Esophagectomy: What is life like Afterwards?

@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!

@manuelo hello manuelo. its been several days since i wrote. thank you for your help. we ended up not needing to advocate because they kept him longer until he couldnt wait to get home 🙂 I havent seen him since he got home (he's in canada) my sisterinlaw's update is: he gets tired very easily, low stanima and has lost a lot of weight. He has a drain tube but the feeding has been taken out. he has a stent which i believe is in his esophagus, it lets food pass while the leaks heal. he's on two antibiotics. I'll be able to see him soon. I spend the summers there. it will be easier for me to stick my nose in his business 😂 ... it's hard for me sometimes, I need to be sensitive to how they want to handle things. However, in my defense i used to do medical research as a job. I'm good at it, like finding this site... that i havent been able to get him to check out but joking aside the night before the crisis i was in touch with another member here and told him about how much pain my brother was in, this would be about 10 days post surgery. The person said, something's wrong he shouldnt be in that much pain. Its why I tried to get him to call the doctor right away and at least describe where it was coming from. This was on a saturday. He said, he'd call monday morning. His lung collapsed sunday. He'd had his bandages changed at a clinic on friday and was told everything looked great. they went home with a false sense of safety. in anycase he's kept his head above water 💪 its slow but he's getting better. it's been a set back for sure but we're on the right, going forward nit back 🙏🙏🙏it worries me has to do another round of chemo. I've sent him weight gain drinks and a breathing exerciser (i'll have him check with his doctor about using it) its hard not being there... so i can tell everyone what to do 😂😉

p.s. i forgot to ask if they used a stent to help heal the sprinkler? from your description though it sounds like they opted to do a feeding tube while it healed. Also, could you remind me what year you had your esophagectomy. I'm sure you said, but sometimes i have trouble finding past post. i hope your having a great day 🙂!

@dkoehne spot on my friend, deff life changing, did chemo/radiation, dec jan a year ago,surgery 4/25...almost 1 year very life changing, only 170 to start and lost 30 lbs,elevated bed no alcohol, 65 years old,widowed on learning myself, treatments took care of cancer,but like everyone said it will come back so did surgery, thank the lord and all my medical staff for helping me,deff new life but still do some trucking, cut split lot wood walk couple miles a day,the acid reflux and belching is out of control, just did scope and there was food in there...they dilated to 18 and gonna go back down in couple months after 48 hrs liquid diet and dilate again with botox injection also...may take care of some issues..

@ajax2026 Hi, sorry your brother is still feeling tired. He needs to eat, rest, do some walking and use the breathing exercise machine. He should get better soon. I wanted a stent so bad cause of my strictures but ended up doing a bunch of endoscopy sessions and then my own dilations. As for the leak it healed on its own. They just had me off food and very little ice to munch on for a few days. It was torture but I cheated and smuggled buckets of ice and I would gooble it like the cookie monster 🙂

I think the leak healed in the last 7 days I spent at hospital cause they had me eating soft food then. I kept the jtube for a couple of months after that. I eat EVERYTHING know and I thank God for my lucky stars. I am very vital and strong now and happy to be alive and living a normal life.
I am sure your brother will get better too. 🙂

@gdj my husband is about to ‘have’ this procedure and he is freaking out a bit. If you’re still available, could we connect please?