Living with Chronic intestinal pseudoobstruction
A rare condition in which the intestines act as if they are blocked when nothing is blocking them, causing bloating, vomiting, and pain.
Understanding Chronic intestinal pseudoobstruction
Problems with nerves, muscles, or the pacemaker cells of the gut (interstitial cells of Cajal) stop normal contractions and slow the movement of food, fluid, and air. It can occur at any age. It may be primary (on its own) or secondary (as a complication of another condition).
Signs & symptoms
Symptoms vary from person to person. GARD says the most common include:
- Swollen or bloated belly
- Vomiting
- Belly pain
- Poor weight gain (failure to thrive)
- Diarrhea or constipation
- Trouble tolerating feeds
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Association of Gastrointestinal Motility Disorders and Gastroparesis Patient Association for Cures and Treatments may keep lists of experts for this condition.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Association of Gastrointestinal Motility Disorders, Gastroparesis Patient Association for Cures and Treatments
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Association of Gastrointestinal Motility Disorders and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the cause is unknown in primary CIPO. In some people it is caused by variations in the FLNA or ACTG2 gene. Secondary CIPO develops from another medical condition.
Also known as: chronic intestinal pseudo-obstruction; cipo; intestinal pseudo-obstruction, chronic
Patient organizations
- Association of Gastrointestinal Motility DisordersChronic intestinal pseudoobstruction · United States
- Gastroparesis Patient Association for Cures and TreatmentsChronic intestinal pseudoobstruction · United States
- Pull-thru NetworkChronic intestinal pseudoobstruction · United States
You are more than your diagnosis
Perspectives from people navigating life with Chronic intestinal pseudoobstruction.
Explore research for Chronic intestinal pseudoobstruction
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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