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Why I'm Talking About My Worst Day for IBD Awareness

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My worst day with IBD:

It is 2014, the day before surgery to get my ostomy – one of my next three J-Pouch surgeries. It’s late. I should be resting but I can’t. I’ve been up all night crying on the bathroom floor. It’s dark. Don’t get me wrong, I’m sure my apartment is well-lit, every light in the house is on, but I fear I’m losing consciousness.

You see, for the law week I’ve had a fever. I’ve been bleeding – I’m always bleeding. I live in pain but today the pain is much worse; this week the pain has been much worse. I know what it is: I have an infection. I’ve been on a high dose of steroids and my immune system has been greatly compromised. I barely recognize the face I see in the mirror.

I’m not telling my surgeon. I’m not telling my doctors. It’s late. I’m bleeding. I’m tired of bleeding. If I go to the hospital tonight, they won’t let me have surgery tomorrow morning. Surgery is my only escape from this life. It’s late. I’m bleeding. Hours pass, it’s getting hot. Should I call my grandma? No. She’ll take me to the hospital. I can’t go back there. Not before surgery.

It’s late. I’m bleeding. I take a shower, but suddenly I’m dizzy. I can barely stand up by myself. I decide to sit down in the tub and let the water cover my body.

It’s late. I’m bleeding. Dry tears stamped to my face as I pray to God to take the pain away because I cannot miss surgery tomorrow.

It’s late. I’m still bleeding. I try to go to bed but I’m hurting too bad. By this point I can barely sit and now I’m leaking. I get to the hospital. I’m taken back fast. The nurse lets me know they’ll have to sedate me for the procedure and suggests I call my family. I call my grandmother and tell her, “Grandma, I’m at Carolina Medical, the nurses want you here…” The nurse cuts me off. “Did you say Carolina Medical? Honey, you’re at Presbyterian.”

What happened after that is fuzzy. My surgeon came in the next day to visit my room, sat down in the rocking chair, looked me in my eyes and said, “You know I can’t operate, right?” I cried the rest of the day.

Let’s raise awareness and cure IBD.

#WorldIBDDay #Crohns #Colitis #UlcerativeColitis #Spoonie #InflammatoryBowelDisease

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Thinkstock photo via m-imagephotography.

Originally published: May 19, 2017
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