Our greatest frustration is hearing from our members that have been told that they must be on proton pump inhibitor OTC, or Rx, for life, and then learning years later that their disease has progressed to Barrett’s esophagus or adenocarcinoma. Unfortunately, as you will see from the two member questions below, based upon medicine’s “status quo” mentality, we will be hearing more of these stories for many years to come. Our only defense is promoting awareness and providing high quality educations to you, our members and website visitors that suffers from this disease.
Q#1: I have had Barrett’s for 4 years (short-segment, non-dysplasia), but am told I have to be on proton pump inhibitor OTC forever. Is there any way to get off these under these circumstances?
Q#2: I am having a disagreement with my doctor. I have Barrett’s esophagus, severe esophagitis, gastritis, and duodenitis. My doc insists that I remain on proton pump inhibitor OTC even though they did not prevent the development of the BE. I have been on PPIs for over 20 years, have osteoporosis, and have already broken five bones. I want to have a Nissen fundoplication, but he is hesitant stating it has a high failure rate. My research doesn’t support this opinion. I am currently only taking Pepcid. Confused.
I thank both of these RefluxMD members for taking the time to share their concerns and questions with us. If anyone thinks these two individuals are exceptions, I encourage you to read the stories from several of our members where they were told to take PPIs for life, only to be surprised with a difficult diagnosis. I am especially moved by the story of a 68 year-old RefluxMD member diagnosed with stage 3-adenocarcinoma after taking proton pump inhibitor OTC for 15 years. Dr. Chandrasoma, in a very emotional and honest letter, provides a response that I hope you will take a moment to read: Are we being honest with GERD patients? I think this comment near the end of the story highlights our concern, as well as our mission to reach those suffering from this disease:
What is much more troubling is that the entire medical establishment that he encountered during this 15-year course of his disease (assuming his first interaction was when he was 53 years old) fed him information that was inaccurate. What is also troubling is that if he had access to accurate information, he may have taken the initiative, given his obvious intelligence, to direct his care in a manner that could have prevented this outcome.
There are several other member stories that may stimulate you to take the initiative and responsibility to manage your disease:
Howard’s Story – Howard suggests two things for PPI users: 1) get a second opinion and, 2) learn about your surgical options even if you are symptom free today.
Ron’s Story – Ron decided not to wait and see if proton pump inhibitor OTC would protect him from Barrett’s and esophageal cancer.
Kathy’s Story – After being diagnosed with Barrett’s, she embraced natural alternatives and monitoring to manage her symptoms and disease.
Today’s status quo treatment and RefluxMD’s concerns
With a GERD diagnosis, the majority of primary care physicians and gastroenterologists recommend Rx PPI medication, or proton pump inhibitor OTC, for several weeks to determine their impact on GERD symptoms. With partial improvement or complete elimination of symptoms, the recommendation becomes PPIs for life. Unfortunately, these patients are seldom told:
- PPIs only mask symptoms; they do not stop regurgitation and thus, GERD can progress to Barrett’s esophagus and/or esophageal cancer.
- PPIs have several potential serious side affects that include higher rates of bone fractures, under-absorption of magnesium, higher rates of pneumonia, and a higher risk of C-difficile infections.
These claims are supported not only by the many member stories we hear monthly, but by a poll of over 300 Reflux members that found only 5% were informed of these important facts by their doctor.
Finally, Dr. Tom DeMeester highlighted the issue in his Huffington Post article, Acid Reflux Problem? The Warning On the Pill’s label Says Use for 14 Days. According to Dr. DeMeester, considered one of the top global experts on this disease, PPI use appears to be a risk factor: “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.”
So what can be done?
Let’s return to our members’ questions. First, as Dr. DeMeester highlighted at the end of his article, the best remedy is healthy choices, which include diet, exercise, smoking cessation (where necessary), limits on alcohol consumed, weight management to a BMI of 25 or less, periodic use of the least powerful antireflux medications (ideally antacids and H2 blockers), several lifestyle changes, and working with a GERD specialist that will provide you with all of your treatment options, including surgery if appropriate.
Question #1: Is there any way to get off PPIs under these circumstances?
In addition to the recommendations noted above, there are options for anyone with Barrett’s esophagus. However, before any medication, lifestyle, or treatment change is initiated, you should always discuss these changes a medical specialist. First, if you have any concerns about your treatment or the options presented, always get a second opinion from a GERD expert. The experts listed on our website (or available by using our DocMatch online tool) are capable of a complete diagnosis and are committed to offering every treatment option. The treatment options you should consider are radiofrequency ablation and/or surgery to remove the damaged portion of your esophagus and restore your lower esophageal sphincter using one of several procedures, including Nissen fundoplication.
Question #2: I want to have a Nissen fundoplication, but he (GI) is hesitant stating it has a high failure rate. Is that correct?
Surgery for GERD should always be considered if GERD symptoms are not managed to your satisfaction. In light of your osteoporosis, PPI therapy may not be the best treatment plan for you and I hope that Pepcid is effective in managing your symptoms. I would work closely with a GERD specialist to determine the best available medications for you over time. The same treatment options for Barrett’s noted in question #1 above are available to you, however I understand your concern with surgery based upon your current GI’s comments.
In a study following 198 patients treated with laparoscopic Nissen Fundoplications (Annals of Surgery, Hinder, Filipi, Nearly, DeMeester, Perdikis) , researchers found that 97% of those having this procedure were satisfied with this surgical procedure. According to our Medical Director and highlighted in our article, Overview of Antireflux Surgical Procedures, a Nissen fundoplication is the “gold standard” today. Reflux is controlled 80% – 85% of the time and 90% of patients are satisfied with this surgery after 5 years. However, there are several other surgical procedures discussed in the article that should be given consideration as well. Again, the best procedure for you can only be determined by working closely with a GERD expert.
I hope this helps
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