Every IBD journey is unique. I share my journey not as medical advice, but with the hope that it helps others feel less alone.
Video I contributed to, developed in partnership with the Crohn's and Colitis Foundation, about managing mental health as a patient with Crohn's disease.
I was diagnosed with Crohn's disease when I was 28 years old.
A leading physician in the field of IBD research once told me that I've probably had Crohn's disease since I was a child, perhaps before I was even symptomatic. (Many of my health experiences as a child and young adult were "Crohn's-adjacent".)
When I became consistently symptomatic, at age 26, I was (mis-) diagnosed with IBS:
Both serum C-reactive protein (CRP) and fecal calprotectin are routinely treated as surrogate markers of intestinal inflammation, but neither is reliable across all IBD patients. A meaningful subset of patients with active Crohn's disease, particularly those with predominantly small-bowel involvement, maintain a normal CRP, partly because the small bowel produces a weaker acute-phase response than the colon and partly because of genetic polymorphisms in the CRP gene that produce low baseline expression [1, 2].
Fecal calprotectin generally outperforms CRP, but it too can be falsely normal in isolated small-bowel Crohn's disease and is non-specific: NSAID use, GI infections, colorectal neoplasia, and other inflammatory conditions can elevate calprotectin in the absence of IBD [3, 4]. Because of these limitations, normal biomarker values cannot rule out IBD, and clinicians who rely on them in place of endoscopic evaluation may mistake IBD for IBS, particularly in younger patients without overt systemic features.
The reverse also happens: IBD patients are often evaluated for a functional bowel disorder on top of their IBD. The procedures used in that workup, and the strength of the evidence behind each, are tabulated on the IBD Pathways page for the AGA guideline on functional GI symptoms in IBD.
Blood and stool tests can be misleading, but a scope is not. The two images below are my own terminal ileum, the last segment of small intestine and the site of my Crohn's disease. In the first image the mucosa is swollen, ulcerated, and bleeding easily (December 2024, scored Rutgeerts i4, the most severe grade). In the second, the same segment nine months later in endoscopic remission (September 2025): smooth, pink, and intact.
The tests, the waiting, and finally receiving a diagnosis. Understanding what IBD means and beginning to learn about the road ahead.
Navigating the world of IBD medications, starting treatments, adjusting dosages, and learning what works and what doesn't through trial and experience.
The reality of living with a chronic condition, managing flare-ups, dealing with setbacks, and learning resilience through difficult periods.
An interactive look at every hospitalization and surgical interventions I've experienced since diagnosis. Color denotes hospitalization cause, with warmer colors indicating greater severity. Hover over any bar for full details.
Developing routines, understanding triggers, building a support system, and finding a new normal. The mental and practical adjustments that make daily life manageable.
IBD Pathways translates complex clinical guidelines into patient-friendly disease management resources. The site provides interactive, evidence-based tools that help patients with inflammatory bowel disease understand their treatment options, navigate clinical decision-making alongside their care teams, and take a more active role in managing their disease.
This consensus statement was developed through a modified Delphi process bringing together IBD clinicians, mental health specialists, and patient advocates to address the high prevalence of anxiety and depression among IBD patients. The panel produced six actionable statements to guide healthcare professionals on screening, treatment, and support, aiming to close the gap between the mental health needs of IBD patients and the care they currently receive.
Video developed in collaboration with the Crohn's and Colitis Foundation describing stigma experienced by patients with inflammatory bowel disease.
Written by a patient, not a clinician. Gut Guide is written by a patient living with Crohn's disease who holds a Ph.D. in computational chemistry, not a medical degree. Nothing on this page has been reviewed by a gastroenterologist. It is not medical advice, not a diagnosis, and not a substitute for your own care team, and you should not start, stop, or change any treatment based on it. In an emergency call 911; for thoughts of suicide or self-harm call or text 988. Last reviewed by the author: September 27, 2026.
IBD Pathways