December 22 2017

Are you prepared for your biological drug to stop working?

When I started Remicade 3.5 years ago, I steeled myself for the possibility that any infusion might be the last. Easy enough in theory; you tell yourself it won’t matter, you have options, that every day on the meds is a unique and blessed opportunity.
What you don’t do, is actually prepare for the day the meds no longer are an option.
Although to be fair, I don’t truly know that Remicade isn’t an option; I don’t actually know much of anything right now.
I walked into my appointment on Friday and before I could even sit down, the nurses had me cornered, telling me no infusion would happen because I had an infection. They asked to see my belly button and explained that my PAC would be in soon to do an exam.
My GI arrived, too. They asked me all sorts of questions: did I have a fever? Chills? What kind of stuff was draining from my belly button and how much?
I can be honest and say…I wasn’t really sure what all I was being asked. I sort of became something outside myself.
The concern: to infuse or not to infuse.
If I do, in fact, have an “infection,” an intracutaneous-something, a pocket or an abscess, the meds could make it worse. If I don’t, well then I’m just playing a game of Risk with my antibodies and myself.
Both the PAC and the GI were insistent on my having an MRI. They actually ordered it STAT. I thought that was only something they glamorized in the movies, and on tv. They wanted me to have a specialized type, MR Enterography. It is a type of imaging used with contrast to get visuals of the small intestine.
The potential pocket is somewhere between the skin and my small bowel.
The Infusion team tried to move heaven and earth to get me seen on Friday. Insurance told them they would call me with an update; however, they didn’t give a timeframe. I live an hour+ away from the clinic and have no cell service at home. Essentially, I couldn’t go home and run the risk of not getting the call. Not to mention, if they were to schedule me, I wouldn’t be able to get there in a timely manner.
Red faced and overwhelmed, I walked myself to the end of the third-floor hallway and sat at the bay window, to wait. To wait, and cry.
I had to try and pull myself together.
One of the nurses found me and asked if I was okay. I tried to explain my predicament without sounding like a miserable burden. A few minutes later, another nurse and my PAC came out to get me. They told me to relax at my infusion chair; It was an incredible display of compassion that gave me a small semblance of dignity.
I had no idea that I would be waiting 7.5 hours.
At no fault to my team, the insurance company wouldn’t play ball. The best they could do was Monday.
This whole “ordeal,” might be a new beginning, but it’s the end too; one I’m not ready for.
I am supposed to be hydrating, but each sip of water burns with what-if’s. I don’t know how to turn my brain off and not stress about the unknown.
I keep going over every worst-case scenario. What if I need surgery? What if I have to spend Christmas in the hospital? What if the infection is really bad, and I knew all along? What if I have to stop taking Remicade? What if…what if…what if.
My sense of validation is being over shadowed by my tangible fear of what might be.
In addition, I didn’t get my infusion. I am tired, rundown, existing (it feels) to serve the never-ending headache. I look at my kids and I cry.
I know that it doesn’t matter what the results say, it’s what I do with them that matters.

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Posted December 22, 2017 by in category "Crohn's Disease


  1. By Invisibly Me (Post author) on

    I can only imagine what you’re going through right now. I think that sometimes our thoughts, because we’re ruminating on what-might-be and worries, can be the worst thing when we’re waiting for answers and a way forward. Doesn’t help that you didn’t have the infusion either! When do you anticipate hearing results, I noticed you said about Monday but that’s Christmas.. (I’m easily confused these days so sorry if I’ve misread this!) Sending a hug your way – Please be kind to yourself over the weekend, you have so much on your plate and I think you need a little breather to get some distance from it al.xx

    1. By omydaisy (Post author) on

      My posts are confusing, when I delay them. I plan on posting the continuation, but basically…it’s been a hell of a week. Failed MRI was Monday, almost but wrongly ordered CT was Tuesday, and actual CT Wednesday. The results seemed to confuse my team, but according to them I am fit to receive treatment this Tuesday, following Christmas.

  2. By doesitlikeagirl (Post author) on

    I’m pleased to read your update that you are getting your infusion after Xmas 🙂 I have a good idea what you must be going through; I remember once turning up for mine and being sent back home as I had a urine infection…I went into meltdown right there in the treatment room. I know what it’s like when you pin all your hopes on those sessions. I’m pleased to say I’m now healthy enough to have now stopped the infusions but again I was devastated when they told me I’d be stopping-silly really as it was for positive reasons. But I refused to believe that I’d be ok until I realised I was doing ok. I know it’s scary. But try not to worry about what might be. And don’t be hard on yourself. Best of luck x

  3. By melisssamaay (Post author) on

    Absolutely understand how you feel, I’m taking inflectra ( another name for remicade ) I have severe ulcerative colitis and I’m terrified it isn’t going to work and I will need surgery.


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