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It’s Remicade Time

After 10 years of being Remicade free, I’m back! Yesterday, I got my first infusion to be accompanied by many more. I’ll admit, I was nervous to get it as I wasn’t sure of the reactions. The infusion went well. No reactions…yet!  I’ll see how I feel over the next few days. When I was on Remi years ago, I always felt fluish for a few days but I’m hoping this doesn’t happen this time. I did get a splitting headache immediately after the infusion and have felt tired today. But nothing too bad honestly. Hoping this is the norm moving forward.

I do want to address a past blog post, How I Weaned Myself Off of Remicade. To this day, its my highest commented post. I know a lot of people are searching for ways to get off this drug. I was able to accomplish that years ago and share my story. I’m going be honest here, I feel extremely guilty to be back on it. I feel like a failure. I’m torn, as part of me doesn’t want to be a slave to drugs and the side effects. But the other part of me wants relief and to feel well. I want to be “normal” and be out and about doing fun activities with my family. I HATE being tied down to a bathroom and living in fear because of my symptoms. The prednisone, luckily, has helped the past month with these fears.

I still whole heartily believe in biological medicine and that the body can heal itself. I’m taking my supplements and I’m still eating healthy. I’m staying away from gluten, dairy, and my entire list of food allergies. I’m also still very cautious when it comes to eating raw fruits and veggies too. I’m trying to rest and stay stress free. Hopefully, my gut will appreciate this and will get happy again. Fingers crossed!

 

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4 thoughts on “It’s Remicade Time

  1. Girl, health is a journey, not a destination. You shouldn’t feel any shame in going back on Remicade. I hope it has been helpful for you. I am about to get off it because it caused me to have psoriasis. But it has helped me live pain free for the past three years. I am thankful for the way it has helped but also ready to move onto the next stage, whatever that is.

    1. Thank you for your kind comment! It’s hard not to feel all sorts of feelings when you live with a chronic illness. Good luck in your future health!

  2. Thank you SO much for this update. It makes a world of difference.

    I first read your “How I Weaned Myself Off of Remicade” when in the hospital with UC and C. diff. It was summer 2016, and my doctors were pushing Remicade but I was resisting, desperate to try EVERYTHING before going on it. Like you, I wanted to believe in the body’s ability to heal itself, and I had already experienced diet as a major influence on my disease. Ultimately, though, my situation was too dire and I reluctantly acquiesced to the Remi. I’ve been on it now for 1.5 years. I must admit they have been my most crisis-free, comfortable years since getting diagnosed. For the first time in years, I recently feel stable and I feel like myself much of the time, energetic and able to engage with the world. Diet still isolates me–even with the Remicade, I still seem to need a very restricted diet, sans sugar, dairy, gluten, etc. That isolation, plus fear of being immunosuppressed (this year’s flu season terrifies me), make me toy with the idea of just getting a colectomy and being done with my disease. I know that’s not an option with Crohn’s, and it’s obviously not a very appealing option anyway, since it would likely involve an ostomy bag. (I’m only 39.) But still…

    I guess I’m just writing to say thank you for being honest. It’s so important. You’re not a failure at all! You’re doing what you need to do to be as healthy as possible, and in my experience so far, sometimes that does mean going with the big-gun Western meds. I’ve come across half a dozen stories online where people get into long-term remission through diet…but in most cases, the stories are old and short. The person “cures” himself of UC through diet and supplements, tells how he did it, then disappears from the Internet two years later. I always wonder what happened. Did he have a relapse and feel too ashamed to write about it? For those of us doing research, it’s crucial to get the WHOLE story–what happens to the person over the long term. After reading your post in the hospital, I had some hope that if I went on Remicade, I could eventually get off it. I even bought the Swiss Detox Diet book. But at the same time, I am on Remicade, and am wary of getting off it. So in a way, it’s quite comforting to read that all has not been perfect for you since weaning yourself. It’s comforting that, like me, you have not found a way to maintain remission over time through diet alone. It feels authentic and gives validity to my own experience.

    So thank you so much for courageously following up and keeping the world up to date with your story!

    1. Katie, Thank you so much for your comment! It means a lot! Yes, my Crohn’s journey has not been perfect but I’ve seen improvement by changing my diet and taking supplements. Unfortunately, my days with Remi might be shorten as I’m developing anti-bodies against it. I go for an infusion tomorrow and at that point they will test my levels. I’m feeling good again and it’s hard to tell if its the Remi or my diet. I guess time will tell. Thanks again for the comment. I appreciate the feedback. Good luck in your health.

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