Gastroparesis: Regina's Story

We need to continuously pressure the powers that be to conduct more research to help find a cure for this devastating illness. So many of us have suffered, been told we are crazy, and been told we are addicts because of our need for pain medicine. We are labeled drug seekers at our hospitals and are denied proper treatment as a result. I fear that if something is not done to raise awareness about gastroparesis, the number of people who perish as a result of this horrible disease will only continue to grow.

Hi, I am Regina. I am 50 years old. My story begins January 28, 2008, with a middle of the night trip to the emergency room for uncontrollable abdominal pain and vomiting. Let me first say that prior to this date, I was a pretty healthy woman, working two jobs and traveling a lot for work. On this dreadful night in 2008, I was so sick I had to go to the ER. I had no idea what was going on, but they ran some tests and said my gallbladder was filled with stones and sludge and therefore had to be removed. I arrived at the ER at 4:30 a.m. and was in surgery by 9:00 a.m. I awoke in recovery in severe pain and figured this was normal post-surgery pain. But the pain continued, even after receiving pain medications.

By day two, I was vomiting again and could not stop. I could not eat or drink. By day five, they had me somewhat under control and discharged me with paperwork describing a diet to follow after gallbladder removal. The next few months consisted of weekly trips to the ER for pain and vomiting, as well as several more hospitalizations and tests in an effort to figure out why I was still in this condition. By May, I was unable to work consistently and decided to go on short-term disability until they could find a way to cure this problem.

Then a gastroenterologist at the local hospital suggested that perhaps I see another gastroenterologist at UPENN or Temple University, as he thought that perhaps I could have gastroparesis as a result of the surgery. I did my research (as I worked in the healthcare field as a Fraud Investigator for a major insurance company), and determined that the best place to go would be Temple, as they had a section of the GI department which was dedicated to gastroparesis. I made an appointment to see the head gastroenterologist there, Dr. Parkman, but before I could get to that appointment, I was hospitalized again locally. Eventually, I was transferred to Temple. They kept me in Temple for almost a month, running every test I had never heard of, and by the end of that hospitalization, they told me I had severe gastroparesis. My Gastric Emptying Study showed 96% retention after four hours. In August of that year, I had surgery for a Gastric Stimulator.

The stimulator helped me only a little. I continued to have repeated hospitalizations over the next few years, and my condition only worsened. By Feb 2011, I had gone from a physically active, 165 pound, athletic woman to a 90 pound version of who I used to be. During one hospitalization, they refused to discharge me until I agreed to let them insert a g-tube and a j-tube so that they could put me on tube feedings and keep me from becoming malnourished and losing more weight. I now weigh about 120 pounds, but I continue to suffer from near constant abdominal pain and intractable vomiting. I am still hospitalized multiple times a year and have had several different types of procedures and surgeries, including Botox injections.

To this day, I am nowhere close to the normal woman I used to be. She is long gone. I am now a weak, somewhat feeble woman who often needs to use a wheelchair to get around, as I sometimes do not even have the strength to walk around my apartment. They say that there are no more answers for me at this point in time and I just need to accept my condition. I am fifty years old, and I am limited as to what I can do. I am restricted to a full liquid diet, and every time I eat, I end up in the ER within hours or days. I cannot be around sick people at all, or I will get sicker than sick, and inevitably, I end up with an infection ten times worse than what I was exposed to. I have had multiple instances of MRSA and other staph infections that have put me in the hospital, and even nursing homes, for months at a time.

Despite the difficulties associated with my gastroparesis, there are several things I have learned about myself and about my life since my diagnosis. I was always a very career oriented person and my job was my life. I loved the travel that came with the job, and after being diagnosed, I did not know how to define myself as a disabled, non-working person. But what I learned over time is that my job did not define me and neither does my illness. I may not be able to help others in the same manner I did while working, but by being a part of the support groups I am in, I am now able to help others in a different way. I believe that my God uses me to help others through my life experience. I can help people who are newly diagnosed by assuring them that gastroparesis is not a death sentence; rather, it is another obstacle that I can overcome and that teaches me I am stronger than what life throws at me. I have made several wonderful friendships with men and women from all over the globe. And though I have never met these people, we help each other tremendously on a daily basis. We band together to try to create awareness and change for the way the medical world handles our illness. There is still so much to learn about gastroparesis, and if I can be even one single voice that is heard in the world of this devastating illness, then I can turn the negative into a positive and perhaps help others who are diagnosed in the future.

BlogRegina PoulilloApril 1, 2015Gastroparesis, Batch1