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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
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Not-So-Happy Anniversary

​ Today is the anniversary of the trauma that led to my eventual Crohn’s diagnosis. One year. It feels like three. Maybe that’s why I’m in a funk. My body remembers. 💔
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Butt Stuff is Overrated

Saw my doctor yesterday afternoon. He said he needed to see inside my colon. So I have a procedure this morning. Third time’s a charm? I wonder if I will be getting these every three months forever. This time is not a full colonoscopy. It is a flex sig. And I don’t have an upper scope like I had before. So the prep was easier, and hopefully it will be less painful post biopsies. I just hope he can see enough to understand what’s going on. Fingers crossed. I’m not super sure what he thinks he’s going to find that he didn’t see it before. I asked him about it a few times and he didn’t give me a very clear answer. I don’t know if it’s a language barrier or if he just doesn’t like to give him too much information. Or maybe he just doesn’t know. He’s pretty baffled by the fact that my body is not responding to the Humira. He said maybe it isn’t Crohn’s after all because Crohn’s should be responding. But he was so confident diagnosing it last time. I am super frustrated to be back at the dia
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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
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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, I’m now freak
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I Am Not Okay

I have had some incredibly low moments as of late. Lots of feeling defeated, very little hope for the future, just really low. I’ve been basically bedridden since November 3 (Just looked it up. Shoot. Two months solid. No wonder). Anyway, it’s fine. (My motto as of late: it’s fine. I’m fine. Everything’s fine! ) Derek has been amazing - seriously. He has done all of the Derek things and 95% of the Becca things, and he has been so loving and encouraging and guilt-dismissing the entire time. We’ve also had a couple holiday breaks in there which has helped. James had to quarantine from exposure for ten days which meant less early mornings, no soccer practice, and another potential helper at home. Hazel was sick and fevered for a bit so she stayed home from school as well. All of this eliminated some busy work and allowed me to stay in bed with a heating pad. Not the dream, obviously, but nice to be able to be down with less repercussions.  I have learned to lean more on my village, let pe
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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 medici
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