Dx: Proctitis 1998, Pancolitis in 2009. GI verbally called it Crohn’s in 1998 because of family history but I recently found out that he never actually put anything except “mild Proctitis” in my chart. I went without insurance from early 2000s until 2009 where ER visit for pain and bleeding and subsequent colonoscopy showed “Pancolitis most consistent with Ulcerative Colitis”.
Current Symptoms I’m Having:
I’ve been flaring badly for about a year with no insurance. ULQ sharp pain, cramps throughout, nausea, lots of blood, lots of D w/ urgency everyday. 2 ER trips and hospital stays in the last 4 months to get it temporarily under control while awaiting an appointment with the only GI in town who will see me with no insurance, no job and no money.
After my initial flare in 1998, I was doing pretty good with no significant flaring until 2006 right after I quit smoking. My UC has not been fully controlled since then. Because of having insurance only sporadically, I’ve had to take whatever patchwork charity healthcare that I could get, which is mostly ER visits, short hospital stays, donated iron infusions because I lose so much blood, donated medications or ones that I can afford like Prednisone. I’ve tried Imuran, Colazal, Apriso, Canasa and Cimzia with no success. Prednisone usually gets me somewhat back in shape but then I can’t get off it and it wreaks all kinds of havoc on the rest of my system.
My biggest concern is having this disease
in the US with no insurance.
I have applied for Medicaid but I’m still waiting to hear back. I was let go from my last job because I couldn’t stay at my desk and out of the bathroom or the hospital or doctor office o r iron infusion room or get out of bed some days. Finding a new job is proving to be impossible for the same reasons. I applied for disability and I’ve been denied twice. I’m locked in a weird vicious circle of not being able to find a job because I can’t get the flare controlled and not being able to get the flare controlled because I can’t find a job and therefore don’t have access to insurance or doctors to get the flare controlled. I don’t know where it ends. I’m frustrated. It feels like if the Medicaid will come through and at least temporary disability until I can get well, then my life will change for the much, much better. I’m not sure how else to bridge the gap between sickness and health.
Where I’d like to be in 1 year:
In a year I’d like to have real and consistent health care based on what my mind/body’s requirements are, not simply what I can afford.