Living with Intestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked
An X-linked form of intestinal pseudo-obstruction in which nerve problems keep the gut from moving food well.
Understanding Intestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked
People have symptoms like an intestinal blockage but without any obstruction. It may arise from the muscles (myogenic) or from the nerves (neurogenic). When it occurs by itself, it is called primary or idiopathic (unknown cause).
Signs & symptoms
GARD doesn't list common symptoms for this condition yet. Less common ones include:
- Short small intestine from birth
- Swollen kidney (hydronephrosis)
- Narrowing at the stomach outlet (pyloric stenosis)
- Seizures
- Stiffness in both legs (spastic diplegia)
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
Your doctor may refer you to a specialist who knows rare conditions.
- 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 may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Association of Gastrointestinal Motility Disorders
- 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
- 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 lists X-linked inheritance, meaning the gene is on the X chromosome. It doesn't name a gene.
Also known as: ciipx; congenital idiopathic intestinal pseudoobstruction; congenital short bowel syndrome, x-linked recessive; intestinal pseudoobstruction, neuronal, chronic idiopathic, with central nervous system involvement; intestinal pseudoobstruction, neuronal, x-linked recessive
Patient organizations
- Association of Gastrointestinal Motility DisordersIntestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked · United States
You are more than your diagnosis
Perspectives from people navigating life with Intestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked.
Explore research for Intestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked
Explore actively recruiting Intestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked studies with HealthSpark.
Find actively recruiting studies for Intestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Intestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Intestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Intestinal pseudoobstruction, neuronal, chronic idiopathic, X-linked experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.