Out of the (now more than) ONE FUCKING THOUSAND blog posts I've written (didn't think I'd let that go already, did you?), I have only mentioned my ulcerative colitis six times. Partially because I've mostly been in remission since before I started blogging, partially because talking about it isn't easy for me. I almost never mention it in real life, except with family.
But I've started flaring again. For those of you fortunate enough to have no idea what I'm talking about, I'll summarize; ulcerative colitis is an autoimmune disease wherein your body starts attacking your colon. It is an Inflammatory Bowel Disease and the only cure is removal of the diseased part of the colon. Which is the last resort, because, you know, the colon is kind of important. Anyway, when the disease flares, well, there can be pain. Lots of pain. There will be diarrhea. There can be blood. Lots of blood. There can be urgency - "shitting your pants" is not a euphemism for a person who is flaring. If the flare is really bad, you can develop joint pain, as if you have arthritis.
Most people with ulcerative colitis have to take medications all the time to help them stay in remission, as well as taking extra medications when the disease flares. But I'm an asshole, so I stopped taking my maintenance drugs when I first got pregnant with Ironflower. I had a tiny flare after I had Lovebug, but that was very specifically stress-related and quickly cured with a low dose of prednisone. Since then, I've been in a drug-free remission.
So not only am I an asshole, I'm a lucky bitch. Probably the two are related, at least as they have to do with me and my colitis. Everyone's disease is different (autoimmune diseases are such motherfuckers), but for me, I consider it a flare when there's blood and there's a certain kind of pain. Without that pain and the blood, I just assume I've eaten something that disagreed with me. Which is usually the case.
Hot Guy would probably like me to point out that a lot of things have been disagreeing with me lately, but I've always gone through phases like that. It's just that this phase happened to turn into a flare on Saturday. The 3 other times I've flared (see? I told you I'm a lucky bitch - 4 times in 17 years is remarkably few flares), it's come on gradually. This time I was fine Saturday morning, but by Saturday night I had fainted from blood loss.
It's not an experience I'd recommend.
Oddly, I am doing so much better already. I say 'oddly' because I haven't taken any medication. I don't have GI doctor in New Jersey - though after my fainting spell Saturday I was considering calling my uncle the next day, to ask him to call in a prescription for me. But I didn't, because things started to get better. I mean, I still plan to find a GI doc and be responsible about this damn disease, but it's no longer dire.
When the flare hit, I turned to the internet. As one does. It wasn't so much that I'd forgotten the vital facts of my disease, but I had forgotten how to live with it. There was a big debate in one forum I was reading (forums probably saved my life when I first flared at the dawn of the internet in 1996) about these various diets that people were using to control their symptoms. I tried versions of them back in the day - going gluten-free, for example, had actually made my symptoms worse, and that was when I was taking about 30 pills a day to get better. Going dairy-free, another big recommendation, had also made things worse for me. But it wasn't the diet recommendations (which have no scientific research backing them and are not recommended by the Crohn's and Colitis Foundation) themselves, it was that I had totally forgotten about all of my dietary triggers. I don't think there's one diet that helps everyone with IBD, but I do think foods can trigger, or exacerbate, our problems.
And I've been eating all of those foods for a few years now. And they've been "disagreeing" with me, but I guess since I didn't pay attention they've decided to beat the crap out of me. Or something. Plus, I've not been meditating. I really shouldn't have been so freaking surprised on Saturday.
I'm not sure why I'm telling you all this, except that if you too suffer from an autoimmune disease, don't be an asshole. Take care of yourself - take your medications, do your yoga or your meditation or your binge-watching of Breaking Bad. Don't let disagreements turn into brawls. You are worth it. For me, part of self-care is writing about topics that are personal. That probably make lousy blog post topics, but that mean a lot to me.
2 comments:
So very sorry to hear that! I have a couple of auto-immune fun-time things going on, and my daughter has arthritis. So we feel your pain -- just perhaps not as acutely right now. :(
Kristin - I've been so much worse, so I'm trying to keep it in perspective. I really wish no one had any idea what I was talking about - autoimmune stuff is the worst. Take good care of yourself and your daughter!
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