Did you notice there was a little gap in my blogging? You know, little, as in a year...... ya, well life sort of happened. Crohn's sort of happened. I was sick most of 2014 because they couldn't get me on any meds. I was only on methotrexate and they weren't putting me back of steroids because of the whole myopathy, pitting edema thing. I had been on all the approved suppressants and there was nothing left for me to take. Except Stelara, and it wasn't approved for Crohn's. It still isn't. It's also $14,000 a dose.
It's free if you can get on a study, and I go to mayo clinic, where the studies are being conducted, but I have a history of Disseminated Histoplasmosois, so they declined me for the study. Eventually though Johnson and Johnson allowed me to be in a financial program, and now they are giving me the drug for free. It's working, sort of? It's always so hard to tell. I have strictures and lots of damage so the diarrhea thing is probably permanent and I still have pain, but there are no areas of active Crohn's showing up in scopes or in my MRIs. I'm planning on my first surgery in June, I'm a little scared but they said it should go fine and the strictures will be removed so hopefully that will take care of the pain for a while. I also have to take the Itraconazole at 1/2 dose to help prevent any reoccurrence of the histo.
My house flooded last fall - for realz - it rained indoors! I blogged about it here: It Rained In My House I don't talk much about my Crohn's on that blog, so there's a lot I didn't tell. Like how it really stressed me out. How we were forced to live in a hotel for two and half months. How the stress and eating out all the time REALLY flared the Crohn's. We moved back home sooner then we were supposed to and I lived in my basement, just to try and get the Crohn's calmed down.
Anyways, I was in too much pain and to sick to do anything with my furniture. I didn't want to cook because everything made me sick. I ate lots of jello, but nothing fancy. Lots of soft foods like pancakes, noodles, and mashed potatoes. But I didn't do nothing. I do have "sick" time hobbies. I'll post a few things I got done and maybe some house updates in the next few posts.
It will happen,