Patient Comments: Gastroparesis - Describe Your Experience

Please describe your experience with gastroparesis.

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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Comment from: dbk, 35-44 Female (Patient) Published: January 05

I was diagnosed with gastroparesis (GP) almost three years ago. Zelnorm helped the symptoms a bit, and then I was prescribed Reglan, which was effective for a while longer. It is no longer effective, and the new drugs I've tried since then haven't helped at all. I have tried many different diets as well with very little effect. I am constantly bloated and nauseated. I am desperate for relief and searching for a doctor who will perform surgery. Unfortunately, most doctors believe "surgery is not necessary." Obviously, these doctors do not have GP!

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Comment from: Shannon, Female (Patient) Published: January 05

I was diagnosed with gastroparesis (GP) almost two years ago. My symptoms have been extreme at times: severe pain, nausea, vomiting, and diarrhea. My symptoms don't seem to be connected with what or when I eat. Sometimes I will have an episode that will last days at a time. I will often only eat a yogurt or a spoonful of cottage cheese every few hours just to keep my energy up. This is a miserable condition, and I empathize with all who have it.

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Patient Comments

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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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