Each month we write up a history of one of RefluxMD’s members and ask Dr. Dengler to comment. We found this story particularly interesting since we were unable to determine if Gail had Barrett’s esophagus or not – and if she did have Barrett’s, what should she be doing now?
Gail’s story about her Barrett’s esophagus
Gail is diagnosed…
Gail was in her fifties when she was diagnosed with GERD and Barrett’s esophagus seven years ago. She went to see her doctor for a routine checkup and mentioned to him that she was having occasional chest pains. He encouraged her to get an endoscopy, which she did, and was told that she had GERD and Barrett’s esophagus – a condition that Gail had never even heard of before that day.
Her symptoms get worse even while taking PPIs
Her doctor prescribed a powerful proton pump inhibitor (PPI) as a remedy for her Barrett’s esophagus, and Gail faithfully took one pill every day for seven years. But the medication did not stop her chest pains. In fact, they were having the opposite effect. The pain was getting stronger and more frequent. She felt more and more miserable, and at times, the pain was so severe that she could not eat or drink anything. After a while, she began to question if the discomfort she had was heartburn or even the result of acid reflux at all. According to Gail, she never felt that she “struggled with traditional heartburn or acid reflux symptoms before or after the diagnosis,” and she had a “nagging feeling” that the PPIs were not the proper medication for her. However, she was never made aware of any other alternative treatment for her Barrett’s esophagus, so she continued to follow her doctor’s orders.
Annual Barrett’s esophagus check ups bring confusion
For the next seven years Gail had an annual endoscopy to ensure her Barrett’s esophagus wasn’t progressing. What was confusing, though, was that some evaluations would show evidence of Barrett’s esophagus and others would not. She was confused by the irregularity of the findings, but her doctor told her that, “once we find that you have Barrett’s esophagus, you will always have it, even if it doesn’t show up on the endoscopy.” When she asked about the possibility of to getting off PPIs, the response from her doctors was “absolutely not!” So Gail kept taking the medicine out of fear and confusion, even though she had a gut feeling that it wasn’t right.
Additional Barrett’s esophagus testing yields no answer
Gail had her last endoscopy in December of 2012, which once again indicated no presence of Barrett’s esophagus. At the time, she was still having severe chest pains, so the doctors implanted a Bravo capsule into her esophagus to measure for the presence of acid in the esophagus for 48 hours. Unfortunately, the monitor battery malfunctioned, and even though they could not get a conclusive reading, the doctor decided that the best treatment for her was to double her intake of daily PPIs – from one daily pill to two.
Learn more: What to expect from ambulatory pH testing
Gail takes control of her health
Frustrated with this recommendation and after seven years of suffering, Gail decided to take control of her own health. She had lost confidence in her doctor, and she decided to seek alternative options. She talked it over with her husband and then began to explore the Internet to find stories about people like her, “who had been diagnosed with Barrett’s esophagus to find out what they did about it.”
In January 2013, Gail decided to “bite the bullet” and stop taking the daily PPIs.
Her acid reflux became unbearable and she “was suffering from everything imaginable.” She felt that her body was not functioning properly at all. After several months of suffering, Gail was tempted to get back on the PPIs because she felt so miserable. She persevered and after seven months her symptoms began to lessen and nine months after eliminating PPIs, she is greatly improved. “I am just so thankful that my body was able to work through it.”
What does Dr. Dengler think?
RefluxMD asked Dr. Dengler to review Gail’s comments and make some recommendations for her to consider. Here is what he had to say:
First, I want to thank Gail for sharing her story with RefluxMD. As I am certain you understand, without her case file and test results, it is impossible for me to be specific in my comments or even confident in my suggestions since I do not have all the facts. However, I have several thoughts for consideration based upon the information provided that may help other RefluxMD members as they treat their disease.
How Barrett’s esophagus is diagnosed
Gail has definitely been through an undesirable experience. When she saw her doctor with what she described as “occasional” chest pains, she was advised to get an endoscopy, which led to her Barrett’s esophagus diagnosis. Whenever I come across this scenario, I always ask these questions: Who told you that Barrett’s esophagus was present? Were biopsies taken? I also ask the patient to supply me with the endoscopist’s dictation, as well as the pathology report from biopsies.
