Tuesday, February 19, 2013

Getting Personal: Lessons About GERD, Cancer, HAES, Bulima & Food Restriction

Read this if you are overweight. And read this if you purge through vomiting. Read this if you restrict your intake to less than you know your body needs. And read this if you've been told you have reflux, GERD or Barrett's esophagus.

Stomach--cow, not human, though!
I was recently contacted by a blogger colleague, aware of my Health At Every Size (HAES) philosophy from my blog writings. She was interested in referring a client for Medical Nutrition Therapy for reflux, with a history of Barrett's esophagus. For those of you not in the know, reflux, GERD or gastroesophageal reflux disease, is a condition where acid from the stomach comes up into the esophagus—that tube connecting your throat and your stomach—where it's not meant to be. 

Over time, that stomach acid starts to change the lining of the esophagus and cause inflammation, heartburn and discomfort. For about 5-15% of sufferers, the cells lining the esophagus begin to change, resulting in a condition called Barrett's esophagus. Barrett's esophagus can be well controlled with diet and medication, but in some cases progresses to esophageal cancer. By the time cancer is diagnosed in those patients, the cancer has invaded the area making the prognosis far from great.

My mother was diagnosed with adenocarcinoma—a cancer of the esophagus.

Now, back to the referrer. She wanted to be sure that I wouldn't focus on the client’s weight; because that's what people tend to do—just focus on the weight. What my fellow blogger was unaware of was that I was in the midst of struggling with the horrific consequences of this very common symptom, reflux, which ultimately led to cancer of the esophagus, a potentially preventable disease. And I am painfully aware of all the risk factors that contribute to esophageal cancer—including obesity. 

For most of my years, my mother popped Rolaids and Tums, those chewable antacids, like they were candy. She didn't binge, but she ate compulsively. She wasn't a drinker or a smoker—alcohol and smoking also add to the risk—but she couldn't part with her coffee which like most things acidic make things worse. And she was obese, a major risk factor for reflux. In fact, after her gastric bypass surgery, her reflux disappeared. For 8 years, in fact, she experienced little or no reflux. But it was too late; the damage was done.

Now if you're thinking you're not the intended target for this post, don't stop reading! My story, unfortunately, impacts the purgers among you as well as those dreadfully afraid to eat. So please keep reading.

While the verdict isn't in yet, there appears to be an increased risk of reflux, Barrett's esophagus and cancer, based on a study of studies, a meta analysis, on bulimics. This should come as no surprise, as acid going where it's not meant to go is what causes the problem. Fear may not drive you to change your behavior. But perhaps you haven't considered your risk of getting a potentially fatal cancer, right up there with dental issues and of course, sudden death, all consequences that you can prevent.

So where do you restrictors fit into this article?

Let me enlighten you a bit more about the treatment for esophageal cancer. The best hope for survival is to have surgery, after aggressive chemo and radiation. If you're a candidate for surgery, you're in luck. Well, sort of. The surgery requires removal of most or all of your esophagus and creation of a new pseudo-esophagus from your stomach. It's a seriously risky surgery, but can be done well by top surgeons. We were fortunate, and in fact, her past gastric bypass likely aided the situation, making it easier to use her already bypassed stomach remnant.

If you've long struggled with your weight—like my mother did—being told you have to take in many hundreds of calories a day doesn't sit too well. So any opportunity to stop the tube feeding (from which the bulk of nourishment comes during the initial and very critical weeks of healing), is taken. 

Yes, she restricted. The lack of significant weight loss convinced her that there was no issue with her minimal nourishment. Never mind that she became lethargic, spending most of her days in bed, barely able to walk. Or that she became depressed, or that her thinking was far from clear. (Yes, sometimes it's difficult to see the damage from restricting as it's happening.)

That's the state she was in this weekend when I visited. She had convinced the doctors by telephone that she was eating fine, and they were even considering removing her feeding tube tomorrow. 

Except that now she was readmitted and has a blood clot in her lung. I can't say why, these things do happen, but laying in bed fatigued from poor intake no doubt didn't help.

Back to HAES and my fellow blogger.

