You Can Wish in One Hand…

…And Shit…in a Bag? I’ve Decided to Get a Colostomy

I made a big decision the other day:

I’ve officially decided I’m going to get a colostomy.

After I made this decision, my next first move was to text my doctor, tell her my choice, and ask her if she would send me a referral for a surgeon in Duluth. She didn’t question me, or give me unsolicited advice (Hint hint. However, I will be graciously accepting your love and support. And, if you have a colostomy, please share tips and tricks!) She just wrote back with some names, and I’m now doing my research.

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Shitting is kind of a big deal. Everybody poops, right?

It’s something we do every day, something that — when you’re healthy and able-bodied — you probably do multiple times a day. But for me, I don’t just get on the toilet and take a shit. It’s a whole thing. I have gone through different “bowel programs” over the last 12 years and none of them have felt comfortable or sustainable…EVER. I have spent hours upon hours, probably weeks or months of my life in total, on the fucking toilet. I’ve felt a loss of not just time, but dignity, independence, not to mention comfort and consistency.

And that’s just the thing, it’s a bowel program. It’s not just going to the bathroom, it’s a whole routine with different steps, and tools, and supplies, and it takes up A LOT of time. It’s gotten to the point where the pain from stage 4 hemorrhoids is now affecting different parts of my body. I’m sweating every time I start my bowel program, my heart rate goes up, my blood pressure rises — all potentially dangerous and uncomfortable symptoms of autonomic dyreflexia — it’s a stressful, anxiety-ridden experience, sometimes including blood, sweat and tears. I spend the rest of my day wondering how my body is doing, if I’m drinking enough water, if I’m eating the right food, how much pain I’m in, or why I am still fucking sweating, and how tomorrow is going to go when I have to get on the toilet again. I’ve now come to realize that some of the nerve pain I’ve been experiencing in my groin area, is because of the pain from my stage 4 hemorrhoids, exacerbated by stress.

I know this is a big decision, and it’s something I’ve thought about for over a year now. I’ve followed other people on Instagram and witnessed their transformation, I’ve asked other people like me what their experience getting a colostomy has been like. I’ve asked them about the hardest things and the best things. So far, the pros outweigh the cons. All of the thinking and recon that I’ve done has led me to my answer:

Yes, it’s time to get a colostomy.

Yes, this will improve my quality of life.

Yes, I will have more time.

Less anxiety. Less stress.

More time. More time. More time.

Am I scared?

Absolutely. I’m scared of altering my body. Again. I’m scared of how it will affect me emotionally to have my shit coming out of a different part of my body — in plain sight. It’s strange to think that I’ll have a stoma for #1 and #2, right there on my stomach. I’m used to catheterizing through a hole in my stomach, though, it’s been over 10 years. And that was something that I was looking forward to, big time. Peeing wasn’t such a big deal, it was liberating. I didn’t have a tube coming out of my urethra anymore, I could wear whatever I wanted, and I was more independent. Plus, pee just isn’t as gross, I mean, for real.

But this is a bigger hole, for obvious reasons, with something attached to my body to collect my shit, which I then detach, dispose of, clean my bod, and put a new bag on. It’s a new routine, it’s a new reality, and it’s gonna be weird. I’m sure there will be new tears. Tears for change and adaptation. Tears for the recalibration of my self-love, my confidence, and my sensual self as an ostomy owner. Tears for the effort it takes to convince myself that I’m still sexy and worthy, and to convince the world the same. And tears to realize that I don’t need to convince the world, that’s not my job.

I’ll do everything I can to be prepared for this, but there are some things I just can’t prepare for, and I have to surrender to that. I’m going to let myself surrender to feeling everything, because this is big.

Sometimes my disability feels bigger than me.

But then, I breathe, and I remember that as hard as this will be, I’m doing it. Because I believe it will be worth it. I’m doing it because I believe it will make me feel more free. I believe that, when all is said and done, and I’ve adjusted to this new lifestyle with a colostomy, I will feel like a weight has been lifted because of it. I hold onto that hope, and I remind myself that grace is mine — and to never to underestimate myself — and I know that I can do it.

I told my caregiver, Orah, the other day that I had officially made the choice, I was going to follow through with it. I think she was the first person I told. Then all she said was, “Well, I’m here for you.”

And I just smiled and said, “Thank you.”