I had my first Remicade infusion on Monday afternoon and it wasn’t so bad. It was actually kind of enjoyable!
Ok, so let’s rewind a little. I didn’t tell you guys the whole story the other day. It didn’t want to start the week off on such a negative note on CNC, and I was still waiting to hear back from my doctor, so I only gave you the gist of what was going on.
So, what did I last tell you? Oh, yea, I stopped taking Lialda and weened myself down to 2.5 mg of Prednisone. I was feeling great and my body handled this well for a few days, but then everything came crashing down and got worse and worse and, holy crap, so much worse.
**TMI/real life warning**
Thursday through the weekend, I was going the bathroom more than 20 times a day and seeing straight up blood in the toilet. Guys, seriously, there was so much blood. I’ve never seen anything like it before. In addition to these lovely symptoms, I was also dealing with painful cramping, cold shakes, night sweats (still am), and the high dose of steroids (60mg) was/is making me crazy. Basically, by the time Sunday rolled around, I was a complete mess and so, so, soooo tired.
I talked to my doctor on Sunday, and he said he would do his best to get me in for my first Remicade infusion on Monday. The infusion center at the MGH Crohn’s and Colitis Center was totally booked, but my doctor’s nurse (she is the greatest – I love her) finagled an appointment in a different infusion center on another floor of the hospital. It was amazing. I was so grateful and relieved (I even cried) when she called to tell me that I had an appointment later that afternoon. (It’s funny how my opinion of Remicade changed, huh? I was so resistant to it for years and now I was practically begging for it. I guess when you’re that sick, you’ll do anything to feel well.)
Mal stayed home from school on Monday to watch Quinn, so, as soon as I had an appointment, I headed into the city. I was a little nervous about my first infusion and bummed that Mal couldn’t come with me, but I put on my big girl panties and everything was fine in the end. Actually, things were more than fine.
The nurse, who gave me my first infusion, was so incredibly nice. Maybe she could tell that I was feeling a little uneasy because she made the whole thing seem like no big deal. She talked my ear off while she took my blood and hooked me up to the IV and, before I knew it, I was reclining back in a comfy chair and holding a TV remote in my hand.
And it gets better!
The nurse brought me snacks and warm blankets. Helloooo. It was so nice, especially for a new mom! Haha! And Mal and Quinn sent me funny pics while I was there, so the 2.5 hours ended up flying by. (Two hours for the actual infusion + 30 minute to monitor me afterward to make sure nothing bad happened. I didn’t feel any effects of the infusion… just a little tired when it first started, but I felt fine and totally normal by the end.)
So, yea, my first Remicade infusion went well. I am writing this post on Tuesday afternoon, and I definitely feel better, but it’s tough to know whether it’s the Remicade working or the steroids or a combination of both. I’m still not a 100%, but my doctor said it might take up to 3 infusions to see some real results, so I’m just taking it day-by-day and enjoying the health that I have at this current moment.
I also wanted to share some of the IBD resources that I’ve found helpful over the years. If you’re struggling with IBD or any sort of digestion/GI issues, I hope they help you too!
- Crohn’s & Colitis Foundation of America (CCFA)
- Team Challenge
- SCDLifestyle <— They also have a great podcast!
- Get Your Full Course
- Digestion Sessions <— New to me (a reader told me about it), but it has some serious potential. There are so many amazing topics. Be sure to scroll down to the bottom of the page to see them all.
Question of the Day
Any favorite health resources to share?