So, my spring break had just begun, and my GI doctor wanted me to trial the enteral feeding formula soon to know if they could transition me to enteral feeding in the summer.

I still had some of my enteral feeding formula drinks from over the summer when I had tried them prior to being admitted. They still weren’t expired yet, but the date was coming up, so I felt it was necessary to try them soon and if anything happened, I wouldn’t be missing school at least.

At 11:30am on March 6th, I took 1 sip of the enteral feeding formula and immediately went into a dry heaving fit afterwards.

I did manage to swallow it down and it did stay down even among the dry heaving fits.

2o minutes later my nausea still was increasing but I tried to ignore it and rested in bed watching Netflix.

At 12:40pm my pain had escalated so high that I needed to take my oxycodone.

At 12:45pm I took my nausea medication and talked on the phone with my dad.

I spoke with my dad about feeling frustrated with myself for trying the enteral feeding when we all knew it was going to make me flare.

I felt frustrated that I kept naively trying foods/drinks while my doctors were just there to recommend me to try something else while I was left to suffer the consequences of it for such long periods of time.

I had more dry heaving fits into the evening and took more nausea medication at midnight.

I had gotten up to be in the night and was crying from how bad the pain had gotten.

I couldn’t even roll over in bed without crying- interesting reminder from the past, when this exact scenario happened in Texas (As mentioned in “The Hell Weeks”).

I sent off an email to my medical team that evening regarding my thoughts on these “food trials”. I have an image of the email below with names redacted for privacy.

I was up all night with the flare and got a few hours of sleep finally at 7 am the next day.

I wasn’t as hunched over the following day, but my nausea was still so incredibly high.

I continued taking my nausea medications and had to take another oxycodone for the spikes in pain that began midday.

My nurse had also happened to come that day to change my dressing and I once again unlocked the door from my phone in my bed.

As the evening came, my flare escalated, and I had to take another oxycodone.

This was the most I had taken oxycodone in sequence to each other. Normally I’d just have 1 at the height of the flare but this flare just wasn’t giving up.

I was up all night once again for the second night in a row- really not loving that.

Spent all day of March 8th in bed but luckily didn’t need to take any oxycodone.

March 9th I was able to shower but had a dry heaving fit afterwards from doing so.

This day my stool also became very irregular.

I also had gotten in the mail a rug that I had ordered for my new apartment which I was excited about being able to have a space to design soon.

March 10th, I spent all day in bed and my flare was de-escalating, just really slowly.

March 11th I was awake most of the night with diarrhea. I had an appointment with hematology in the morning and for some reason my fatigue and sugars were really awful. I almost passed out multiple times on the journey there and my whole body was shaking.

My period began midday which was making my blood sugars fluxuate even more than usual.

I had gotten more labs done during my appointment and kept arguing with the nurse practitioner to explain that my liver issues were because of my TPN, and my anemia was because of eating iron.

They still didn’t believe me for either, but I had told them that when they saw the results of my liver enzymes, they’d be lower because we adjusted my TPN (proving that the liver issues are connected to my TPN).

I received a call late in the afternoon with the nurse practitioner explaining to me that I likely didn’t have porphyria and didn’t need to continue with genetic testing because my liver issues were because of my TPN. – Wow, took the words right out of my mouth.

Got one point across but I still have to work on the anemia explanation though-we’re getting there…

The following day I was finally feeling back to normal and was able to work on some schoolwork and rest unfortunately just as spring break was ending.

The flare from the enteral feeding formula lasted a total of 6 days.