Hi, I am 11 months post esophagectomy. I have the same issues with the kinds and amounts of food. Also feel the same, weakness, sweating and the need to lie down. It happens when it wants to and lasts as long as it wants to. I have discovered that I can’t eat red meat ( never did like or eat it much before). Also I stay away from red sauces, leafy greens and most meats. I am very careful as to how much and when I eat. Never eat 2-3 hours before bed. I wish everyone the absolute best. This is definitely a tough surgery to overcome!
Look... we all travel the post-op road a bit differently. I've talked to hundreds of my fellow EC patients. As I counsel them, one of the things I tell them is to experiment as much as they want... OR... don't experiment AT ALL! Just put up with some misery and keep shoving it in! Force your body to figure things out.
Us esophagectomy patients have most things in common post-op. And some of us have some unique things going on. And comorbidities add to our problems.
For me... I was crazy tight post-op... and that was never going to change. I could not swallow a teaspoon of rice, even at 5 months post-op... it simply would not go down. So at 6 months post-op I got my first of 4 stretches. One a month for 4 months. Didn't take long... put on 20 lbs in less than 2 months! Have now put on 35 lbs total... of the 60 I lost... been holding there for 2 1/2 years now.
But... the first 6 months to year post-op... EVERYTHING have me problems! Was it the amount I was taking in at one sitting? Was it what I was eating/drinking? Was it the temperature of it? Was it the time of day? ALL OF THE ABOVE! And since my tummy always hurt... and later my intestinal pains were crazy... my ass was exploding... regardless of what I was taking in, I thought, why bother trying to find out what's working and what isn't? Because it seems almost nothing is working! So... I made zero adjustments. I wanted to eat like I always did... my body was just going to have figure things out... because I wasn't going to change!!
Yeah... it sure took it's sweet time... 12 to 24 months... but it finally rewired itself to get digestion done again. My new digestive system (without vagus nerves now), understood I wasn't going to change, so it had better get with the program and make changes! The tummy pains (ok, call them dumping syndrome, I don't care), my intestinal cramps (from those gas bubbles moving thru me), and weekly ass explosions... they all slowly lessened... and now, well after 3 years, are almost non-existent. And I'm shocked at how much I can eat these days. Yeah, I still have to watch it... because the thing that can make my tummy hurt is the amount I eat, but that's on me... I'm in control. And of course I still pay attention to bedtime prep rules... that I don't break! But now I also sleep normally again... just my head on a pillow, on my left or right side. But I start out the first hour in bed elevated, on my back, watching TV. Then when sleepy I slide down and go to sleep.
I had an esophagectomy in November 2020. We did the trifecta; mild chemo, proton beam radiation and an esophagectomy. To the best of my knowledge, I have not experienced any dumping syndrome. My abdomen is still not happy though, experiencing a constant aching throbbing.
I pretty much eat what I want to, but much less than before my stomach was stretched. In the restaurant, I think soup, appetizers, starters, kids meals. For some reason, any McDonalds food instigates a vomit. Not sure why, I love McDonalds food. Some uncooked veggies can be problematic and best to avoid; 'raw' onions, 'steamed' beans. Proteins seems to go down well.
As for eating, I am now an official 'grazer'. I eat more frequently and much less. Gone are the days of a full entre in a restaurant. I frequent the appetizers, small plates, soup and the kids menu if allowed.
I have had abdominal pain since the surgery in November 2020. I did not get along well with the j-tube, particularly when we made it bigger due to a leak complication. I have tried a few things to rectify this constant aching pain in my attempt to return to normalcy:
1) After removal of the j-tube and all complications behind me, I treated my pain with Over The Counter (OTC) pain meds; aspirin, Tylenol and Advil, 2 of each daily. I started bruising which I attributed to 'getting old'. My oncologist informed me bruising was due to the OTC pain meds.
2) Mayo Psychiatry - we tried numerous anti-depressants which basically turned me into a vegetable. No help, I have moved on.
3) Visceral Massage - My Chiropractor recommended visceral massage from a local practitioner. The theory was breaking up scare tissue in my abdomen, similar to my hip resurfacing in 2006. We have not resolved the abdominal pain issue, but is sure feels good every week. He practices using a Rolfing massage technique.
