My parents have always wondered where my killer metabolism came from, but the reality is that I’ve probably had Crohn’s Disease for most of my life, but it didn’t begin to have a major impact on me until I reached my mid-20’s. I got sick often in high school with what felt like the GI flu and was quite fatigued, but the only thing checked was my blood count and thyroid function. My Mom was so apologetic when I finally was diagnosed with Crohn’s because she immediately made the connection between my difficulties as a teen, and the disease. Would my life have been any better had I been diagnosed back then? Probably not.
I’ve talked about my brother a couple of times, who also has IBD. He had a total colectomy when he was 37, and though the doctors assumed he has UC, it couldn’t be confirmed. His disease pattern also falls into the same grey area as mine. My theory is that we have both. My ileal disease is much worse, whereas his was considered backwash ileitis from the UC. My colonic disease skips areas, but the inflammation is superficial and confined to the top layer of the epithelium. Even though he no longer has his colon, he still struggles with all of the symptoms I do, and is quite anemic just like me.
The nausea is killing me right now. I want to eat, and I want to enjoy eating, but my appetite has been slain. I’ve had to take more reglan than I’m comfortable with to keep my stomach somewhat settled, and my tolerated food options are extremely restrictive, so I’ve started drinking nutritional shakes again. In spite of that, I’ve still lost just shy of 10 pounds in the past month. By the end of January, I actually reached my target weight for the first time since the tubes started going down themselves, and was praised and congratulated by my doctor. It felt pretty good, and it took A LOT of work to get there. If I did it once, I can do it again. I’m by no means underweight – I’m still in the healthy range, but if history has taught me one thing, it’s that I need reserves for when I do get really sick (like I am now).
I saw my GI practitioner today, and we went over labs that I had drawn this morning as well as the results from my ultrasound. My ESR and CRP have gone UP. That wasn’t supposed to happen. He also said it’s possible I have autoimmune hepatitis, but the labs for that were send outs and he won’t have those results until next week. Apparently the cysts aren’t anything to be concerned about right now, and it’s likely they’ll magically disappear when/if my liver enzymes normalize. I’m halving my Cimzia dose to one injection instead of two every month, and adding daily Imuran to it. I’m supposed to have labwork repeated in a month, then he said we’ll talk about doing an upper endoscopy/colonoscopy some time this spring to see how things look on the inside. Oh, fun! Even with the blood transfusions, I’m still iron deficient and anemic. Partially from the Crohn’s, and partially from the abnormal bleeding. It’s off to the hematologist for iron and vitamin infusions. I hope I get brown-eyes again…he’s so dreamy. 😍
As far as the nausea and stomach issues go? I’m back on Reglan 4x/day for the month. Gastroparesis is a tricky dick. I asked again about stopping protonix out of concern that it’s exacerbating my gastroparesis, but he just laughed at me and said “if you eat cooked food, it doesn’t need much acid to be digested”. I don’t know where he gets his information from, because I’ve read that hypochlorhydria can cause just as much damage as having too much acid. So many drugs! I’m an environmental hazard. My gas destroys the ozone, and my drugs kill the ocean critters.