Anyone have dumping syndrome post esophagectomy?

@dkoehne Thanks for taking the time to share all of that, really appreciate it. A lot of what you described sounds very similar to what I’ve been dealing with.

Interesting to hear about the Libre as well, it sounds like a really useful tool for staying ahead of things - I'll see if we have anything similar available in New Zealand.

Good to hear you’ve managed to stabilise your weight a bit too, that’s encouraging. All the best with it, sounds like you’ve found a way to manage it pretty well over time.

So im 1 year post esophageal surgery and have had both dumping syndrome and delayed dumping, deff different but watching what ya eat is deff the key,I was really never informed about delayed and fig it out last summer, while having what I thought was panic attacks stomach issues scattered feelings...to many carbs was causing pancreas to dump LG amounts of insulin into me and my suger would bomb out to 45 to 50 until I let things settle down,I have more info if anyone needs it,best of luck and prayers to all of us,its one crazy Ass life changing surgery, the chemo/ radiation put me in remission but chose the surgery also as there wasn't much time for research..

@jimbon . Yes I thought I was having panic attacks also as no one had explained it to me.

@suensteve17 same here,I fig it out by myself, was scarry for while,and sucks cause we have to watch carbs so close and everything is carbs,they want you to gain weight ....but wait don't eat any sweets and carbs.im down to 145 from 172,65 year old male.....heavy whipping cream is Awsome along with olive oil as additives for good calorie count..

@jimbon bread and sweets are out for me. I'm 64 and lost 20kg. I think I pretty much live on crackers and cheese

@suensteve17 yup do lot cheese, breakfast sausage,shivered ham turkey, roast beef,hamburgers, had a Reubin tonight, or I mean half,lol never leave a restaurant without a take home box,my son has chickens next door so I do eggs,very lil sweets,best of luck...

Hi everyone,

I thought I’d add my experience as well. I’m coming up to about three years post-esophagectomy. Overall I’m doing well, but dumping syndrome has definitely been one of the more challenging long-term effects.

For me it tends to show up more as late dumping / hypoglycemia rather than the immediate symptoms. I can feel fine after eating and then 1–2 hours later suddenly feel shaky, fatigued, or generally unwell. Occasionally I need to lie down and eat some more food until it passes.

Weight maintenance has also been difficult. I’m 6'6" and was around 100 kg before surgery. I now sit around 81 kg, so putting weight back on has been a challenge even though I try to eat regularly.

I’ve recently started trialling acarbose to help blunt the blood sugar swings. It’s still early days so I’m not sure yet how much it will help, but I’m hopeful.

One thing I’m still trying to figure out is triggers. Sometimes symptoms seem meal-related, but other times they appear fairly random, which makes it tricky.

For anyone who mentioned pain around the old J-tube site after eating, I experienced something similar for quite a while. In my case it seemed to improve when I reduced insoluble fibre intake (things like very fibrous fruits / vegetables). I also noticed the discomfort could flare up when I did activities that stretched or worked the abdominal area, like swimming laps or certain core exercises.

I’d be really interested to hear from others:
• Has anyone found medications like acarbose or octreotide helpful?
• And for those further out from surgery - did you manage to gain weight again, and if so what helped?

It’s reassuring to know others are navigating the same things. Thanks for sharing your experiences.