When Medication Fails

I fought trying biologics for a really, really long time. In the early days of my battle with ulcerative colitis, I’d done some research on the various medications. I stumbled across one resource that said you could develop anaphylactic shock two weeks after your infusion. Not exactly comforting.

Because of the scary things I’d read on the internet, I was determined to continue with my less invasive meds (lots of pills and some enemas!). It was less scary and less risky. And I did go into remission for a little while. Sadly, less than a year after going into remission, a flare began to rear it’s ugly head and I had to go on a round of steroids. So I did. My guts calmed down and I enjoyed nearly another year of remission.

And that’s when the you-know-what hit the fan.

I went on another round of steroids, but this time it didn’t help. Every time I began to taper off, the bleeding, pain, frequency and diarrhea came right back–and if possible, worse than before! My enemas and pills were no longer effective. I was going to have to try biologics. It was a scary time.

medication

I will never forget the day I first started my biologics. It was a fight getting my insurance to cover them, but thankfully, the nurse practitioner in my GI’s office helped us get it all settled. My husband and I sat in the examination room waiting for her to instruct us on how to use the self-injector pens. I cried. I felt like I had failed somehow… I was disappointed.

Some people do really well with pills, why was I not?

Despite my disappointment, I had a lot of hope in the biologics. After all, they were really powerful drugs and many people have success with them. So, a few months passed and things still weren’t getting better for me. The frustration and the disappointment were overwhelming at times. Why was it not working for me? I have several friends who do really, really well with this particular medication. Was it something I was doing wrong?

When I “failed” that biologic, we switched to a different injectable one. This was the one that my doctor wanted my on initially because it “has really good success with ulcerative colitis!” I was confident that this drug would be my saving grace. We waited several months. And then I started tapering off of the steroid again. The flare came back. Much worse than before and it even brought new problems with it. Crushed, I asked the nurse practitioner what was going on.

She explained that some people developed a steroid dependency. Their body gets used to being maintained. No. It can’t be! I can’t have this happen. There were other drugs on the market that I could have tried. Stronger ones. But I had been flaring for a year at that point and I was just ready to be done with it all.

I was tired of feeling like a lab rat.

I was tired of being disappointed time and again that the medications didn’t work. The miraculous medications that had helped so many. Was I the only one that the drugs weren’t helping? What was wrong with me?

I still don’t understand why the medications didn’t work for me. And I probably never will. I ended up having surgery to remove my colon and have a j-pouch constructed. So far, it’s been the best thing for me. Was it an easy decision to make? HECK NO! I had several meltdowns leading up to surgery. But for me, it was the best way to treat my disease. And thankfully, I’ve been in remission ever since.

When our bodies fail medication, it is a brutal blow. Often we’re left wondering “what next!?” I hope that one day we’ll never have to ask that question again. I hope that one day we’ll have a true cure. Scientists are doing some pretty incredible research. I have a lot of hope for the future of IBD.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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