Old Crohn

My doctor didn’t come talk to me after my colonoscopy, and the report just listed moderate to severe “colitis” (which means general inflammation), so I was pretty clueless as to his thoughts and findings. Thankfully I had a follow up appointment just a few days out (Monday, Dec. 6). Pathology results (twelve biopsies again, ow) had come back along with blood test results and stool sample results, so it promised to be a pretty comprehensive appointment. Turns out it was.

I have Crohn’s disease. :(

I have damage/inflammation/ulcers in my stomach, my small intestine, and all through my large intestine (minus my rectum, again, thankfully). My pathology results plus the physical manifestations they could see (cobblestoning etc) led him to diagnose me officially and confidently with Crohn’s. 

Somehow it feels scarier and more serious now, but I have to remember that my body is not going to suddenly change just because they figured out what it is called. I do, however, have a whole new medicine regimen. He has me on Prednisone again for at least a time. I’m also still taking zinc, iron, vitamin D3, folate, and my old friend Citalopram. I’m also now taking (again) Azathioprine, which I don’t love, and I’m going to have to do injectable medicine from now on. A “biologic,” they’re called - probably Remicade or Humira. Hopefully it will be something I can inject myself every month. Otherwise I will have to go into the hospital for infusions. The doc (or his MA, really) is working with insurance to get something approved soon. Hopefully tomorrow. 

I’m really not doing well and so while I’m pretty terrified of the meds, I am desperate for respite, so the sooner the better. I know it might take weeks or months to work, but I’m hopeful. Sigh. Fingers crossed.

PS. My Calprotectin levels were at 481. They were in the 100s before (back when we were just started on this journey), so that’s not a good thing. But it helps with the diagnosis, I guess, so that’s good. Anyway, wanted to record that somewhere. Here works. 


Comments

  1. JBDecember 15, 2021 at 12:41 AM

    Sorry this is a trial you face, but I know your faith will pull you through the rough spots.

    ReplyDelete

Post a Comment

Popular posts from this blog

Coffee Grounds

Oh man. I’ve been sooooo much better the past few days. SO much better than I was for months. I know it’s all thanks to the Prednisone, but I don’t care. It’s been an enormous relief and has offered some desperately needed respite.  I was able to not only participate in but also help pull off Cora’s baptism. I was able to play card games with company. I went to a doctor’s appointment (kidney doc) in Safford today - AND to lunch - with no awful consequences! This is so big, you have no idea.  The only weird thing is that (tmi) my diarrhea has been black. Like black black. And like full of sediment.  Sort of sandy. I randomly thought to Google it (purely curious at that point), and I learned that this is typically indicative of an active bleed higher up in the digestive tract - maybe the esophagus/stomach/small intestine. They compared it to ground coffee grounds, and I was like, “Yes!” That described it perfectly - well, if coffee grounds are black as night! So, naturally,...
Read more

Decidedly Not Marshmallows

Apparently Crohn’s can give you ulcers in your nose - which hurt tons and give you ear- and headaches. I’m feeling incredibly sorry for myself and pretty pissed that not even my nose is safe. I frequently have like scab-boogers in this particular place (ick, sorry), and if I get them out, my nose bleeds. I’ve mentioned it to Derek but just figured the dry desert air was to blame (it’s been at least a year that this has been going on). Well, I put a scope in my nostril today to see that area and what was going on, and it looks undeniably like an ulcer. Googled it, and sure enough. Apparently they really were scabs; it’s now an ulcer, and it’s yet another Crohn’s thing. Somehow when I get sores in my mouth (another fun Crohn’s symptom) or now in my nose, the pain radiates down my neck, to my ear, behind my eyes, and to my head. Strange how something so small can be so debilitating. I put Oragel in there in hopes that it’d help. It does some. Every time I try to take care of my body - exe...
Read more

You Have Died of Dysentery

So here’s the deal. I’ve had GI issues (tmi: urgent, watery diarrhea that started out as intermittent then escalated to like 12xs by breakfast) and pretty intense abdominal pain since freaking Thanksgiving, but the doc here hasn’t been able to figure it out. **Edit to add:  I initially went in asking for thyroid blood work because I assumed I had something wrong there. I was experiencing overwhelming fatigue and brain fog and even had some strange neck strain and pain. These issues along with the gut problems could very well have indicated a thyroid issue. My doc ordered lots blood work and a stool sample and saw that my fecal Calprotectin levels were elevated not nothing else of particular note. When he told me about the Calprotectin, he explained that it indicated inflammation in my gut. I basically rolled my eyes and thought, “No duh. I’ve been pooping my brains out for months! Of course things are inflamed.” I was so convinced it was thyroid related at that point that I mostly ...
Read more