In October 2017, I had surgery on my rectum. I have been bleeding ever since. This week marked 800 days of bleeding. It's not every day, but it's the majority of days. We cannot figure out what is causing it. We have not been able to stop this flare. It feels so long since I've been in control of my disease. Hell, we now officially call it crohn's disease, so it's not even the same disease I thought I had. Three years of trying things. So many different drugs over the last three years. I wear adult diapers now. 800 days of diapers.
I had drug induced lupus. I went blind. I had four eye surgeries. I lost my gall bladder. I broke my arm.
And yet, the thing that bothers me is the blood. 800 days of blood.
In two months, I am going on my first week long vacation in three years. All of vacation time has been hoarded and used for medical. Vacation in the form of a half day here bc my gastroenterologist is in east jahunga and takes all day, a hour here to go get a shot in my eyeball, an hour there to tell one more doctor my story.
I finally booked the flights, reserved a rental car, as hotel room. I'm letting myself get excited. And I sit here, terrified that I won't be able to go. Because it now appears this latest medicine isnt working. My stomach roars in pain daily. I plan for my next bloodwork, my next round of tests.
And all I can do is wait. And bleed on the 801st day.
