This post includes a lot of frank talk about physical illness, invasive surgery, poop, more poop, recovery, and feelings of anger, grief, and frustration regarding physical illness, so if that is something you shouldn’t read, be warned.

Oh sometimes everything hurts
From your bones to your fur
But you kick and you joke
And smile through it

Superchunk, “Everything Hurts”

Long time no write much, eh? As I got more active on Instagram, this fell away, but sometimes you just need an old school long form blog post to say everything.

I got sick last fall. Diverticulitis, which runs in the family. GI stuff at least does. Two weeks in-patient, two weeks home with a PICC line and self administered IV antibiotics. (We have so so many syringes filled with sterile saline. I don’t need them anymore but insurance paid for them and I refuse to throw them out. They live in a bin in our downstairs bathroom.) A follow up CT scan that was worse. Two more weeks in the hospital, only one of which I remember. The ICU (the week I mostly don’t remember). Three surgeries: draining the infected fluid from my abdomen, the bowel resection, the colostomy. (Also happily don’t remember any of that!) Waking up to know that you get to poop in a bag for the foreseeable future.

If a doctor calls your spouse at 6:30pm on a Friday because you have terrible cell service in your house and missed three calls, you’re probably terrifically sick.

Y’all, it was so fucking hard. It sucked. I was so damn sick and I felt awful all the time for the whole thing, from the Tuesday before Thanksgiving on – either sick, or in pain, or both, for weeks and weeks and weeks. I lost every pound I had ever wanted to and then some and 0/10, do not recommend this weight loss plan AT FUCKING ALL. Shed a few other bad habits in the hospital as well.

Intermission: my hospital stays, as wretched as they were, were made so much better by my care team. All the doctors and surgeons, but especially the nurses. Not to slight anybody but ALSO particularly Kimmie, Brian, Cally, Mikaela, Carly, and Jordan: y’all are fucking heroes. Cally, your girl Caitlyn Clark almost won a natty. I love all of you. 5 Bedtower 4eva.

Hospital food sucks less than you think when you’ve been on clear liquids for five weeks.

The hospital has shit cable but at least between Thanksgiving and New Year’s, you can mostly watch basketball and bowl games and Lifetime (but not Hallmark, UNC Hospitals’ cable doesn’t get Hallmark, WTF) Christmas movies while they feed you opioids and soft foods and popsicles and so fucking many IVs. There was one Christmas movie that I thought had a knock off Kelsey Grammer in it, and I learned from my sister days later: IT WAS KELSEY GRAMMER. When you’re stoned on pain meds, you aren’t sure. You’re not in pain, but also that might NOT be Kelsey Grammer. It was a pretty good bad movie. I watched it three times.

If you are as sick as I was, you want to be me: with exceptional health insurance given the American health care system, and a support system – a spouse, two parents, a sister, and two in laws, before you even get to your chosen family – who drops everything to sleep in your ICU room and answer your freaked out anesthesia doped up questions. My work-provided health insurance lead to me paying, out of pocket, for a month in the hospital and eight weeks of home health services, about $4000. It is not a small sum, but again in privilege, I had access to it. My bosses were and continue to be amazing about allowing me all the time I need to heal. But I also know what happens if you don’t have paid leave, and what my costs were before insurance, and trust me: I am fucking lucky. I am so goddamned fucking lucky.

I am the story that the people in charge sell you about how the American Healthcare system works. It works and worked and will work for me. I am an exception and I know it and I am grateful. All of this brought my privilege into sharp relief, and that’s a whole other blog post, but be aware that I know I am incredibly privileged.

There are parts I will never remember – the first few days in the ICU – and some I’ll never forget – the day they took the stitches out of my abdominal wound from surgery. 24 staples. They fed me 10mg of Oxy before, and one staple in they put Dilaudid in my IV because I was in such pain. It got better. They got the staples out, and four months later, I have a super cool really gnarly scar. It sucked hard that day, though. And you know? I understand opioid addictions now. I luckily, gratefully didn’t gain one – but I sure as shit could have in a different situation. Stuff that makes you Not Hurt that well – I understand. I escaped it. But I understand.

I’m better, physically, mostly. I still have an ostomy and I still hate everything about it except the part where it saved my life. I am good at living with it. I poop out my belly into a bag. I have a whole fucking lot of thoughts about my own shit. And I refuse to be discreet about it. I hate everything about my ostomy except that I am here, so I also love it, and will talk about my poop with whoever, whenever. Deal with it. It’s not embarrassing. It just is. Literally: everyone poops. Right now I just do it out a surgically created loop of intestine in my abdomen.

I’m really good at changing my appliance. It’s neat and quick and I only dripped poop on a nosy cat who opened the bathroom door once. Do I hate every minute of it, even when it’s neat and quick and you don’t have to chase down a cat with your shit on her tail? Fuck yes I hate every minute of it. It’s necessary. I loathe it. I would rather eat broccoli, and I despise broccoli. That’s how much I hate having an ostomy. I know it is necessary; for me, now; for so many others, now and in the future, forever. Eventually maybe for me, forever. I can admit its necessity and also STILL FUCKING HATE IT.

There’s lots of resources on the internet for people living with permanent ostomies. They’re great. I’ll link my favorites at the end of this post because I do have them. The ones who helped me get here, where I’m not angry or frustrated 24/7. But, for now, my ostomy isn’t permanent, and I’m glad about that. And when I was googling after surgery, there was no post that said, “This saved my life and also it sucks and I hate it”, and I wanted temporary ostomates – and permanent ones too, if they need it! – to know that sometimes it’s okay to be like, this sucks and I hate it. You can respect and be grateful for the medical procedures that saved your life – and those procedures can also suck, and you can hate them, and it doesn’t make you a bad person or a bad ostomate or both.

I could learn to live with it forever and down the road I might have to. I don’t want to, but my GI conditions don’t go away. But for now it’s temporary and I’m in the process of scheduling my takedown. I’ll be glad when it’s done.

Getting sick didn’t ruin my life – frankly, it probably made it better in the long run. But getting sick sure as shit ate up all my goddamned paid vacation. Another luxury, that I had it. I know that. But I had plans for 2023. We were going to spend ten days in Baltimore with my folks. (Now a long weekend, kind of.) We were going to do the Outer Banks with my in laws. (Nope, not at all.) We probably would have made plans to see L&J in Columbus for the tOSU / Maryland football game this fall. (A plane? After all of this? When COVID is still a thing even if you pretend it isn’t? Are you kidding me?) (Let’s be fair, we probably wouldn’t have flown to Columbus anyway because COVID, but I miss L&J so I would have THOUGHT about it.)

I’m almost four months out from surgery, five from when I went to the hospital the first time. I’m not even sure why I wrote this post. To say it out loud, maybe. I got sick. I had surgery. I have a colostomy bag. It was traumatic and miserable, and I am really, really glad that I am still here to be sad and angry and miserable and frustrated and grateful. I am in awe of people who live with ostomies permanently; they’re heroes and stronger than I can even comprehend for myself. I am trying to be kind to myself.

I got sick. I am still here.

If you want to know more about living with an ostomy, here’s some places I have read and also still read a lot:

United Ostomy Associations of America

Shield HealthCare’s Ostomy Life blog

And also a couple of Instas I follow that are really wonderful:

Krystal

Amber Maddison Davies

April Wilson

Molly