Esophagectomy: What is life like Afterwards?

@jimbon try not eating after 7pm so you can sleep without reflux. Good luck.

@manuelo that would be Awsome its deff been a battle, had my CT scan last wed and meet with Dr ,s wed but reading my portal looks like good report, next CT be mid of July. Thanks for encouragement 🙏.

@manuelo
Likewise. I had a couple dozen endoscopies before I started self dilation. I do it every day but considering stopping and see what happens.

@v132077 you can do it gradually. Every three days, weekly, bi weekly, then stop. If you feel food is getting stuck again you can re-start. Good luck!

@jimbon good Luck!

I had t2 tumor between stomach and esophagus removed. I am doing great.
I can give you lots of tips and feedback and can speak if you wish. Just make sure surgeon is best in your area. Mine is in Miami if it helps.

@manuelo
What size is/was your dilator. I am using a 48FR. Where did you do the training for self dilation. I went through the Mayo in Phoenix.

I was diagnosed with T4 in November 2019. Went through radiation and chemotherapy in January, February and March. Surgery at the end of April 2020. It’s definitely been a rough journey. Even now the nerve pain in my back and right side are at times unbearable. I do take nausea medicine yet refuse pain medicine.
Living alone has been challenging getting the outside chores done as when I feel like I’m going to pass out from pain I have to take many breaks( mowing/shoveling)
I’m still only able to eat about 1 cup of food at a time unless I want to be sick or have dumping. Luckily I have precursors when I’m getting close. My nose starts running and my mouth gets very watery.
Sleeping has had its challenges as well. I think I’m up to 8 pillows on my bed and if I fall off those I usually head to the couch where it doesn’t happen.
Best of luck,
Lori

@lleigh I am sure you have experimented with supplements, have you? My husband takes a lot of them since he still has no appetite and does not want to eat. Here is what I put in my own thread when asking about feeling sick after eating: If I may, I would like to share something I found out with the help of AI by asking it again and again for 'help' regarding my husbands problems with exactly all these symptoms. He has a massive problem with histamine, and his histamine intolerance caused in the end his surgery 4 years ago. In the last couple of months his dumping and sickness became so awful that he was more than desperate, could not eat anything without feeling sick, etc. I asked ChatGPT again but in a different way (a simple question: what is somebody lacking who suffers from histamine intolerance, and my next question was: how can you trigger your body to produce DAO again) and to cut a long story short: the outcome worked. It suggested to take L-Glutamine (my husband has taken this for almost 2 years now) PLUS butyrate sodium. He bought this one here: https://www.naturitas.us/p/supplements/fatty-acids-and-omegas/optim-butyrate-sodium-butyrate-90-capsules-optim-laboratoire. He has taken this now for 2 weeks and the result was phantastic: He could eat anything, really anything without any problems. He is still in the trial phase and since he had to take painkillers for a day due to tooth problems, he had an awful day yesterday, with diarrhea and you name it - a typical reaction and consequence for him since his surgery), but despite this, it seems like this combination really works. He hasn't had any DS or GE ever since, no sickness, no nusea, no nothing. Really, no kidding. His life changed from 0 tolerance for food to 100% tolerance of any food he could not eat before. I don't know if this helps, but perhaps. This is just our experience, this is no scientific or medical proof or something, he is still in the trial phase, as I said, and I am not suggesting anything here, I only wanted to share this experience with you, which is absolutely personal and individual. Have an amazing and healthy 2026!!! All of you!!! Wishing you all the best!
Michaela
I hope it helps
All the best
Michaela

@michaelaaustria
I wish I had known about this group when I started my journey in 2019. Pretty much everything was trial and error and anything you searched online was so discouraging as an esophageal cancer was pretty much a death sentence especially at T4.
I had my surgery performed at Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, which I am very surprised does not have a group chat like Mayo Clinic does considering it is one of the biggest hospitals in northern New England.
I found this group a couple of months ago and it has been wonderful following other people through my journey. Everyone that I have talked to within a 200 mile radius that knew anybody that had esophageal cancer. If they made it to surgery, they didn’t make it long after.
Luckily, since my journey started, I didn’t really have a problem keeping food down. It was just being able to put weight on with what I was allowed to eat. When you only allowed 8 to 16 ounces at a time including drinks, it doesn’t take much and it doesn’t add up. My starting weight was about 180 pounds and I think I might’ve gotten down to about 122 luckily my doctors told me to eat whatever I felt like eating.
The only nausea that I get is caused by pain not from over eating
Thank you for your suggestions
Lori
I truly appreciate it
Best wishes