← Return to Esophageal cancer treatment: Anyone have good experiences to share?

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@earnest

Pretty cool. How long after surgery were you back to eating normally? I mean regular foods like burgers and fries, steak and potatoes, fried chicken? I know it'll take a while before I return to the volume I was used to, I just want to know when I can expect to get back to the foods I love. I was 165 lbs. on my best day standing 6 ft. tall. But I ate like a horse. Now I'm down to 128 lbs and can't eat freaking cereal.😭 I hope it didn't take 4 years. I'm almost 65 and I can't imagine waiting 4 years to get back to normal.

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Replies to "Pretty cool. How long after surgery were you back to eating normally? I mean regular foods..."

Things improved for me greatly in my second year post-op... so that's both the good and the bad news! Just knowing that you haven't yet reached a plateau in your post-op journey is helpful... but also the fact that it takes sooooo long can be a bit depressing!
Now I had a setback post-op... my anastomosis was crazy tight. Of course I had no clue as to why 3 months... 4 months... and finally more than 5 months post-op I still couldn't swallow a half teaspoon of rice! I was still dropping weight! Can't say I was 100% suicidal... but I was starting to think about it a tad... like is this all there is... is this my quality of life going forward!?

But they sent me in for a stretch at 6 months post-op. My GI doc, who was crazy experienced handling us EC patients and esophagectomy patients... brought me along slowly. He told me I was only 5 mm open at the anastomosis. Normal healthy folks are 25 to 30 mm. He told me that was never going to happen again... but he'd eventually get me "passable". He only stretched me to 8mm the first dilation.... but heck, 8mm is 60% better than 5mm! But he didn't want to cause a perforation... so he said he'd see me in 4 or 5 weeks... we'll see how things were holding... and go from there. But he did say that waiting until 6 months post-op was a good thing as my scar tissue at the anastomosis had firmed up and would now hold a stretch much better. But after another 4 months and 4 total stretches, he got me to 17 mm. Still not perfect... but close enough! I put on 26 lbs in maybe only 2 months! During my entire EC journey I went from 220 lbs down to 160 lbs. But once the stretches started I was back to 185 lbs quickly... and within a year I settled in at 195 lbs. I'm at 198 now, years later.

But in terms of eating... you just adapt. Don't ever think that this food won't work, or this drink won't work, or I can't eat at this time of day, or cold vs hot, or sugars or spicy or whatever just won't work any longer. NOPE! Just keep shoving it in... force your body to figure things out... get re-wired. It may take a year or two... for all those tummy aches and intestinal pains to subside... for firm poops to come along once again... but it does happen! It's just slower than slow. I now eat whatever I want... doesn't matter. If I want to eat two bags of M&Ms... or 4 cookies... or a dish of ice cream... no big deal. Red or white spaghetti sauces... sausage, whatever... it all works. Now I may take a Tums or two while eating... or some Gaviscon at bedtime... just to be sure I don't suffer any nasty reflux... but it's all good now. It just took about 18 months post-op.

But early on... almost nothing you eat or drink seems to work... where you don't suffer dumping syndrome, tummy aches, ass explosions... whatever. But you can't give in. Sure, you cut up your pork chops or whatever into smaller pieces, chew well, to make things go down better. You get a stretch or two or ten if you need them.... but usually in time... things improve and become quite acceptable. Of course all of this only matters if you stay NED... no recurrence. Otherwise it's time to put your game face back on and get treatments going once again.

So yes... IT SUCKS! Of all the things we go thru, the post-op journey back to normal digestion (if we can call it that)... this is by far the hardest. Much tougher than chemo, radiation, the esophagectomy itself, and adjuvant immunotherapy. It's just because it is so fking slooooow... and you must suffer daily... and your future is uncertain... and IT'S DEPRESSING!!

But you stay the course... eat what you want... often... make your body adapt. But just remember... other things can be going on that are not related to our EC or the esophagectomy. It's just that we tend to think of all that we are seeing post-op as due to these things. But you could be developing some allergies... or you could become more lactose intolerant (common for many of us as we age). Or maybe after all our treatments our taste buds have been altered some... alcohol doesn't taste as good any longer... or coffee or whatever. I've talked with hundreds of us esophagectomy patients... I've seen it all.

Be well.