Gastroparesis Survey: Updated Results
Last fall, I started a gastroparesis patient survey and posted the initial findings in December. Since then another 70+ fantastic GPers have added their input, so I’ve created an updated version of the results (14 pages, complete with charts, graphs, and your advice in your own words!). While it’s not in any way a scientific survey, I do think it’s a great opportunity to learn from each other, gather information, and share ideas.
Here are some of my observations:
- Many doctors believe that gastroparesis doesn’t cause pain, yet over 80% of respondents said that they experience stomach pain “often” or “always.” That makes it more common than vomiting among those who took this survey. In fact, over 60% of you said you “never” or “rarely” vomit.
- Even though diabetes is the most frequently recognized cause of gastroparesis, over 2/3 of respondents said their case was idiopathic. Diabetes was actually the least common cause noted (just over 6%).
- The vast majority of those who responded to the survey were women (over 90%). In addition, women appear to have a much higher incidence of idiopathic gastroparesis (more than 4 times any other “type”) than men (only 2 times the other “types”). This is consistent with the findings and demographics reported in medical literature.
- Reglan provided “no help” to over 57% of those who tried it. Domperidone, while more difficult to obtain, provided “moderate” or “significant help” to 50% of those who have taken it.
- The gastric neurostimulator “helped moderately,” “helped significantly,” or “cured symptoms” for 75% of those who have it (12 respondents). It provided “no help” for one person; the other said it “helped slightly.”
- It seems that two easy lifestyle modifications often provide relief. Over 75% of those who practice stress management notice at least some improvement in their symptoms, while over 70% of those who exercise experience at least some relief.
- Potatoes were overwhelmingly the most common dietary staple followed by nutritional supplement/meal replacement drinks (Boost, Ensure, Orgain, Carnation Instant Breakfast, etc.). Rice, pasta, cereal, bread/toast, soup, crackers, yogurt, cheese, pureed fruits, and smoothies were also very common.
- Like most other things, tolerance to dairy seems to vary from person to person. Many people said they rely on low-fat/fat-free dairy products while a similar number said they avoid dairy products, opting instead for soy or nut-based replacements (e.g. almond milk).
- Not surprisingly, figuring out what to eat remained the most difficult aspect of living with GP, followed closely by managing symptoms, obtaining proper nutrition, and the impact on social life/relationships. Unfortunately, few patients are given adequate information and guidance in these areas (something I’m working to address via health counseling and this blog).
What do you think? What do you find most interesting?
Tags: Gastroparesis Survey
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Thank you for the survey results (I participated!) and the travel tips are greatly appreciated.
You’re welcome! Thanks so much for participating in the survey.
My husband has been diagnosed with gastroparesis. He is a type II diabetic. His discomfort primarily is the bloating and discomfort with the food not moving out of his stomach and not being able to have a bowel movement. We have made an appointment with a Doctor at the Shadyside Hospital in Pittsburgh, PA to seek help and to maybe have the gastric neurostimulator inserted. We are scared, but we are definitely scared of taking another pill, because of all the medications for diabetes and now he is insulin dependent also. I read your site and found it very interesting and helpful to hear from others and then to read your survey results. Do you have any advice about having regular bowel movements? Thanks. Sue K.
Pain and malnourishment are my 2 biggest problems. I had bad reactions to Reglan and now take Domperidone. It initially helped me be able to eat things like cottage cheese, rice pudding, and polenta, but my gp has worsened over the past year and I’m on the verge of needing a j-tube. I have significant muscle wasting, now use a wheelchair, and have developed neuropathy in my legs.
I have idiopathic gp and live on Enlive or Resource Breeze, eggbeaters, rice crackers, cream of rice with almond milk, mini pretzels, and some Beech-nut jars like butternut squash, chicken, and carrots. I’m seeing a pain psychologist for visualization, breathing, biofeedback, hypnosis, and mindfulness, all of which help a bit with the pain. I was just started on 10 mg amitriptyline. In the fall they will add gabapentin and see if that helps with the pain.
I wish there were more treatment options of the actual disease itself, as opposed to just managing the symptoms with medications used for other illnesses.