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.
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.
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.
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.
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 >
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 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
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
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
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.
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
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
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.
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!
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
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!
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.
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.
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
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 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
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.
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.
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!!!!
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
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.
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 🙂
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
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
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
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.
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?
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.
How do I get onto your monthly conference call?
Thank you so much.
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 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?
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
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.
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.
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
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.
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?
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.
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.
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.
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!!
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.
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.
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.
Also his voice and epiglottis are damaged will it go back to normal.
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!
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.
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
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.
Balloon treatments to stretch his throat and break up the scar tissue*
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
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.
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.
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.
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.
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,
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.
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!
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!!!
Good blog, thanks for giving information.
VTS Bharath providing free cancer treatment and free medicines
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.
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,
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
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
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!
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?
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!!
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.
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?