Nicole’s Story

Hi all ! My name is Nicole and I was diagnosed with Gastroparesis in 2017. I was however having symptoms two years beforehand! Two years ago I randomly fell really sick on holiday in Portugal. One night i vomited everything I had eaten. I lost my appetite for a week, living off practically water. I was at a scary low weight by this point.

My parents took me to a private doctor who told me I had ‘depression’ and ‘anxiety’ (yes- i was depressed from not being able to eat and the nausea!!!). I was then put on anti depressants and some vitamins. A month later I started to feel a little better, but kept getting random nauseous episodes where I would just feel randomly sick. 

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I’m Still Here GP

I am Cristin McCraw. I’m 44 years old. I’m a survivor of idiopathic Gastroparesis. I was diagnosed in 2010, and had no idea what a wild ride I was in for! I began having symptoms in 2009, and my PCP Alison H. Nguyen, M.D. , actually came up with the idea of me possibly having idiopathic GP. These symptoms included nausea, vomiting, severe weight loss, malnutrition, abdominal pain, bloating, severe constipation, night sweats, fainting, fatigue, trouble concentrating, and so forth. We can all go on for hours about our symptoms.

At that time, I was working on E2 ICU at Stanford Hospital as an RN. This was my dream job of course. 

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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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Lakshmi Faith’s Story

Hello, my name is Lakshmi, and I’m a 31-year-old female.  I started to get sick at the age of 14 years old.  I’ve been suffering over 17 years now with severe abdominal pain; nausea; vomiting; diarrhea; endometriosis, which causes me to bleed heavily, makes me very dizzy, and causes severe migraines that last from 1-2 weeks straight every month; and anemia.  I came into the emergency room on Friday, March 20, 2015, and am currently admitted for dehydration and pain.

I’ve been hospitalized more than 480 days in the last 17 years.  It’s a daily struggle living with gastroparesis; I’m usually admitted 2-3 times a month for it.  I’ve lost most of my veins already.  My IV lines are usually in my neck, fingers, palms, groin, legs, feet, and toes.  I’ve had ports and PICC lines.  I usually get stuck 10-15 times before they find a good line.

Gastroparesis has caused other health issues as well.  I’ve developed over $12000 worth of dental problems that insurance does not cover.  I’ve spent many birthdays and holidays in the hospital.  It’s a living nightmare, and I wouldn’t wish it on my worst enemy.

Imagine starving to death but not being able to eat, not being able to sit or stand up straight.  Your daily goal to achieve is to be able to eat and drink a little, making sure it stays down, and to be able to stand up long enough to take a shower.

I can go on and on and write a book or two on the daily struggles of living with gastroparesis.  I am one of the 5 million Americans who are suffering from this nasty, cruel disease, and I’m asking you all to please help spread awareness of this deadly disease so that more research can be done and we can have the opportunity to eat every day like everyone else.  Please help!  I’ve already lost one of my good friends, Ashley Gillmore, to this disease (last July) as well as a few members of my Facebook support group.  Recently, we lost a young, handsome toddler boy.  Too many of us are suffering and dying every day.  We desperately need help, so please, I am begging you all to help spread awareness of gastroparesis.  Thank you!

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