if I have “mild” nausea. The other alternative is sliding down the slippery slope of weightloss and maybe feeding tube scare so whether lucky not to throw up, or iron will not to throw up-I don’t throw up. That’s good, but bad is I have been having more and more nausea after I thought I had licked that.
Been a long while since I needed anti-nausea pills but last few week, it’s been maybe couple times a week, I need to take a pill or 2 a day here and there.
So frustrating to seem to be progressing, then having fallback symptoms.
I did spend the $6000 to vacate the lease and moved back with my wife – things are ok, but the fallout from my being gone is that, as of this date, we are more roomates than “man and wife”. No return to joint anything – she has her money and bills and I have my money and bills.
I figured out our “common” bills like mortgage, food, utilities and pay my half like a good roommate.
We hold hands and snuggle watching TV some but still celebate since we got back together-not together then really-let’s say cohabitation.
Saved the biggest issue I have post-op for last. The return of my long-time (my whole life) IBS-C. At 60, I finally found the magic anti-IBS-C solution. 2 years prior to DX, apple cider and Miralax was the Holy Grail of regularity that I found.
Post OP, the return of my IBS-C with the added bit that the bowels won’t continue of their own once movement starts-like they are dead- I sometimes think I’ll have an aneurism straining, all the while thinking “this can’t be good for my new plumbing-gonna kill myself straining.
Fear of this sent me back to Dr – my primary Dr suggested I try linzess – so after trial and error (it causes pain/gas/ diarrhea), I take 1/4th the normal dose every other day – mixed results except a by-product of it working is that it initiates dumping and nausea some times, sometimes diarrhea, and sometimes both – occassionally it actually does none of the above and the movement is mostly “normal” – whatever that is, and I mostly feel ok if I get lucky like that.
Anyways – I get depressed and maybe everything is just magnified because of this pandemic-I believe I’ll die if I come down with it, no doubt at all- but off to work I go to my “essential” job.
Anybody out there in EC-land have lasting or recurrent nausea like I’m experiencing?
PPS. Thanks for reading all this if you got this far 😉
-John
Hi John
I am a 20 year survivor of stage III esophageal cancer. I have gone through chemo, radiation and surgery. My wife and I formed the Esophageal Cancer Education Foundation (ECEF) http://www.fightec.org to bring awareness of this disease to the public and to walk the journey with patients who have this disease. We have conference call support group meeting on a monthly basis. Patients from all over the U.S. call in and discuss issues they are experiencing. We have two Thoracic Surgeons on the call as well.
Your nausea can be the result of various situations. The thought of you gaining weight in this short period of time post surgery is surprising. We tell patients post surgery that they should eat smaller meals more often. In effect it is having two breakfasts, two lunches and two dinners. You may be eating to much at one time as one cause of your nausea. The second potential cause is you are eating to fast. Your stomach needs time to pass the food into your digestive track and the more you eat, and if you eat fast, the longer it will take to get that food out of your stomach. You could be trying to put food into you when the food you ate at your last meal is still in your stomach. That causes what you are eating to back up and this can cause nausea.
I think you can get some benefit form our conference calls. if you go to our web site http://www.fightec.org and hit the JOIN button and then click on Individual and then support group we will send you the information for our conference call meeting. Everything is free i.e. no charge from ECEF for the service.
If you want to talk to me you can call 732-385-7461
Take care
Bart Frazzitta
President
Hi Bart,
Thanks for responding.
As far as conference calls go, I work M-TH 10 hr shift 3:30pm to 2PM – your calls are most likely day shift-centric. If you have weekend calls then that would work.
As far as eating goes. I eat breakfast after my walk -just started my walking routine like I used to have pre-cancer- grab a water and out the door for a 1 mile walk on a workday and 2 miles per day on weekend days.
I come back, take my meds with apple cider, a lactaid-free yogurt and coffee – then I make my breakfast.
My regular breakfast is 2 eggs n cheese omelet with 4 frozen sausages – I’ll eat half if going to work and I’ll bring the other half to work for my supper.
Other times it might be pancakes and butter or cereal with lactaid milk.
On workday it’s mini-cornbread with a premier around 5PM.. drink half with it, then rest later.
A cereal bar with the rest later or maybe 6-pak snack PB cheese crackers. Could be a yogurt or piece of banana bread… but my point is couple snacks with a premier from 5-9pm at work before supper at 11PM-ish. I’ll also have a Starbucks 15 oz doubleshot around 6pm and sip on that in between my snacks.
11PM it’s other half of breakfast I made or leftovers… could be whatever, but small amount with the start of 2nd Premier drink – drink some and drink rest later.
I’ll have a 12 oz gatorade too in there somewhere.
I give you a sample diet to show that I’m not overeating.
I also chew everything to a pulp – always been a real slow eater.
My Dr’s are happy I gained back some weight after losing 33 post-op and I’ve been real stable weight, so again, I’m not over-eating since I am holding my weight steady.
I get 2000 -2400 calories during the week days – varies depending what meal I have – or maybe I skipped a snack.
