I don’t know what to do anymore…
I’m 20F, and I was recently diagnosed with grade 3 gastroparesis after dealing with stomach issues pretty much my entire life. My gastric emptying study showed that I still had 47% of the food left in my stomach after 4 hours.
For years, every stomach doctor I went to blamed my symptoms on my weight. It wasn’t until I lost over 70 pounds in just a few months because I literally couldn’t eat or keep anything down from constant vomiting and diarrhea that my GI finally ordered a gastric emptying study.
Now I finally have an answer, but I still feel like I’m not being taken seriously.
I’ve been hospitalized twice since my gastric emptying study in July because I’ve been vomiting nonstop and still can barely keep anything down. I’ve called my GI multiple times trying to get in sooner, but he won’t see me until the 26th. I’m miserable. My quality of life has gotten so bad, and I feel like I’m watching everything I’ve worked for slowly fall apart.
I’m a junior in college and I’m also a thrower on my school’s track and field team. Track is a huge part of my life, but more importantly, it helps pay for my education. I’ve gotten so weak that I can barely stand for more than 10 minutes without feeling completely exhausted. I’m genuinely scared that I’m going to have to quit, and if I lose track, I don’t know how I’m going to afford to stay in school.
Even my “safe foods” aren’t safe anymore. I feel like I’m running out of things I can eat, and I really, really don’t want to end up needing a feeding tube. I just want some kind of quality of life back. I don’t expect to magically be completely healthy—I just want to be able to eat something, go to class, throw, spend time with people, and live my life without constantly being sick.
I also have primary biliary cholangitis, and my liver levels have been all over the place with how little nutrition I’m getting. I just started back at school, and I’m already at the point where I feel like I might have to go back to the hospital because I’m so miserable.
My mom also has gastroparesis, but hers is nowhere near as severe as mine. She can mostly eat what she wants and has mild flares here and there. For me, it feels like one wrong food can put me into a flare that lasts for weeks or even months. I know everyone with gastroparesis is different, but it makes me feel even more alone because I don’t personally know anyone my age dealing with it this severely.
The last few months have honestly taken me to such a dark place that there have been times I haven’t wanted to live anymore. I just turned 20. I’m supposed to be thinking about my future, finishing college, competing, having fun, and figuring out my life. Instead, I feel like my entire life revolves around whether I’m going to throw up, whether I can eat, whether I need to go back to the hospital, and whether my body is going to let me get through the day.
What hurts the most is knowing how long I begged doctors to take my stomach problems seriously, only to have everything blamed on my weight. Now that I’ve lost over 70 pounds because I physically cannot eat enough, suddenly there’s a problem worth investigating. I can’t stop wondering if things could have been different if someone had listened to me sooner.
I want a future. My passion has always been helping people, and I want a career where I can do that. I don’t want gastroparesis to take away college, track, my future, and everything I’ve worked for.
If anyone here has severe gastroparesis and has been in a similar place, please tell me what helped you. Foods, treatments, questions I should ask my doctor, ways you got doctors to actually listen, how you handled college/work, literally anything. Even if you don’t have advice and just have some words of encouragement, I could really use that right now.
I just want to feel like there’s some hope that my life can get better than this.
One more thing I forgot to mention—my PCP’s PA prescribed me Reglan, but I absolutely cannot tolerate it. It makes me feel completely unlike myself and honestly makes me feel like I’m going crazy, so taking it has been really difficult. I also have 8 mg Zofran for the nausea, but at this point it barely even touches it. I feel like I’m running out of options for managing the nausea and vomiting, which is making everything even more frustrating. If anyone has had a similar experience with Reglan or has found something else that helped when Zofran wasn’t enough, I’d really appreciate hearing what worked for you.