I fully understand the experience of the obese, being told that their weight is the cause of all evils—even the common cold! As an RD, I would never just focus on weight loss for someone with GERD. Rather, I would address symptom management with volume changes, and reduce acidic foods that aggravate the inflammation. I'd guide the patient on foods and meal content that might be contributing to the reflux.

But would I avoid discussion of weight loss in an obese patient, if their eating were excessive for their need, if they had been gaining weight? Or for that matter, if portion adjustments could be made, reducing both calories and stomach volume that would improve acid reflux, and also result in weight loss? Studies show an association, and that's not to say that all obese people need to lose weight. I get it.

That said, for those with GERD, losing weight tends to improve symptoms, and gaining weight tends to worsen them in obese individuals, especially in those with intra-abdominal obesity.  

Thanks for reading. Please do me a favor and share this with someone you know whose's at risk. Tweet it, blog about it, Facebook 'like' it or simply talk about it.


  1. Is there any way of being tested for this type of cancer if you do have a history of purging?

    1. You can discuss your history with your MD and inquire about having an endoscopy so they could take a look at your esophagus and evaluate.

  2. Good post. I have been suffering with this lately. I had GERD years ago in college after many late nights and pots of coffee, stress, and whatever else and I wasn't overweight. It disappeared for years after treating for three months with tagamet. It also made a few reappearances here and there, but never for very long.

    My reflux came back recently after this Christmas season. I was eating more chocolate, and sweets than my body could handle. So I laid off of chocolate and downed raw apple cider vinegar mixed with water and it seemed to go away. When I started to eat what I wanted later, though, it has reappeared and so many things aggravate it. Overeating is definitely one of the things, that and dairy, sweets, chocolate specifically, peanut butter, fatty foods. Anyway, this post is giving me reason to pay attention and cut out the things that cause it, at least for now. I have no need for cancer! In fact, it was that fear that led me to the doctor years ago to heal the reflux.

    1. If I convince even one individual to change behaviors which contribute to this awful disease I will be pleased!

  3. Hi Lori,
    I'm so sorry to hear that your mom has suffered so much and continues to suffer. I hope she is getting well now that she is back in the hospital. It really does highlight for me, however, the pathology of diets and eating disorders. Despite that she was so ill she was still finding a mechanism to restrict her calories. As someone with anorexia I know how tricky that can be and feel so sad that even at our most unhealthy (with medical issues other than Eds) we struggle to feed our bodies so that they can heal. Our expectations of our bodies are ludicrous. I so hope she can turn things around increase her health. She's in my prayers!

  4. My thoughts and prayers are with your Mom and your readers who are going through similar situations. As for myself...I have noticed that when I "try" to eat "normally"...I have a terrible time with unprovoked reflux...and need to discreetly spit the foul liquid ..(sorry for the detail). "Relief" for me, sadly, has been to limit the caloric content and quantity of foods...and, admittedly...this must qualify as restriction. As in your mother's case...the result has been lethargy, increased isolation, disorganized thinking, lack of desire to move, depression and all this whilst retaining a fairly unremarkable weight loss..despite extremely low caloric intake (I will respect fellow followers in not providing numbers). The danger present is that it can lead one to believe that it is possible to simply not "need" much food to exist...and, deep-down inside...we know this not to be true.

    Thank you for this eye-opening post Lorie. Big fan across the pond.

  5. I'm not sure where or if I fit in . I'm underweight, 31, and experience a ton of symptoms (this is just one). Docs not much help. I'm underweight, lethargic, fatigued. I eat consistently all day (was NEVER an anorexic eat 500 cals a day gal...I don't how weight loss happened..I seemed to eat a reasonable amount, and my age is not spring chicken anymore, ..digestion? stress? exhuastion? depression? orthorexia? who knows)...
    anyway, now I do the "binge" and compulsive eating very late at night...but on "your eatopia" site I think they say that is "reactive eating" (which is difficult to embrace...I feel ashamed about it and also am having for long time now "stitches" in lower abdomen, constipation, everything) not sure and not sure what the heck to eat ...jeesh. I just eat the same things a lot anyway cause i like them and their "safe" and their easy...but...
    I'm confused :)