Overview
Chronic intestinal failure (CIF) is a rare and serious condition where the intestines cannot absorb enough nutrients, water, and electrolytes to keep the body healthy. This means the gut is unable to do its main job of digesting food and delivering what the body needs to survive and grow. People with this condition cannot maintain their nutrition through eating alone and typically need long-term intravenous (IV) nutrition, called parenteral nutrition, to stay alive and healthy. Chronic intestinal failure can happen for several reasons. It may result from short bowel syndrome (when a large portion of the small intestine has been surgically removed), motility disorders (where the intestines do not move food along properly), or conditions that damage the lining of the intestines so they cannot absorb nutrients. In children, it is often caused by birth defects of the gut, necrotizing enterocolitis, or conditions like Hirschsprung disease. In adults, common causes include Crohn's disease, blood vessel problems affecting the gut, radiation damage, or surgical complications. Key symptoms include severe weight loss, chronic diarrhea, dehydration, malnutrition, and deficiencies in vitamins and minerals. Treatment centers on providing adequate nutrition through IV feeding, managing the underlying cause, and preventing complications such as liver disease and bloodstream infections related to IV lines. In some cases, intestinal transplantation may be considered. Advances in parenteral nutrition and multidisciplinary care have significantly improved outcomes for many patients.
Also known as:
Key symptoms:
Severe weight loss or failure to gain weightChronic diarrheaDehydrationMalnutritionFatigue and weaknessVitamin and mineral deficienciesBloating and abdominal discomfortNausea and vomitingSwelling in the legs or feet from low protein levelsFrequent infections related to IV feeding linesPoor growth in childrenBone thinning or osteoporosisMuscle wastingDifficulty maintaining normal body temperature
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsIcahn School of Medicine at Mount Sinai — NA
University Hospital, Bordeaux — NA
Chinese University of Hong Kong — PHASE4
Xinjiang Medical University
Melana Yuzefpolskaya, MD — PHASE1
Mansoura University — NA
University of Florida
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableExtraneal (with 7.5% Icodextrin) Peritoneal Dialysis Solutio
For use as a single daily exchange for the long (8-16 hour) dwell during continuous ambulatory peritoneal dialysis (CAPD) or automated peritoneal dialysis (APD) for the management of chronic renal fai…
For use as a single daily exchange for the long (8-16 hour) dwell during continuous ambulatory peritoneal dialysis (CAPD) or automated peritoneal dialysis (APD) for the management of chronic renal failure
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
Financial Resources
1 resourcesIVABRADINE
Amgen
Chronic Systolic Heart Failure
Travel Grants
No travel grants are currently matched to Chronic intestinal failure.
Community
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Start the conversation →Latest news about Chronic intestinal failure
Disease timeline:
New recruiting trial: Different Intervention Models of Premature Infants Based on the ICF Biopsychosocial Model
A new clinical trial is recruiting patients for Chronic intestinal failure
New recruiting trial: Intestinal Microbiota Transplantation in Patients With Chronic Heart Failure
A new clinical trial is recruiting patients for Chronic intestinal failure
New recruiting trial: The Gut Microbiome in Chronic Heart Failure
A new clinical trial is recruiting patients for Chronic intestinal failure
New recruiting trial: Drug Interaction Potential of Pro-Inflammatory Conditions
A new clinical trial is recruiting patients for Chronic intestinal failure
New recruiting trial: The Role of Brain-Bone Marrow-Gut Interaction Following Major Trauma
A new clinical trial is recruiting patients for Chronic intestinal failure
New recruiting trial: Rifaximin and Cardiac Function in Patients with Heart Failure with Preserved Ejection Fraction
A new clinical trial is recruiting patients for Chronic intestinal failure
New recruiting trial: Anabolic Response To Intravenous Amino Acids In Chronic Intestinal Failure Patients
A new clinical trial is recruiting patients for Chronic intestinal failure
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.
Questions for your doctor
Bring these to your next appointment
- Q1.What is the underlying cause of my intestinal failure, and can it be treated?,How long will I need parenteral nutrition, and is there a chance I can reduce or stop it over time?,Am I a candidate for teduglutide (Gattex/Revestive) or other medications to help my gut absorb more?,What are the risks of long-term parenteral nutrition, and how will you monitor for complications like liver disease?,Should I be referred to a specialized intestinal rehabilitation center?,What dietary changes can help maximize what my intestines can absorb?,Under what circumstances would intestinal transplantation be considered for me?
Common questions about Chronic intestinal failure
What is Chronic intestinal failure?
Chronic intestinal failure (CIF) is a rare and serious condition where the intestines cannot absorb enough nutrients, water, and electrolytes to keep the body healthy. This means the gut is unable to do its main job of digesting food and delivering what the body needs to survive and grow. People with this condition cannot maintain their nutrition through eating alone and typically need long-term intravenous (IV) nutrition, called parenteral nutrition, to stay alive and healthy. Chronic intestinal failure can happen for several reasons. It may result from short bowel syndrome (when a large por
Are there clinical trials for Chronic intestinal failure?
Yes — 3 recruiting clinical trials are currently listed for Chronic intestinal failure on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Chronic intestinal failure?
25 specialists and care centers treating Chronic intestinal failure are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Chronic intestinal failure?
1 patient support program are currently tracked on UniteRare for Chronic intestinal failure. See the treatments and support programs sections for copay assistance, eligibility, and contact details.