Health Care: Denied

My gastrointerologist told me if I am not interested in being on Remicade (or a similarly priced drug) for the rest of my life I should seek treatment elsewhere. She did not prescribe me Prednisone to stop my flare. She wants me to take tests and have a colonoscopy. She wants to discuss medication options in a month. She is comfortable with me being in an active flare for 6 weeks without medication.

Clearly this is upsetting news, and also problematic. Because I cannot afford her treatment option, she is going to forego prescribing me the standard treatment for my condition that has been used for the past 70 years. Without tests to verify that I am having a flare, she will not prescribe the medication I need. She does not believe that I know my body well enough to know when I am sick. (Normally I would be okay with tests, but since I am already taking steroids the tests won’t show any inflammation. I need a new prescription now because I do not have enough pills to safely taper down from the prescribed dosage.)

The first time I had a Crohn’s flare, it took 3 months and at least 7 different doctors to get a diagnosis. I was turned away by doctors who told me that my month long diarrhea was not chronic enough. I took all kinds of tests. I had resident doctors stare at my asshole. I was wasting away. I was starving to death.

I had a colonoscopy, and they ripped apart my bleeding ulcerated colon to take biopsies to confirm the visible inflammation. Twice.

I do not need to go through the process of proving that I have a chronic disease a second time. I just need steroids to stop the flare. I refuse to wait another 3 months, wasting away and starving to death. I refuse to wait 6 weeks.

7 days into my flare I started taking steroids so I could avoid further damage to my colon. This seems prudent. The longer the flare continues, the more damage is done to my colon. Holding me hostage financially and by withholding basic, affordable, evidence-based prescription medication is unethical and unconscionable.