5 months after esophagectomy. Hard to get enough calories. Frustrated

I counsel hundreds now... I suppose I do it because having EC, regardless of stage, is an incredibly daunting journey. It is brutally tough both physically and mentally. And I'm still on my own journey as I'm only 3 years post-op. Even for me, there are no guarantees. We host twice weekly free Zoom calls... and we have folks who are just diagnosed... and folks who are 15 to 20+ years post-op. We've seen and done EVERYTHING!

OK... so you went thru no treatments... nice! At least you were spared that bit of misery. I'll assume you were stage 1a or 1b. The odds of you never seeing your EC again are crazy good in your favor... like 95% or better... assuming post-op pathology also showed zippo!

But where you are now is truly the toughest part of the EC journey... even with your rosy prognosis of no more cancer. I hate to say this... but 5 months post-op is still very early on. The esophagectomy we went thru, is one major ass surgery! The physical rearrangement inside us is crazy... our stomachs now serve as our esophagus! We basically have no more stomach... no big holding pouch below our diaphragm... just a straight shot to our intestines.

But that's not even the biggest issue for us. What causes us 95% of our problems is the fact that our vagus nerves are gone. And this is no small thing... like our stomachs don't know how to make acid, etc. The vagus highway is crucial to our digestive process. The communications that take place between our stomach, heart, lungs, liver, kidneys, intestines, etc... all have to get rewired once again. Does this actually happen? Well... pretty much... but it takes like forever... and even then...add an extra 6 months to my forever estimate!

And that's why the esophagectomy post-op journey can be so depressing. It's just too damn slow... too damn depressing! Worse than watching grass grow or paint dry... those are actually speedy things by comparison.

So... what's the answer... to endless tummy aches, maybe swallowing problems, intestinal cramps and severe pains down there... and of course, constant ass explosions... enjoy the ride. We all go thru this! And you can experiment all you'd like... thinking that it is what you are eating, the amount you are eating, how often you are eating, time of day you are eating, the temperature of what you are eating or drinking, the acidity, the sugar content, is the sky blue today... to be honest... doesn't really matter.

For me, very quickly I just decided that EVERYTHING caused me problems. So I then decided I wasn't going to experiment. I was simply going to wait it out, try and eat the same as I always did, force my body to figure things out... because I wasn't going to change... other than I knew I had less room down below... I'd have to eat and drink far more often... and in smaller amounts. Graze all day long.

And as about 18 months went by... I finally got there. Maybe even 24 months. My body did rewire itself, and all those things I suffered from slowly improved. Are they completely gone... well no... but close enough. I never thought I'd get to where I am now. I can actually eat quite a bit now too... like an entire Big Mac with a few fries and some drink... at one 15 minute sitting. But still, even for me, usually not advisable... stay safe, eat half that amount at one sitting, then wait an hour to eat the other half. Otherwise I too risk some nasty tummy pains. But I now poop much better, more firmer again... and I sleep much better... back to normal... I don't have to stay elevated when it's time to slide down and go to sleep. Never thought that was coming.

But remember, we all travel the post-op road a bit differently... so hang in there... be patient... understand you still need at least another year. So pound down the food... force your body to change... and enjoy the misery. And keep a beach towel in your car... one day I'll tell you that story.

Be well.

Gary,
Southern California

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I counsel hundreds now... I suppose I do it because having EC, regardless of stage, is an incredibly daunting journey. It is brutally tough both physically and mentally. And I'm still on my own journey as I'm only 3 years post-op. Even for me, there are no guarantees. We host twice weekly free Zoom calls... and we have folks who are just diagnosed... and folks who are 15 to 20+ years post-op. We've seen and done EVERYTHING!

OK... so you went thru no treatments... nice! At least you were spared that bit of misery. I'll assume you were stage 1a or 1b. The odds of you never seeing your EC again are crazy good in your favor... like 95% or better... assuming post-op pathology also showed zippo!

But where you are now is truly the toughest part of the EC journey... even with your rosy prognosis of no more cancer. I hate to say this... but 5 months post-op is still very early on. The esophagectomy we went thru, is one major ass surgery! The physical rearrangement inside us is crazy... our stomachs now serve as our esophagus! We basically have no more stomach... no big holding pouch below our diaphragm... just a straight shot to our intestines.

But that's not even the biggest issue for us. What causes us 95% of our problems is the fact that our vagus nerves are gone. And this is no small thing... like our stomachs don't know how to make acid, etc. The vagus highway is crucial to our digestive process. The communications that take place between our stomach, heart, lungs, liver, kidneys, intestines, etc... all have to get rewired once again. Does this actually happen? Well... pretty much... but it takes like forever... and even then...add an extra 6 months to my forever estimate!

And that's why the esophagectomy post-op journey can be so depressing. It's just too damn slow... too damn depressing! Worse than watching grass grow or paint dry... those are actually speedy things by comparison.