I aim for 80-100 ounces of liquid – 17 ounces of water on my walk – rest of the time the kind of drinks I mentioned.
Thanks again for responding Bart.
I’m at work responding – I’ll join the site sometime this week though.
Thanks again and have a great day 🙂
-John
HI John
The sentence below I took from your initial email.
The scan-to-scan anxiety and just the day to day struggles I face – nausea that I have to “eat and drink thru it” that comes and goes either daya to day or sometimes meal to meal. Feeling ok more or less, then suddenly not so good.
The food you describe you eat is significant and some of these can cause stomach problems. I think you need to think about the brain in your head and the brain that this surgery has developed in your stomach and that sometimes they are not on the same page. The brain in your head is telling you all of the things you mentioned in your last email while the brain in your stomach is saying I can’t handle it and the nausea is its way of telling you that. To get rid of the nausea I think you need to reduce the amount you eat and drink each day.It seems you are overdoing it in my opinion. Exercise is very good and I tell patients to walk 1 to a 1 1/2 miles 3 times a week. Food like pancakes for me can cause what we call dumping. Have you ever experienced that? Nausea can be a product of the food from your previous meal not clearing your stomach and the food you are putting down it now backs up and can cause nausea.
John I am not a doctor but an esophageal cancer survivor who has spoken to over 1000 EC patients and that is where my experience comes from. Try eating less and see if that helps the nausea.
Our conference call support groups meet at 8:00 PM (EDT) on a Wednesday and Thursday evening. Sorry we do not have a meeting on the weekend.
Please let me know if eating less helps.
Take care
Bart
Hi Bart,
I don’t really get where you are coming from as far as thinking I’m over-eating.
If I maintain my weight – by definition I must not be over-eating – I don’t know how else to figure that out.
You, like anyone I’ve ever read re: EC post-op is 5-6 meals-small amount. Check.
My sample breakfast was yogurt, apple cider, and 1 egg w/slice of cheese melted in and 2 breakfast sausage. 2 sausages are 150 cal, they’re like 2 inches in length each. 1 meal.
Next “meal” – 1 cereal bar and half a premier – hardly a meal but let’s call it a meal. 2 meals
Next meal -“mini cornbread (like from Boston Chicken – small, or piece of banana bread with other half of premier. meal 3
A starbucks 15 oz drink over course of couple hrs. Just a drink.
3 hrs or so later it’s the other half of breakfast or mini-tupperware of mashed potatoes/meat or pasta n sauce w/ butter and melted cheese meal 4
But to my thinking, it’s really 2 small meals, calorie dense, and 2 snacks.
2 small meals and 2 small snacks. Gatorade 12 oz and my morning water in my 1 mile walk and that’s it for a workday.
80-100 ounces fluids (varies) and 2000-ish calories.. I go up to 22-2400 on weekend… added real meal-small, calorie dense so still 3 meals and maybe 3 snacks on weekend day. 6 “meals” if you prefer.
I’m doing exactly what you, other patients, books and Drs say… more small meals, calorie dense, plenty of fluids, especially with my IBS-C.
I’ve struggled getting my new plumbing to tolerate anything all thru my post-surgery time. I tolerate more but I didn’t have the luxury of skipping meals if nauseous-I had to eat and drink thru it to gain weight and now maintain weight.
I was liquid only first 5 weeks until Dr said – either stop the weight loss or we’ll need to do a tube-I was going downhill.
Nausea has always been a problem and then it got better for a while.
Then, same diet but now nausea and return of IBS-C and my cure stopped working.
Linzess has made things worse nausea-wise and yes, it’s either it works regular (blue moon) or it gives whoosh… diarhea… too many carbs give dumping… but sometimes dumping happens where it didn’t before.
I appreciate your comments – but if I skip a snack here and there, I get blood sugar crash.. shakes from hypoglycemia then need candy or juice-that just gets me on the sugar roller-coaster… better to keep blood sugar even as I can.
Anyways…. linzess and IBS-C has more to do with aggravation to this new plumbing than any “overeating” that I’m not doing.
I strain even when I can init bm most of the time… other days like today I get lucky and don’t strain – like today… and rewarded with no nausea.
I just wondering if other EC patients have this same difficulty getting over-sensitive bowels that don’t work all that well and if they ride this same nausea roller-coaster that I do.
I think I’m doing what I’m supposed to – maintaining fluids and weight, but my balky plumbing won’t cooperate.
I am not saying skip a snack or a meal. simply eat less of that snack or meal and see if that fixes your nausea. You had indicated that you gained weight post surgery which at your time from surgery seems to me to be very unusual. For one day preferably a Saturday or Sunday get on the scale when you wake up and see what you weigh. Then eat half at each of your meals and snacks and fluid intake for the day and see if you still get nausea. The next morning see how you feel and what you weigh. Just a suggestion.
Hope you can join one of our conference call meetings.
