Overview
Pouchitis is an inflammatory condition affecting the ileal pouch (also called a J-pouch or ileal pouch-anal anastomosis, IPAA) that is surgically created after total proctocolectomy, most commonly performed in patients with ulcerative colitis or familial adenomatous polyposis. The ileal pouch serves as an internal reservoir for stool after the colon and rectum have been removed. Pouchitis represents the most common long-term complication following this surgery, characterized by inflammation of the mucosal lining of the pouch. The condition primarily affects the gastrointestinal system, with key symptoms including increased stool frequency, watery or bloody diarrhea, urgency, fecal incontinence, abdominal cramping, pelvic discomfort, and occasionally fever and malaise. Some patients may also experience extraintestinal manifestations such as joint pain or skin lesions. Pouchitis can present as acute (responding to a short course of treatment), relapsing (recurrent episodes), or chronic (persistent symptoms lasting more than four weeks despite standard therapy). Diagnosis is established through a combination of clinical symptoms, endoscopic findings (such as mucosal edema, ulceration, and erythema), and histological evidence of acute inflammation. The first-line treatment for acute pouchitis is antibiotic therapy, most commonly with metronidazole or ciprofloxacin. For chronic or refractory pouchitis, treatment options include prolonged or combination antibiotic courses, probiotics (such as the VSL#3 formulation for maintenance of remission), immunomodulators, corticosteroids (topical or systemic), and biologic therapies such as anti-TNF agents. The exact etiology remains unclear but is thought to involve a multifactorial interplay of genetic susceptibility, gut microbiome dysbiosis, and immune dysregulation.
Clinical phenotype terms— hover any for plain English:
Multifactorial
Caused by a mix of several genes and environmental factors
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsUniversitaire Ziekenhuizen KU Leuven — PHASE4
University of North Carolina, Chapel Hill — PHASE4
Universitätsklinikum Hamburg-Eppendorf — NA
Takeda — PHASE3
Maia Kayal — EARLY_PHASE1
University of North Carolina, Chapel Hill — PHASE4
Exegi Pharma, LLC — PHASE1, PHASE2
Nantes University Hospital — PHASE3
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Pouchitis.
8 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Pouchitis.
Community
No community posts yet. Be the first to share your experience with Pouchitis.
Start the conversation →Latest news about Pouchitis
Disease timeline:
New recruiting trial: Fecal Microbiota Transplantation for Pouchitis
A new clinical trial is recruiting patients for Pouchitis
New recruiting trial: Mirikizumab in the Treatment of Chronic Inflammatory Conditions of the Pouch
A new clinical trial is recruiting patients for Pouchitis
New recruiting trial: A Study to Learn About the Safety of Vedolizumab and How Well it Works in Children and Teenagers With Active Chronic Pouchitis
A new clinical trial is recruiting patients for Pouchitis
New recruiting trial: CLF065 for Chronic Pouchitis
A new clinical trial is recruiting patients for Pouchitis
New recruiting trial: Rifaximin for the Secondary Prevention of Recurrent Pouchitis
A new clinical trial is recruiting patients for Pouchitis
New recruiting trial: Inflammatory Bowel Diseases Remission Registry
A new clinical trial is recruiting patients for Pouchitis
New recruiting trial: Study of EXE-346 Live Biotherapeutic to Reduce High Bowel Movement Frequency in Subjects With an IPAA (PROF)
A new clinical trial is recruiting patients for Pouchitis
New recruiting trial: Fecal Microbiota Transplant for Patients With Chronic Pouchitis
A new clinical trial is recruiting patients for Pouchitis
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Common questions about Pouchitis
What is Pouchitis?
Pouchitis is an inflammatory condition affecting the ileal pouch (also called a J-pouch or ileal pouch-anal anastomosis, IPAA) that is surgically created after total proctocolectomy, most commonly performed in patients with ulcerative colitis or familial adenomatous polyposis. The ileal pouch serves as an internal reservoir for stool after the colon and rectum have been removed. Pouchitis represents the most common long-term complication following this surgery, characterized by inflammation of the mucosal lining of the pouch. The condition primarily affects the gastrointestinal system, with k
How is Pouchitis inherited?
Pouchitis follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Pouchitis typically begin?
Typical onset of Pouchitis is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Pouchitis?
Yes — 8 recruiting clinical trials are currently listed for Pouchitis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Pouchitis?
25 specialists and care centers treating Pouchitis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.