After the MRI on Friday, November 13th, it didn't take long for me to start feeling negative side effects from the three bottles of barium I drank as prep. My stomach turned to knots of pain and I found myself rushing to the bathroom every hour or two. I desperately wanted to sleep, but it seemed just as I cried myself to sleep I would get another urgent urge to go to the bathroom again. The urges felt like I had to pee, and even though I peed every time I went I also pooped black diarrhea every time, too. This went on Friday, Saturday, and even Sunday. I did not rest well. I lost eight pounds. I'm sure I was dehydrated. In the middle of the night, when everyone was in bed, I found myself sleeping on the bathroom floor to make for a shorter trip the next time the urge struck. One night, my dad slept in my bed so that I could sleep in my parents' bed with my mom close to their bathroom. My groans from being in pain woke my mom up a few times in the middle of the night, but she was a trooper. I felt physically and mentally fucked up, yet I'm still convinced the MRI was better than a colonoscopy.
I messaged my doctor to let him know how horribly I had been doing since the MRI and he let me know that it was typical for the barium to worsen symptoms, but that it should only last for a few days. Well, that would have been nice to know before I went into the MRI. It also makes me question the results of the MRI. Did the barium cause for bad or worse results?
I almost called in sick to work, but I hated to waste a sick day. I want to save my sick days for hospital visits if it has to come to that. Thankfully, I started feeling better on Monday. Yes, I was still experiencing pain, but I was experiencing less trips to the bathroom. My doctor called right at 5pm as I was signing off my computer at work, so I answered it even though my supervisor Kim was right in the office next to me. I would have walked into the stair well for privacy, but I didn't want my phone to drop the call. My doc asked about how my visit with my colorectal went, so I told him, "It was too tight to do the sigmoidoscopy, so she just flexed it with her finger and I go back in three months." Geez, I can't imagine what my supervisor is thinking of this conversation. My doc then went on to give me my MRI results: There is swelling in my small bowel, a possible fistula, and I was constipated during the MRI. Obviously, this means there is active disease, which makes us question if the medication, Cimzia, is working. My doc gave me two options: bump the dose of Cimzia to every three weeks instead of every four or switch to Humira or Remicade. I decided that I want to be sure Cimzia is not working before I switch to a different biologic, so I chose to bump the dose. I'll get lab work done in a few months to see if my inflammation levels have gone down and that's how we are going to tell if Cimzia is still working or not.
I was crying during my drive home from work, which has been happening more often than I care to admit lately. I had my car read me my messages for the day and Brittany came to my rescue again to turn my day around. Her and her family got me a get well gift, so I called her to thank her and filled her in about the results. I don't know how she does it, but she should write a book on how to be a friend to someone with a chronic illness because she is an absolute beast at it. She rocks my world when it needs rocking. Thank you, Brittany, for being an angel disguised as my friend. I know we don't talk that much, but I hope you know your heart is amazing and I love you!
I made it to work for the rest of the week, but I have been unfathomably exhausted. I did my Cimzia injections on Thursday, November 19th. Throughout the week I experienced occasional stomach pain. Mainly after a BM, but sometimes the pain just hit like a Mack Truck. I've been going to the bathroom more often than I'd like, but I've had worse so I'm happy it's not worse. Sleep has been difficult because I'm either waking up to go to the bathroom every few hours or I'm awake because I can't sleep through the pain.
I was supposed to visit Taylor this weekend, but I cancelled on her to stay home and recover from the week I've had. I promise it wasn't to stay home to binge watch House of Cards on Netflix. Thankfully, she understands I'm not always a flake. She's been a great ear for me to vent to. I don't complain verbally, out loud, but she is one person that will listen and I won't feel guilty when I need to get it off my chest. I know I complain on this blog (even though I think I'm just explaining the facts of what I'm going through mostly), but I think that's different. The minute you don't want to read it you can close my page, but mentally it helps me to let it out sometimes. She encourages me to call her at 3am when I'm in pain and can't sleep. Thank you, Taylor, for always being there to listen about my crazy shit. Thanks for always checking in and sending me funny memes. My love for you runs deeper than the sewers. I love you, Stinkbrain!
I even had to turn down an offer to go to the Gator game. It was the right decision because I feel like the rest I got today did me well. I've only had pain once today and I've only been going to the bathroom about every three to four hours, so I'm super happy I seem to be on the right track. I have more to say, but I'll blog again tomorrow since this post is already long
