In Limbo

Hey everyone!

I know I haven't been posting much. I've been really sick since about 2012, but it took a steep turn this past May/June, with Crohn's disease. Don't get me wrong. I've always had Crohn's disease (not that I knew it), but this past 5-6 months has been killer.

I've been on the brink of a bowel obstruction for over a year now. I've had multiple CT scans and emergency room visits. I have four medicines, currently, to try to regulate my bowels, but they're not quite working properly, because the problem is inflammation in my ileum (part of small intestine). So, on days like today, I feel like my intestines are balloons about to pop, and I take the max dose of all of my meds, hoping for relief. And today, it worked, so I can go to bed, instead of going to the ER.

The road to diagnosis was long and painful, and included three abdominal surgeries. My symptoms always seemed like severe endometriosis (which several of my friends suffer from), but I never had severe endo. In all three of my abdominal surgeries, the doctors removed "extensive" inflammation and adhesions from around the outside of my intestines. I suffer from a rare disease called "diffuse Crohn's" or, medically, jejunoileitis.

Now, you may be thinking, what is rare? Well, approximately 565,000 (or, now 565,001?) people in the US have Crohn's, so that is 0.17% of the population of the US (321,000,000). Then, 5% of people with Crohn's disease have jejunoileitis, or about 28,500 people, which is 0.0088% of the population.

Let me add, to the boring stuff, that psoriasis, a related disease, runs in my family. Psoriasis, if you look it up, or click here, is pretty easy to understand. Essentially I have psoriasis throughout all of my small intestine. Literally.

Ok, so the good news is immunosuppressants like Humira worked. I've only tried Humira, and it made me so dizzy that I couldn't get out of bed, but it worked for a lot of other issues, like inflammation. So, I find out on Nov 19th which drug I'll be using next. Hopefully that one won't have such severe side effects.

Until then, I feel pretty boring. I'm catching up on TV and video games. Although, now that my vitamins are working, I can read grad school stuff occasionally. But on days like today, my only friend is my bed.