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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Diagnosed 2 Years Ago After Being Sick For Years

Sarah Gilbert
Sarah Gilbert

I’m Sarah, from Colorado. I’m 37, and was diagnosed in May 2 years ago after being sick for many years. At first it was just written off by many doctors, and after finding out what was wrong I’ve realized I probably have had delayed emptying problems my entire life. I’m lucky, I respond well to reglan, and have recently been gaining some of the weight I had lost back. I’m so glad to be here! This is a pic of me tonight, pretty bad pain but still smiling!

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Nicolle Arianne Forrest’s Story

I was a young, vibrant, active 37 year old living in the heart of Chicago with an amazing job and awesome social network. I was on top of the world pursuing ALL my dreams. One day, out of the sudden and clear blue, my weight started plummeting…and rapidly. I was constantly on the go, traveling, exercising, dating, shopping, etc., so I didn’t think much of it at first. Then one day, my infinite wisdom clicked and I decided it would be a good idea to use the Internet as a medical guide. Bad idea! I started googling “rapid weight loss” and “nausea” on Internet sites such as WebMD and was horrified about the information I read. The condition(s) listed were extremely frightening. (FYI, I went from 114 lbs to a frail 97 lbs in a two week span). I weighed in on every scale I could find anywhere I went. When I didn’t like the number, I justified in my mind that the scales were faulty or calibrated incorrectly. I am 5’5 and petite-framed to begin with, so every calorie counted and I could NOT afford to lose even an ounce.
I couldn’t digest any solid foods. Applesauce, pureed bananas, soup broth, and shakes became my new best friends. After having the million dollar workup of repeated and costly expensive lab tests which included endoscopies and colonoscopies, I was diagnosed with a clinically dangerously low B12 deficiency. One meal a day was filling. I was starting to feel lethargic. My caloric intake was low. I was emaciated and malnourished. I even fielded embarrassing questions from loved and concerned ones about being anorexic or bulimic. But, to those who know me, I am such a foodie with a sweet tooth that rivals none other. If eating had been an Olympic sport, I would have been a gold medalist. At one point, (at the request of my friends), I even sought counseling from a psychologist and nutritionist. Other than the B12 deficiency, all my lab results were considered within “normal” limits. Not to mention, the sudden onset of nausea and bloating was AWFUL. I felt nine months pregnant and was vomiting 24/7 around the clock.
After ruling out all the routine culprits, according to my symptoms, I was screened for Crohn’s, Celiac, and Pernicious Anemia plus so much more. One day, my GI doctor recommended having a Gastric Emptying Scan (a non-invasive outpatient procedure). Sure enough, the results indicated a diagnoses of moderate to severe GP. I was relieved to finally have a firm and legit diagnosis, but was now wondering why and how I developed this. Since I am NOT diabetic, I was classified in the idiopathic (unknown) category. I knew I was in for a real surprise moving forward. My whole diet was about to change. I obsessed about what I could or could NOT eat anymore. No more french fries or donuts, I thought??? Those were staple items in my every day meal.
My doctor put me on a regimented cycle of Reglan, but it was too aggressive for the lining of my stomach even with a dose of Marshmallow root. So, we switched to a less potent medicine called Domperidone (which sounded like a fancy Champagne to all my non medical friends). However, the problem with Domperidone is that it was NOT currently FDA approved in the United States. I had to order it from a special pharmacy. Sometimes it would take weeks (which felt like eternity) for the shipment to  arrive at my front door.
Fast forward to today. Five years later, I am now 42, feeling relatively healthy and full of energy. Fortunately, I only have bouts or flare ups every 3 months, but they are manageable and tolerable. I started to exercise again routinely and play tennis regularly. Although my diet is somewhat restricted, I have identified trigger foods and watch what I consume. I have found new things for my palate to enjoy and will splurge on eating “trigger” foods in moderation. I have gained some of my weight back but still have a long way to go until I reach my optimal BMI.
The goal of sharing my personal story is to help create awareness and motivate others. Mind over matter is a powerful tool! I have been inspired by reading other stories and wanted to reciprocate with sharing mine. I was determined that I would be the one in control of GP and be in the drivers seat! Unfortunately, and sadly enough, GP is so underfunded, but with the sophisticated technology we have in today’s field of medicine, I am optimistic that we will find a cure one day! I’m sure these amazing scientists and clinical researchers (like my father-in-law) have medications in the pipeline that will one day eradicate GP. The moral of this entire dissertation is for other GPers to realize that although GP might be a hard diagnosis to swallow and digest (literally), one can still lead a happy, normal, and productive healthy lifestyle with the right course of treatment and proper healthcare. I am proof!!!
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