So… I have ulcerative colitis (UC). It’s an Inflamatory Bowel Disease (IBD). People don’t often talk about IBDs because it’s not polite to discuss the symptoms in public. That’s unfortunate. I’d never even heard of ulcerative colitis, or any other type of IBD, before I was diagnosed. So here I am, discussing it in a very public place!!
I’ve had 3 flare ups since I was diagnosed about 3 or 4 years ago. No one knows what causes it and there’s no cure other than to cut out the offending piece of bowel. I’d rather not cut out important pieces of me, so I’ve been trying to get it under control in other ways. The current flare up started last August, almost a year ago now! My doctor and I had planned to get it under control in a few weeks. Hah!!
When the colitis is active, one tends to run to the bathroom often, in a ‘mad dash’ sort of way. We’re lucky to have 3 bathrooms in the house. The symptoms include quite painful cramping and loss of blood. It’s funny. I can deal with the pain (it only happens once in a while), but it’s the sight of blood where one is not supposed to see blood that bothers me the most. Hm. I thought I would be able to be more specific about the symptoms, but I can’t. I keep picturing people reading this and I get too embarrassed to provide details. I suppose these diseases will always be kept quiet for this reason!
Anyway, I’ve been on cortico-steroids since the flare up started. Steroids are not nice. Well, maybe they have some cool side effects, but mostly they’re nasty. The nice thing is that I have so much energy I don’t know what to do with myself. It’s probably why I’ve been working on my house, diligently and without pause, while the kids were in school. I’ve painted, wall papered, stripped baseboards, replaced lighting, re-wired phone lines, … the list is so long, it would take pages. So my sabbatical has actually been: Luisa working furiously to burn off all the energy she’s had due to the steroids. The other nice things about the steroids: gives you a healthy glow, stronger fingernails, and thicker hair. The bad thing about steroids: waking up at 4 or 5 am, easily bruised legs and arms, extra facial hair, more susceptible to sun burns, weaker bones, blurred vision, adrenal gland shuts down and your face shape changes (wider jowls). Funny, my doctor insists that the type of steroids I take do not have that many side effects. He can’t seem to believe me when I tell him what it’s like for me. I guess I’m just sensitive to them.
At present time, I’m coming off the steroids. (I’ve come off them 3 times before, but have had to go on them again since the symptoms would worsen.) I’m suffering from withdrawal. So as I type this, I have a headache. I’ve also been exhausted all day. One has to come off the steroids very slowly. At present, I take them only every third day. So about 6 or 7 hours before I’m due for my “fix”, I get a headache. No amount of over-the-counter pain killers will make my withdrawal headaches go away.
I’ve recently started taking another drug that my doctor tells me his patients prefer to the steroids. It’s an autoimmune suppressing drug. I looked up the side effects: carcinogenic, mutogenic, blah, blah… “Hey Reid, this drug turns me into a mutant!! I’m gonna sprout a 3rd eye!” I was upset at first, but then I realized that practically everything out there is carcinogenic these days. The drug’s been in use since the 50’s so I’m not going to worry about it. We’ve tried everything else – it’s time to try this. (Yes, I’ve done the naturopath thing. It made me worse!)
It’s funny, though. Although it’s a difficult disease to deal with, I’ve never missed a day of work because of it (other than for doctor appointments). Yes, this disease has affected my life greatly. There are things I can no longer do. But you know, I’m very thankful it’s not something worse. It’s also made me think about what’s most important to me: my family and time for myself.
And now you know why I took a year off work!