Butterfly's Crohn's Disease Journey

Last updated: May 2022

In February of 2020 my daughter, (I will refer to her as Butterfly) Butterfly was hospitalized, after an ER trip, she had flu, Strep and Mono. We almost lost her.

That same year in June or July, can't remember it all blurs together, she was at the zoo with grandparents when her feet started burning/hurting. Thinking it was just from all the walking, her grandparents alternated carrying her, letting her walk and finished their zoo trip. By the time they got home her feet/legs were swollen and she couldn't stand up or walk.

ER trip #2

Butterfly was again admitted and tests run and discovered she had Crohn's disease. She's had at least 4 blood transfusions from February 2020 through current, lots of endoscopies and colonoscopies, blood work, and infusions and tried various intravenous medications trying to find one that works. Entyvio seems to work best right now. She goes to physical therapy every other Friday and we are trying to get her to drink more water but it has to be VERY cold for her to drink it.

It makes it hard when I have my own medical issues that I have to take care of plus help her. We are both stressed, depressed and so worn down. This is my Butterfly at her 13th birthday party.

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