The New Symptoms Storm…
On July 29th, I was having a typical day in the flare (dry heaving, swelling, pain, lack of sleep) and I had been watching some TV with my dad. At 6:35 p.m. I suddenly became unable to breathe because of a super sharp pain every time I breathed out. I began to panic, but my dad moved me to the floor and kept me calm.
I had to take super small breaths until I could work up to taking a normal sized breath without immense pain. This took about 2 ½ hours. Because of the intense pain and high stress, I had broken out in hives all over my abdomen. My dad examined my back and noticed it was very inflamed in the space between my shoulder blade and my spine which we thought could’ve been pressing on my diaphragm causing pain in that area and pain breathing.
I had remained in a position for hours with my head kept straight on a pillow in order to not have breathing pain.
During the week, I had also spoken with my dietician, and we determined it was time to transition to a “baby food diet” to eat mostly pureed foods since my swallowing issues were getting worse.
My dietician also introduced to me to the two forms of IV nutrition if I couldn’t sustain my diet which was a nasogastric feeding tube or parenteral nutrition (nutrition through a vein). I was shocked that I had gotten to a point in my health where I was having to even consider this and tried my best the following weeks to do everything I could to continue eating.
This of course, came at a great cost-mobility wise.
My esophagus continued to struggle more as I continued to eat food and I began having trouble swallowing marshmallows and Cheerios.
Also, from continuing to eat, there were many days where my body became fully immobilized. The pain would keep me stuck in bed so my dad would carry me to the bathroom and back.
The breathing flares (as I had called them) began to occur more frequently as the swelling from my abdomen increased. I wasn’t able to sit and watch TV anymore because of it.
I had also been started on Pantoprazole- a different form of acid reducer to see if it made more of an impact.
My diet had switched to foods like applesauce and mashed potatoes. However, I still managed to keep in my 2 waffles every morning.
My pills also began to get stuck so I’d eat Cheerios to try and push them down, until the Cheerios would get stuck too. All of it would remain in my throat for hours until it would finally go down.
August 2nd I began having pain when swallowing water. I also had gone with my dad to get my 2nd MRI done for my toe with contrast. I did the MRI and was really glad my dad had come because it was the worst condition, I’d ever felt leaving the house.
That evening I had soup with noodles that also got stuck in my throat.
From this day forward I was having almost daily flares of large pain so my abdomen would break out in hives often.
By August 3rd my esophagus had really had enough of my eating, but did I listen? -Nope (*not recommended*). I couldn’t talk because of the pain it’d cause, and I chose to continue eating my waffles that morning anyways. I had lots of trouble getting it down and it felt as if someone had stuck a soccer ball into my esophagus. I tried eating mashed potatoes later that day but stopped because it was too painful to get down.
That evening I had 2 breathing flares, more esophagus pain and was no longer able to roll over in bed. I had my dad help roll me over as I cried in pain.
I had asked my dad to move the inflatable mattress into my room that night since I was concerned that my esophagus might close up or that I’d choke in my sleep.
August 4th, I went to my orthopedic surgeon appointment with my dad. They mentioned to me that the MRI showed inflammation markers under the area that was injured under my big toe, but they said they had difficulty seeing anything. They explained that they wanted to do a biopsy in the O.R. to test the tissue and see what’s inside. They explained they’d cut in through the side of my toe since the skin underneath was too fragile.
I explained to them that I was dealing with stomach issues at the time and wanted to do the biopsy but would need to postpone it until I was better.
When I arrived home, I had another flare attack that lasted about an hour and got more hives.
August 5th-8th too many flares happening per day to be able to recount them here. The flares would vary based on the types I’ve mentioned previously (esophagus, breathing, upper left abdomen).
On August 8th, I was helped out of bed by my dad and was hunched over 90 degrees (just like last year) and moved slower than a snail’s pace. Every movement made me nauseous.
That evening I had 2 more flares and just couldn’t handle the waiting game. I came up with a plan to contact my primary care physician that evening because the flares went from being once a month, to every week to almost every hour.
The following day I received many messages from different doctors. My mom had managed to get me an appointment to see a pediatric GI specialist at a new hospital that was known for rare cases. The appointment organizer had called and told me the earliest they could schedule me was in October. I accepted and didn’t really care how far away it was since I had other matters at hand.
My primary care physician called and had managed to get the GI clinic to move up my endoscopy to the following day. We were also going to try some new medications since the past few months I had no safety blanket to fall back on.
August 10th, I had my endoscopy done and it went more oddly than the one I had done in Texas. For one, when I was going under, I started choking (luckily, I fell asleep quick, so I didn’t have to feel that) and when I was done, they had issues waking me up from anesthesia. My dad had come into the back where I was, and I was super nauseous and pale. After remaining there for a while, I got better but I had no idea why I reacted that way.
The evening and following day after my endoscopy my upper left abdomen was more swollen than I had ever seen it before.
In the past week I had also begun having brain fog which meant I’d be mid conversation with my dad and then forget entirely what we were talking about and what I was saying. He’d have to remind me every time as I drew a blank on what my thoughts were.
August 12th, even my own saliva had become difficult to get down. As anything moved its way down my esophagus, it’d get stuck in a different place in my neck, and then chest.
I was eating a piece of a waffle when I started crying out in pain. It took a very long time for it to move all the way through my esophagus and I told my dad that I couldn’t do it anymore- I needed to call my dietician and start one of the IV nutrition options.
On the phone with my dietician, they explained that the safer and more common option to try would be the NG tube. To first administer it they needed to admit me to the hospital so I could learn how to put the tube down my nose. They said they’d follow up once they had more info on when they could get me in.
I had trialed a new medication called Reglan which is a motility stimulator. I had some inconclusive reactions since the first day trialing it caused me lots of abdominal pain. The second day I just had lots of bowel movements, and the third day it didn’t do either.
The Reglan also made me feel hungry which was good and bad. Good because I had lost my appetite many months back but bad because it made me feel hungry, but I wasn’t able to eat. I would get full quickly, but my stomach would still grumble because of the Reglan.
I was then off the Reglan because I just didn’t want to be hungry anymore.
By August 16th, my stomach at this point was very bloated and it often felt like my abdomen was a tight balloon about to pop.
Since my food intake had drastically gone down, I was eating syrup by the spoonful to try and get the last bits of energy to be able to get to the restroom.
Read what happens next in the story titled, “The Rollercoaster of Being Hospitalized.”