Learning With Ulcerative Colitis

After being in remission with Remicade until 2020, I’ve been on Stelara (we thought was working but then immediately wasn’t), then switched to Humira biosimilar called Amgevita which never worked, but last scope in January of 2022 didn’t show enough inflammation to warrant a medication change. Tuesday I had a flexi-sig that showed significant inflammation so we are now in the process of starting Entyvio. I am really hoping and praying that this is it - I miss what life was like on Remicade, until I broke through. I don’t even know what I’ll do if life is like that again. I’ve just been flaring or on prednisone for the last three years.

This flare up is awful, I borderline begged for prednisone which I got. Im decreasing every 3 days instead of every 7, so we’ll see how it works. I’m terrified to be even more immunosuppressed given the state of the world we’re in. I’m exhausted and frustrated, and it’s hard to not dream about the days I was on Remicade and living a completely normal life. It was incredible. It feels like a different lifetime. I’m scared and I don’t know what it’s going to look like from here.

So between my GI and I, we came to the conclusion that I should switch to Stelara. I’m not feeling too many emotions regarding Stelara specifically, but the idea of changing the medication (Remicade) that I had been on for 4 years, that gave me my own new normal, that allowed me to reach remission, is a weird thing. I can’t describe it, and I’m really struggling to process it. I thought we had gotten passed my flare up (we haven’t, I just have less severe symptoms now after being on Pred), but my blood work showed I had developed antibodies and Remicade wasn’t working for me anymore. I feel like I failed, and that I’m going backwards, and I’m trying to get passed those feelings.

What I thought was going to happen in a few weeks, ended up being tomorrow. I got a call this afternoon and there’s an open appointment tomorrow afternoon at my usual clinic, to get my first dose of Stelara via IV before we begin the self injections. So I guess a positive is I don’t have any time to over analyze, and stress myself out over it. I’m also done Prednisone on Wednesday, and was anxious about worsening symptoms, but not having to wait is nice.

I really didn’t think I’d need this switch so soon, I didn’t think I’d flare like I did. But this is all part of the whole autoimmune disease thing.

It’s weird being in a flare up, at the same time 5 years later, as when I was diagnosed and began this whole journey.

I am so incredibly thankful to those who had blogs before me, and helped me navigate what is so scary and isolating. Someone who had had this procedure, or been on these meds, could reach out and provide another voice. The amount of people I have talked to, who have made me cry, and helped move me forward, is incredible.