Is it Dumping or SIBO? - or a bit of both?

To be honest... I have no clue... and I've not heard of anyone officially dx'd with SIBO... and I've with hundreds of us esophagectomy patients. But that's not to say it hasn't happened.

And I can't say I actually had Dumping Syndrome (DS) either... to me it was just a catch-all term used to describe what we all tend to see... nasty tummy pains while taking in food and drink... and the nastiness continues as our food passes into the small intestines and causes us more discomfort making its way thru the miles of small and large intestines.

Ok... classic definition of DS... food passes very quickly thru the pylorus and into our small intestines ... known as rapid gastric emptying.... Causes cramping pain, nausea, fatigue, etc. No fibro it seems like we all get this for at least many months... some of us for a year or two... for some of us the symptoms lessen... but never quite go away.

So what did I do about this... and how do I look at this discomfort, and how do I advise others? Well... like most of our doctors who understand (sorta) what us esophagectomy patients are going thru post-op... they chalk up almost EVERYTHING to DS. Bottom line... we have a new geometry down there... our stomachs now hanging vertically and being used as our new esophagus. But the biggest factor (to me) that affects us most, is a branch of the vagus nerve being severed. Our bodies, and ability to begin the digestion process as we always once did... has been drastically altered. Our internals are in chaos... and those all-important communication signals aren't being sent around to our many organs when food and drink are first taken in. So my approach was a bit different. I suffered regardless of what I was ingesting... a little drink... proteins, sugars, carbs, whatever... EVERYTHING hurt my tummy and bothered me for an hour or so. So I figured why experiment with varying diets, how much I ate, what time of day I could eat, what temperatures of my food and drink worked better... IT ALL SUCKED for at least a year or two. So my plan of attack was not to change a damn thing. I wanted to return to normal one day... so I ate whatever the hell I could get down... in what limited amounts (in that first 12 to 18 months)... and I forced my body to power thru it all... get accustomed to this new way of doing things without the vagus nerve... find a way to re-wire itself to once again send those signals around from the stomaphagus to the brain to the liver, lungs, heart, pancreas, intestines, etc. But it was an excruciating slow process. By two years post-op the DS pains were still around... but greatly reduced! My body was indeed finding a new way to get the old job done. I now eat whatever I want in fairly big amounts too. I can go back to eating a few larger meals a day, if I so choose... but I actually prefer to still graze all day long (like we all had to learn post-op). True, I don't feel hunger like I once did... I'm more driven by my taste buds telling me... Yeah, I could sure go for some of that! And yes, my taste buds get me into trouble every now and then and I overeat a few bites too many and I pay the price... but even this is rare now. I pretty much know my limits... and if I want more, I'll just come back in 30 to 60 minutes. I can eat a Big Mac, some fries and my drink, all in one 10 minute sitting now... if it's been awhile since I've eaten. Never thought that was coming!

But as I counsel others, I certainly see, and pay attention to, specific problems they are having post-op. For some they hurt terribly... but technically it's because of the opposite of DS... they have crazy slow motility. They'll go in for their endoscopy, and the GI doctor will see an undigested pill in their stomachs from the night before. They typically have a malfunctioning pylorus and need a stretch there, or a shot of botox (or 3 or 5 in the coming months)... or even G-POEM surgery to correct their slow gastric emptying. But others have the opposite problem, their pylorus sphincters are wide open, or non existent (who knows what the surgeon did while performing our esophagectomies)... and the patient suffers greatly. I've seen it all.

And yes, with usually the top portion of the stomach removed during our surgery, many suffer from B12 deficiency (among other vitamin and mineral absorption issues)... and so they get the appropriate supplements or shots of these things monthly.

