The first time my ulcerative colitis flared, I was finishing grad school and planning to move to a new state. I didn’t want to move, didn’t want to do all my ex wanted me to do, but was too afraid to stand up for myself over anything. I ignored the flare for a long time, resulting in the need for months of steroids and immunosuppressants. Not to mention the pain, just about living in the bathroom and the consequences when I didn’t live in the bathroom.
I didn’t even know what ulcerative colitis was (an autoimmune disease where your body attacks your colon, similar to Crohn’s Disease) when I was first diagnosed. But taking care of my disease – of me, really – finally gave me the nerve to stand up to my ex.
Since then, my colitis has been remarkably mild. It’s flared a few times, but not like before. Every time it flares, or even starts to flare, I take it as a sign. It’s my body telling me something is very, very wrong and that I need to face it and deal with it. It’s also telling me to take some prednisone, but that’s a small price to pay.
So anyway, I’ve been trying to just actually DEAL with my feelings instead of ignoring them, as well as try to take care of myself sometimes ever since this disease hit me 15 years ago. And it’s been working. I take no maintenance drugs, monitor my eating only a bit and spend a lot of time writing. But I still always feel like the threat is there. Like if I fuck up badly enough, I’m gonna flare.
Lately I’ve been trying to pull myself out of this situational depression. When I got a horrible case of strep and a sinus infection last week, I wanted to crawl into my bed and not come out. When I finally got on antibiotics and read the warnings on the label, they included: “May cause colitis for up to several weeks or months after ingestion.” Okay, I thought, this is it. I checked my prednisone stash. I put all my new magazines in the bathroom. I wrote out the kids’ schedule so it would be easier to find helpers for all the driving.
And…I’m not flaring. I’ve had a few issues (sorry, I’m trying not to be graphic, though that’s pretty difficult when discussing colitis) but no pain, no dire emergencies, no hours in the bathroom. I AM OKAY.
My butt is totally flinging glitter right now.
What an inspiring story! Amazing what writing, creative outlets, and speaking one’s truth can do for the immune system.
Aw, yeah, fling that butt glitter! As a former sufferer from IBS, I can totes empathize with the joy that comes from no flares. So hurray!
From a fellow colitis/Crohn’s sufferer (I have “indeterminate inflammatory bowel disease) I get it. And yay for colon glitter!!!
Woot! AWESOME post, lady! 😀
“Every time it flares, or even starts to flare, I take it as a sign. It’s my body telling me something is very, very wrong and that I need to face it and deal with it.”
This really struck me: I think it’s probably safe to say that I could take the same approach with my IBS. Thank you for helping me be more aware!
My dad was diagnosed with Crohn’s disease after perforating a bowel when I was three years old. Needless to say, I think butt glitter is VASTLY underrated!
P.S. Do you do anything with the Crohn’s and Colitis Foundation? We do their yearly walks and go to a few events. It’s always fun (and sad, to see the little kids with feeding tubes,) to meet people who can relate! And who also think butt glitter is of the utmost importance 🙂
I have microscopic colitis and totally feel your pain. It sucks. Even my kid says “mom, why can’t you just have a normal poop?” Um, sorry, I’ll try harder next time…..lol.
Wow, could I ever relate to this post.. I’m always amazed how stress affects the flare-ups.. for me it’s meant taking a whole lot more in stride, and relaxing about a lot of shit (haha) because there’s not much I can go through that’s worse than bleeding out my ass.
I’m happy to hear you’re keeping an eye out for the signs, and that you’ve been able to maintain with minimal inconvenience. I went med-free about four-five years ago, and it’s been great.
If I didn’t love the Band before, I would love it now – where else can you get cheers for butt glitter? I haven’t done much with the CCFA lately, but I will have to look into the walks. That would be great with my kids. Thanks for all the support!
s a fellow longtime IBD sufferer, i totally get this & like you, have learned to listen to my intestines (i mean body)(no, i mean intestines).
it has always been at it’s worst when i’m in the most emotional pain (knowing that i had to leave my first husband, knowing that i had to leave a job that i hated).
if my head/heart won’t be honest, my colon will.
fling that glitter, girl.