4) M-Fairview Pain Clinic in Minneapolis - My dental surgeon recommended seeing a 'Pain Clinic'. My General Practitioner (GP) referred me to M-Fairview at the University of Minnesota. We tried a lot of things; acupuncture, tens unit, opioids, spinal injection. Now we are contemplating a implanted drug pump, a Medtronic SynchroMed II. With FOLFOX chemo coming soon, I am reluctant to dive into an additional complication, The Pump.
5) Beyond the Pain Clinic referral, my GP prescribed medical cannabis. Yeah, right... I tried it and it worked, as well as the OTC pain meds anyway. I take the oil and tablets et the brew with mostly CBD (Indigo). The heavy THC is NOT something I am looking for. Not all CBD is the same. We will see where this goes when we go full on FOLFOX.
Bottom line, no silver bullet for the abdominal pain.
Look... we all travel the post-op road a bit differently. I've talked to hundreds of my fellow EC patients. As I counsel them, one of the things I tell them is to experiment as much as they want... OR... don't experiment AT ALL! Just put up with some misery and keep shoving it in! Force your body to figure things out.
Us esophagectomy patients have most things in common post-op. And some of us have some unique things going on. And comorbidities add to our problems.
For me... I was crazy tight post-op... and that was never going to change. I could not swallow a teaspoon of rice, even at 5 months post-op... it simply would not go down. So at 6 months post-op I got my first of 4 stretches. One a month for 4 months. Didn't take long... put on 20 lbs in less than 2 months! Have now put on 35 lbs total... of the 60 I lost... been holding there for 2 1/2 years now.
But... the first 6 months to year post-op... EVERYTHING have me problems! Was it the amount I was taking in at one sitting? Was it what I was eating/drinking? Was it the temperature of it? Was it the time of day? ALL OF THE ABOVE! And since my tummy always hurt... and later my intestinal pains were crazy... my ass was exploding... regardless of what I was taking in, I thought, why bother trying to find out what's working and what isn't? Because it seems almost nothing is working! So... I made zero adjustments. I wanted to eat like I always did... my body was just going to have figure things out... because I wasn't going to change!!
Yeah... it sure took it's sweet time... 12 to 24 months... but it finally rewired itself to get digestion done again. My new digestive system (without vagus nerves now), understood I wasn't going to change, so it had better get with the program and make changes! The tummy pains (ok, call them dumping syndrome, I don't care), my intestinal cramps (from those gas bubbles moving thru me), and weekly ass explosions... they all slowly lessened... and now, well after 3 years, are almost non-existent. And I'm shocked at how much I can eat these days. Yeah, I still have to watch it... because the thing that can make my tummy hurt is the amount I eat, but that's on me... I'm in control. And of course I still pay attention to bedtime prep rules... that I don't break! But now I also sleep normally again... just my head on a pillow, on my left or right side. But I start out the first hour in bed elevated, on my back, watching TV. Then when sleepy I slide down and go to sleep.
Gary, can you elaborate on your "bedtime prep rules"? Did you experience getting hot, feeling like you are going to pass out, and abdominal pain right after eating?
Gary, can you elaborate on your "bedtime prep rules"? Did you experience getting hot, feeling like you are going to pass out, and abdominal pain right after eating?
The post-op journey is just a bitch. There are many parts and phases to pass thru on our journeys, and while we patients usually see many of the same things... these "things" can vary in intensity, duration, and if we even see them at all. From recovery from our surgical wounds, to J tube feeding and weaning off these feeds, to weaning off our pain meds, to seeing what our ability to swallow is post-op (do we need some stretches?), to tummy aches, intestinal issues, pylorus functioning, to pooping, diarrhea (or constipation), to sleeping (learning to stay on our backs and elevated), to seeing reflux and maybe even aspiration events. And ALL OF THESE THINGS... have zero to do with our cancers... and is it making a return visit any time soon? This is always in the background as we deal with the crazy post-op aftermath.
So... getting ready for bed... and trying to get some half decent sleep... and AVOID REFLUX AND ASPIRATION. But early on post-op... things usually suck! Just too easy to see reflux and even aspiration events... which can lead to a hospital visit and even aspiration pneumonia (not good).
