Patient Comments: Gastroparesis - Describe Your Experience

Please describe your experience with gastroparesis.

Comment from: Linda, 55-64 Female (Patient) Published: October 28

I was recently told I have GP (gastroparesis) after several severe bouts of uncontrollable diarrhea and decidedly nasty vomiting that smelled and tasted like sulfur. I'm type 2 diabetic and have recently started insulin hoping to stave off more problems. I've barely started any major testing because I've had a hard time getting any appointments that anyone would consider timely. I don't vomit much, but I do suffer from fluctuating diarrhea and constipation along with major bloating. When the diarrhea returns, it is always preceded by what I call a "liquefied gut." By this, I mean there is a decidedly loud grumbling in my lower abdomen coupled with a fair amount of pain. When this starts, I know it's only a matter of time before the diarrhea returns. I think I may also have IBS (irritable bowel syndrome) because I find myself lactose intolerant, fructose intolerant, and mildly gluten intolerant. I've had a colonoscopy and an endoscopy and only found that I have a tortuous esophagus. Along with all of this, I constantly feel full after eating the smallest amount of food. Doing an abbreviated liquidation diet does nothing to provide me with the nutrition I need to remain healthy. My hope is that I find out what is going on in my body and that no one else ever has to suffer this horrible disorder/disease in the future.

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Comment from: AP, 35-44 Female (Patient) Published: December 04

I was diagnosed with gastroparesis two years ago after having a gastric motility scan. My gastroenterologist told me it probably came from a bad stomach virus I had suffered previously. We were hopeful I might overcome the gastroparesis in time, and for a while, I had a very mild case. (I was even was able to get off Prevacid by making changes in my diet.) Unfortunately, stress and another minor stomach bug appear to have erased those gains. I now have constant reflux that is barely controlled by Prevacid (taken twice every day), and I am on Carafate to protect my throat. I'm nearly at the end of the diet and lifestyle changes I can make: I do not smoke, drink, or drink soda. I am a vegetarian, so most of the big triggers were not in my daily routine even before I got gastroparesis. I've moved to small frequent meals and away from anything fried or fatty. The hardest part is the nausea and throat pain, I am finding that having no food in my stomach is as much a nausea trigger as having too much. Some days it's not clear what is triggering things to be worse or better. I do still drink coffee, but only in small amounts and on a full stomach. I cannot tolerate Reglan, and I am afraid to take domperidone. (The arrhythmia side effects scare me.) Coffee or a little bit of chocolate does seem to help get things moving after I eat. I can't take them on an empty stomach though; they make me feel sick if I do that.

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Comment from: dotty, 45-54 Female (Patient) Published: February 20

I was diagnosed in 2012 with idiopathic gastroparesis. It has steadily gotten worse. Nausea is so bad, that even drinking water isn't appealing. The specialist believes I could really benefit from domperidone, but I can't afford it. At times something gets stuck in my throat, only to realize it is undigested food.

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Comment from: MGraham, 55-64 Female (Patient) Published: August 06

I had surgery for a recurrence of uterine cancer, and was in the hospital for 3 weeks because of ileus. Now, 2 years after surgery, chemotherapy, radiation and cyber knife - even though I've intentionally lost 25 pounds, my belly is still big. I'm constipated, get full quickly and nauseous after I eat. I haven't been to doctor for this yet, but it sure sounds like gastroparesis to me. I'm making an appointment to see the gastroenterologist next week. I'm so sorry that you are all suffering so badly.

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Comment from: Russorachel, 19-24 Female (Patient) Published: June 19

I'm 19 and I was diagnosed with gastroparesis 6 months ago. I'm only 5'2 and I'm supposed to be 95 to 100 lb. but since I've been diagnosed, I've dropped to 90. I'm nauseous all the time, have terrible stomach pain, and I'm constantly tired. I need a way to gain weight without killing my stomach.

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Comment from: KarenH, 45-54 Female (Patient) Published: June 17

I have been suffering from non-diabetic gastroparesis. This isn't living! Never knowing when my stomach will function or stop. In 1 year I spent 72 days in the hospital, nearly died more than once, ended up with a perforation and colon resection. There needs to be more research and treatments available. So far I've reached my doctor's goal of staying out of the hospital more than I am in. I want to 'live' my life, not just exist in it.

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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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