My Story

I hope that by sharing my story it will help others who suffer from this disease. I am a 41 year old mother of two who was first diagnosed with gastroparesis ten years ago. I suffered with continuous bouts of nausea and vomiting, horrific abdominal pain, bloating and esophageal reflux. Eating became such a painful ordeal that I began to avoid eating all together and my weight quickly plummeted.

Doctors began to put me through many tests, prescribed many different medications and I subsequently had many unsuccessful surgeries. Within one year of diagnosis I was unable to eat or drink anything and my weight had dropped to 80 pounds. I had to be put on a feeding tube and when I did eat, the only food my body could tolerate was baby food.

I became very depressed and began to shut out family and friends. But one morning I woke up and decided that I was going to fight this and have been ever since. My husband of 22 years has stood by my side throughout this and I would have given up long ago if not for him.

I began by doing research on gastroparesis but was surprised at the lack of information available on this disease that had taken control of my life. I finally found a doctor in Little Rock, Arkansas who specialized in gastroparesis. When I contacted him I found that he had a year-long waiting list. However, because I became so sick, had no other options amd my health rapidly deteriorated, I was moved to the top of the list. During this time my stomach had become completely paralyzed and I could no longer tolerate any solid food.

I learned about an implant that was used to help treat this disease. It would allow the stomach of a gastroparesis patient to contract allowing the person to eat while controlling the nausea, vomiting and severe stomach pain. Because this was an expiremental procedure, however, funding was very hard to get and it took almost a year for my insurance to approve it. The procedure was finally performed in 2000 and within a matter of weeks I began to regain my strength. I was able to begin to eat some solid foods and within three months had the feeding tube removed. I still battle with this disorder every day of my life. Because I also suffer from neurofibromatosis (NF), a tumor disorder, this worsens my gastroparesis symptoms.

To help those of us who struggle with this disease daily, further research is needed. In 2005, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) established the first Gastropareses Clinical Research Consortium (GpCRC). Through this center, people affected by this disease can find the newest information including new treatments and clinical trials.

The National Institute of Diabetes and Digestive and Kidney Diseases has funding through 2011. It is my goal to continue to work so that funding can continue for this program. This is so important as the GpCRC provides research which is the future lifeline for gastroparesis patients such as myself. Help is needed to spread the message.

Don’t let this disease or any other become you and cause you to have thoughts of guilt, frustration or anger. Always believe and have faith that a cure will be found. Theses struggles we face can only make us stronger, but believing is everything.

I hope my story will touch other people so they can reach the unreachable, because there is no mountain that cannot be climbed. God gave me my life back and now I want to help others.

 

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