Ok... sorry about the book I just wrote, but tbh... I only scratched the surface here.
Be well,
Gary
Southern California

What Gary said is so true. All are different though. My dumping syndrome is due to the pylorectomy they did intraoperatively and coupled with the vagotomy that we all get when cutting the esophagus. my dumping symptoms are very different though. When I overeat, I start getting weak. My heart rate is usually in the low 50's and it goes to 80 to 100. If I don't lay down right away, It will take 2 hours to go away. If I do immediately lay down, it will subside in 15 or 20 minutes. I handle this by limiting my quantities. I am in the subset that still get hungry and feel full. I also don't drink any liquid during or after my meals as this will cause an immediate dump. I can drink before eating as the liquid is ok to dump or gets absorbed quickly. All foods are OK and none more than any cause a dump. For me it's just quantity. It's always the last bite that will get ya. I don't have SIBO as I don't eat a lot of sugar. I'm of the school that intestinal health boosts the immune system and I rely on my immune system to prevent cancer re-occcurrance. I use probiotics (the good kind that has to be kept refredgerated and also is expensive) I limit sugar and paradoxically this is when I started gaining weight again. On the wild side I ingest essential oils of thieves and oregano from young living. I was doing this 3 times per day, but am down to one time per day as a preventative. The antibiotics that you are on will knock out the SIBO pretty quickly. you will need a probiotic so that you grow good gut bacteria and backing off on the sugar will prevent re-occurance. Everyone is different and we do need to be in touch with our own bodies and figure out what it needs. Many different strategies and a lot of trial and error. You'll get many strategies here on this blog and also on the Zoom calls. You just need to find what works for you. Best of luck, Steve

Thanks to you both, Gary and Steve! It's always good to hear how others' courses have gone in the first 1-2 years post-op.
I have been reviewing journal articles looking for reports of SIBO after esophagectomy. It seems to be under-recognized and is one of several malabsorption syndromes that can lead to continued weight loss/malnutrition after esophagectomy (and other major upper GI surgeries). Others include pancreatic insufficiency (EPI) and bile acid malabsorption (BAM). Symptoms can be tough to differentiate from the troublesome symptoms that are ALREADY present just due to the surgery itself. I wonder if there may be a significant number of people who actually have one of these syndromes but attribute their GI ailments to the surgery.
Thanks again very much. We will see how his antibiotics and low-FODMAP diet work.

Thanks Gary. Really interesting reading. I'm still trying to adjust my diet to find something that works. My biggest issue is waking regularly with horrendous reflux. Burning like you wouldn't believe plus coughing and vomiting. It just happens every couple of weeks and puts me down for a couple of days after. I've tried everything to prevent it that I can think of.

You might ask your doctor about trying sucralfate liquid 4 times a day last dose at bedtime and baclofen 5 mg at bedtime.

I take sulcralfate tablets 3 times daily, Omeprazole, domperidone and then acidex liquid at bedtime . just got my next appointment today for April 1. Some of my problem I admit is anger that this happened to me and frustration as well when I can't do stuff. Seeing the GP later today as my pills seem to be getting stuck. Not that they can help much as being such a small country we lack a lot of experts in various fields. When I first developed symptoms the GP said it was my reflux playing up. A locum arranged the gastroscopy that found the tumor.

I have lived with this ever since my 2010 esophagectomy , read my profile for more but a couple of questions. Do you sleep inclined? Do you eat before bedtime and have you tried different schedules and foods?

I found that for me, that eating something big right before i go to bed helps act like a blocker and keeps the acid down where it belongs. I realize that Drs tell you to never do this but after trying all of their methods and still miserable I decided to try my own way and found that this works for me for the most part.
That's not to say that it still doesn't happen but its just not as often.

Thanks for this! Will show to my husband. I wish all surgeons had the same long-term followup interest and care that this surgeon does.

She was the surgeon that saved my life. She is patient focused to the point that she actually gives her patients her personal cell number!

Interesting. Don't know if I'm brave enough to try eating late. Definitely sleep inclined. We are considering an adjustable bed although they are about $6000 NZ so really pricey. In hospital today, been vomiting since yesterday morning and I'm hoping for a gastroscopy but health system in Christchurch is under so much pressure I'm more likely to be sent home with nothing done