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GERD Defined Complex in its many manifestations, GERD in a person with CF (PWCF) is especially precarious. Diagnosis and the road to relief may be long because reflux not only causes heartburn, but symptoms similar to sinusitis, asthma, allergies, gallstones and other ailments as well. When the digestive system works properly, swallowed food passes through the esophagus through a one-way valve called the lower esophageal sphincter (LES), the opening of the stomach. Normally, the LES opens when you swallow and then closes after food has entered the stomach. In the stomach, acids and enzymes break down the food before it moves into the intestines. Reflux occurs when the LES malfunctions and allows partially digested stomach contents and acid to come back up into the esophagus. Not Just Heartburn "On rare occasions the damage can be severe…" A little reflux is normal and usually goes unnoticed. However, if it occurs often or if the acid remains in the esophagus for very long, the mucous membranes of the esophagus become irritated and inflamed. The result is heartburn, or esophagitis (inflammation of the esophagus). On rare occasions the damage can be severe enough to cause bleeding, or a narrowed area of scar tissue, called a stricture, within the esophagus can make breathing very difficult. GERD may cause pulmonary problems in one of 2 ways: Refluxed material may reach the back of the throat and actually be aspirated into the lungs; or, nerves in the esophagus become so irritated from the stomach acid, they send signals to the bronchial tubes in the lungs to get narrower, causing breathing problems similar to asthma. GERD and CF Studies show that by the age of six, 50 % of CF patients have GERD. That's not surprising because the antidotes used to treat CF may, in fact, aggravate reflux. For example, many of us have been on theophylline, a bronchodilator, which can relax the LES. Studies also show that postural drainage techniques - especially positions requiring us to lie upside down - exacerbate GERD. Furthermore, the mechanical influence of a depressed diaphragm caused by hyperinflation (which is common in CF), along with the increased abdominal pressure with chronic coughing, may contribute to GERD. "…no wonder our internal anatomy shifts in response." A cough can generate 100 cm/H2O of pressure in the chest, raising intra-abdominal pressure. This puts quite a strain on the stomach and esophagus. It's no wonder our internal anatomy shifts in response. My Personal Experience At its worst, GERD has meant more than a year of sleepless nights, an incessant hacking cough, a sore throat and bouts of laryngitis. It also meant many a wasted meal. Inevitably, my husband would take me to my favorite restaurant, I would enjoy my favorite dish, and before it was time for dessert a coughing spasm would overcome me. By the time we got home I would be vomiting. In an hour I'd be hungry again. "…the sore throats were attributed to the cough…" I slept - or at least tried to - sitting up on the couch in my living room, hacking away. In the morning I would be exhausted, my chest tight and sore, my voice hoarse, my throat on fire. At first it seemed to be out-of-control asthma, and the sore throats were attributed to the cough, a recurring virus, and/or postnasal drip. My allergist suggested I was only aggravating the situation by sleeping on the couch: Where better for dust mites to thrive than on an old couch? "…difficult to communicate, especially on the phone." Professionally it was disruptive: First, the exhaustion caused from not sleeping obviously made it very difficult to get up in the morning. I felt unproductive and had a hard time concentrating. Second, the recurring bouts of laryngitis and severe sore throats posed a challenge: While having a distinctive voice didn't hurt me as a public relations practitioner, laryngitis made it difficult to communicate, especially on the phone. Fortunately, my employer was flexible and let me set my hours - I could work late, early, on weekends, whenever. Unfortunately, my unpredictable hours made supervising people impossible. I now work as an independent contractor from home. No Relief Antibiotics didn't seem to improve the situation because although my throat was raw and red, there were no white patches. My cough was powerful but unproductive. While it was reassuring that it wasn't pneumonia or worse, it was frustrating. I was on high doses of Prednisone in an effort to ease the wheezing. Although it seemed to work at first for a day or two, in time the burning in my stomach would just get worse and the coughing would return. It felt as if my body was rebelling against everything meant to make it well. In time, it became instinctively clear that the acid churning away inside must have been wreaking havoc on all my systems. The more medicine I took, the more my stomach churned and more irritated my throat and esophagus felt. Fortunately, my team of CF doctors and allergist were becoming more aware of asthma-induced reflux. Finally we decided to see how bad my reflux really was, and whether or not taming it might bring some relief. Temporary Relief Although an upper GI revealed reflux and a hiatal hernia in the early 90's, my other symptoms were never attributed specifically to GERD until 1998. In fact, I had been taking Zantac, Pepcid, etc for years. I was going through a bottle of Mylanta every few days. Today there are a plethora of new remedies designed to treat GERD symptoms. The following categories represent typical medicines that might be recommended for you: · Antacids - help to neutralize acid quickly, but offer no long-term
benefits. To control acid one would take antacids at least 7 times a day.
