I’m making a change to how IBD Movement works, and I want to be direct about what’s happening and why.

For a while I tried to be a broader patient resource — guides, stories, mixed content covering different aspects of living with IBD. I’m narrowing it down. Going forward this site does one thing: plain-language summaries of new IBD research, written by someone who actually lives with Crohn’s disease.

Why the shift

The IBD research firehose is real. New studies, new biologics, new diet papers, new microbiome findings — most patients can’t keep up with what’s actually being published, and the headlines that do reach us are usually written by people who’ve never had a flare.

I have. I’ve been navigating Crohn’s since 2002 — clinic visits, biologics, the bad days, the boring maintenance days when the disease is quiet but still there. That’s the lens I read these papers through when I’m trying to figure out what they actually mean.

I’m not a doctor and I don’t pretend to be. I’m a patient who can read a study, summarize what the researchers actually found (not what the press release says they found), and tell you what it means to me as someone managing this condition day-to-day. After 23 years of living with fistulizing Crohn’s, I’ve developed a sense for which findings matter now versus which ones are worth watching but years away from changing anything.

That perspective — patient-first but research-literate — is what I think is missing from most IBD news coverage.

What changes

I’m focused on research news summaries. Each post will follow the same structure: what the study found, what stage of development is being talked about, what the limitations are, and what it means in practical terms for someone living with IBD right now.

I’ll be covering everything from preclinical research (the early stuff that’s interesting but years away from clinical use) to real-world data on treatments that are already available. The clinical stage matters — a Phase 1 safety study tells us something very different from a Phase 3 efficacy trial, and I’ll be clear about which is which.

I’m not publishing AI-generated patient stories anymore. Anything in that voice that was previously on the site is being removed. Lived experience belongs to people who actually lived it, and I’m not comfortable with synthetic versions of patient narratives, even well-intentioned ones.

The comment sections stay. If you disagree with my read on a study, or if you have experience with a treatment I’m covering, that’s valuable context for other readers.

What stays the same

The underlying purpose hasn’t changed: help people with IBD make sense of research without needing a PhD in immunology or expensive journal subscriptions. I’ll still write in first person, acknowledge when I don’t know something, and avoid the language that makes every finding sound like a miracle cure. Most research is incremental. Most early-stage findings don’t pan out — that’s not a reason to stop paying attention, it’s a reason to stay calibrated about what I’m looking at.

The focus stays on Crohn’s and ulcerative colitis research. I have Crohn’s, so that’s where my lived experience sits, but UC and Crohn’s research often overlaps, and I’ll cover both when relevant.

What this means going forward

Expect posts when there’s actual research news worth summarizing. Not daily content for the sake of content, but regular updates when studies come out that are worth your time to understand.

If you’re here because you want someone to tell you that the next big treatment advance is just around the corner, this probably isn’t the right site for you. If you want someone to read the research, tell you what it actually says, and give you a realistic sense of what it means for your life with IBD, then we’re on the same page.

I’ve been doing this long enough to know that managing IBD is mostly about the day-to-day decisions, not the research headlines. But staying informed about what’s being studied — and what’s not being studied — helps me make better decisions about my own care. That’s what I’m trying to make easier for other people dealing with this condition.