I’m Melissa, am 38, and have been diagnosed with GP since March 2017. I believe it all started after I was put on an antibiotic for an ear infection. Within a few days I started having issues. I’ve had 4 failed PICC lines/2 TPN rounds and a failed J Tube. I am waiting for the insurance to approve a bypass surgery to remove about 75% of my stomach. I’m very blessed and married my husband at the end of June (the day after getting a PICC placed). We have a big, busy family, we each have 3 kids (yes that’s 6 total) and are a proud US Navy family. I have horror story after horror story of ER visits/hospital stays but I will continue to fight. For myself, husband and kids ?
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.
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.
I was run over by a tractor when i was five years old, don’t remember the accident and don’t remember most of my childhood. I did receive a TBI and was told my organs shifted. My mom was told I would have problems but they didn’t know what they would be.
I have gone back and forth to many doctors and specialists and have heard your too complicated, thats not my field, i can’t treat you, stuff like that, oh and its all in your head!
Finally after many years found Stanford and my specialists there are finally putting the pieces together.
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.
