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Prednisone: My Dance with the Devil

Who has been prednisone before? I had heard of it at my support group and from my GI doctor as a last resort option if all medications fail. Well, I wish it upon NO ONE! Let me tell you about my experience with my dance with the devil. When I was pregnant with our second child, Alice, I felt so amazing that stupidly, I went off all my medications. This is a cardinal sin. Never go off your meds! I believe my thinking was that here I was supposed to be nurturing this little being inside me, and if I'm feeling so great, why do I need to be on anything additional? I will go into detail about having Crohn's disease and pregnancy in another blog post. There I was feeling great, expecting another girl and medication free. About two months after Alice was born, I quickly derailed into the worst flare of my life. It got to the point where I was just going blood all day......and all night. Those few first months of life with a newborn are difficult anyways, but throw a mega flare into the mix, you better buckle up! Obviously, I went back on all of my medications. Unfortunately, this time, my disease had progressed, so nothing worked. My colonoscopy revealed very active inflammation/ulcers on my colon and labs showed a very high calprotectin level. My doctor decided to put me on prednisone. I normally put up a fight and try to wiggle out of things I don't want to do, but this was life or death kind of thing. Best case scenario, the drugs kick in, quell symptoms, and you remain on it short time. Prednisone isn't meant to be taken long term. The reason being, there are so many unpleasant side effects. I don't need to bore you, but just google it sometime. I seemed to experience every nasty one from "moon face (extreme facial swelling)," hair loss, weight gain, high anxiety and paranoia. Those are just a few, but the main ones that stand out. Enduring these side effects, along with continuing to nurse (while pumping so she wasn't exposed to any of the drug) our almost three month old, proved almost more than I could handle. After four long and brutal months on prednisone, my body gave up. I woke up one morning (or should I say got out of bed after being up all night), and with a gaunt and gray face told my husband I needed to call my doctor. He ordered a hospitalization and blast of prednisone through IV. I thought I was paranoid before that, but this was a whole new level of drugs messing with my system. I joked and said at least maybe I can get a goodnight sleep being away from the girls. Boy, was I wrong. I couldn't even see straight and was asking Ryan the same questions over and over......and over again. Man, has he put up with a lot. This IV blast was our last ditch effort to squash this flare. The discussion of being put on Humira was already in play. This was another battle I wanted to fight, but know I would have to trust my doctor. Miraculously, after my hospital stay, my body bounced back and my flare went away. I was able to stay on my current medications, go off prednisone, and avoid Humira. I thank my lucky stars and keep praying. I know how lucky I am to have beat that flare, but also am not naive to the fact that it could happen again, and maybe on a much more grandiose scale. My sage advice in all of this is, STAY ON YOUR MEDICATION!!! Do not try to be bigger than the meds. Manage your disease, but try and not let it control you. Have you ever had to take prednisone? I want to hear your story.

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