Like many, I don't eat (or even drink) much, two hours before bedtime. And maybe during dinner, if I've had red spaghetti sauce, or some semi spicy food, I'll pop a Tums or Gaviscon. Then at bedtime, I may or may not pop another Tums, or many take some Gaviscon liquid or Pepto or Mylanta, etc. I'll then sit up at 30 to 45 degrees and watch TV until I'm tired and ready to go to sleep. This is usually another hour or so... so now it's been 3 to 4 hours since I last ate something... I know my stomach is empty... far less chance I'll see any reflux.
The problem is... this routine of mine, and the results I now see, and my ability to now sleep flat once again... and the frequency of reflux events... all this has changed dramatically over the first two years post-op. And the reason for this is because the surgical rearrangement of our insides actually changes a bunch as the post-op months roll by. Our new stomaphagus settles in... stretches a bit in place. And our motility changes over time (pylorus changes, whether done with botox, dilation, or endoscopic snip snip)... and this is also a big factor in what we may say when we're lying in bed... whether at 30 degrees on our backs... or now laying flat... maybe rolling over on our left or right sides (which I can now do... my head just on a single pillow!). I could not sleep flat my first 12 to 18 months... otherwise major reflux a couple times a week! But now I sleep normally again. It just took awhile.
So... don't sweat it... changes keep coming... it's hard to say what each of us sees on our post-op journeys. Just don't be afraid to stay the course... keep eating what you want... take note of what you are seeing. Maybe you need an anastomosis stretch... maybe a pylorus stretch... maybe creon to help with digestion... maybe a B12 shot monthly. Many possibilities.
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Look... we all travel the post-op road a bit differently. I've talked to hundreds of my fellow EC patients. As I counsel them, one of the things I tell them is to experiment as much as they want... OR... don't experiment AT ALL! Just put up with some misery and keep shoving it in! Force your body to figure things out.
Us esophagectomy patients have most things in common post-op. And some of us have some unique things going on. And comorbidities add to our problems.
For me... I was crazy tight post-op... and that was never going to change. I could not swallow a teaspoon of rice, even at 5 months post-op... it simply would not go down. So at 6 months post-op I got my first of 4 stretches. One a month for 4 months. Didn't take long... put on 20 lbs in less than 2 months! Have now put on 35 lbs total... of the 60 I lost... been holding there for 2 1/2 years now.
But... the first 6 months to year post-op... EVERYTHING have me problems! Was it the amount I was taking in at one sitting? Was it what I was eating/drinking? Was it the temperature of it? Was it the time of day? ALL OF THE ABOVE! And since my tummy always hurt... and later my intestinal pains were crazy... my ass was exploding... regardless of what I was taking in, I thought, why bother trying to find out what's working and what isn't? Because it seems almost nothing is working! So... I made zero adjustments. I wanted to eat like I always did... my body was just going to have figure things out... because I wasn't going to change!!
Yeah... it sure took it's sweet time... 12 to 24 months... but it finally rewired itself to get digestion done again. My new digestive system (without vagus nerves now), understood I wasn't going to change, so it had better get with the program and make changes! The tummy pains (ok, call them dumping syndrome, I don't care), my intestinal cramps (from those gas bubbles moving thru me), and weekly ass explosions... they all slowly lessened... and now, well after 3 years, are almost non-existent. And I'm shocked at how much I can eat these days. Yeah, I still have to watch it... because the thing that can make my tummy hurt is the amount I eat, but that's on me... I'm in control. And of course I still pay attention to bedtime prep rules... that I don't break! But now I also sleep normally again... just my head on a pillow, on my left or right side. But I start out the first hour in bed elevated, on my back, watching TV. Then when sleepy I slide down and go to sleep.
Best of luck. PM me if you'd like.
Gary
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2 ReactionsHey @tomhayes54, I just wanted to pop in and say "welcome"! Your experience with esophageal cancer will be appreciated by many.
Do you have to eat less but more frequently? What has been suggested by your cancer team to manage the aching and throbbing you're experiencing?
Hi,
As for eating, I am now an official 'grazer'. I eat more frequently and much less. Gone are the days of a full entre in a restaurant. I frequent the appetizers, small plates, soup and the kids menu if allowed.
I have had abdominal pain since the surgery in November 2020. I did not get along well with the j-tube, particularly when we made it bigger due to a leak complication. I have tried a few things to rectify this constant aching pain in my attempt to return to normalcy:
1) After removal of the j-tube and all complications behind me, I treated my pain with Over The Counter (OTC) pain meds; aspirin, Tylenol and Advil, 2 of each daily. I started bruising which I attributed to 'getting old'. My oncologist informed me bruising was due to the OTC pain meds.
