Patient Comments: Gastroparesis - Describe Your Experience

Please describe your experience with gastroparesis.

Comment from: Heidi, 25-34 Female (Patient) Published: March 06

I was diagnosed with gastroparesis about three months ago. I had a stomach flu, which would not go away along with severe abdominal pain. During the first hospitalization, I had my gallbladder taken out. After that, things just got worse. I was back in the hospital with unbearable pain, and vomiting any time I ate or drank anything. I had only been home two days since my gallbladder was removed. The admitting doctor decided that I was drug seeking and was causing myself to be sick for attention. He told me and my parents that my only problems were mental illness (making myself sick for attention), obesity, and wanting to take painkillers. He discharged me after two days -- and a psychiatric consultation! About a week after that, I started vomiting and could not stop. Although no blockage was found, and I hadn't been able to have a bowel movement in two weeks (since the surgery), I was vomiting what seemed to be bowel contents. At the time, I hadn't eaten in days. I had the same jerk doctor, but a sympathetic surgeon who agreed to do more testing. It took about another week in the hospital before they finally decided to do a gastric-emptying study, which led to my diagnosis. They gave me Reglan, which doesn't work. I take painkillers because of the constant stomach pain, and they at least help me not have diarrhea every day. I'm supposed to eat six small meals a day, but have never really been that good at eating. I always get full quickly -- after just a few bites of food. I am obese, but have lost 40 pounds since being diagnosed. I am constantly nauseated and vomit nearly every day, and I'm only getting worse. I even lost my job because of being hospitalized so frequently for this stupid disease. It's so frustrating to have something with no cure. I'm only 28 years old, and it terrifies me to think I will have a lifetime of this. I cannot hold down a job and at times I can barely take care of myself when once I was very independent. People don't see me as being sick either because gastroparesis isn't a deadly disease. But it affects my life so heavily. I really feel for anyone else suffering from this because I know how hard it is. Sometimes I wonder if I'll ever be able to live a normal life again.

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Comment from: misty12345, 45-54 Female (Patient) Published: March 06

Eventually, I found out about the clinic trials of the gastric pacemaker or stimulator; they have a few of these studies around the country. (I believe there are five?) I called immediately, and within a short period of time, I underwent tests on the severity of the gastroparesis and if I would be a candidate for the pacemaker itself. Needless to say I have the gastric pacemaker embedded in me now. Yesterday, I was informed, since I've been throwing up the food/liquids, that the voltage of the stimulator was at its full potential, and the only other method available is gastrectomy — the removal of the stomach. They would leave 1% of my stomach intact connecting it to the lower bowels. Before they would perform the operation, I would have to undergo a test whereby they would place a feeding tube (don't know its dimension) down my nose and into the lower bowel while I would be hospitalized for three to four days. If tolerated, they would remove the pacemaker and perform the gastrectomy. I want to make a well-informed decision before rushing into the gastrectomy.

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Comment from: Lou, 19-24 Female (Patient) Published: February 17

I got real sick five years ago, when I was 17. We don't know what happened to make me sick. My doctor says it's probably just "bad wiring.” My gastroparesis tends to go through good and bad phases, usually each lasting a few months for a time. I find that with the unrelenting sickness/pain, I get really apathetic, or something like that. I sort of quit feeling much in the way of emotions, and that can be pretty rough. But, I've definitely learned to live with being sick! Also, I've been on domperidone for a couple of years, and that is an absolute life-saver. I encourage anyone with gastroparesis to try it, and to stick it out for the first couple weeks. It can cause pretty serious pain at first, but that passes completely, and it is so worth it. I am hopeful that, someday, the gastric pacemaker will be more widely available, and that this will help ease a lot of gastroparesis-people's pain.

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Comment from: 45-54 Male (Patient) Published: January 05

I was diagnosed with gastroparesis (GP) last year. I have been sick for about six years or more. It started with vomiting and severe weight loss in 2001. The doctors could not diagnose me, so they removed my gall bladder. I had constant vomiting and diarrhea. After the gallbladder surgery, I continued to get worse over the years. After last year's diagnosis, I tried every medication (with no result), and then they Botoxed my duodenum. That seemed to work the first time. It failed after about three months, and last Christmas, they did it again. Again, it did not work. I finally received a gastric pacemaker. This gave me good results, but I was still sick sometimes. Unfortunately, I received an electrical shock this September and destroyed the unit. They have replaced it, and I am having a much worse time this time.

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Comment from: HKatie, 25-34 Female (Patient) Published: January 05

Don't be afraid of the side effects of domperidone; it is a wonder drug! I have been through hell and back with gastroparesis (GP). It started with nausea and vomiting, all day, every day. Then they took out my gallbladder. I got better for about two weeks. Then I had an ERCP. I had stones and sludge in my bile duct. After I had that cleared up, I got better for about a month. Then my GI doctor told me he could do nothing more for me; he basically gave up. So I tried it on my own for six months, but still I had nausea and vomiting after all food and most liquids. Then I found a wonderful doctor who put me on domperidone. I am a little better and can function. For the most part, liquids stay down now, and I can eat bread. That's a lot better than I have been able to do for the last year and a half!

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Gastroparesis - Diagnosis Question: How was your gastroparesis diagnosed?
Gastroparesis - Possible Causes Question: What do you believe was the cause of your gastroparesis?
Gastroparesis - Symptoms Question: What symptoms do you experience with your gastroparesis?
Gastroparesis - Treatment Question: What kinds of treatment, including diet and medication, have you tried for gastroparesis?

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