Hi, I am Jessica, and I am almost 18 years old. I have not been diagnosed with anything yet, but last year, I was 98% sure I had Gastroparesis, based on my own research. I had a 2-hour gastric emptying study, and it came back with no abnormalities. Gastroparesis is the one and only illness that fits my puzzle exactly. Please let me know if you think it sounds like I have it.
I have been suffering for a little over three years, since the beginning of 2012. I vomit at least 20 to 30 times a day, every single day. I am always nauseated, and mornings are the worst because it makes me not even want to wake up. I am always tired, and I get confused more easily. I am beyond weak and get exhausted from only running eight feet or climbing up four steps. My abdominal region is always hurting, as if something inside of me is trying to get out with a knife. I also hurt in my back and in my rib cage. I vomit right after I eat, sometimes 35 minutes after, and I vomit every morning before I eat. If I don’t eat, I still vomit, but with blood and a burning sensation around belly button and upper back.
I have had an upper endoscopy, an upper GI, many ultrasounds, many, many blood tests, a pelvic exam, CT scans, and a brain MRI, and most everything has come back pretty normal. When I was hospitalized due to dehydration, malnutrition, pneumonia, viral encephalitis, and salmonella, my tests turned out abnormal. I never go to the doctor’s anymore because what’s the point? They just will say there’s nothing else they can do. I’ve been on every medication they can think of. I lose weight every day and then gain weight some days. For example, I will lose 12 pounds, and then I will gain two to three back. I can barely ever do anything, and I am usually on bed rest. I get scared going out in public with family and friends because I always get sick. Please help or give your opinion on whether this sounds like Gastroparesis to you or what else you may think I have or what I should do. Thank you!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
Hey Jessica, it does sound like you have gastroparesis. The only weird part is vomiting before you eat… That has never happened to me it is always after consuming water or food that I feel symptoms. I know you must be spending all your energy on researching. GP is weird as it is a dynamic condition meaning you can have a normal gastric emptying scan done one day and a delayed one the next. I’d try to get another one done (even though keeping the food down will be tough). I’ve seen a specialist now who wants to insert a gastric neurostimulator, might be something that can help you too.
Stay strong you’re not alone ❤️
Hi Jessica. Normally gastroparesis reacts the most only after you have eaten something. With mine, which I have been suffering severely for 3 years now, I have delayed emptying and I vomit roughly 30 minutes after eating or drinking even water. I’m not sure what the pain in your back could be from except maybe fatigue? However, the weight gain and loss , especially the large amount of weight loss is something very common to gastroparesis, as well as severe stomach pain from acid reflux and imbalances in your systems normal gastric digestion juices. I only process 29% of my food and thankfully recently received a gastric pacemaker and j-tube for additional nutrition which has made a tremendous change in my life allowing me to go back to school. I hope you get better!
The symptoms you’ve described, including gastroparesis, are a small sampling of those common to a rare genetic disorder called Ehlers-Danlos Syndrome. Research, then if more symptoms fit your case see a geneticist at a children’s hospital…there is an EDS program at Cincinnati Children’s as well as a children’s hospital in Chicago run by Dr. Brad Tinkle. Other possibilities; pain and exhaustion caused by severe electrolyte depletion, not surprising due to tummy troubles. Last thought is abdominal migraines which fit your symptoms very closely. There is usually no headache involved with this disorder but you do need to see a migraine specialist because, well, that’s who treats migraines. Never give up searching, don’t avoid doctors, there are great ones out there and you usually find them accidentally. I’ve self-diagnosed my problems, had them confirmed by the RIGHT doctors after barely living through the wrong ones. One last thought…something may be irritating your vagus nerve causing some of your trouble. Get to a children’s hospital SOON–it’s where they will LISTEN. No time to waste!
I would agree that you should go to a Children’s Hospital where you can see specialist who should be able to get to the bottom of your issues. I don’t know where in Michigan you live, but Sparrow Hospital-Lansing has a great children’s unit, Grand Rapids has a Children’s Hospital or University of Michigan-Ann Arbor is top notch. Best of luck!!!
It sounds exactly like gastroparesis! Have you had the 4 hour nuclear egg gastric emptying test?