So... what's the answer... to endless tummy aches, maybe swallowing problems, intestinal cramps and severe pains down there... and of course, constant ass explosions... enjoy the ride. We all go thru this! And you can experiment all you'd like... thinking that it is what you are eating, the amount you are eating, how often you are eating, time of day you are eating, the temperature of what you are eating or drinking, the acidity, the sugar content, is the sky blue today... to be honest... doesn't really matter.

For me, very quickly I just decided that EVERYTHING caused me problems. So I then decided I wasn't going to experiment. I was simply going to wait it out, try and eat the same as I always did, force my body to figure things out... because I wasn't going to change... other than I knew I had less room down below... I'd have to eat and drink far more often... and in smaller amounts. Graze all day long.

And as about 18 months went by... I finally got there. Maybe even 24 months. My body did rewire itself, and all those things I suffered from slowly improved. Are they completely gone... well no... but close enough. I never thought I'd get to where I am now. I can actually eat quite a bit now too... like an entire Big Mac with a few fries and some drink... at one 15 minute sitting. But still, even for me, usually not advisable... stay safe, eat half that amount at one sitting, then wait an hour to eat the other half. Otherwise I too risk some nasty tummy pains. But I now poop much better, more firmer again... and I sleep much better... back to normal... I don't have to stay elevated when it's time to slide down and go to sleep. Never thought that was coming.

But remember, we all travel the post-op road a bit differently... so hang in there... be patient... understand you still need at least another year. So pound down the food... force your body to change... and enjoy the misery. And keep a beach towel in your car... one day I'll tell you that story.

Be well.

Gary,
Southern California

Jump to this post

I had my esophagus removed in April of this year. It's been tough trying to maintain a healthy weight and now having to go through another round of chemo to deal with the new areas of cancer. Your words are encouraging to me. I know the road to recovery is a long one.

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I counsel hundreds now... I suppose I do it because having EC, regardless of stage, is an incredibly daunting journey. It is brutally tough both physically and mentally. And I'm still on my own journey as I'm only 3 years post-op. Even for me, there are no guarantees. We host twice weekly free Zoom calls... and we have folks who are just diagnosed... and folks who are 15 to 20+ years post-op. We've seen and done EVERYTHING!

OK... so you went thru no treatments... nice! At least you were spared that bit of misery. I'll assume you were stage 1a or 1b. The odds of you never seeing your EC again are crazy good in your favor... like 95% or better... assuming post-op pathology also showed zippo!

But where you are now is truly the toughest part of the EC journey... even with your rosy prognosis of no more cancer. I hate to say this... but 5 months post-op is still very early on. The esophagectomy we went thru, is one major ass surgery! The physical rearrangement inside us is crazy... our stomachs now serve as our esophagus! We basically have no more stomach... no big holding pouch below our diaphragm... just a straight shot to our intestines.

But that's not even the biggest issue for us. What causes us 95% of our problems is the fact that our vagus nerves are gone. And this is no small thing... like our stomachs don't know how to make acid, etc. The vagus highway is crucial to our digestive process. The communications that take place between our stomach, heart, lungs, liver, kidneys, intestines, etc... all have to get rewired once again. Does this actually happen? Well... pretty much... but it takes like forever... and even then...add an extra 6 months to my forever estimate!

And that's why the esophagectomy post-op journey can be so depressing. It's just too damn slow... too damn depressing! Worse than watching grass grow or paint dry... those are actually speedy things by comparison.

So... what's the answer... to endless tummy aches, maybe swallowing problems, intestinal cramps and severe pains down there... and of course, constant ass explosions... enjoy the ride. We all go thru this! And you can experiment all you'd like... thinking that it is what you are eating, the amount you are eating, how often you are eating, time of day you are eating, the temperature of what you are eating or drinking, the acidity, the sugar content, is the sky blue today... to be honest... doesn't really matter.

For me, very quickly I just decided that EVERYTHING caused me problems. So I then decided I wasn't going to experiment. I was simply going to wait it out, try and eat the same as I always did, force my body to figure things out... because I wasn't going to change... other than I knew I had less room down below... I'd have to eat and drink far more often... and in smaller amounts. Graze all day long.

And as about 18 months went by... I finally got there. Maybe even 24 months. My body did rewire itself, and all those things I suffered from slowly improved. Are they completely gone... well no... but close enough. I never thought I'd get to where I am now. I can actually eat quite a bit now too... like an entire Big Mac with a few fries and some drink... at one 15 minute sitting. But still, even for me, usually not advisable... stay safe, eat half that amount at one sitting, then wait an hour to eat the other half. Otherwise I too risk some nasty tummy pains. But I now poop much better, more firmer again... and I sleep much better... back to normal... I don't have to stay elevated when it's time to slide down and go to sleep. Never thought that was coming.

But remember, we all travel the post-op road a bit differently... so hang in there... be patient... understand you still need at least another year. So pound down the food... force your body to change... and enjoy the misery. And keep a beach towel in your car... one day I'll tell you that story.

Be well.

Gary,
Southern California

Jump to this post