Organized by chapter · A foundation resource grounded in lived experience and clinical reality
Terms are grouped by the chapter in which they are most relevant. Use this glossary as a quick reference while reading the series or navigating clinical conversations.
Short-term failure lasting days to a few weeks, usually after surgery or critical illness; most people recover gut function.
Long-term intravenous access device (Hickman, PICC, or implanted port) used to deliver HPN or IV fluids.
Intestinal failure that persists for months or years in a person stable enough to live at home.
A motility disorder in which the bowel is present but cannot propel contents effectively.
An abnormal connection (enterocutaneous or enteroatmospheric) that bypasses absorptive surface and causes high fluid and nutrient losses.
Intravenous nutrition delivered at home through a central venous catheter, typically in cyclic overnight infusions.
A state in which the gastrointestinal tract cannot absorb enough nutrients, fluid, and electrolytes to maintain health without intravenous supplementation.
Reduced absorptive capacity that can still be managed with oral intake, dietary adjustments, ORS, and medications — without ongoing IV support.
Loss of blood flow to the intestine (thrombosis, embolism, or volvulus); a common cause of sudden, extensive bowel loss in adults.
Failure lasting weeks to months; patients may still be metabolically unstable and closely tied to hospital support.
Intestinal damage from prior radiation therapy that can cause strictures, fistulas, or chronic malabsorption years later.
The most common cause of chronic intestinal failure in adults, resulting from surgical removal (or loss of function) of a large portion of the small intestine.
A stoma that produces large volumes of fluid, often leading to dehydration and electrolyte imbalance.
The length of small intestine remaining after resection; a key predictor of the need for long-term HPN and potential for adaptation.
Infection of the bloodstream originating from a central venous catheter; the most frequent serious complication of long-term HPN.
Parenteral nutrition or fluids given over a set number of hours (commonly overnight) rather than continuously.
Liver injury linked to long-term parenteral nutrition, ranging from steatosis and cholestasis to fibrosis or cirrhosis.
Osteopenia or osteoporosis common in long-term HPN patients.
A rare metabolic complication that can occur in patients with short bowel and an intact colon.
Intravenous delivery of amino acids, glucose, lipid emulsion, electrolytes, vitamins, and trace elements.
Medications (especially high-dose loperamide, sometimes codeine) used to slow intestinal transit and reduce output.
Proton-pump inhibitors or H2 blockers used to reduce gastric hypersecretion after major resection.
Medications that promote intestinal adaptation by increasing villous height, slowing transit, and improving absorption. Teduglutide is the primary GLP-2 analogue approved for adults with SBS dependent on parenteral support.
A coordinated approach that aims to maximize remaining bowel function, reduce dependence on parenteral support when possible, and protect quality of life.
A specific bowel-lengthening surgical technique using the patient’s own bowel.
Types of central venous access: tunneled catheter (Hickman), peripherally inserted (PICC), or fully under the skin (port).
A specialized team (gastroenterology, surgery, nutrition, nursing, pharmacy, social work, mental health) experienced in complex adult IF care.
Grief for a body that is still present yet fundamentally altered; the person survives, but the previous version of self is gone.
The lasting psychological impact of emergency surgery, catastrophic illness, repeated hospitalizations, near-miss infections, or prolonged intensive care.
U.S. law requiring covered employers to provide reasonable accommodations for qualified individuals with disabilities.
A detailed physician document explaining why a specific therapy, formula, or service is required; essential for insurance approvals and appeals.
The process by which an insurer requires approval before covering a medication, therapy, or service.
U.S. disability benefit programs. Intestinal failure requiring daily parenteral nutrition via central catheter may meet formal criteria.
An insurance requirement that a patient try (and “fail”) less expensive treatments before a preferred or more expensive therapy is covered.
The specialized knowledge gained from years of managing SBS/IF daily; recognized as a valid form of expertise in research, guideline development, and policy.
Efforts aimed at changing research priorities, clinical guidelines, insurance coverage, drug/device access, and public awareness rather than only resolving individual cases.
A concise, up-to-date document maintained by the patient that includes diagnosis, surgical history, residual anatomy, current regimens, complications, and preferences.
A collaborative process in which clinicians and patients jointly consider evidence, risks, benefits, and the patient’s goals before making treatment decisions.
Connection with others who share lived experience of SBS/IF; provides validation, practical strategies, and reduced isolation.
A structured group of patients who advise companies, professional societies, or research networks.
Formal processes (including FDA listening sessions and industry advisory boards) in which patients help shape trial design, endpoints, and real-world relevance of new therapies.
Validated tools that quantify symptoms, functional status, and quality of life from the patient’s perspective.
Data from registries, electronic health records, infusion pharmacy records, and patient-powered research showing how treatments perform in everyday practice.
Exhaustion, resentment, or neglect of personal health that can result from sustained advocacy without clear boundaries and sustainable practices.
Forming or joining alliances with existing patient organizations, rare-disease networks, and clinical partners to multiply individual advocacy impact.