Take care
Bart
Take care
Bart
I have just came across your website with questions and answers….. I have to say what a blessing it was to come across it…. my husband is back home now after our journey with this esophagectomy and other issues…. back in july 2019 he were having issues with blood pressure for his DOT and discovered a high white blood count for several months and had a oncologist look into it…. after having a scope done we found that he had stage 3 esophageal cancer located at the top of his stomach and lower esophagus….. in the process he had to have a heart cath done because he failed the stress test in preparation for the esophageal surgery…..had the heart cath done march 25 with 3 stents and was put on plavex…. at the time of the esophagectomy April 30th we had to go in a week early to wen off plavex and put on heparin for the surgery….. as the surgery goes it went well… they got it all and no chemo or radiation….however….two days after surgery one of his drains was loosing to much blood and required a blood transfusion…. first went well but the second one had antibodies in it that reacted to the heparin and caused his body to go into multiple systems organ failure and ARDS ( acute respiratory distress syndrome) as well as pneumonia and septis…….was put on a ventilator may 5th and was on it for 23 days in a roto bed that rotated him every 20 to 30 minutes 24 hours a day…..being on a paralytic and sedatuon drug the entire time…long story shorter…. by God’s grace and mercy he is alive today after having some extreme doubt he was going to pull thru, including all 15 doctors he had working on the case. release from the hospital the first week of June with rehab at home….. today, June 30th 2020, as I said was a blessing coming across your site because I was searching for answers for some of the issues we’ve encountered…..several have been answered by just reading everyone journeys ….. the biggest issue he is having is the numbness in his entire right side and hardly no voice and taste bud issues , may all be related to the numbness maybe not…..we are having a MRI done this Thursday to look into this…. he is having issues eating like everyone has had and we are learning our new normal…..alot of the comments made have answered alot of our questions…. we will be looking into this dilation thing as he is having difficulty swallowing now…. i will also be looking into to the book you have available and would like information to the conference call situation you had mentioned several times….. Thank you again
HI Virginia
You have certainly been through a lot in the last year or so.
I have mailed out your copy of the book today.
You asked about our conference call meetings. We have two groups that meet once a month, one on Wednesday and one on Thursday evenings. We meet at 8:00 PM (EDT) and the calls last about one hour. Patients and caregivers call in from all over the U.S. and we discuss the issues they are experiencing. We schedule two Thoracic Surgeons on each call to assist with responding to the issues being discussed. If you would like to be a part of either of these calls please send me an email with your selection and I will send you the phone number and access code to use. There is no cost from ECEF for these conference calls.
Please let me know how your husband is doing and the report on the MRI.
Take care & stay safe
Bart
Bart, thank you for the reply…. and i look forward to receiving the book…. yes it has been a very active few months…. found out the cancer diagnosis first of February….. our MRI was this morning and went well now to wait for the results and will let you know …..either Wed or Thurs will work ….
Thanks Virginia
Hi Virginia
I will place you in the Thursday Group. July 9th is the next meeting . I will send you the phone number and access code early next week.
Take care
Bart
Bart
Is coughing up blood something to seek assistance with?
Definitely Yes
Bart,
As I have mentioned before this journey is totally new to us and I am constantly looking up or googling stuff…. recently rich went to the hospital for a week because of a abscess in his right lung that was the size of a cutie orange likely leftovers from the pneumonia he had while in the hospital the first time….prior to this most recent week visit to the hospital rich was having abdominal pain issues pretty much all the time, however for whatever reason while he was in the hospital he didnt have the abdominal pain and have been dealing it with since which has been for over a week…. not sure if it is food related or something else….would you have any ideas or suggestions?
Dr on vaca and we have an appointment next week with him.
Virginia
Virginia
You should maintain a food diary of everything he eats. Does the pain happen after he eats? What did they feed him while he was in the hospital? he should be eating very slowly and chewing his food very well. He should put his folk down after he takes a bite and not pick it up again until everything is his mouth has been swallowed from the previous bite. Make sure he is eating 6 small meals a day. If none of this works then he should see a gastroenterologist to do an endoscope and check out what is causing his pain.
Bart
Just had Esophageal resection June 25th 2020 I had a tumor at the base of my esophagus I did Chemo and radiation first and then surgery and after a two week stay in the hospital I’m home and ,I feel good I’m able to eat everything all systems are working your life does change you just have to have faith stay positive the only thing I’ve been struggling with is my sleep I’m trying to prop up at a angle and I’ve been moving around a lot so I’m not getting good sleep then in return you get tired the next day so I’m still experimenting with all that . If you have and questions in regards feel free to contact me rolmoto@yahoo.com
Hi Roland
You have many options when it comes to sleeping and the key is to find which option works best for you.
Most common option is to place several pillows under your head to elevate your back ,neck and head above your stomach. This may not work since you may slide off the pillows and become flat which is a no no because of potential aspiration. Other options are raising the head of your bed with boards to accomplish the angel you need to sleep. Another option is buying an adjustable bed and the last option is sleeping in a recliner. Since you are moving around during your sleep a recliner has the restraints of the arms of the recliner to keep you in the right position and the incline of the recliner eliminates the problem of sliding down.
Let me know what works for you. Check out our web site http://www.fightec.org. We have conference call support group meetings on a monthly basis to deal with the various issues you may encounter in your post surgery recovery.
Take care
Bart