We like to share real stories of people living with frequent heartburn in an effort to encourage you to continue down the sometimes frustrating road to relief. Imagine our surprise when we learned that our own Dr. Dengler had a story of his own to tell! Keep reading to learn about his diagnosis and what he chose to do about it.
As I was being wheeled into the operating room for my laparoscopic Nissen fundoplication, I reflected how I got there.
My experience as a physician treating GERD
As a physician, I had limited my clinical practice to all aspects of GERD care for the previous 11 years, including developing Heartburn Treatment Centers at community based hospitals for a comprehensive, multidisciplinary approach to this disease. I had studied GERD extensively from the viewpoint of all of the different specialists who treat the disease, usually in a very fragmented and uncoordinated way. The specialists typically involved are gastroenterologists, surgeons, primary care physicians, otolaryngologists, and others. Over the years I had taught many physicians and nurses about the latest diagnostic techniques used to evaluate GERD and had personally performed over 1,000 laparoscopic Nissen fundoplications. I had also taught the surgical technique to many general surgeons, as well. I also understood the well-documented relationship between, GERD, and esophageal cancer and how to assess a patient’s risk for this deadly malignancy.
My road to antireflux surgery
I had been having GERD symptoms for about 15 years, including frequent heartburn, morning hoarseness, and then the development of regurgitation at night. After eating a late meal, I would wake up in the morning with a bothersome vague feeling of nausea. I never took daily acid-reducing medications. I took a PPI about 2-3 times per week when my symptoms required it. In most settings, I would have been told to continue medications with little or no explanation. It is highly unlikely that an endoscopy would ever have been recommended or offered to me. I would have been put in the category of a “PPI responder” but not PPI dependent. I would not have been told that therapy would be lifelong with probable dose escalation, not informed that my condition would likely progress, and not educated regarding the surgical option. At this point, I would not have been informed that GERD carries a risk of esophageal cancer (unless I specifically inquired) nor would I have been offered a pH study to confirm the diagnosis of the disease.
In 1996, I asked one of my gastroenterology colleagues to perform an endoscopy to be sure everything was normal and that there was no visual evidence of Barrett’s esophagus. This was before the telemetry pH capsule was developed, making easy pH testing achievable. It was very unlikely, and still is, that the average patient would have been offered an endoscopy. My endoscopy was indeed normal and I continued with my mild to moderate symptoms, never requiring daily medications. In most patients, no further evaluation would have ever been recommended unless my symptoms dramatically increased, which they did not.
Between 2004 and 2006, significant new knowledge about the cellular changes that occur in the lower esophagus as Barrett’s esophagus develops and concerns about lifelong PPI use emerged. There was even a question raised about PPIs increasing the progression from Barrett’s esophagus to esophageal cancer. pH testing also became relatively easy after the telemetry pH capsule (Bravo capsule) was developed.
So, 11 years later, in 2007 when I was due my screening colonoscopy at age 50, I asked my gastroenterologist to do another upper endoscopy at the same time. Most gastroenterologists will not do this because they are paid less for an upper endoscopy done in conjunction with the colonoscopy compared to an upper endoscopy alone. They actually make a patient return another day and undergo the upper endoscopy separately since they are paid more to do this. I also asked my gastroenterologist to perform a pH study and take biopsies of my lower esophagus, even if my scope was visibly normal.
My pH study revealed much more severe reflux than I ever would have expected and the biopsies revealed the findings of microscopic Barrett’s esophagus, even though my endoscopy was visually normal. I then had an esophageal manometry study revealing that my LES was extremely abnormal with its function basically destroyed.
These studies would have never been offered if I were the usual patient since my symptoms were stable and my previous endoscopy was normal. I was only able to get them done since I knew what information was needed to evaluate a patient with GERD symptoms of 10 or more years duration and still having some, yet mild symptoms on PPIs. I knew what to ask for.
I decided to pursue surgery since I didn’t want to be on PPIs for the rest of my life, especially when good results with PPIs was unlikely because of the condition of my LES. I also wanted the reflux stopped because of my risk of cancer. I sought out an experienced antireflux surgeon and underwent a laparoscopic Nissen fundoplication.
The outcomes of my surgery
I was back in my office four days after my surgery and was back to running and working out within two weeks. My symptoms completely resolved: no more heartburn and no more waking at night with regurgitation. Interestingly, I did not appreciate the severity of the symptoms I was having until they were gone.
Most importantly, I was comfortable that I had done everything I could do to minimize or even eliminate my cancer risk. By the way, now six years after surgery, my GERD symptoms have never returned and I do not require any acid suppression therapy.
One year after my surgery, I underwent another upper endoscopy with extensive biopsies. There was no trace of any Barrett’s cells and a pH study showed that the surgery stopped my reflux, which was no surprise to me.
I based my decision for surgery on my knowledge of the condition and the results of the thorough and complete evaluation that I received only by being a “medical insider,” specializing in GERD and directing my own evaluation. If I were the average patient, I never would have known about the extent of my disease or my prognosis. I never would have had information that allowed me to make the treatment decision that I did. I would still be taking my PPIs.
What I hope you take away from my story
The status quo must change
The status quo of PPIs for everyone with minimal diagnostic testing must change so that GERD patients have access to the care they really need. You shouldn’t have to be an expert to benefit from the technology available today to diagnose and treat GERD.
Comprehensive care for GERD should include cancer risk assessment
The treatment I received is not available to most patients. In addition to the cessation of symptoms, care for GERD should routinely address cancer risk assessment and risk reduction. The best evaluation for the GERD patient should include the routine utilization of EGD, pH testing, and biopsies of all patients, whether the endoscopy is normal or not. Biopsies, appropriately executed and interpreted, enable the physician-patient team to assess risk for cancer.
If a patient takes an entire day for an evaluation with the inconveniences of needing someone to drive him or her to and from the endoscopy site and missing an entire day of work, why wouldn’t a concerned endoscopist place a pH capsule to definitively diagnose GERD and take five simple biopsies at the proper sites to assess cancer risk instead of only providing the patient a visual evaluation of the esophagus (which is unrevealing in 80% of patients)? The addition of pH and biopsies add only minutes to the “inadequate” GERD evaluation with EGD only.
Be your own advocate
Obtaining information about my disease in a complete and comprehensive way allowed me to make an educated choice of therapy. This is not available to the usual GERD patient today and that is very unfortunate. However, if you educate yourself about your treatment options you can be your own advocate and push for the care you deserve. No one with reflux disease should be suffering because there are treatments that can help.
When I look back on my experience, I know I made the right choice for me. I am now GERD-symptom free, taking no acid suppressive medications, and know I have done all I can do reduce the probable cancer risk as best assessed from my biopsies. I hope someday you can all say the same thing!