July 2 2017

Swing and a miss

It has been quite a week.
I should probably mention results from last week’s blood test came back; cortisol levels are high, but within “normal” range. Swing and a miss. Also, can I tangent and say how frustrating it is to be waiting on potentially life-changing information and not get a phone call? Everyone is cooing over the digital age, but what insanity is this world becoming? I got an email (an email!) that a lab chart had been updated in my online medical account. No real explanation as to what my levels meant, just an email that new labs were in. Cool. Gone are the days of bedside manner, I suppose.
I got my cortisol results Monday or Tuesday but had treatment on Friday. I can pretty much say I knew what was coming: test time. Test time and more new pills. Thankfully no CT to schedule, just a colonoscopy (which, I would do twice a month to avoid having a CT scan… barium is no joke).
The request to go back on Prednisone, as it seemed to be the most helpful thing lately, was circumvented. They want to try Entocort (again) or another new drug that I cannot recall the name of. First though, they need to track the progress of my insides. I have always had lower GI-ileum issues, but my last scan showed upper GI inflammation. Not much, but enough that made my then flair make sense. PA wants a full road map before she determines a new course of action. As for fissure…well that seems to be a non-starter. PA wants me to continue (re-start) taking the cholestyramine (bile binder) and add in 1-2 Lomotil pills (used for diarrhea), up to 8 a day. Basically, they said that until I get the bile under control, there is truly nothing they can do to help.
Yay! For me that means constant pain and backwards pads to contain the “leakage.”
At treatment, they were able to get the IV hooked on the first attempt, but got no blood return. After a three-hour infusion I had to walk across the building to the lab and get blood work done; they wanted to check my CRP levels after the round of steroids and increased Remicade dosage. Why they couldn’t check that last week when I had to make a special trip in for blood work, I don’t know.
It isn’t that I am ungrateful or determined to be unhappy, but sometimes I just want to scream. After treatment I get pretty tired but this weekend we had house guests. I was able to nap but I wanted to spend time with my visiting family. We sat around a board game and it was like I was playing from somewhere else; the entire exchange felt forced. It was like I couldn’t get out of my own head long enough to appreciate the little things, the laughter, the smiles, the genuine conversation.
You might not know this, but sometimes I have no idea what is going on. Like muscle memory, I am keenly aware that some motions, tasks, and conversations are effortless and thus, the only way I survive.

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Posted July 2, 2017 by in category "Crohn's Disease


  1. By Kara (Post author) on

    It is SO frustrating when nothing works the way it’s supposed to. It’s frustrating for doctors, too. When they start running the opposite direction when they see you, you know you’re in trouble. 😉
    I don’t know about you but for me, being sick causes some pretty severe depression from time to time. I’ve resisted that sort of help because prior to diagnosis, the evil collective was trying to tell me I had an eating disorder and/or anxiety/depression (without even doing any tests). That reinforced the idea that I should keep the two separate and not even mention it but it really does decrease quality of life if it isn’t addressed. Stress makes Crohn’s and its symptoms worse, even if some doctors don’t believe the two are related. Therapy helped me in the past and when that alone doesn’t work, I’ll take antidepressants for a short time to get ‘over the hump’.
    I suppose what I’m trying to say is, getting emotional support from someone outside of your normal social circle is important. I hope you find that magical rx combo that gets you to the point that you feel a bit better, and soon! <3

  2. By tiredmindtypingfingers (Post author) on

    I hope you feel better! I know with chronic illness that phrase may sound futile, though. Love your blog! It’s really relatable.

    1. By omydaisy (Post author) on

      Thank you! It truly does help.
      I never thought I would feel this way after talking about my experiences. I spent so much time ashamed and afraid that I kept everything bottled up. This blog has been such a game changer for my life.


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