I Had No Idea What Gastroparesis Was

Ashley Boman

I was diagnosed with Gastroparesis in 2007 at the age of 17. My story, however, started long before I was diagnosed. One of my earliest memories is of being woken up by my parents in the middle of the night laying in puddle vomit. This happened very frequently as I grew up.

Throughout elementary and middle school I was in the nurse’s office daily with the worst stomach aches you can imagine. I was told repeatedly by the school nurse and my parents that it was just nerves. No one would listen to me, so I suffered. Most of the time I tried to hide the pain and sickness because I was tired of being told it was all in my head. As I grew older and started high school thing continued worsen with my health. I was in and out of the ER and urgent care on a weekly basis, vomiting daily and losing weight rapidly.

It wasn’t until I was 17 and could pay for my own healthcare that I was finally referred to a Gastroenterologist. After many tests and procedures, the doctor told me that I have Gastroparesis. At that time, I had no idea that those words would forever change my life. The doctor wrote me a prescription for a medication that I was told to take 30 mins before every meal. It was supposed to help my stomach motility; it didn’t. It did however cause me to have constant panic attacks and muscles spasms. When I returned to the gastroenterologist to follow up, he was frustrated and told me that if the medication I had tried didn’t help, there was nothing more he could do for me. I still didn’t realize what Gastroparesis was or how it would affect my future. I left not knowing that I needed to be treated for this.

Over the next 10 years I got married and had two children. When I got pregnant the first time I was 21 years old and weighed 97 pounds. I was vomiting daily before I got pregnant and the pregnancy only amplified the problem by 1000. I was actually losing weight instead of gaining any, for the first half of my pregnancy. My body was so small and frail that my son almost died during birth. The doctors performed an emergency c-section and were able to save his life. My second pregnancy was just as difficult and ended in another c-section.

I was a young mother to two children and I was still constantly in the hospital. My husband is in the military and deployed twice during this time. I had to move back home and in with his parents because I wasn’t able to care for my children alone. I still had no idea why this was all happening to me. I just knew my body was really sick. At this point my liver started to enlarge and get inflamed. I spent Christmas in the Intensive Care Unit with an enlarged heart, liver and fluid around multiple organs. In 2015 I moved back to my hometown of Albuquerque. My husband switched over to The National Guard and trained to be a paramedic so that he could better take care of me. After moving back, I set up my care with a whole team of specialty doctors at my local university hospital.

Finally, in December of 2017, after suffering my entire life, I was diagnosed yet again, with Gastroparesis. The difference was that this time I had a husband in the medical field and a team of doctors to explain to me exactly what that meant. My results came back saying that my Gastroparesis is severe and that my stomach is partially paralyzed. Paralyzed to the point that only a few months after my second diagnoses I was fitted with an NJ enteral feeding tube (A tube that goes up your nose and down through the GI Tract, bypassing the stomach and into the Jejunum). I have tried every medication that is on the market for Gastroparesis, to no avail. Currently there are very few treatment options. The medications all have terrible side effects and only work for a small number of people. I am diagnosed with Idiopathic Gastroparesis, which means they don’t know what caused it. In my case, my Gastroparesis is progressive and only getting worse.

I am now 28 and 100% dependent of my feeding tube. I have a consult in a month to have my feeding tube placed permanently. If my feeding tube ever fails me, my last option will be TPN (IV nutrition). Gastroparesis does not discriminate, it affects people of all races, ages, shapes and sizes. We recently had a 4-year-old in our
Gastroparesis community die from this horrible illness. We need help to find better treatment options and a cure. No one should be forced to starve to death.

Thank you for taking the time to read my story. I really hope it gives you a little insight into the Gastroparesis world and the struggles we face.

Loading spinner

No Compassion

Sandra Hearn

I am complicated. I have Lupus, Chiari 1 Malformation, severe Gastroparesis, POTs, Hoshimotos, and a really bad spine with five tarlov cysts at S1-2. Throughout the past couple of years having been brushed off with Chiari in 2010 by a neurologist and finally figuring out in 2015 what was wrong the damage was done. I had brain surgery in April 2016. Vagus nerve damage and a brain bleed as well. I have the best neurosurgeon in the world. one of the only doctors that truly does have compassion. I have been in and out of hospitals like the majority of you. The lack of compassion is mind blowing.

I am almost 54 years old. Two days ago I went for a lumbar puncture. I got a call from a nurse and she was as sweet as she could be. She walked me through what would take place. The problem wasn’t the nurses. The problem was the doctor. He didn’t care I had a feeding tube. I had to miraculously find a way to lay on my stomach.

Just last week I went through two tube changes. One where they cut the stoma to fit a larger tube because they refused to order my tube that I had. So I had a tender belly already. I had to prop my 83 pound self up using my weak arms and legs during the procedure. Then the impatient doctor didn’t wait for the numbing meds to take affect. He proceeded even after I told him I was in pain multiple times. Seriously? I shook in pain. I cried in silence. More trauma totally unnecessary because one man chose not to have compassion.

This is just one story. I have too many stories. I could fill a book. Our hospitals lack compassion. Sadly it is becoming the norm.

Loading spinner

Michelle Donaldson-Grago’s Story

We all have our own stories with gastroparesis; some may be different, but many are the same.  We never know day by day, hour by hour, or even minute by minute what is going to happen.  We may be fine and pain-free for just a second and then the next we’re on our deathbeds… Every day is a constant battle — not a struggle, but a BATTLE… a battle against our own bodies, a constant fight, a constant WAR!!! We are our own individual soldiers — but we too need help…

This may not be cancer but to us it is our cancer… And we need to find a cure!! This is not a game, this is our lives… Daily nausea, vomiting, constipation, diarrhea, liquid diets, feeding tubes, bezoars, malnutrition, dehydration, exhaustion, chronic pain, pressure and bloating… Walking around like we’re 6 months pregnant all because we are packed full of undigested foods creating what we call our food babies. And yet we are the ones who maintain a constant smile on our faces because we are embarrassed and don’t want others to know we are sick.  

We’re not looking for pity or sympathy… Just belief in us and a damn cure…. So please, when we say we are sick, believe us, WE REALLY TRULY ARE SICK…. Please, please, please help us get awareness out there to everyone in the entire world.  Gastroparesis is bigger than just our nation it affects others as well.  Like I said, it may not be cancer, but to us, it is our cancer!!! Please help raise awareness!!!!! Thank you and God bless.

Loading spinner