Hey everyone! I hope you are all doing ok! I have heard adults say “New Year, New Me” for years now every time a new one starts. That expression could not have been more true for me this year. On January 6th, I had to have my second endoscopy and colonoscopy, and that was also when learned I had to say goodbye to pills and say hello to IV infusion! That’s right, yesterday was my first day having to take Remicade.
That’s not all though! So you know how when you are sick, you gotta start taking new medicine if old ones stop working? Yeah, that’s what happened with me, except my medicine was not working since day ONE!!!
Back in August, right after my little sister was born, I had a really bad UTI, my Pediatrician prescribed me some antibiotics. Mommy didn’t think to tell Dr. Patel about it, we filled the prescription and I took the whole round of it. A few days later, to my desperation, I saw blood in my stool again. So, we went through the same process for the millionth time, it felt like. I went to go see Dr. Patel, to have blood work done and a stool test. Results came back positive for C-Diff AGAIN! For the 5th time in 6 months. He gave me some medicine so the blood would go away and I could stop going to the bathroom ALL THE TIME!!!!! I took it for 14 days, and the blood went away. 2 weeks later, it all started back. Do I even need to say what happens next? That’s right, the C-Diff was either back, or it had never gone away in the first place. Either way, this time, it never got better. That’s when we started planning for my next scope. Doctor Patel was nice enough to let me wait until my after my Birthday, which is October, then Thanksgiving, then Christmas, and even New Year’s. I wasn’t excited about this at all. Having to do the Miralax cleanse is a HUGE DEAL for me. I guess I am scarred from the last time. You know, the time I told you about on one of my other posts. I was hospitalized at the time, and feeling really sick from the Miralax, I couldn’t stand drinking that stuff anymore, but my cleanse wasn’t done yet. My nurse ended up having to stick a tube in my nose, that went straight in my stomach, with my lemonade + Miralax mix. That made me even more sick to my stomach, and I started vomiting. Once that happened, the other end of the tube, that was supposed to be connected to my stomach, came out of my mouth, and I freaked out and started crying. My mom freaked out too, and started yelling at the nurse, demanding that she took it out immediately. Understand now why I am scarred for life over it? No matter how much I hate it, and how many terrible memories it brings me though, I still had to drink it. The whole 8 oz bottle of it. That stuff is gross, and of course, I didn’t do the best job at drinking it. I cried, and not just because I had to drink the worst thing in the world, but because if I couldn’t drink all I was supposed to and my intestine wasn’t entirely cleaned out, there was a possibility it would get cancelled, and I would have to redo the whole thing over again. Plus I love to eat, and going all day without it is a serious struggle.
After the scope, my doctor broke the news to my mom. He told me my colon was twice as bad as it was when I first got diagnosed, even on the medicine. All that medicine wasn’t working since day ONE!!! Which really sucks. So really I wasn’t having a flare up I had just stayed sick ever since, and now I have to start Remicade. Like I said before, yesterday was my first infusion. I didn’t know what to expect or how exactly it was going to be, but once I got there, they first measured and weighed me. I was doing pretty good. Next, they took me to the infusion room, which wasn’t big enough for my mom and Shawn to sit with me, There were recliners right next to each other, separated only by the IV stand and a tiny little table. They gave me some pill to take, something I am still trying to figure out what was for. Then, they asked me where I wanted them to poke me at and that’s when I knew it was getting real. She had her kit out and everything, the blue rubber band, the soft ball for me to squeeze so they can find the best vein,, the needles, and everything else. I gave her my right arm to look at, even though, since I am right handed, I usually don’t like my IVs on that arm. She sprayed cold spray to numb some of the pain, and I did my job, which was to look away, while she did hers, made it as painless as possible and make me feel better. I want to say thank you to all the nurses that worked that day. Thank you!! They got me comfortable on my recliner, they had a bowl of snacks on one side of my chair, a bowl of candy on the next, they put a heat pad on my arm when the IV was, a blanket for me to prop my arm on, and I just reclined there for 2 and a half hours, either writing on this blog, or watching One Tree Hill on Netflix. It was fun!
All in all, the day I started my Remicade, I already felt so much better, except for the really tired part of it all. I fell asleep twice after being poked. Once in the car and then when I got back to my house. And that is when I had the strangest dream. It went like this: Once Upon A Time a little girl had fallen asleep at her house after having her first Remicade infusion to treat her Ulcerative Colitis. She fell asleep on the couch for about an hour and got woken up in the most aggressive way, her little brother grabbed her phone and slapped her in the face with it. The End! Only, when I woke up, startled, it was all but a dream! I knew I got on his nerves but I didn’t know it was that bad! Calm down, little dude! Wish me luck, just in case my brother wakes up before me again tomorrow and finds a phone! He gets into EVERYTHING! The other day, he pulled my little sister’s formula off the kitchen counter, and spilled it ALL OVER HIMSELF!
That’s all for today!
For those that are reading this, I just want you to know that we all have hard days sometimes, whether you have a disease or not. We all have those days where it’s impossible to put on a smile. But for those that do read this and struggle with IBD like me, I just want to share something I saw on another website:
For those of you that don’t have a disease and are having a bad day, or feel like things just keep going wrong, making it hard to let out a smile, just know that today is just a bad day and tomorrow isn’t too far. Pray and have faith that your day will come, and even if it seems like a far time from now, it’s gonna happen. Until next time!