Last week I went to meet with my gastroenterologist, who suggested I spend more of my time blogging and vlogging about my life with Crohns.
Though it’s really more like MY LIFE f. Crohns.
Because as I told a friend of mine, I’m not defined by my defective small intestine. It’s part of my life, but not just who I am.
So here’s the recap: A few years ago I ended up in the hospital with ridiculously low iron readings, in need of a transfusion. While there, I finally got some health care professionals that listened to my symptoms and met my GI. (I’d been arguing on and off for an entire year between two doctors who thought that I needed to eat more, and refused to run any tests beyond taking blood to check for anemia. One of my doctors was convinced I had an eating disorder)
I was put on budesonide (that’s the generic name for Entocort), a delayed release steroid. And it worked pretty well. I had to go on a course of liquid iron to help stem the anemia (turns out when your small intestine gets inflamed, you don’t absorb a lot of nutrients – but especially not iron).
But the last few months have been a little rough. I’d been having small flare-ups here and there. Mostly cramps, very low level fevers. Nothing like the flare-ups that sent me to the hospital. But it’s been dragging me down, when every third week I’m curled up in bed with cramps.
So at this last GI appointment, my doctor informed me that the budesonide clearly stopped working. So we’re trying out a new medicine. This one is an NSAID, but it’s made for ulcerative colitis, but has been proven to work for Crohns, too.
So I’m in the two weeks between appointments, waiting for it to really kick in.
If you wondered what life in the earlyish stages of a disease like mine, that’s what it is. A lot of doctor’s trips, trying out new medicines, waiting for the new medicines to work, and then more doctors trips.
Oh, and a lot of labs.
I’m trying to be positive about all of this. But I broke down in his office, crying. He assured me I didn’t need to be worried. But I told him about my belief I might have depression. I’m not sure if it’s on its own, if it’s linked to this. My health is a tangled knot of yarn, and I have no idea how many pieces are actually in that tangle.
It’s just a lot. I know I’m nowhere near needing surgeries or anything like that. But still, I’ve been tired and achey for the last couple of months. And that wears down your spirit.
And that isn’t even tackling the very real fact that there is no cure from Crohns. I have a lifetime of this ahead of me- and what I’m going through now is the tame end of it.