Don’t You Forget About Me!
It had been 2 weeks since I had been back at work after taking time off from my foot injury.
I guess my stomach (which I often refer to as “the bitch”), really wanted me to remember that she was still there…
June 24th, 2021 I am woken up at 6 a.m. from sleep by severe upper left abdominal and flank pain. I run to the bathroom to see if that would help, but after I’m done my pain increases. I drop to my bedroom floor and clench my hands on my upper left abdomen and back. I continue writhing around on the floor for 30 minutes expecting it to go away with time.
After the 30-minute mark I call my mom and ask her if I should call in sick from work-she says yes. I called in sick (which my shift started at 10:30 a.m.) and then proceeded to call my dad.
I left him on speaker phone on the floor as I continued to frantically move around to try and find a position to reduce the pain. This time the pain had developed a sort of “pattern” and would peak at a level 10 every few minutes and then return to a 9. I had difficulty talking so I was mostly heard crying and groaning on the phone. I try taking some Tylenol but when my pain’s high, the dry heaving starts.
It had been 2 hours since the onset of pain and I emailed an emergency message to my primary care physician asking what to do. They advised me to call 911.
Here’s what happened and what I learned not to do for next time:
I was still living alone at this point because my roommate was out of town. I had called 911 but not thought out how they were going to get the door open. I also needed to get a bag together of my things so I could have my ID, clothes (since I was in my pajamas and didn’t want to walk 3 blocks barefoot), etc. I attempted to get some items together but stopped because of the pain. I called my building staff to let them know an ambulance was coming so they could be let in.
I hear them knocking on my apartment door and I manage to get up and walk with my knees to my chest to the door. The EMTs open the door and said, “I assume this stretcher is for you,” which made me laugh inside.
The EMTs were really kind as I directed them which clothes and items to put into a bag for me. The whole time, my hands hadn’t left from my abdomen or flank (and they were getting tired from holding so tight).
8:30 a.m. I arrive at the emergency department, and I’m put in the exact same room I had been in a few weeks prior from my foot injury. I recount the complex history (as you all now have read) to the multiple doctors and nurses I have on my case. Everyone is stumped. My pain begins subsiding at random to a tolerable 7 and I was told that they weren’t sure how to help me. I was offered Tylenol and I told them I was ready to go home (since I knew they couldn’t help me there). They asked me what they should put on the discharge forms, and I said to just put that it was the GERD.
At 10 a.m. (cause discharges take a while) I walked home carefully and was hungry since being up for a while. I made some gluten free microwavable mac & cheese (one of my safe foods) and had a few bites. I then proceeded to take a nap until I was woken again from sleep for round 2 of abdominal pain.
At 2 p.m. I ran to my bathroom as I began vomiting into my trashcan. I call my primary care physician and they tell me to not eat anything else and to just try and keep fluids down.
I try to distract myself by watching Netflix in bed, but my abdominal pain keeps spiking preventing me from doing so.
At 5 p.m. I finally get to sleep.
I had assumed that after this day I would be able to go back to work- Nope.
Ok, so then maybe I just needed a few more days off and then it’d go away- Nope.
Then, maybe a week? - No.
Two weeks? - No.
Three weeks? - No.
Oh no, that’s when I realized-this was going to be like last time…months.
The pain only got worse with time and the pattern fell very similarly to the 5 month flare I had the previous year.
6 days in, I had an appointment with my primary care’s nurse practitioner since I was required to have a visit following up my trip to the ED. It was during this appointment that we noticed I had dropped 7 pounds. The nurse told me they were unsure how to help me, so I asked for them to get me a new GI doctor since the 2 I had seen left. I also asked to be put back on Omeprazole.
Week 2 I was entirely hunched over whenever I stood up. I was progressively getting out of bed less and less as my pain kept increasing over the days. I kept eating less due to a mixture of me not being able to get up to cook things, and because I was still vomiting frequently. I began ordering my groceries and would call my building to carry them up to my door, since when I did head downstairs to pick them up, I would vomit when I made it to my apartment from the effort.
I kept in close contact at this time with my primary care physician and my dietician who I had 2 virtual visits with (past couple months) that had been helpful.
I was taking 4 Tylenol’s daily along with Ondansetron, Omeprazole and Nortriptyline. Unfortunately, none of these seemed to be helping.
I still had my appointments for my foot that I didn’t want to cancel because I had waited months to get. I was seeing the last orthopedic surgeon on my list, and I figured it’d be an easy enough appointment. I was pleasantly surprised when the doctor informed me, they didn’t want to leave my case. They were unsure of what was going on but wanted to try some different tests. They requested that I redo my MRI because it had been over a year since the previous one was done. We scheduled it at 2 different hospitals to see which one could get me in sooner.
I returned home and vomited from the effort of the visit (me trying to act as if everything was normal).
I also had my neurologist appointment to go over the results from my EMG. They said that everything had come back normal and they didn't see any signs of the stomach or the foot being related to a neurological issue.
Since I had been losing more weight, my dietician and I were working to try and not have it drop further. I had gotten a lot of protein drinks and protein soups to try (since I’m not a big drink person). Finding drinks was challenging because they had to be gluten free, GERD free, and dairy free. I had found one drink that I researched every single ingredient prior to sipping it to see if it would be safe.
It literally was the safest drink I could’ve had- even down to the type of protein powder they used, pea protein.
I took a couple sips and stopped when I felt my throat on fire burning. My tongue began to feel like it was burning too. I quickly called my mom and we made sure it wasn’t an allergic reaction. I looked in the mirror and my tongue and throat had been burned by the drink. The only ingredient in this drink that could have triggered this was cocoa powder.
At this time, I was taking Carafate (which the ER had prescribed to me) and dicyclomine which might’ve helped the drink only burn my throat and not damage whatever was going on with my stomach further.
I stayed away from the drinks and tried to stick to protein soups-which one of them, I learned, wasn’t GERD free as I realized it had onions in it which caused more acid. So, at that point I was left eating peanut butter by the spoonful.
I surprisingly was able to gain a pound by doing that.
The next day is when food started getting difficult to swallow.
In the weeks following, I continued to eat 3 meals a day anyways, aside from pain and swallowing difficulties. As I continued to eat, it only ended up making me more and more immobilized.
Read more on how this flare progresses by reading, “Second Flare, Feeling Prepared?”