Hospital Stay Summary

In the last several months I've been having a really hard time with my bowels, because of a spinal cord injury I've had for 30 years and an SCI disorder called Autonomic Dyslexia. ⚠️ What the Heck Is Autonomic Dysreflexia? (And Why Should You Care?)Autonomic Dysreflexia (AD) is when your nervous system throws a full-blown tantrum — usually if you have a spinal cord injury at T6 or above.🎯 Trigger warning: Stuff like a full bladder, constipation, tight clothes, or a wrinkle in your pants can set it off. Yes, a wrinkle.🧠 Here’s what happens: Your body senses a problem below your injury, but your brain can’t send back the “chill out” signal. So your blood pressure skyrockets, your face sweats like it’s at a BBQ, and your head pounds like it’s auditioning for a rock band.

Common signs you’re in the AD danger zone:

😤 Headache from the underworld

🔥 Sweating above your injury

🌡️ Flushed skin or chills

😵‍💫 Nausea, blurry vision, feeling like you might explode

💥 That “my body’s going DEFCON 1” vibe

🆘 What to do:

Sit up (gravity helps drop your BP)

Fix the problem (empty bladder, fix the wrinkle, check your bowel)

Yell for help if you need it. (Or text your brother, like I do.)

Bottom line: It’s not just annoying. It’s a medical emergency. Treat it like one. You deserve to feel safe in your body — even when your body is trying to throw a rave without permission. 💃🛑.

Early on in the injury it's not that bad but as time goes on and as you go through it more and get older it worsens.

Here is a little bit about my journey the last couple of months:

Blog Entry: My Stay at Salem and Santiam Hospital – December 2025–January 2026

Let’s talk about what happens when a missed bowel program becomes a full-blown hospital saga — and why something as simple as a call button can change the entire outcome.

Saturday, December 13 – It All Begins

Last Monday started out unremarkably, which in my world counts as a win. We did my usual bowel program and got what I would generously call an acceptable amount. Not a victory parade, but enough to declare success and move on.

Wednesday night? Not so much. Barely anything. Friday? Nothing. I was concerned, but deeply practiced in hope-based denial. I told myself, “It’ll sort itself out,” even though it never does.

At 4 a.m., I woke up knowing my body was about to betray me. I threw up, felt better, and went back to sleep. By 6 a.m., my caregiver showed up and did vitals: low BP, high blood sugar, low urine, and yes, more vomiting.

She said what no one wants to hear but everyone eventually accepts: “I think you need to go to the hospital.”

We called an ambulance. For once, I was taken straight into triage. My blood pressure was bouncing between sky-high and basement-low. They admitted me “just for the night,” which of course became multiple days.

Welcome to the Hospital Loop

Imaging showed things had moved into my colon, so they decided to do what I already told them works: suppository + digital stimulation. The suppository was placed. They said they’d be back in 20 minutes.

Two hours passed.

I started sweating, shaking, and getting a pounding headache — classic autonomic dysreflexia. I reached for my call button… only to realize it had been moved out of reach when they turned me on my side earlier.

So I did what any independent quadriplegic does in a hospital: I texted my brother and asked him to call the nurses’ station. He did. The nurse finally arrived.

“I’m having AD. My blood pressure is probably 200.”

She gave me the Look™️ — the one that says, “This patient is dramatic.”

It was 200/140.

She evacuated my bowels, which produced a full-blown gas explosion. She looked at me and asked, “What do I do next?”

I told her: “Set a timer. Rest ten minutes. Try again.” She left the room.

Eventually, they gave me lorazepam — hospital-speak for “please dissociate quietly now” — and I passed out. I had another blowout later that night, but finally got cleared for a full menu. They forgot butter and jam, but I wasn’t about to die on the dry toast hill.

I left exhausted, frustrated, and yet again reminded that I’m often the most informed person in the room about my body. The nurses were kind, just underinformed — and didn’t ask enough questions.

January 16–21: Round Two at Santiam Hospital

Just when I thought we were in the clear, I was back in the ER with abdominal pain, distention, and blood pressure that bounced like a toddler on a sugar high. I was admitted to Santiam Hospital (which, side note, is about to merge with Salem Health — so I expected info to show in MyChart. It didn’t. Cool cool cool).

They ran every test:

CT scans, multiple X-rays

Sigmoidoscopy (tiny camera, big relief)

Labs to check for infection

CT showed significant stool burden (shocking), mild inflammation, no obstruction. The scope found proctocolitis but no alarming findings. Biopsies? Normal. No malignancy. No severe inflammation.

They manually disimpacted me again (shoutout to my dignity), gave me IV antibiotics, increased my Metformin, and kept a close eye on my blood pressure.

By January 21, I was eating, feeling stronger, and cleared to go home with instructions to:

Follow up with GI for a full colonoscopy

Check in with my rehab specialist at OHSU

Bonus Plot Twist: CPAP Chronicles

Oh yes — because my body never skips an opportunity for a subplot.

While I was asleep one night, they hooked me up to my CPAP. I stopped breathing. Respiratory got called. Oxygen was added. When I woke up, people were standing around my bed talking about me like I was a Netflix true crime documentary.

The hospital respiratory nurse told me she’d been on the phone arguing with my regular respiratory nurse. The hospital wanted to change my settings, but my nurse refused. I haven’t even been able to meet with her because she keeps canceling my video appointments.

Turns out Medicare wants me to use the CPAP 90% of the time. I’m at 40%. My respiratory provider says it’s a leak in the system (which I can’t fix due to dexterity). Sometimes I just throw the thing across the room like it’s haunted medieval armor.

Hospital nurse actually listened and advocated for me. I felt seen. Which, sadly, feels like a revolution.

Final Thoughts

I’ve had a lot of hospital stays, but this stretch reminded me that healthcare systems still haven’t quite figured out how to care for complex patients who know their own bodies.

So here's my advice:

Always bring someone who can advocate for you.

Keep your phone nearby.

Never assume your care team knows everything about your condition — teach them.

And above all, do not underestimate the importance of a reachable call button.

More updates soon. Hopefully from my living room — not a hospital bed.

Your full blog post is now merged, simplified, and dramatically cohesive — just the way your story deserves to be told. It’s all there: the humor, the chaos, the medical drama, and of course, the dry toast.