Esophagectomy: What is life like Afterwards?

If you stop and then restart just be careful the first time since you don’t know if it narrowed or how much it did

@manuelo hello, your sprinkler was able to heal itself?? For others reading this I dont want to create uneeded anxiety- in my brothers situation there was a delay getting him to the hospital. If he'd gone as soon as the pain spiked, I think he could have been spared the collapsed lung. the infection would have been treated earlier. i'm not sure if there was anyway to avoid the leak needing to be fixed by surgery. Even if your pain Rx is working call the doctor to and tell him it changed... if it hadnt been a late friday when his bandages were changed- told was told all was well... etc etc... sunday morning he couldnt breathe. I just got an update while I was writing this. His o2 is at 100% and white blood cells are good. 🙂 they're doing chest xrays everyday, they're still concerned about shortness of breathe, the antibiotics were changed... god willing he's improving a bit everyday 🙏 he's in a top hospital, top doctor.

@ajax2026 Hi, Yes my leak healed on its own. They just kept me longer at hospital when they realized it. I was there fourteen days. Last few days they had me eating jello and soft stuff like that but I had to keep feeding tube for a couple of months.

Glad your brother is doing well. Btw I still have a handhell device you have to keep blowing you have to keep inhaling from in order to exercise your lungs. I am sure your brother will get one too. It is great to exercise your lungs.

@manuelo
Glad everything is working good for you. I have reduced the frequency of my dilations to every third day instead of every day. Seems to be working fine so far. Not sure if I will ever quit entirely because I don’t want to deal with it closing up, and the dilations have become second nature for me.

@v132077 after a few weeks you can try doing dilations once a week then every ten days, then twice a month. Then monthly, then stop for a while. If it feels like food is becoming harder to pass you resume dilations. I quit for about four months then I did a tune up. I have quit twice already each time for about four or five months.

Your stricture wont happn overnight so you can try stopping for a while and see how you feel.

Take care

@lindainca Thank you for your response. It really does give me hope. I will be having surgery at Rochester Mayo so feel good about that. Thankful to live close enough that it is an option. I'm really worried about weight loss though too. I'm already petite and lost some weight due to the esophageal cancer narrowing it at the GE junction. I'm worried I don't have enough to lose to manage surgery and being on a feeding tube so long! Any advice?

@manuelo Could you talk more about the experience and after effects of the neck incision? I may have to do likewise. It was described as coming up and over the clavicle (which they'd have to cut), and then food lump would likely be visible when I swallow, especially since I'm petite. Is that your experience too?

@cutbet I too am petite. What I was advised to do was eat high calorie, easy to swallow food to try to gain a bit of weight prior to surgery. I pureed most of my food, and I ate lots of ice cream shakes with protein powder. I gained a few pounds that way. Also, once you are on the feeding tube it won’t be any problem gaining a few pounds because it goes directly into your small intestine without swallowing, and you can adjust the amount of formula pretty easily. I would highly recommend consulting with a nutritionist who has experience with these issues. Sending positive thoughts for your successful surgery.

@lindainca Thanks for the tips! My challenge right now is that I have high sensitivity to the cold due to oxaliplatin...so ice cream isn't as viable (yet). I'm hoping that in my post-chemo, pre-surgery weeks that the sensitivity goes down so that I can in fact eat ice cream. I've missed it!

That's really encouraging that the feeding tube will help me to not lose weight. I've been worried about that. What's it like to not be able to swallow water when initially on a feeding tube? Do you know? I'm having a hard time imagining what my mouth/tongue will feel like. How about as you adjust off of the feeding tube? Is it hard to keep weight then?

@cutbet For me, the nothing by mouth instructions didn’t really affect me that much. I was NPO for a month after surgery to let the connections heal. I was on five 8oz containers of NutriSource formula, using a Moog Infinity pump on a rolling stand. It was initially set for a 22-hour continuous infusion at 50ccs per hour, but it could be changed to a higher infusion rate to be on it for fewer hours. The setup came with a backpack so I could take it out while doing errands, etc.

When you’re NPO, if your mouth gets dry you can always rinse and spit, or they have little sponges on a stick that you can wet with water and swab your mouth. I never felt any thirst though because there is ample water in the feeding solution.

Transitioning to feeding by mouth and weaning off the feed tube was a challenge for me. It takes time for your body to adjust to eating and drinking again. I started gradually limiting the feeding tube feedings after about a month, and after I was down to about 600 calories a day from the tube, I simply stopped it and ate and drank only by mouth. It’s been about three weeks since they removed the feeding tube (a simple and painless in-office procedure), and I’m weighing in at only a couple of pounds under my normal weight…it varies by day. You just have to strike the balance of eating enough, but not too much to make you feel over-full or nauseous. And weigh yourself every day. It will fluctuate, but eventually you’ll find your balance.

One last tip: I highly recommend consulting with a nutritionist who has experience with this issue. Mine had several helpful suggestions. Good luck to you!