Turns Out I’m Special

​Gosh. So much has happened since I last posted. I was super sick for a few months there. Like suuuper sick. Christmas break was me on the recliner, drugged up with a heating pad. Even getting out of bed felt like a feat. Not my best for sure. I eventually called my doc about it, and he put me back on Prednisone. He figured that plus the new Humira injections would kick the Crohn’s to the curb.


At one point, I started to hope he was right. My stools started to be formed (there were plops, people!). He said that meant the Humira was working. So he had me taper off the Prednisone. This could be the magic cocktail we were looking for!


It wasn’t.


Since being off Prednisone, I have gotten progressively worse. I am now back to pooping straight water (really foul water) and hurting and feeling achy and awful. The doc ordered a blood test and a stool sample (fairly routine, unfortunately) and met with me yesterday. Things don’t look good. My Calprotectin levels are still really high, though my hemoglobin etc look good. Still, the Calprotectin levels should be significantly lower (they’re at 454 and shouldn’t be higher than 40 or something, if I remember right). And I should be feeling better.


So he’s putting me back on 30mg Prednisone, upping my Azathioprine to 100mg, and having me go to the lab today for blood work that should show why exactly my body isn’t responding to the meds as it should.


I asked him if this was typical- this back and forth. Apparently it’s not. Dr H said I’m only his second patient ever that hasn’t responded appropriately to meds. He said my Crohn’s is severe and mine is a tough case, but we will get to the bottom of this. I’ll meet with him - in person - next Monday. Fingers crossed.

Comments

  1. Missy W.February 23, 2022 at 8:00 PM

    So frustrating. One step forward, two back. Fingers crossed you get some more answers at this next meeting.
    Missy

    ReplyDelete

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