Living & Thriving with GP

I was diagnosed with GP in 2011 after inexplicably starting to lose weight my senior year of college in Washington, D.C.. Then, after returning home in Arizona, I started to get sick. After a year of testing with my Primary at the time, she finally said, “the last thing we can try is a GES and if that doesn’t show something, I don’t know what else we can do.” Luckily, the GES gave me my diagnosis and started down a long journey of multiple medications, many that made me sick and added further symptoms, but at least I was able to have an answer to what was causing my symptoms. I went from 180 lbs. down to 130 lbs. at the worst – ranging from being ok most of the time to being excruciatingly nauseous every day.



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I Am 32 And Have Idiopathic Gastroparesis

Jessica Poole

Hello ? I’m Jessica Poole from San Antonio TX. I am 32 years old & I have Idiopathic GP. I was diagnosed in July of 2016. I currently feel I have somewhat of a balance & as much control as I could possibly have of my GP. I take several meds daily to help that balance. I struggle to stay hydrated & manage my nausea & fatigue. I have an amazing support system, my husband & 3 great kiddos.

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My Daughter Passed Away From Gastroparesis

Robin H’s Daughter Marni

My daughter, Marni, passed away from GP March 22, 2017. I am forever heartbroken. She was diagnosed with GP 7 years before. She was on TPN 24/7 with home health.

We would go to the ER when the pain was intolerable and they always thought she was looking for drugs. She beat sepsis 5 times… only when she was septic would ER take her seriously.

All doctors and hospitals need more education regarding GP and need to take warriors seriously.

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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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Carolyn Sue McBane’s Story

My story is a little different than most. I do not have diabetes. In 2000,  I weighed 310 pounds and had gastric bypass surgery, then gall bladder, then colostomy a year later, but thank goodness it was able to be reversed. I did okay for about 5 years and lost 75 pounds but started having abdominal pain. I had every GI test known to man. It was my young internal medical doctor, Shannon Kennedy, MD, who ordered a GES and finally diagnosed me with GP. In the meantime, a huge hernia was discovered, and I had major surgery.

I believe with the last surgery, nerves were severed, so my muscles couldn’t work food out of my stomach!! I am sick every day, dehydrated, pain, nausea and now have to puree food or eat baby food. Next week I see a surgeon about a feeding tube. GP has robbed me of family, friends and self-worth!! I’ve tried 3 meds with no success. There is no cure, only treat symptoms! I do have my dignity. I try to help others with the same disease. I just became a South Carolina Gastroparesis: Fighting for Change coordinator. I’m fighting for a cure in the ways I can, and I will not give up. If I can stay sober 24 years, with God’s help, I can handle almost anything. God bless those who suffer from GP.  What a ride!!

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