I guess my story is a bit all over the place. My whole body is a mess to begin with. I’m in investigation for a genetic disorder that would explain my many conditions affecting most of my body’s systems. Basically my health’s getting worse throughout the years and now I’m in a wheelchair and all.
I had digestive issues since I was a kid like reflux and constipation and they were more or less taken care of. I dealt with them eventually. In February 2023, my family caught a stomach bug. It was a small one as they recovered pretty quicky. However when they passed it down to me, I did not recover. After 3 days, the symptoms had changed and it wasn’t the same anymore. We waited the mark of 2 weeks to go to the ER. Before that we had seen the pharmacist, my GP and we tried so many things to ease my symptoms nothing would do. I could keep down less and less food and in the end couldn’t keep anything at all including water.
In the hospital, no anti-nausea meds worked on me whether oral, or IV or injections. I had loads of tests done and in the end while waiting for a gastric emptying study, gastroparesis was the only thing that was fitting my symptoms (when I eat, I can throw up undigested or partially-digested foods for hours after a meal. If I eat fibre, it can even be 12-13 hours after a meal. ). They said my bloodwork was not too bad so they sent me on my way to deal with it all myself no instructions and all, waiting for me to deteriorate enough to intervene. We tried prokitenics, none of them worked. I kept losing weight and felt increasingly weaker. I was admitted to the hospital 2 more times, the last one being 2 weeks because my heart was starting to do funky things because of malnutrition and also because I was hypoglycemic. We were very close to giving me a NJ tube, but the doctors weren’t all in favor so we tried other stuff. I was on an unbelievablely heavy amount of meds and they made me have really bad muscle rigidity, spasms and partial paralysis side effects. At some point we don’t know exactly how but I started to make progress on being able to tolerate stuff. So eventually I got discharged and got to go back home.
Recovery was hard and we had to cut the meds at some point because of the side effects they were just too intense and I couldn’t live with them. I had gotten to a point where I could eat meals and just throw up a bit, sometimes. But I relapsed and haven’t been able to go back to that point ever since. I was able to come back to school after 2 months even though I was back to not keeping anything down. I’m a part time student now. Now it’s summer time and the hospital I go to doesn’t know what to do with me. I got a referral for a research hospital in my city in gastroenterology but I don’t know when I’ll get an appointment if it’s 6 months, a year or 2. There we’ll have to redo my gastric emptying test because I could only keep some liquids when I did it the first time and like I learned on this website, gastric emptying with liquids can be normal in patients with gastroparesis. It came out that way for me at least. My nutritionist and doctors agree that my symptoms can’t be explained by anything else than a gastric motility disorder aka gastroparesis so we’re kind of like stuck until I have better answers. It makes me feel like a fraud that lack of clear official diagnosis.
And so meanwhile I’m on everything they can think of. Prokinetics that don’t work, low dose antidepressants that don’t work, anti-acid meds that work on my reflux, but not on the keeping food down thing, therapy that helps my mental health but not my ability to keep down anything. I’m on a gastroparesis diet which definitely has an impact like if I respect it, I don’t throw up my meal after 12-13 hours. Yet I still can’t keep most things down anyway. It gets hard because I have issues with liquids even though my emptying is normal with them and basically it makes it really hard to follow my diet. Also, moving around after eating also has a huge negative impact on me. My diet really makes me discouraged as I used to be a huge foodie and now well it’s so restrictive and impossible to follow because of the liquid intakes and it’s hard to find a joy in eating now. I’ve been referred to a clinic specialised in dealing with food relationship because of that. So yeah for now I just puke everyday waiting to find a way to get better and hoping I don’t deteriorate so I don’t have to be hospitalised again.
Good luck to anybody reading this. I hope somebody recognised themselves in my words and it helped them feel recognised and less alone. I’d like to feel less alone in my weird journey too.
I’m a 19 y-o girl