Barrett’s esophagus is defined as “intestinal metaplasia in a visible segment of columnar lined esophagus.” Columnar lined esophagus is a visible abnormality seen on the endoscopy, and biopsies must then be taken to see if special cells called goblet cells are seen. If both of these criteria are satisfied, Barrett’s esophagus is present.
Learn more: Inside your esophagus: The damage caused by GERD
There can be variability in the expertise of the pathologist to identify intestinal metaplasia, as well as with the gastroenterologist to identify abnormalities, such as columnar lined esophagus, during an endoscopy. I am very careful to be SURE that these criteria for Barrett’s esophagus are satisfied. If not, a patient will be subjected to endoscopies every three years in addition to the worry that they are at an increased with for esophageal cancer.
Learn more: Can you trust your pathology results
About her puzzling endoscopy results
Annual endoscopies to survey for the progression of Barrett’s esophagus, as in Gail’s case, is pretty frequent relative to most recommendations. It is very puzzling that findings varied relative to the presence of Barrett’s esophagus during these yearly endoscopies. While small segments of Barrett’s esophagus have been known to regress, Barrett’s esophagus will not come and go. Also, she should have had biopsies at each of these endoscopies to provide information necessary in monitoring Barrett’s esophagus, if indeed it is present.
Does Gail have Barrett’s esophagus?
So we get to these questions: Does Gail have Barrett’s esophagus? Did she ever have both the visible findings and biopsy findings that are required for the diagnosis of Barrett’s esophagus? What was or was not seen on each of her endoscopies? Did she ever have sufficient diagnostic findings to even have objective evidence of GERD?
It is difficult to tell. Since the Barrett’s situation is so confusing, the results of the pH test (not available due to a technological malfunction) would have confirmed or ruled out GERD.
What to expect if you stop PPIs
It is interesting what happened when Gail stopped her PPIs. It is a known phenomenon that abrupt discontinuation of PPIs can actually produce the very disease that they were given to treat in the first place. Taking PPIs changes hormone levels that govern acid production by the stomach. Even in patients who did not have GERD to begin with, abruptly stopping PPIs can produce GERD-like symptoms due to these hormone changes produced by the drug. After a period of time, the hormone level returns to normal and the “GERD” symptoms resolve. This may have happened to Gail.
Do not ignore the possibility of Barrett’s esophagus
My recommendation is not to ignore even the possibility of having Barrett’s. It carries with it a cancer risk of approximately 100 times that of the general population. When esophageal cancer is discovered early in a patient known to have Barrett’s, the cure rate is relatively good.
Follow up with a GERD expert
Now that Gail is off PPIs, I think the issue should be put to rest once and for all. I recommend an endoscopy by an expert endoscopist who can accurately and reliably assess her for Barrett’s and take appropriate biopsies. An expert pathologist can then interpret the biopsies, so she’ll know once and for all if she has Barrett’s. At the same time, a good pH study can be done to accurately either rule in or rule out GERD. I would not recommend any of this without knowing what she has been through and the confusion surrounding her condition over the years. Once this assessment is done, Gail can be educated regarding exactly what her situation is and what management choices she has. She may not need anything!
Educate yourself about your condition!
We all must be aware and completely understand what we are being told by our physicians. It is up to them to inform us accurately and up to us to demand understandable information. Although this is not necessarily the case in this situation, Gail may have been put on PPIs needlessly and was given the diagnosis of Barrett’s without sufficient criteria to do so. She was then subjected to yearly endoscopies for seven years. She may or may not have had GERD in the first place as the cause of her symptoms!
Much of this is definitely speculation, but I wanted to illustrate the complexity of gastroesophageal reflux disease and its complications and the potential difficulty in its management. Taking control of any disease one might have and clearing the confusion often provided to us by our medical system is our obligation to ourselves as patients. I wish Gail well!