My IBD Journey

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 preview

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.

First Symptoms

Childhood warning signs and adult onset

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". I use the term Crohn's-adjacent to define both intestinal and

Misdiagnosis

Incorrect assumptions about IBD biomarkers lead to misdiagnosis 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 [35, 36]. 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 [37, 38]. 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.

Diagnosis

Getting Answers

The tests, the waiting, and finally receiving a diagnosis. Understanding what IBD means and beginning to learn about the road ahead.

Early Treatment

Finding the Right Treatment

Navigating the world of IBD medications — starting treatments, adjusting dosages, and learning what works and what doesn't through trial and experience.

Setbacks

Flares & Challenges

The reality of living with a chronic condition — managing flare-ups, dealing with setbacks, and learning resilience through difficult periods.

Interventions

Procedures to Identify or Rule Out Functional Bowel Disorder

At some point, many IBD patients are diagnosed with a functional bowel disorder. Below is a list of procedures I've completed for the purpose of investigating possible functional bowel disorder.

Procedure Conditions Diagnosed Evidence Strength
Anorectal Manometry (ARM) Pelvic floor dyssynergia (dysfunction); fecal incontinence (low sphincter pressures); rectal hyposensitivity Strong — First-line test per ACG & AGA guidelines. Sensitivity 91% for fecal incontinence. [1, 2, 3]
Balloon Expulsion Test (BET) Pelvic floor dyssynergia (screening and exclusion) Strong (for exclusion) — Sensitivity 88%, specificity 89%. [1, 4]
Defecography (Fluoroscopic) Dyssynergic defecation; rectocele; rectal prolapse; rectal intussusception; enterocele; descending perineum syndrome; megarectum Strong — Sensitivity 91% for peritoneocele, 81% for rectal prolapse, 71% for rectocele. [5]
Defecography (MR / Dynamic MRI) Dyssynergic defecation; rectocele; enterocele; pelvic organ prolapse (multi-compartment); descending perineum syndrome; rectal intussusception Strong — AGA-recommended modality; avoids ionizing radiation. 65% concordance with ARM findings. [2, 6]
Colonic Transit Study (Sitz Markers / Radiopaque Markers) Slow-transit constipation; normal-transit constipation; colonic inertia; segmental colonic dysmotility Strong — Sensitivity 95%, specificity 100%. AGA recommends excluding pelvic floor dysfunction before interpreting. [2, 7, 8]
Wireless Motility Capsule (SmartPill) Gastroparesis; slow-transit constipation; small bowel dysmotility; generalized GI dysmotility Moderate — Note: SmartPill production ceased end of 2023. [9, 10]
Gastric Emptying Scintigraphy (4-hour) Gastroparesis (delayed gastric emptying); dumping syndrome (rapid gastric emptying); functional dyspepsia Strong — Gold standard for gastroparesis per ACG guidelines. [11, 12]
Hydrogen/Methane Breath Test Small intestinal bacterial overgrowth (SIBO); intestinal methanogen overgrowth (IMO); lactose intolerance; fructose malabsorption Moderate — Glucose breath test: pooled sensitivity 55%, specificity 83%. Lactulose breath test: sensitivity 42%, specificity 71%. [13, 14, 15]
High-Resolution Esophageal Manometry (HRM) Achalasia (types I–III); esophagogastric junction outflow obstruction (EGJOO); distal esophageal spasm; absent contractility; ineffective esophageal motility Strong — Definitive diagnostic test for achalasia and major motility disorders. [16, 17]
Ambulatory pH/Impedance Monitoring Gastroesophageal reflux disease (GERD); functional heartburn; reflux hypersensitivity; non-erosive reflux disease (NERD) Strong — Gold standard for quantifying acid exposure and symptom-reflux correlation. Lyon Consensus 2.0 defines conclusive GERD as AET >6%. Sensitivity increases with study duration: 63% at 24 hrs, 77% at 48 hrs, 88% at 72 hrs. Combined pH-impedance detects acid and non-acid reflux. [18, 19]
Endoanal / Endorectal Ultrasound Anal sphincter defects (internal and external); fecal incontinence (structural causes); obstetric sphincter injury; perianal fistulae Strong — Gold standard for sphincter morphology evaluation. ~100% sensitivity for detecting sphincter defects in most studies. Detects occult tears in up to 33% of post-vaginal-delivery women. Superior to MRI for internal sphincter defects; MRI may be better for external sphincter atrophy. [20, 21]
Anal Sphincter EMG Pelvic floor dyssynergia (paradoxical contraction); pudendal neuropathy; neurogenic fecal incontinence Moderate — Rome IV accepts surface EMG as alternative to manometry for identifying dyssynergic patterns. Needle EMG more sensitive for detecting subtle nerve injury but less tolerated. Useful for preclinical markers of pelvic floor disorders. [22, 23]
Upper Endoscopy (EGD) with Biopsies Celiac disease; eosinophilic esophagitis (EoE); peptic ulcer disease; functional dyspepsia — to rule out structural causes of upper GI symptoms Strong — Required for celiac diagnosis (≥2 duodenal bulb + ≥4 distal duodenal biopsies). EoE requires ≥6 esophageal biopsies from proximal and distal esophagus; EREFS scoring sensitivity/specificity ~90%. Sensitivity 93–100% for celiac when using standardized biopsy protocols. [28, 29]
SeHCAT Test (&sup7;&sup5;Se-HCAT) Bile acid malabsorption / bile acid diarrhea (primary and secondary, including post-ileal resection) Strong — Average sensitivity 87%, specificity 93% across studies. Performance varies by cutoff: 15% retention → 100% sensitivity / 91% specificity; 8% → 67% / 97%; 5% → 86% / 100%. Highest diagnostic accuracy among BAM tests (vs. serum C4 and fecal BA). Limited availability in the US. [30, 31]
Anorectal Biofeedback (diagnostic + therapeutic) Dyssynergic defecation / pelvic floor dyssynergia; fecal incontinence Strong (as treatment) — 80% major improvement at 6 months vs. 22% for laxatives in RCT. 92% correction of dyssynergic pattern. Benefits sustained at 12 and 24 months. AGA/ACG recommend biofeedback as first-line treatment for dyssynergic defecation. Instrumented biofeedback essential for efficacy. [32, 33, 34]
Interventions (continued)

