It's All About the Poop

She had a tube down her throat and couldn't talk, and one of the most important things she needed to communicate to me was whether or not she had pooped. So we made it the easiest signal in the system. One thumb. Up. Done. Move on with our day.

I want to talk about this because nobody else will, and if you are deep in a long caregiving stretch, I promise you are about to spend more of your life thinking about another human being's bowels than you ever thought possible. You will track it. You will plan around it. You will rearrange your house, your car, your week, and eventually your vehicle of choice around it.

This is the chapter nobody writes. No sugar coating.

The ICU days

Lonna's digestive system was always sensitive. Her digestive system on a liquid diet, ten days of vent, fifteen days of ICU, and roughly four dozen medications was something else entirely.

The lungs were a few days old. Every cleanup was a potential desaturation event. Every cleanup involved moving her, repositioning her — and she had bilateral chest tubes, a femoral line, an arterial line, a central line, a feeding tube, and lungs that were brand new. The alarms would go off. The nurses would come. We'd start over.

This is when I learned the thing nobody told me before transplant: the lungs are the headline. The gut writes the rest of the story.

Home, with a tube

We came home with a GJ tube in her belly. For the next three months, Lonna had no food or water by mouth. Nothing. Everything she ate was a beige formula in a bag, gravity-fed through a port that I learned to clean, flush, and troubleshoot. The same port handled her medications, which had to be crushed, dissolved, and pushed in by syringe.

You'd think no food in means no poop out. You would be wrong.

The body still produces. The gut still moves. Things still come out the normal way. And someone — me — still had to manage it. Tube fed does not mean low maintenance. It means a different maintenance, on a different schedule, with different supplies, and a different kind of mess. I got pretty good at it. You don't get a choice.

What it actually looked like

After the second surgery — fundoplication, hiatal hernia repair, GJ tube out — Lonna started eating by mouth again. The lungs were a miracle. The gut was not.

It wasn't twice a day. Sometimes it was twice an hour.

She couldn't control it. She often couldn't predict it. There was no warning system her body could give her in time, and there were no medications that fixed it. We tried a lot of things. None of them gave her what she actually wanted — the ability to be in public without calculating the distance to the nearest bathroom every single minute of the day.

So we built a kit. Pads. Then pull-ups. Then better pull-ups. Wipes — the good ones, in the resealable packs, because the cheap ones tear and leave you in a worse position than you started. Kitchen garbage bags. Spare clothes — hers and sometimes mine. A change of shoes more than once. We stocked the car. We stocked her purse. We stocked our condo near the front door so we could grab and go on the way to an appointment.

You can only imagine. And then you have to understand that it was probably worse than what you're imagining.

The geography of a life

Poop becomes geography. Every outing reorganizes itself around two questions: Can I make it from the car? Where is the closest bathroom?

You stop going to certain restaurants not because of the food but because of the bathroom layout. You favor places where the restrooms are near the entrance, not at the back through three turns and a flight of stairs. You learn which gas stations on the route to Houston have clean stalls. You learn which doctors' offices have a bathroom in the suite versus down the hall and around the corner. You time grocery runs. You time movies. You time visits to friends.

The world shrinks to a map of accessible toilets.

For me, this was logistics. For Lonna, this was a dignity problem. She was a dental hygienist for decades — the best I've ever been to in my life. And now her day was governed by the question of whether she could make it across a parking lot.

We were not always going to make it. So we got fast.

There was one time she'd been gone too long. I poked my head into the women's bathroom and called for her. No answer the way I needed to hear it. The stall was locked. She was on the toilet and couldn't get up, couldn't reach the lock from where she was. So I crawled under the door. Got her up. And before I unlocked the stall and walked us out, I gave her a hug. Don't forget to hug.

And then there was the second problem, which is the one nobody warns you about. Once Lonna was down on a toilet, she often couldn't get back up. Her legs were too weak. Her arms were too weak. Whatever reserve she had been running on was spent on the trip to the stall. So I'd be in there with her, working out the angles to lift my wife back to standing without hurting either of us. Stall walls don't help. There's nowhere to brace. You learn.

I want to be very clear: this was harder on her than it was on me. By a lot. I'm the one writing the article. She's the one who lived inside the body.

The Sprinter van

We bought a Mercedes Sprinter van — a Grech conversion — partly because we wanted to do van trips. But also, honestly, because it had a bathroom on board.

A bathroom on board changes things. We could go to the lake. We could drive to Colorado. We could pull over on a Texas highway in July and Lonna had her own bathroom, five feet behind the driver's seat, climate-controlled, private, hers. We took it to football games. We took it to vineyards. We took it to friends' houses. We parked it in lots where other people were tailgating with coolers, and we were tailgating with a flushable toilet and a wife who could relax for the first time in years.

Even so, sometimes that wasn't close enough.

We bought a Sprinter van so my wife would have a bathroom within five feet. And sometimes five feet was too far.

She never complained about it. Not once. She felt sorry for me, which was always the wrong direction. I would tell her: it's poop. It's just poop. I'll clean it up. We're not stopping the trip.

And we didn't.

The warrior posture

Despite all of this — the unpredictability, the kit, the public moments, the mad dashes home — she was up for everything. Disney World. Football games. Houston Methodist clinic visits four hours away. The April 19 party on the 55th floor. Hula dances at the condo luau. Movies. Museums. Dinners where she watched me eat because she was on the feeding tube. Trips to see family. Birthday parties. Any room I asked her to walk into, she walked into.

She did not stay home because of the poop. We did not stay home because of the poop.

We just packed the kit and went.

That is the warrior posture. The disease takes a lot. It does not have to take everything. It does not get to decide where you go and who you see and what you do, unless you let it. We didn't let it. Lonna especially didn't let it. I was the support staff. She was the one being brave.

And then she stopped

For two and a half years, the question was always how do we manage how much. And then in late July of 2025, the question flipped.

She stopped going.

She died at 6:49 that morning.

I had been tracking her bowels for two and a half years. Through transplant, through reflux, through the GJ tube, through immunosuppression changes, through pneumonia, through sepsis, through every ER visit and every hospital stay and every medication change. The day they stopped was the day I knew.

The body tells you. You just have to be paying attention to the parts that nobody else wants to look at.

Thumbs up.

Casey King spent over two decades as a caregiver for his wife Lonna, who lived with scleroderma and underwent a double lung transplant in 2023. He is writing The Caregiver's Trap: A Roadmap for When the Caregiver Needs Care.

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