I guess a year and a half away from a medically targeted blog could mean so many things… or maybe just two things. That the blogger is doing really really well and doesn’t want to talk about having Crohn’s, or that the blogger is doing really really bad and doesn’t want to talk about having Crohn’s.
For me, it started out that I was doing really well. I visited my nutritionist, a SUPERHAPPYGALNAMEDJENNY. Jenny was very enthusiastic about helping people who can only eat air and water come to grips with their lot in life. I got a handle on the gluten free diet and honestly started to feel a little more like a healthy person. Lost a little weight, felt a little better, walked the dog. That lasted for about a month or so. Then, a year ago, in July, things started going… dark.
It started with joint pain. You know when you start working out again after a long stretch of time, and there’s that achy pain that goes through your joints the following day? Imagine that in every single joint in your body, every day, all day long, for no reason. If you look at your hand, there are three major bendy places in each finger, two or three in each toe… I never gave much thought to any of that… until moving my pinky toe actually caused me to flinch.
I guess on the upshot, I have a very sedentary job, so it really only hurt to move the mouse around. Other than that, I read… all. the. time. I managed to start and finish the entire Twilight series (and watch the movies) The Hunger Games series, and of course, the Fifty Shades of Grey series along with all of the FSOG spawns. Some of those were so bad, I actually felt worse for the author than for myself, which was what I was shooting for in the first place. So it was win win. I made it to Delaware to visit some friends, and luckily, they let me float around in their pool the entire time… very nice for the joints. I took a bunch of pain killers each night and hoped for the best. But it was pretty pathetic and sort of sad at the same time.
At the time, I was still on Remicade. (Note foreshadowing) I told the nurses that hooked me up about the joint situation and they gave me that smiley face chart that tells them the level of pain I was experiencing. I picked number six. Which is like a sad face trying to be a happy face.
As the Remicade was dripping through (it takes about 2 and a half hours) I could feel my joints loosening up. It was wild. Kind of like when I was in the hospital two years ago, begging the nurse to kill me. Whatever she injected into my tube was like some sort of magic juice. So after every Remicade appointment, I would dance myself out of the hospital, happy and thrilled with my new found flexibility.
But then 4 weeks later it started again. I would get the Remicade, feel fantastic, go home, and then 3 weeks later, the same thing happened. I would gradually become an invalid. It was a horrible, helpless feeling which went on for about 6 months. I wasn’t happy or fun to be around at the time. If you saw me during this time and I was just standing there, (or just sitting there), it’s because I couldn’t move.
Luckily, I have a stellar medical team who went to great lengths to figure out my problem… and figure it out they did. I was diagnosed with drug-induced lupus erythematosus last January, which thank God, is not permanent. The GI blamed it on Remicade and switched me over to Humira. Unfortunately, I was informed that I would probably get lupus again because that’s what happens with these kinds of drugs.
Humira wasn’t as fun as Remicade. There’s no turkey box, no nice nurses to talk to, no two hours of uninterrupted, brain depleting, televised crap for me to enjoy. Instead, it’s a spring loaded shot of medication straight into my stomach. At the time, I wondered why they had to spring load it. Either way, with the first shot of Humira, the joint pain started to go away. Hopefully, never to be seen again. That part was great. The not so great deal was that all Crohn’s symptoms, the fevers, the stomachaches, the nausea, the whole stinky gamut came back. I didn’t notice any instant relief of my Crohn’s with Humira. I will note though, that many of my friends with Crohn’s have a lot of success with Humira. That just proves what a weird bunch we all are, and how totally aggravating this disease can really be.
After I went on Humira, I visited with the GI doctor who wanted to immediately put me on steroids. We spoke. I reminded him of my problems with Predisone and Entocort. Long story short, I got put back on steroids (I know, right?) and surprise surprise! I had nothing but grief for the next six weeks. When I went back to the GI doctor, I was an unintentional 15 pounds lighter and feeling pretty awful. GI was unimpressed with this past round of steroids so I, slowly this time, weaned off and now I’m steroid free… again.
I’m going to end there in the interest of getting the rest of this story out in a timely manner. There are lots of exciting things coming for me to share, a death defying colonoscopy, a trip to the sweetest place on earth, and a very special episode of The Gimpy Colon Goes to Philadelphia! Stay tuned!
Cheers! and be well fellow Chronies