The Medical Grid

Every time I give myself a Humira shot, I feel like I’m playing a drawn-out game of “Russian Roulette”. While the wasp sting burns my thigh, I wonder about the toll the immune-suppressing drugs are taking on my body. Will I die before I meet my grandchildren–not from Crohn’s, but from drug-induced lymphoma?

Before I started Humira in February of 2012, I was on Remicade for three years. Both drugs are TNF inhibitors and are used to suppress your immune system. They can cause deadly fungal, viral, and bacterial infections. Before you begin either drug, you have to have a tuberculosis (TB) test and a lung x-ray because both drugs can “activate” latent TB and kill you.

TNF inhibitors can also cause “often fatal” cancers. Even if you don’t have an autoimmune disease, you’ve probably heard the lymphoma warnings the narrator reads very quickly during the commercials where the woman holding her stomach circles around a string of endless bathrooms. When you go to your gastroenterologist to treat your Crohn’s disease, you don’t expect to trade the health of your bowels for a potentially deadly cancer.

How can that decision not make you pause and take a good, mental look around?

After my first surgery, my wonderful surgeon went on vacation while I was still in the hospital. I cheerfully waved him goodbye but wished I hadn’t the minute I met his replacement. This new surgeon believed that Tylenol was sufficient to treat post-laparotomy small bowel resection pain; and when he asked me if I take my medications, he made the sign of the cross over me and said, “God help you if you don’t.”

That is one moment in my Crohn’s career that I wish I could forget. When the bone and nerve pain sets in 24-48 hours after my Humira shot, I wonder if it’s not only “God help you if you don’t” but “God help you if you do”. These are the times that I dream of going “off the grid”. What would it be like to not take any medications or talk to any insensitive doctors? What would it be like to not have to answer humiliating questions or submit to even more humiliating exams? How long could I last med-free before I had to have another surgery?

And, more importantly, what if the stress of being sick was actually making me sick?

Inflammatory bowel disease is an unrelenting and unforgiving disease, but sometimes the treatments can be just as bad. Have you ever considered going off of the medical grid, even if only in your dreams? And if you have stopped your medications, how have you kept your disease in check? Do you also feel like you’re involved in a surreal game of “Russian Roulette”, or am I just being dramatic? I would love to hear your thoughts in the comments section below while my Humira pen warms up on the table beside me.

Remicade Infusion

Remicade Infusion

9 thoughts on “The Medical Grid

  1. I actually did do that after my last surgery. It was pretty much a strike. I stopped Remicade and Prednisone. I hate prednisone. I was doing good, but now I am suffering. And since I went on my rebellious streak, my doctor has given up on my tremendously.

  2. my remicade disclaimer: I went of remicade and developed antibodies – make sure if you ever go off grid that you force the doc to give you the test for them. there wasn’t one then and I almost died from serem sickness. scariest thing… ever.

  3. Beautifully stated and how I felt for my child when I questioned her GI about long term effects of these treatments. He replied there is no research when children become adults on the long term effects of these treatments.
    11 years ago that is why I started the foundation for Nutrition and Inflammmatory Bowel Diseases in Children, NIBD. Help us educate the medical community and change the way we first look at this disease.

  4. I think about this everyday. its funny how things work because I’ve been thinking about talking to my doctor about this is my next visit at the end of the month. Although I don’t take medication in shot form, I do take an immune suppressant drug. are these drugs meant to be taken for a long time? Its so confusing. Sometimes I feel all these drugs are whats causing all my symptoms seems like other parts of my body have stopped working and or shutting down. What is remission What is normal anymore I have no clue.

    • It is confusing. I’ve learned more from other patients and from getting 2nd, 3rd, and even 4th opinions. There is little consensus, it seems, among GIs regarding these medications (and what, exactly, constitutes remission) but I’ve always been told that if they do put you into remission that you’ll need to stay on them indefinitely to sustain that remission. I’ve prepared myself mentally for the long haul, although I have these dips in the road where I wonder if I’m doing the right thing. I guess I’ll never really know. It’s a sobering thought.

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