I haven't been on here in months.
I started this because i was having a hard time. Wanted some hope, wanted to encourage others. Once i started doing well with my new medication, i stopped. I had felt the best i have felt in years! It was amazing. I have been able to explore new foods. Deal with this new term "constipation." What. Never thought i would know what that feels like (poop baby anyone?)
But as i sit here, feeling the sharp pains of inching out of remission, i feel like i'm losing sight of hope. I talk to no one about it, because no one understands. People can feel sorry for me, but no one will understand what it's like to constantly have the fear that one day, you will wake up and not be well. That you'll have to rush to the bathroom, and pray before you look in the toilet to see whats there. That you will become self conscious of your slowly dwindling body. That no matter what you eat, you will never be satisfied. Fear of losing my rectum. Of it becoming so scarred that it will have no function, and i will have to have it removed.
Almost every year in the fall, i have this issue.
2011-the most painful time of my life. Curling in to the fetal postion before and after bowl movements. Losing 15 pounds. Taking months to recover. Looking back at pictures of myself with "fat face." (moon face, side effect of steroids)
2012-not as bad of a flare, but a flare. Getting a colonoscopy before moving cross country to my new home in South Carolina.
2013-ER visit for my birthday. So.much.blood. That's when i found out i had ulcers in my rectum
And here we are in 2014. I have been on biologics for months with no side effects. I have weaned off Uceris and imuran. And am now only taking Lialda and Cimzia. Once a month, my saving grace arrives by fedex or UPS in a styrofoam container filled with ice packs. This month, when i opened it, two of the packs were melted. There were still many packs in there, and i opened the meds and checked them immediately. They were still cold. So i did my injections. But now i wonder..were they cold enough?
I know i can call my doctor Monday and get another injection in the office if i need one. They have some for people who have "break through flares" before their next injection. But as i sit here crying, drinking my tea, wondering what i did wrong, all i can think about is the dread of the next bowl movement. The ostomy bag. The years of pooping on the outside of my body.
Pity party. I can't do that. Stress is bad for the colon. I know i need to buck up and go on with my night. It's a night for friends :) Plus the husband will be home soon, and i dont want him to see me like this. He need not worry.
Hopefully we will meet again soon blog, because sometimes you just need to get it in the open.