Hospitalization and Surgical History

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.

Adaptation

Learning to Manage

Developing routines, understanding triggers, building a support system, and finding a new normal. The mental and practical adjustments that make daily life manageable.

Looking Forward

Advocacy & Education

IBD Pathways — Patient-friendly disease management guidelines

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.

Inflammatory Bowel Diseases · Open Access
Consensus Statement on Managing Anxiety and Depression in Individuals with Inflammatory Bowel Disease
Laurie Hinnant, PhD, Nicholas Rios Villacorta, Eliza Chen, Donna Bacchus, PhD, MSN, RN, Jennifer Dotson, MD, MPH, Ruby Greywoode, MD, MS, Laurie Keefer, PhD, Stephen Lupe, PsyD, Leah Maggs, Garrett Meek, Eva Szigethy, MD, PhD, Kathryn Tomasino, PhD, Orna G Ehrlich, MPH, Sylvia Ehle, MHA, CSSGB
Volume 31, Issue 5, May 2025, Pages 1248–1255

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 preview

Video developed in collaboration with the Crohn's and Colitis Foundation describing stigma experienced by patients with inflammatory bowel disease.

References
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  2. AGA Clinical Practice Update on Evaluation and Management of Refractory Constipation: Expert Review. Clin Gastroenterol Hepatol. 2025.
  3. Bharucha AE, Rao SSC. Advances in Diagnostic Assessment of Fecal Incontinence and Dyssynergic Defecation. Clin Gastroenterol Hepatol. 2010;8(11):910–919.
  4. Minguez M et al. Predictive Value of the Balloon Expulsion Test for Excluding the Diagnosis of Pelvic Floor Dyssynergia in Constipation. Gastroenterology. 2004;126(1):57–62.
  5. Defined by fluoroscopic defecography comparative studies. ScienceDirect overview: Defecography — Diagnostic Performance Data.
  6. MRI of the Pelvic Floor and MR Defecography. In: Diseases of the Abdomen and Pelvis 2018–2021. NCBI Bookshelf.
  7. Rao SSC. How to Interpret a Functional or Motility Test — Colon Transit Study. J Neurogastroenterol Motil. 2012;18(1):94–99.
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  9. Rao SSC et al. Investigation of Colonic and Whole-Gut Transit With Wireless Motility Capsule and Radiopaque Markers in Constipation. Clin Gastroenterol Hepatol. 2009;7(5):537–544.
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  17. Chicago Classification Version 4.0 and Its Impact on Current Clinical Practice. Gastroenterol Hepatol. 2021;17(10 Suppl 6):4–14.
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  21. Zutshi M et al. Transrectal Ultrasound, Manometry, and Pudendal Nerve Terminal Latency Studies in the Evaluation of Sphincter Injuries. Dis Colon Rectum. 2009;52(2):318–322.
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