ava's blog

a year ago

A year ago yesterday, my fiancée had to call the ambulance because blood was continually rushing out of me with no signs of stopping and I felt extremely weak and my heart was pounding. It had started the evening prior and hadn't stopped through the night. The source was the colonoscopy I had gotten a week earlier that got me my Crohn's disease diagnosis. They took samples of the colon wall, and there's a risk that those wounds don't heal right and rip open further. They did for me, because the entire colonoscopy sent everything into overdrive.

The male EMTs that arrived were absolutely not concerned and inside the ambulance, my heart beat so fast like never before. I only saw white and heard a ringing in my ears. I think I passed out before and during any questions being asked. At the hospital, I had to wait a really long time in an ER room alone because they had a staff meeting and the only other ones not at the staff meeting were busy trying to record the hospital's podcast (lol). To fast forward, I needed bags of IV nutrition, IV Prednisone, and a blood transfusion and I was there for a week or so? I can't really remember. It was a terrible time. The hospital was really unprofessional and I had to constantly make sure to remind them of tests they said they were gonna do, stuff they were supposed to send my gastroenterologist on the outside, I had to make sure they're not giving my Nutriflex to my bed neighbor etc. When I left, I had rapidly lost weight because I ate almost nothing and my blood still wasn't back to normal. My hemoglobin had dropped to around 7 (12 is normal for me) and only briefly got up to 8 before dropping down again when they released me, and I only found out after they gave me the documentation. It was vile. They even tested me wrong to start other immunosuppressives so my GE had to do it all over again and it delayed my treatment.

It's amazing to realize it's been a year since that tragic incident. I cried so much and for months, things didn't really get better. Afterwards, we were trying to find treatment and keep everything in check with Prednisone, tapering off slowly from the 80mg at the hospital. If you don't know, prolonged Prednisone use causes a huge swollen face ("moonface"), lots of water retention and intense hunger that is completely decoupled from your actual fullness or needs. I tried my best, but still had to be on it for 5 or 6 months. I didn't weigh myself to keep my sanity, but that must have been my highest weight of my entire life, and it got me stretch marks on my thighs and hips. And except for good 1-2 weeks here and there, I was still mostly bedbound, later especially because of horrible medication side effects. I kind of blogged through it, you can see it in the posts I made April-October 2024.

I'm very grateful to be where I am right now, back to being independent, mostly healthy, able to go outside. It's not a given right, it really is a privilege that can be taken away instantly, for months or forever.

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I had a pretty bad scare recently that my Crohn's is flaring up again because I was in intense pain, but the past two days have been okay again. I have an appointment next week to possibly adjust my dose. For now it seems like things are winding down again. It really reminded me of how far I have come and to be grateful and humble about it.

Nowadays, I have lost basically all of the extra weight, I regained muscle strength and regularly go to the gym and work out at home. I am back in the office twice a week. I can take care of the household and grocery shopping again.

To celebrate the occasion, I walked to my favorite lake spot yesterday. When I was sick, that was unthinkable. Even just walking to the kitchen was exhausting and making my heart race. It's great to know that things can get better, and now I know I did it once again, I can do it once more.

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Published 23 Mar, 2025

#2025 #health