2) Mayo Psychiatry - we tried numerous anti-depressants which basically turned me into a vegetable. No help, I have moved on.
3) Visceral Massage - My Chiropractor recommended visceral massage from a local practitioner. The theory was breaking up scare tissue in my abdomen, similar to my hip resurfacing in 2006. We have not resolved the abdominal pain issue, but is sure feels good every week. He practices using a Rolfing massage technique.
4) M-Fairview Pain Clinic in Minneapolis - My dental surgeon recommended seeing a 'Pain Clinic'. My General Practitioner (GP) referred me to M-Fairview at the University of Minnesota. We tried a lot of things; acupuncture, tens unit, opioids, spinal injection. Now we are contemplating a implanted drug pump, a Medtronic SynchroMed II. With FOLFOX chemo coming soon, I am reluctant to dive into an additional complication, The Pump.
5) Beyond the Pain Clinic referral, my GP prescribed medical cannabis. Yeah, right... I tried it and it worked, as well as the OTC pain meds anyway. I take the oil and tablets et the brew with mostly CBD (Indigo). The heavy THC is NOT something I am looking for. Not all CBD is the same. We will see where this goes when we go full on FOLFOX.
Bottom line, no silver bullet for the abdominal pain.
Cheers,
Tom
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2 ReactionsGary, can you elaborate on your "bedtime prep rules"? Did you experience getting hot, feeling like you are going to pass out, and abdominal pain right after eating?
I'm tagging @mrgvw to make sure he saw your question about "bedtime prep rules". I bet others would appreciate hearing about it too.
Gary, do you mind sharing more here?
The post-op journey is just a bitch. There are many parts and phases to pass thru on our journeys, and while we patients usually see many of the same things... these "things" can vary in intensity, duration, and if we even see them at all. From recovery from our surgical wounds, to J tube feeding and weaning off these feeds, to weaning off our pain meds, to seeing what our ability to swallow is post-op (do we need some stretches?), to tummy aches, intestinal issues, pylorus functioning, to pooping, diarrhea (or constipation), to sleeping (learning to stay on our backs and elevated), to seeing reflux and maybe even aspiration events. And ALL OF THESE THINGS... have zero to do with our cancers... and is it making a return visit any time soon? This is always in the background as we deal with the crazy post-op aftermath.
So... getting ready for bed... and trying to get some half decent sleep... and AVOID REFLUX AND ASPIRATION. But early on post-op... things usually suck! Just too easy to see reflux and even aspiration events... which can lead to a hospital visit and even aspiration pneumonia (not good).
Like many, I don't eat (or even drink) much, two hours before bedtime. And maybe during dinner, if I've had red spaghetti sauce, or some semi spicy food, I'll pop a Tums or Gaviscon. Then at bedtime, I may or may not pop another Tums, or many take some Gaviscon liquid or Pepto or Mylanta, etc. I'll then sit up at 30 to 45 degrees and watch TV until I'm tired and ready to go to sleep. This is usually another hour or so... so now it's been 3 to 4 hours since I last ate something... I know my stomach is empty... far less chance I'll see any reflux.
The problem is... this routine of mine, and the results I now see, and my ability to now sleep flat once again... and the frequency of reflux events... all this has changed dramatically over the first two years post-op. And the reason for this is because the surgical rearrangement of our insides actually changes a bunch as the post-op months roll by. Our new stomaphagus settles in... stretches a bit in place. And our motility changes over time (pylorus changes, whether done with botox, dilation, or endoscopic snip snip)... and this is also a big factor in what we may say when we're lying in bed... whether at 30 degrees on our backs... or now laying flat... maybe rolling over on our left or right sides (which I can now do... my head just on a single pillow!). I could not sleep flat my first 12 to 18 months... otherwise major reflux a couple times a week! But now I sleep normally again. It just took awhile.
So... don't sweat it... changes keep coming... it's hard to say what each of us sees on our post-op journeys. Just don't be afraid to stay the course... keep eating what you want... take note of what you are seeing. Maybe you need an anastomosis stretch... maybe a pylorus stretch... maybe creon to help with digestion... maybe a B12 shot monthly. Many possibilities.
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