I've updated twitter & the Queen of Crohn's page briefly on what's going on but this is my platform for where I can go in detail without feeling judged, or like a burden or anything that makes me feel like less than my healthier counterparts.
Well Friday I had an appointment with my new(and I use that term loosely) local adult GI. I saw him once before when I was losing weight like it was going out of fashion and dying seeking a DX but he wasn't of any help to me in that area so I had no choice but to move to another doctor that could help me.
He met me with a genuine handshake and an exclamation of "Wow you're all grown up now." He flipped through my chart and we told him about my journey to getting a DX in 2010-2011 and his eyes kept getting bigger and bigger with each turn of the page on my chart. He asked me how long I have been on prednisone and I told him I just got back on it when I was in the hospital. "No. I mean like period. How long have you been on it since your first dose?" I felt kind of ashamed when I told him since 8th grade.
His eyes got really wide then. He tucked his head in between his legs and rubbed his fingers through his hair and went off on his entertaining tangent that began with "Geez Louise how are you still active?! There's only 3 medicines on the entire planet used to control this disease. You had a reaction to Remicade. Humira never did it's job. And after two years on Cimzia your still flaring. I know you've had more than enough radiation so I'll spare you but I want to scope you." I nodded my head in agreement but couldn't resist asking "Can I please get off prednisone?" He said "Well yeah I bet you are ready to get off of prednisone! Me too! But it sounds like your still active so, for now, no. If the scope shows you have active inflammation then we're adding Imuran but if your disease is not active and it's just thickening then we need to talk surgery. You've been dealing with this for a long time now." Then he turned to my mom and said he promised not to do surgery unless it's absolutely necessary but sometimes you have to.
Not excited about all that. Ughh. Every GI I see keeps saying the word surgery and Imuran and both those words scare me. I just don't want an ostomy, even if it's temporary. I don't want to even think about a permanent ostomy. Or the sewing up of my butt. Like that will just make me feel inadequate as a woman. I'm way too young for this nonsense. You always hear 30 something's with Crohn's Disease say they are too young for this DX but ohhh noooo sir. I as well as the thousands of others under 18 are too young for this.
Ok enough tears. So that's the plan. I'm getting a colonoscopy after Spring Break. Pray for my mental health as well as physical until then.
No comments:
Post a Comment