One of the real pleasures we have here at RefluxMD is the opportunity to engage one-on-one with our members and to listen to their stories to learn how they manage (or struggle with) GERD. This week I had the privilege of speaking with one of our members and his story was very typical of what we continue to hear in emails, posted comments and discussion – their physicians are not providing honest and accurate information. Dr. Chandrasoma provided a very passionate and moving response to one of our members in his article, “Are we being honest with GERD patients?” Based on what we have heard from RefluxMD members, the answer, unfortunately, is “NO”. We have noticed that there are four consistent things most doctors will not tell their GERD patients, and for our members, we believe “forewarned is forearmed”.
David is 57 and has spent his entire life on the East Coast, living near some of the best-known medical centers in the US. That is why we were so surprised at what he was told over his 25-year struggle to manage his reflux disease. If this is the type of information that David can get from some of the very best physicians, all of us must be proactive and challenge what we are told. Here are the four things your doctor will not tell you about reflux disease and its treatment.
#1: PPIs do not stop your disease progression
This may be the most egregious omission. Why? Because most patients trust their doctor and when told to follow a treatment plan or use a prescribed medication, they assume it will make them better. But that is not true for PPIs. All PPIs will do is mask your symptoms. They do not stop reflux and they do not stop your disease from progressing.
In fact, here is what Dr. Tom DeMeester penned in his article, “The warning on the pill label says ‘use for 14 days”:
For many sufferers, PPIs certainly have been a blessing — but at what cost? According to a study by Dr. Blair Jobe at the University of Pittsburg, PPI-treated GERD patients, who have mild or absent symptoms while on the medication, were 60 percent more likely to have Barrett’s esophagus, a precancerous condition, than those with more severe symptoms while on the medication. Disappointedly, a good response to the medication does not eliminate the risk of cancer. In another ongoing long-term study conducted in Europe, researchers determined that today’s treatment model, which is predominantly focused on drug therapy, does not stop the progression of the disease. More importantly, of all the risk factors studied, which included diet, obesity, smoking, alcohol use and family history, the one factor with the highest odds ratio associated with progression from mild to severe disease and leading to Barrett’s Esophagus was daily PPI use.
For David, this proved to be true. “I could drink alcohol, eat spicy foods or anything else as long as I had my prescription PPI. It was pretty well controlled.” Unfortunately, years later, David was diagnosed with Barrett’s esophagus, a reflux-induced precancerous condition of the esophagus.
#2: Daily long-term use of PPIs can lead to several serious problems
Unless informed by their physician, most patients believe that the medications recommended by their physician will do no harm. Unfortunately, that is not the case with PPIs, and most physicians never mention those potential dangers to daily long-term PPI users. Here are Dr. DeMeester’s comments in his article.
For those with frequent symptoms, however, doctors often prescribe Proton Pump Inhibitors (PPIs), a drug class that includes Nexium, Prilosec and Prevacid, to name a few popular brands. Though the warnings on the over-the-counter label and in all promotional ads state these pills should be used for a maximum of 14 days during any year, many patients continue on their prescribed medication for months or years without understanding or learning the risks.
These PPI pills reduce or eliminate the symptoms of GERD by blocking the stomach’s production of acid, which when reflux into the esophagus causes heartburn. While these pills provide for short-term and temporary relief, blocking the body’s production of acid on a daily basis has its downside. The FDA warns that the long-term use of PPIs is associated with decreased calcium absorption, leading to bone fractures, decreased absorption of magnesium leading to hypomagnesaemia and heart arrhythmias, increased incidence of pneumonia, and increased incidence of Clostridium difficile infections.
Unknown to David, his long-term use of PPIs daily was blocking essential calcium to his body and bones. At the age of 45, David was diagnosed with osteoporosis, a deterioration of the bone tissue. After many tests to determine the cause of his disease, David and his physician were convinced it was a direct result of PPI use: “Nobody had an answer as to why. I am a healthy male, young, and I work out frequently, and they could not understand why I was this way. The only thing anyone could point to after all these studies was my use of PPIs.” What is even more amazing to RefluxMD is the response David got from his gastroenterologist after his diagnosis. Despite the warning on the label, David’s GI responded to his diagnosis with: “That’s nonsense – we really don’t believe that (PPIs can cause osteoporosis) is true.”
#3: You need to see an expert GERD specialist if you have reflux disease.
Much of the misinformation we hear about comes from family practice physicians and internists. Their challenge to be an “expert” on all the conditions they treat is formidable. Given their busy schedule, their ongoing education is provided to them by the many pharmaceutical representatives that visit their office. The limited time they have with their patients does not allow them to perform the necessary diagnostic tests to confirm GERD. Most prefer “symptom diagnosis” via discussion with their patients and they use the “PPI test”, widely discredited as a diagnostic tool, to validate the presence of reflux disease. Perhaps that is why 32% of all PPI users tested do not reflux disease today.
When we asked David to tell us what he would like to tell others with reflux disease, his first recommendation was to find a GERD expert early. “You need to find a top GERD expert. For me, it was at a teaching institution after I relocated two years ago. You should get scoped (endoscopic examination) early to find out what is going on.” At RefluxMD we believe that this is essential. GERD is a long-term chronic disease and it can dramatically impact your quality of life. Since it is YOUR life and GERD can seriously impact the quality of YOUR life, you should get the “best” expert GERD physician as early as possible.
#4: You should consider surgical options to stop your disease progression
Antireflux surgery should be considered if other treatment alternatives to not reduce your GERD symptoms to your satisfaction. These “first line” alternatives include managing your BMI to 24 or less, adopting a GERD-friendly diet, making lifestyle changes, trying home remedies, and using less powerful medications such as antacids, and H2 blockers. In most cases, physicians seldom inform their GERD patients about surgical options, and in many cases, they will advise against surgery. RefluxMD created standards with our medical advisors for all our participating GERD experts. We think that GERD sufferers deserve a “Bill of Rights” and one key principle is that reflux disease sufferers deserve an assessment of their disease and all relevant treatment recommendations. If a physician does not provide information on surgical alternatives, we can only assume that he does not agree with this basic of all patient-doctor principles. If you find your self in this situation, we suggest that you seek a GERD expert by using our DocMatch online tools.
Learn more: What is the best treatment for acid reflux?
In David’s case, it took him 20 years and a relocation to another state before he was provided all the information he needed to make a fully informed decision on this treatment plan options. According to David, “Surgery was never presented to me at (first teaching hospital). It was my GI at (second teaching institution) that asked me; ‘Why don’t you consider surgery?’ I’m the type of guy that if I have a problem that is fixable, then fix it. Then we move on.” Unfortunately, since his first GI would not provide him with adequate information on his treatment options, David was unable to fix his problem and lived with it for over 20 years.
Is it time for you to find relief and good health?
Here is the good news: when you finally get ALL the information you can make the BEST decision for you to find relief and good health. For David, it was was a Nissen Fundoplication surgical procedure. After 20 years of suffering, he finally found what he needed: “If you look online and read the blogs and discussion boards about surgery, all you hear about are horror stories. When I emailed my former GI he replied, ‘It all depends on the surgeon.’ I found a great surgeon and I had great confidence in him. Even though it has only been six weeks since my surgery, I feel really great.” When RefluxMD asked him if he was happy that he elected to have the surgery, without hesitation David said, “100 percent!”
Wouldn’t you like to say that you are 100% happy with the treatment of your GERD? If your answer is “YES,” then focus on these four things: take charge of your condition, get all the facts, chose the treatment plan that is best for you, and make it happen. Like David, you deserve to be 100% happy, too.