Saying Goodbye to Remicade

How did it become 2018?! Let’s be honest, 2017 had its highs and lows but I guess every year is like that. It’s called life. Well let’s dive into the update.

My Crohn’s has been improving! I’m having normal bathroom days which for a Crohnie is MAJOR. I’m trying to up my “exercise” by walking and getting 10,000 steps every day. I’ve been strict gluten free and have been experimenting with the occasional salad. So far so good. What’s interesting is that my body is developing antibodies to the Remicade and at my last infusion my Remi levels were zero. The plan is to retest my levels at my next infusion. If my antibodies are high, they will take me off Remicade and put me on Humira. Here’s my question, if my body is running on NO Remicade is my body healing itself?! I see my GI in a few weeks and I want to tell him I want to try going drug free. I’m afraid he is not going to be on the same page as me. Why can’t GIs try and level with their patients? I understand that if I go medicine free and I start to feel awful, I’d want to go on meds. But I do believe that the body has an ability to heal with proper diet and supplements. I’ve done it before and my body can do it again. Fingers crossed!

Today, I had my LAST Remicade infusion. I took a Benadryl and Tylenol before my infusion to try and combat any reactions. My last infusion, I got itchy and my lips swelled. And after hearing my body was developing antibodies, I had a feeling I would have a reaction. About half way into my infusion, my entire body was itchy. This itch was painful and was even on the bottom of my feet. I was also coughing as my throat was itchy. I had to say something to the nurse as I couldn’t take the itch. She immediately lowered the drip rate and gave me IV Benadryl. It took the itchiness away but extended my infusion by an hour. It also made me feel very drowsy and I had an hour and half drive home. I made it  home but it was hard to stay awake. Long story short, I really don’t care what my GI says, I’m done with Remicade. I will not be going for another infusion. Like I’ve already said, I want to be off all meds at this point. Call it wishful thinking but it’s a goal I have.

I’m thankful that family life is going great and is in full swing. Landon and Logan are half way done with the school year. Landon is in the Fourth grade and Logan is in First grade. They started a BJJ class in the Fall and they have been loving it. I’m really proud of all they are accomplishing. It’s great to see them active and having fun. I also need to give major props to my husband. He is my rock and best friend. He’s been such a big help to me as I’ve been traveling through this crazy road to recovery. I love you Ben!

I hope 2018 will be a great year and look forward to see what comes my way!