Be sure to ask your pharmacist if and when it can be combined with other
medications. While these remedies help reduce heartburn, they don't do much to help pulmonary symptoms. Tests If after a few months your heartburn is better, other culprits such as sinusitis and allergies have been addressed, and you still have pulmonary symptoms, your medical team may recommend diagnostic tests to determine the severity your reflux and whether or not it could be a contributing factor to your symptoms. To help determine what course of action will provide the best results, one or more of the following tests may be performed: · Barium upper GI - While drinking thick, chalk-like barium, an
x-ray monitors the barium dye as it travels to your stomach, capturing
any reflux action on film. The x-ray will also reveal whether you have
a hiatal hernia. The test does not hurt. (One technician actually used
chocolate syrup to make the barium more palatable!) "This is the gold standard for demonstrating the act of reflux." · 24 hour pH monitoring - A thin, acid-measuring probe is placed
through your nose down into your esophagus for up to 24 hours to record
how much acid washes back from your stomach into your esophagus. You will
be sent home with the tube and a small monitor, which can be attached
to your hip. This is the gold standard for demonstrating the act of reflux.
It is especially helpful if there is any doubt that reflux is present,
or when your main complaint isn't heartburn but unexplained coughing,
sore throat, etc. I'd already had several upper GIs so we knew I had a hiatal hernia and reflux. An ultrasound ruled out gallstones (at that time - they came a year later!) I then went for the esophageal manometry and the 24-hour pH-monitoring test. Surgery Tests revealed that surgery was a viable option for me. To stop reflux, surgery involves wrapping the upper part (fundus) of the stomach around the bottom of the esophagus to strengthen the LES, essentially creating a new valve in the stomach that prevents acid reflux into the esophagus. Years ago, the traditional way of performing this surgery was through an 'open' incision. Thankfully technological advances have made a laparoscopic version - called a Nissen fundoplicaton - possible. Studies show that the laparoscopic fundoplication is as effective as the open surgery, which is great news for CF patients. Minimally invasive, it means that instead of one long incision, patients have four or five smaller incisions (ranging in size from 5 mm to 1 cm) through which a laparoscopic camera and surgical instruments are inserted. These smaller holes heal easier, cause less pain and mean you can get back to your regular activities much faster. Immediately after surgery you will be very sore, as if you have been
doing hundreds of sit-ups or were struck about the abdomen. You may be
surprised that your shoulders hurt more than your stomach! This is from
the carbon dioxide gas used to inflate your stomach to create more space
for the surgeon to work and see. It can settle in your shoulders and cause
discomfort. The best thing to relieve it is to get up and move around.
I was in the hospital 2 nights and out of work for 2 weeks. Sweet rewards There is a special diet your doctor will prescribe to gradually introduce solid foods back into your diet. It takes some time, and varies patient to patient. Since nutrition is so critical to CF patients, this is obviously a critical component to recovery. Your esophagus will be a little swollen for some time so it's important to go easy - it took me quite a while to be able to swallow bread and meat, never mind sandwiches. You may feel fuller faster, so make sure you eat more often to get your calories. Due to chronic coughing, CF patients are at slightly greater risk of undoing the wrap sooner than healthier folks. When the doctor tells you not to lift heavy objects or do too much, listen! Three Years Later Last May I had my gall bladder removed. At that time my surgeon advised me that my wrap had loosened a little and my hiatal hernia had slipped some. It looks like I'll need surgery again someday. Will I do it? Probably. Since my surgery, stronger materials have been developed which reinforce the wrap even better. New non-surgical endoscopic techniques are also being developed to tighten the LES. I can't wait!
· Don't smoke or drink alcoholic beverages. They increase stomach
acid production and cause irritation. Alcohol weakens LES. Dawn McGuinness dawnstevens@prodigy.net Editor's Note: Our thanks to Dawn for sharing her experiences and giving us an introduction to Gastroesophageal Reflux Disease. This article was written in collaboration with, and proofread by her CF specialist team. For a list of resources used for this article and recommended reading,
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