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Anonymous Personal Story

Anonymous Personal Story: A long road to a diagnosis- Gastroparesis

I write this at 6am as I suffer a flare up for the past week, luckily I haven’t thrown up yet today, This all started at a younger age i am now 20 Ive always experienced random stomachaches or would just randomly throw up every so often, it was enough to hate it but not enough to get help for it, I did go to the hospital once with severe stomach pains when I was like 12 but of course they brushed it off called it “acid reflux”, i did get stomach aches often as a kid and then theyd just go away. So when they said that My mom and I bought it like yea makes sense I use to struggle with certain formulas as a kid whatever. I continued to struggle with this issue and noticed around sophomore year is when it became more often but I never saw a pattern in anything never knew exactly what triggers a stomach ache and nausea or me to throw up the acid in my stomach, for a while I was blaming anxiety. Now flash forward I’m 19 I’m about to get on accutane (a serious medication for acne) I entered hell month, I was throwing up every day multiple times a day, extreme nausea from the moment I wake up at anytime 3,4,5am I’d wake up every hour with the same pain that wouldn’t go away til maybe 1 or 2 o’clock pm. I notice my bowel movements began to also get weird diarrhea every morning. Finally I reached my breaking point I’m crying every day becoming beyond depressed which is already a major side affect of accutane, I completely turned into someone else not myself anxiety through the roof and stomach aches like crazy I was desperate and depressed. I end up going to the hospital quite a few times, also during this time is covid and I have pretty high anxiety and need my mom at doctors appointments but during this time it wasn’t always an option. I started using marijuana as a way to feel better. I noticed it was the only thing to help with nausea and get sleep after everything I had already tried prior but of course it’s only a temporary fix but the 90 million medications I was being prescribed by my ER doctors and my pediatrician and home remedies nothing worked I literally lost hope and could not believe I could live a life like this for the rest of my life. I finally am able to get into a GI doctor after so many were closed or not accepting appointments due to covid. I will never forget this doctor, I was throwing up and crying at my EXTREME breaking point I could not deal with this pain any longer I swear to you to this day is the worst pain and experience I’ve ever had. The doctor comes in sees me bellied over in pain asked me what I’m feeling I explain to him. I see him close his eyes turn and put the folder on the sink look at me and ask “do you smoke marijuana”, word vomit comes out I say yes and immediately all of my feelings were invalidated. “all these teens are getting sick off marijuana blah blah I need you to quit smoking for a month and get back to me” I was in complete rage that he wrote me off as quick as he did I had to speak up for myself. I said to him calmly “I’ve been experiencing this longer than I’ve been smoking” he asks “how often do you smoke” I said everyday as long as ive been dealing with this. At that point he says yup theres nothing i can do for you basically stop smoking get out of my office I’ll prescribe you more medicine that isn’t working see me in a month. I completely lost hope and it was the first time I’ve seen anything like it, the lack of any sort of empathy in a doctor should not exist, It is so important to make your patient feel heard and it is your job to figure out what you can do to help. I am completely disgusted by that mans attitude I wanted to complain to someone I just didnt know who, so here I am. I am sent home I’m furious they did nothing, I can’t do it anymore theres no way I can go home like this forever. My mom takes me to the hospital across again in desperate need.to help me, (This hospital is the same company as the GI doctor) Same thing, asks me about marijuana and at this point its written in my chart I tell him i smoke only for pain he tells me stop smoking blah blah gets me a 4th catscan don’t see anything wrong. Im defeated at this point but at least this doctor was more genuine and nice about it. I just take my defeat and say okay. I stopped smoking for 2 weeks and dealt with the pain, I did a healthy diet. One day I had a salad and I went to throw it up and almost choked on it like the salad was still whole. My best friends mom finds me one more GI doctor to try. I didnt even want to there was no point at this point they don’t believe me, they aren’t taking me seriously because I smoke. I go to this GI doctor, Dr. Dioria the sweetest most genuine doctor. He cared for my pain he saw my pain he was able to schedule me for an endoscopy asap it was a monday. He tells me if you have any more unbearable problems go to the hospital and to call him and he will have me admitted. I am able to hold out for the endoscopy comes back and my stomach and esophagus are inflamed but we still dont know, he sent something out for lab and now we’re just waiting on those results back,except after my endoscopy I was in excruciating pain, back to the hospital I go, Finally I’m admitted and but on this crappy diet literally starving. Day 2 in the hospital they do a gastric emptying test that Dr Dioria ordered, Finally a diagnosis. Gastroparesis. My stomach takes almost 3x longer than the average person to digest food The relief I felt to know it wasn’t all in my head. It’s incurable is the last thing I wanted to hear though. Day 3 I’m finally able to stomach food and am 18 pounds lighter than from the beginning of the month. all doctors of course tell me stop smoking there was one nurse in the hospital that treated me differently because of the smoking and had her smart comments but whatever I just want to go home and be normal again. The medications they prescribed me still dont work its been almost a year I’ve been dealing with it. I’ve cut fruits and vegetables out of my diet, I really miss salad though 🙁 I’ve figured out this is just my life and what I have to deal with. Although I am still stuck with the pain everyday I have to thank god for it not being as severe anymore. Flash forward I have a friend that works in the hospital that asks if I’m still smoking I said yea but I’m doing better and she goes on to basically tell me its not a real diagnosis and they just say that to patients that smoke. All i know is my pain is real, it affects me every day I just wish it’d go away it effects me at work quite often idk how thats gonna work when Im older with a good job tbh, but I’ve met more people that have it as well, I’ve read these stories my feelings are valid and no one ever deserves to feel otherwise especially at your most vulnerable time.

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