My experience with gastro-esophageal reflux disease

Updated September 17, 2020. Originally May 12, 2019.

I have suffered from gastro-esophageal reflux disease (GERD) for 18 years. It is a chronic and very unpleasant affliction. I knew nothing about this health issue when I first encountered it, but I have learned a lot since then, especially in the last two years. Perhaps this account of my experience will be of some use to others who are in the beginning stages of this illness. I really wish I had educated myself more fully about GERD when I first began suffering from it.

Before my problem became serious

For me, GERD started when I was in my fifties. I had a great career going, but with a lot of stress. I was blessed with good health - no heart problems, no cancer, no bad joints, no mental illness, no significant health issues really - and I had stopped smoking 30 years earlier. But I was not eating healthy meals and was not getting much exercise. Too many fatty foods, sugar and salt, too much beer and wine, too much coffee. 

I consulted my doctor about my reflux and he sent me to the hospital for an endoscopy test and some blood tests. They were negative and I was deemed to be healthy. He prescribed a proton-pump inhibitor (PPI) drug. 

The PPI worked wonders. I began what turned out to be a lifelong dependence on this kind of drug. It was easy - just one pill every day. It solved the problem and I was able to continue with my established, stressful lifestyle.

There were some warning episodes along the way though. I suffered from occasional stomach ulcers. Each time this happened, in three separate cases, I went to my doctor and he prescribed a one-week course of antibiotics to kill the helicobacter pylori that caused the ulcers. This worked amazingly well. The pain in my stomach disappeared within a day or two, every time. There seemed to be no need to change my lifestyle.

When my GERD became serious

Two years ago I saw some alarming items in the news about new evidence to the effect that long-term use of PPIs could eventually cause health problems. Worries were expressed about the possibility that prolonged use of PPIs might lead to bone fractures and greater susceptibility to pneumonia and c-difficile infections. Unfortunately there were not a lot of hard data upon which to base such long-term concerns. Omeprazole, the first PPI, came out in 1988 but more years of clinical evidence and additional scientific studies are needed. 

Evidence-based opinions seem to indicate the drugs are unlikely to be problematic. But a skeptical person, like me, might worry that since there is an enormous and highly profitable investment in these drugs by pharmaceutical companies and the medical profession, these opinions are perhaps a bit biased. Anyway, I was worried since I had been taking the drug unconcernedly for about 16 years.

So I discussed the matter with my doctor and he agreed with my proposal that I try to wean myself off the drug. My plan was to do so gradually. I was taking one PPI pill a day, so I began by skipping one daily dose per week. After three weeks I began skipping two pills a week. After that I began skipping three pills (out of seven) per week. At that point my reflux was returning with a vengeance. So I went back to one pill a day. 

However, that did not bring my stomach back to where it was before I started the weaning process. I thought perhaps I was having another stomach ulcer, so I asked the doctor for another course of antibiotics. In hindsight, perhaps it was not really helicobacter pylori that was the problem, though I will never know for certain. In any case, I began having quite severe reflux, especially at night, every night. This was much worse than I had ever experienced before. I worried that my attempted weaning and the subsequent two-week course of antibiotics had made a bad problem even more damaging.

I will never know if the attempted weaning process and/or the antibiotics were really the cause of this abrupt change in my situation. It might have been some other factor, but if so I have been unable to put my finger on it.

My doctor sent me for ultra-sound and blood tests and they were negative. He suggested I try a PPI called dexilant instead of omeprazole. I did so, but it made no difference. Then he referred me to a gastroenterologist. However, it turned out that specialist was fully booked, so my doctor referred me to another. Same result. So my doctor referred me to a few more. Same result. Many weeks went by as this process played out. I was getting desperate. I was worried that all this acid in my mouth, throat and esophagus every night was causing irreparable harm and I was always tired due to lack of sleep. So my doctor suggested I go a hospital emergency ward. He wrote a letter of introduction and explanation for me to take there.

My trip to the emergency ward

So I entered the ER on a Monday morning at 4 am, hoping that would be an hour with minimal activity. I had heard so many stories about over-crowded ERs. They treated me well, and fairly quickly. I was given a chest X-ray, a CAT scan and some blood tests. The physician told me the results were all negative which was a relief, but it left me no closer to finding a solution to my medical problem. She told me I would be contacted by a hospital gastroenterologist to arrange further tests. I left the ER about six hours after I arrived.

A couple of days later I was told to come back to the hospital for an endoscopy test. I did so and the results were again negative. The doctor told me she would schedule more tests and then meet with me after they were completed. The additional tests were an esophageal manometry test and a 24-hour impedance pH test. 

My treatment immediately after the ER episode

After about three months I met with the hospital gastroenterologist to review the test results. They were all negative, indicating no signs of cancer or significant esophageal burning. That was a relief, but a rather frustrating one because I still had no solution to my health problem. I was not getting any good sleep because the reflux kept waking me up. And I was still worrying about what the burning was doing to my future health prospects. 

Given the test results, the doctor had no useful advice to offer. We discussed the lifestyle issues, but I had already changed my lifestyle rather dramatically almost a year earlier. No more red meats, pizza, pasta, cakes, coffee, citrus fruits, ice cream and several other types of food. I was eating the blandest of diets and I was losing weight. I was exercising every day. I have a wedge in my bed so I can sleep on an incline. Sometimes I try to sleep upright in a LazyBoy chair, but that kind of sleep is uncomfortable in many ways and any sleep I manage to get is fitful. All of this was only helping marginally. If I cheated on diet the reflux was worse, but if I didn’t cheat it was still bad, just not as bad.

