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My Life With Gastroparesis
Dietary changes can prevent this bothersome condition

If you have had diabetes for many years and experience unexplained bouts of severe vomiting and diarrhea from time to time, you may have a moderate form of diabetic gastroparesis. I suffered from these puzzling and completely debilitating episodes for more than six years before I was diagnosed with diabetic gastroparesis. The advice I finally received from a digestive system specialist at Johns Hopkins University Hospital in Baltimore was a true godsend for me and my family. I have been free from symptoms for over five years now. If you, a loved one, or a patient of yours suffers similar symptoms, I hope the advice I pass along here will help. It has changed my life significantly.

A man with an upset stomach.My First Episode
I first began experiencing bouts of severe vomiting and diarrhea in 1994 around two decades after my diagnosis of type 1 diabetes. During my first episode, I thought I had stomach flu, although the symptoms began quite suddenly, and I did not have the tell-tale fever and body aches. It began with a full feeling in my stomach and the onset of frequent burps, the worst-tasting and -smelling burps I had ever experienced. Over several hours the burps went unabated and became more frequent. Nausea grew and vomiting commenced—the worst vomiting of my life. I was hesitant to leave the bathroom because even after vomiting, the nausea never left. I was vomiting several times an hour. Then my intestines began to rumble in a most extraordinary fashion, followed by, you guessed it, the worst diarrhea I had ever experienced. The combination of vomiting and severe diarrhea, often occurring simultaneously, went on for six or eight hours or more before I started to feel some relief.

My First Hospitalization
During this first episode, I was admitted to the hospital through the emergency room due to dehydration. The doctors put me on intravenous fluids and began searching for the bacteria or virus that was causing my sudden and dramatic symptoms. I had a working kidney transplant, so the doctors left no stone unturned in their search. They ordered a dose of intravenous antibiotics and had every possible body fluid cultured. In the end, they found nothing. Once the symptoms started to slow down and I was re-hydrated, I actually felt fine again pretty quickly, though very tired and sore from all the retching.

The Pattern Begins
I discounted the first episode as “just one of those things,” but when I had another one about six months later, I began to wonder what was at the root of this problem. Over the next five or six years, I got sick like that two or three times per year. If more than six months passed without an episode, hope would kindle in our hearts that “it” was gone, whatever “it” was. “It” always came back. Sometimes the episodes were so severe that I would get dehydrated to the point of passing out from dehydration while vomiting. I recall one episode while visiting friends in New Jersey for a birthday party. Near the end of the party the burps began, and six hours later, after taking over the guest bathroom at my friends’ home, my wife found me passed out on the floor near the toilet. They called an ambulance, but in the end, once again, the New Jersey doctors had no more clue than the doctors at home.

The Impact on my Life
I cannot describe how stressful life was during these years. Every time I burped I would feel anxious. Was “it” starting again? I dreaded sensing the awful taste and smell of a burp which inevitably meant I was about to go through another 12 hours of the worst vomiting and diarrhea one can imagine. My fiancé suffered the same stress each time she heard me burp. Traveling was especially stressful. If I burped when about to board a cross-country flight, my stress level soared. The other aspect was the unpredictable nature of each episode. One minute I was having a great time and the next minute I was preparing for a possible visit to the hospital from dehydration. One episode even interrupted our honeymoon. Avoiding a trip to the hospital was the only consolation I could take away from that one. I was helpless to do anything once “it” started, and having no clue how to prevent “it” left me horribly frustrated.

The Search for a Diagnosis
My primary care doctor referred me to a gastroenterologist who ordered a gastric emptying study since he suspected diabetic gastroparesis. However, all three gastric emptying studies I underwent over five years showed my stomach moved the food along just fine. In a gastric emptying study, one fasts for half a day to make sure the stomach is completely empty, then eats a cup of food laced with a small amount of radioactive material. The doctors then take pictures of the food as it passes through the digestive symptom over the next two or three hours. One doctor, in light of a normal gastric emptying study suggested I had a nervous stomach. We noticed episodes often occurred around holidays, and we started to track what I ate to see if the symptoms were an allergic reaction to holiday food. After each episode we tried to think of what I had recently eaten, but no specific food emerged as the trigger. The list of suspected foods, everything from salad, eggs, wine and champagne, to salmon and fruit, was long, but in the end, none was what I sought: the trigger food to avoid, so that “it” would go away.

The Specialist Saves the Day
After my third gastroenterologist received another normal gastric emptying study result, he referred me to a specialist in digestive disorders at Johns Hopkins University Hospital. After hearing my history the specialist explained that more moderate forms of gastroparesis can be very difficult to diagnose. In what he referred to as episodic diabetic gastroparesis, the stomach digests foods normally in most circumstances. But combinations of stress or excitement with larger amounts of hard-to-digest foods can make a diabetic stomach “grind to a halt.” His explanation made sense. My stomach would empty normally during a gastric emptying study because I had to fast prior to the test and only consume a small portion of food during the test. During holidays I not only ate much more, but I ate lots of high fat foods and had the stress or excitement of the holidays as well. And, of course, our honeymoon was filled with excitement and all varieties of food. I did not receive a strict diet to follow. Rather, the doctor educated me on the types of foods which could be problematic and told me to be aware of how often and in which quantities I ate them. I received this advice and started following it around 7 years ago. I had just one single incident since then, in 2003, but nothing since. In my last episode in 2003, I was on an exciting vacation in Lake Tahoe, California and had a high-fat Mexican food meal and a large fried chicken dinner (with the skin) the night before. I learned my lesson!

Tom LeyAbout the Author
Thomas Ley has had type 1 diabetes since he was seven and has been blind since he was 17. He is a manager and senior software support analyst for UPS and has a strong background in the field of accessible technology for the blind. He is the technology writer for Voice of the Diabetic.