A Crohn’s Update (From the Middle of It)

I’ve talked about Crohn’s disease here before, so this isn’t the beginning of the story.

It’s more like a pause in the middle—one of those moments where you stop, look around, and take stock of where you actually are.

I was diagnosed with Crohn’s in 2001, after a bout of food poisoning that flipped my body upside down and never quite put it back the same way. Over time, my large intestine became about 90% scar tissue. That’s not dramatic phrasing—it’s just the reality. Scar tissue doesn’t heal. It doesn’t reverse. It doesn’t care how well you behave.

For a while, I was on Stelara, and it helped. Then life happened—insurance gaps, reality gaps—and I was off it for about a year and a half. When I finally had another colonoscopy, the news landed quietly but firmly: the Crohn’s had spread to my ileum.

That moment held a lot.

Fear. Grief. Anger. A strange sense of inevitability.

Also—relief. Because now I knew.

I’m back on Stelara now, every four weeks. And here’s the part that’s hard to explain to people who want clean endings: I’m stable, but I’m not “fixed.” The medication isn’t undoing damage—it’s keeping things from getting worse. It’s holding the line. And sometimes, holding the line is a victory.

I also live with gastroparesis, which means my digestive system moves slowly—sometimes painfully so. I eat carefully. I eat simply. I eat once a day most days, usually when my husband is home, because my body feels safest then. I mostly drink water and coffee. I rely on routines, gentle predictability, and yes—sometimes a senna tablet—because if I don’t, nothing moves.

This is the unglamorous part of chronic illness.

Not the diagnosis. Not the flare.

The management.

There’s also the emotional side that doesn’t show up on scans. The quiet fear of tears or obstructions. The mental math I do when I’m home alone. The way my body has taught me to listen closely—sometimes too closely—for signs that something is wrong.

And yet… here I am.

I’m working. I’m loving my life. I’m laughing. I’m decorating shelves with angels. I’m drinking my coffee. I’m finding joy in small, ordinary things. I’m not in crisis—even if my body will never be simple.

That’s something I want to say clearly, especially for anyone reading this who lives with chronic illness too:

Stable does not mean failing.

Managed does not mean weak.

Living carefully is still living fully.

I don’t write this for sympathy. I write it because this body is mine, and this life is mine, and telling the truth about it matters. Crohn’s disease is part of my story, but it doesn’t get to narrate the whole thing.

I’m still here.

I’m still standing.

And for now—that is more than enough.

🤍

April