On my own I purchased some probiotic pills at the drugstore to see if they might make a difference. They did make a very significant difference and for a while I thought they might be my salvation. But the positive effects only lasted a few weeks and then the bad symptoms returned.

At one point I had a cold. It lasted for a week or so. While the cold symptoms were unpleasant, there was a huge benefit for my reflux problem. My GERD symptoms disappeared! This was because, I believe, my body was generating mucus continuously and much of it went down my esophagus. I got a one-week holiday away from reflux, in which I was able to eat more tasty meals and sleep more soundly. But when the cold was over the reflux returned to ’normal’.

More recently

After several months I called the office of the hospital gastroenterologist to ask for another appointment. She was away on maternity leave so it was scheduled with a different gastroenterologist. 

I wrote out a lengthy summary of my case history and gave it to her. I said I felt desperate and needed help. She gave me a prescription for a heavier dose of PPIs (40 mg es-omeprazole twice a day) and ranitidine 300 mg before bed. 

These drugs did not materially change my symptoms, so the doctor prescribed additional pills called domperidone maleate 10 mg, before bed, and Apo-baclofen 10 mg three times a day. These drugs reduced my symptoms significantly, but their effect was short-lived. After a couple of weeks I was suffering again. 

She then tried substituting omeprazole for es-omeprazole, but that made no difference. She added Pms-amitriptyline 25 mg to my drug regime. She increased my Apo-baclofen dose to 25 mg three times a day. This had a beneficial effect on my symptoms, although there were unpleasant side-effects: dizziness/imbalance, constipation. Unfortunately the positive effects seemed to lapse after about three weeks.

The doctor asked if I would like to have the hospital tests redone (endoscopy, esophageal manometry, 24-hour impedance pH). I asked whether she thought it was worthwhile, since the tests are unpleasant. She said she did not think them necessary, just a year after they were first done, but she would arrange for them to be done if I wished. She also suggested I consult with a surgeon to explore what surgical options there might be. I said ‘yes’ to the surgeon, but ‘no’ to the tests. If the surgeon wants fresh test results, then I will have them done at that time, I thought.

I awaited my consultation with the surgeon. There was a 5-to-6 month waiting period. To get ahead of the game, I researched the surgical options on the Internet. They did not look promising. As far as I have been able to determine, the main option involves reshaping the stomach by bending it around the lower esophagus. This surgery is non-reversible and it is not guaranteed to work well or even at all. It does not look like a good option to me, but what do I know, really. I waited to hear from the surgeon, but I conducted more research in order to be better prepared with some good questions.

My night-time reflux was as bad as ever. I woke up at 1-2 hour intervals through the night, every night. I continued with my bland diet and my exercise regime. I did have another reflux ‘holiday’, when I got a cold, but that is gone now and the symptoms have returned. Someone suggested I try something called slippery elm and I did so, but it had no effect. Strangely enough, WebMD on the Internet says it can also be taken by mouth to cause an abortion!

Eventually I met with the surgeon. He seemed to be a rather grumpy old man. He was probably very experienced, but was lacking in interpersonal skills. He gave me exactly 30 minutes and spent most of the time looking at his computer to read my file and asking me questions about my case. It was clear he had done no preparation and knew nothing about my problem. I tried to ask some of the questions I had prepared, but he did not want to answer them. Rather, he wanted me to answer his questions. When the 30 minutes were over, I had learned nothing to speak of and was quite unimpressed with this doctor. I decided surgery was not a good option for me, at least not yet.

So I continued with my regimen of pills, diet, exercise and sleeping on a wedge. The gastroenterologist decided to take a different approach and prescribed an anti-depressant called amitriptyline. I noticed no effect on my reflux, but after a couple of weeks my feet - especially my left foot - began to swell. I read more about the drug on the Internet and found that this swelling, called edema, is a side-effect. My shoes did not fit properly anymore. So I quit taking the drug and went to see my GP. He prescribed support hose, endorsed my having quit the drug and sent me for an ECG, a chest X-ray and some blood tests. The tests were negative, but the swelling went down, so I concluded the drug was the problem and did not resume taking it.

From there, I went back to the PPIs, baclofen, ranitidine, diet, exercise and sleeping on a wedge. Things kept getting worse. I met again with my GP and he said he thought we should look into testing for sleep apnea and psychological distress. This seemed odd to me as I did not think I had any anxiety problems and did not feel depressed, except insofar as the course of my reflux illness was concerned. We did not have much time to discuss it before the COVID-19 crisis arrived and everything was shut down. 

The months continued to go by with everyone in isolation and my illness kept getting worse. It had caused some insomnia for at least a couple of years. I kept waking up every 2-4 hours due to the burning reflux and often found it hard to get back to sleep. But the intervals kept shrinking. I was getting far too little sleep. I started to feel desperate as my ability to concentrate slipped. I did not want to drive more than short distances as I feared losing concentration. The insomnia was starting to cause panic. There was one period when I got no sleep at all for about 40 hours. I felt I was going crazy.

So I sent a panicky letter to my two doctors. They spoke to one another and got back to me. My gastroenterologist scheduled me for a second impedance pH esophageal test and my GP spoke to me at considerable length on why he thought the sleep and psychological tests might be worthwhile. I had been assuming the reflux was probably caused by a malfunctioning esophageal sphincter, but apparently it can also be caused by nerve problems. If the brain cannot tell the sphincter when to open and close, there can be reflux. This can be related to sleep apnea and/or mental depression. 

Where things now stand

I am still waiting to learn the results of my impedance pH test and to have my sleep and mental tests, but I expect to engage further with my doctors in the next few weeks.























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