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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I started having stomach problems when I was 8

Rebecca Lucey

Hi my name is Rebecca Lucey and I started having stomach problems when I was 8 years old. I started at pediatric GI doctors and they said that they didn’t know what was wrong with me and that I was just overweight and constipated. They did every test you could think of: upper GI, colonoscopy, HIDA scan, X-ray, cat scan, and finally someone thought to do a gastric emptying scan. Which showed I had gastroparesis.

So I was officially diagnosed in 2012. My doctor put me on Erythromycin for three times a day for three years. Then in 2017 once I saw a regular GI specialist, he put me on Domperidone which didn’t seem to be working and then he just said I was constipated and needed to go make myself throw up. Needless to say I never went back to him. Then I found a new GI doctor who only cared about IBS and that’s the only thing you had wrong with you was IBS (which I don’t have).

A new doctor I found in January 2019 was who was supposed to be very good (if you didn’t have gastroparesis) and I was at the point where I was not able to hold down any food or liquids at that point and was very dehydrated. He thought I was having mental problems. Then I started throwing up blood and they found nothing wrong with me but admitted me to the hospital. The doctor did a gastric emptying scan and still said I had mental problems even when the scan showed that my stomach did not empty. Once I got discharged I found one last doctor and gave him my file, told him my problems and he said I needed a G-POEM surgery.

The surgery helped a lot. Although at the hospital they had me eat a meal the very next day after the surgery and that made me stomach hurt so bad. I was discharged and then two days later I was admitted again for pain and dehydration. All in all the G-POEM helped me very much and I am very thankful for the current GI doctor I have and my mom for putting up with everything.

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As a LPN I was never taught about GP in Nursing School

Flora Santagata

Hello, My name is Flora, I’m 55 years old & was diagnosed almost three years ago with GP. I was an LPN & it was never taught in nursing school.

When I was diagnosed, I thought they were wrong & was in denial for over a year. But finally doing some research & joining the FB page for Gastroparesis, I had to face it that this is my life now. I dropped down to 100 lbs, & threw up constantly with bloating, pain, & constipation. No matter what I ate, drank or crushed up, it wouldn’t go away. I believe that I had gotten GP from several abdominal surgeries. After
having a total hysterectomy at the age of 21. I thought that was it, no more problems. But soon afterwards I started getting sick like morning sickness or the flu.

Then in 1994 I had a bi lateral mastectomy with reconstruction. Then I had my gallbladder taken out because it elongated because there was no
female organs to keep it in place. All the while, I just thought I caught the flu more than the average person. After a while my family said something is wrong, you can’t get the flu every 3 weeks.

I finally found a PCP who said I think you have GP. He sent me for the GES test, & I flunked it. I now know how to watch what I eat, I can’t eat over 4 0z. at a time & usually eat every other day. Once I put my full attention to this disease. I found a Gastro Dr. who treats people with GP. She suggested I try Domperidone 10 mg, 3 x a day. Since I have taken it my weight has gone up to 140lbs, I my flares are shorter & I’m not in the ED.

I also had gotten SIBO. that is when food sits too long in the intestinal track & you get an infection. 2 rounds of different anti’s & it was gone. Not forever, because I went 7 months without it & I think I over did it with the false sense of I’m healed & ate things I shouldn’t have had. So back on the anti’s. This is like round robin. I’m not sure how long I can stay on the Domperidone, but I know without it, I wouldn’t be here today. FDA needs to approve this drug in the States. I will fight for this until my last breath!

I’m fighting everyday to keep living. For me, there is no other option. This is my goal & to spread the word that this a digestive disease, not in my head. I don’t need a psychiatrist, I need for the healthcare profession to admit that this is a disease & they need to find a cure! Treating my symptoms will work for now, but how long will it work? We need a cure!

I’m a fighter & will continue to fight this battle. It may not be everyday, but I will not give up! I am a human being, not just a diagnosis. I want to be treated as a human. If your reading this, I will take it that you too have been diagnosed with GP or you are a Dr. who want’s to help me & my family of GP. Thank God I am a positive person or else I don’t know where I would be. I know one thing for sure, If you are told It’s in your head, or there is nothing they can do for you, then FIGHT! We all must be proactive in our own healthcare now. I know it’s like a full time job doing that, but it’s where I am right now. Thank you for taking the time to read my story, God bless, & let’s find a cure ASAP!

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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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