It has changed my life dramatically

I’ve had gastroparesis since 2010. It’s changed my life dramatically. Surgery to remove my gallbladder because my stomach wouldn’t move food. It just sat there. Tons of nausea, weight loss, abdominal pain…daily. I had to change how I eat food to more liquids, smaller meals, which wouldn’t have been as big of a deal by itself but because of comorbidities is highly challenging to nigh impossible. My diet is already limited due to Crohn’s disease and lack of a colon. The only FDA approved medication that worked for me was Reglan and that has a black box warning for tardive dyskinesia, which is unstoppable shaking for the rest of your life. I took reglan for 7 years due to no other options. If I didn’t take it I’d be so nauseated I couldn’t eat and my stomach would take days to empty one meal. My doctors didn’t think reglan worth the risk. I now take a medication from the UK called domperidone that I have to order online because it’s not FDA approved. It works better than nothing. In a country where there are multiple drugs for the same health concern, why is it that there is nothing in America I can take. Why were there only 2-3 options and none worth the risk due to potential and actual side effects? I implore you to push forward with research. Many people suffer idiopathic gastroparesis. It’s not our fault that we have it and there is no cure. Once the vagus nerve stops communicating that’s it. EDS, Lyme Disease, GI disorders have correlation with gastroparesis. As I learned in graduate school, correlation does not equal causation. Please find a cause. Please find a cure.

Submitted by:  Dr. Sarah Cooper

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About the author: Gastroparesis: Fighting For Change Admin

We created this website to provide the public with additional information regarding Gastroparesis. It is our goal to connect users with our Facebook advocacy group, “Gastroparesis: Fighting for Change.”

Our Gastroparesis: Fighting for Change Facebook group was formed to unite people with Gastroparesis and other digestive and motility disorders to work for change. It is not a typical GP support group, as we do not discuss personal medical issues. Rather, we established this as a place where members can discuss ideas regarding our mission, vision, goals, needs, services, and resources to work toward solutions. So if you want to make a difference for our GP community, we encourage you to share your ideas! Additionally, we need you to help us fight for changes in legislation! Also, you can help raise funds! Finally, you can help spread awareness! Please join our main group. We would love to have you!

You can find links to our Community Page and our Advocacy Group on our Resources Tab.

In order to accomplish our goals, we will be sharing many ways you can get involved on our Campaigns Tab.

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