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PubMed This is a summary of 21 peer-reviewed journal articles Updated
Gastroenterology

Living with CIF: Building Your Care Team and Journey

At a Glance

Successfully managing Chronic Intestinal Failure (CIF) requires a multidisciplinary Intestinal Rehabilitation Program. This specialized team helps optimize gut health, manage home parenteral nutrition, and support the emotional and social challenges of living with the condition.

Living with Chronic Intestinal Failure (CIF) is a marathon, not a sprint. It is a journey that reshapes your daily routines, your social life, and your sense of identity. Because managing this condition is so complex, success depends on more than just the right IV formula; it requires a specialized “support crew” and a plan that addresses both your body and your mind [1][2].

Your Support Crew: The Multidisciplinary Team

The current standard of care for CIF is a Multidisciplinary Intestinal Rehabilitation Program (IRP) [1]. This team works together to optimize your gut health and, whenever possible, reduce your reliance on IV nutrition [3]. Managing this condition involves a delicate balance of protecting your liver function, preventing infections, and navigating complex insurance hurdles, which requires specialists:

  • The Physician Lead (Gastroenterologist): Manages your medications and long-term medical strategy [4].
  • The Specialized Surgeon: Performs reconstruction or lengthening procedures to help your gut absorb more efficiently [5].
  • The Clinical Pharmacist: A critical expert who customizes your HPN “recipe” and ensures your medications are safe for your specific gut function [6].
  • The Specialized Dietitian: Focuses on “enteral progression”—helping you find the right foods and oral supplements to help your gut adapt [7][8].
  • The Health Psychologist: Addresses the mental load of CIF, including food aversions, social isolation, and the anxiety of managing a central line [9][10].
  • Specialized Nurses: Your primary guides for the technical “how-to” of line care and preventing infections [11].

Navigating the Emotional and Social Load

The burden of long-term Home Parenteral Nutrition (HPN) is significant for both patients and their families [12].

  • For Patients: Many people feel a sense of social isolation, especially during meals, which are often the center of social gatherings [12]. It is common to feel a mix of gratitude for the life-saving nature of HPN and frustration at the technical “tethers” it creates [12][13].
  • A Day in the Life: With a portable pump and a customized 12-to-15-hour overnight infusion schedule, many patients build routines that allow them to disconnect during the day to work, exercise, and travel. While it requires meticulous planning and inventory management, a full, active life is very achievable [13][14].
  • For Caregivers: Managing the technical demands of IV nutrition while providing emotional support can lead to moderate-to-severe “caregiver burden” [15]. However, many caregivers also report a sense of gratification from being a vital part of their loved one’s stability and health [16].

The Pediatric-to-Adult Transition: A Gradual Milestone

For children growing up with CIF, moving from a pediatric hospital to an adult medical team is a major life event. Importantly, this is not an abrupt switch; it is a gradual process that typically unfolds over several years to ensure confidence and safety [17][18].

  • The Transition Protocol: Leading centers use formal checklists and “transition coordinators” to ensure nothing is missed over these transitional years [19][20].
  • Building Independence: The goal of this gradual shift is to help young adults become experts in their own care—learning to hook up their own PN, troubleshoot pump alarms, and advocate for their needs in adult medical settings [17][20].

Whether you are just starting this journey or have been on HPN for years, remember that your worth is not defined by your diagnosis. By building a strong multidisciplinary team and acknowledging the emotional weight of the condition, you can navigate the complexities of CIF with resilience and support [1][21].

Common questions in this guide

Who should be on my Chronic Intestinal Failure care team?
A Multidisciplinary Intestinal Rehabilitation Program team typically includes a gastroenterologist, specialized surgeon, clinical pharmacist, specialized dietitian, health psychologist, and specialized nurses.
How does Home Parenteral Nutrition (HPN) affect daily life?
Many patients use portable pumps and customize a 12-to-15-hour overnight infusion schedule. This routine allows them to safely disconnect during the day to work, exercise, travel, and maintain an active lifestyle.
When should pediatric CIF patients transition to an adult medical team?
Transitioning to adult care is a gradual process that typically unfolds over several years. Leading medical centers use formal checklists and transition coordinators to help young adults slowly build confidence and independence in managing their own care.
What mental health support is available for patients with CIF?
Health psychologists are key members of the care team who address the heavy emotional load of the condition. They can provide essential support for managing food aversions, social isolation, and the anxiety of caring for a central line.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Who are the specific members of my Multidisciplinary Intestinal Rehabilitation Program (IRP), and how do they coordinate my care?
  2. 2.Do we have a clinical psychologist on the team who specializes in the emotional and social impacts of chronic intestinal failure?
  3. 3.As a caregiver, what resources are available through the hospital to help prevent burnout and manage the technical demands of home care?
  4. 4.For pediatric patients: When should we begin the formal transition process to adult care, and do you use a structured checklist to track our readiness over time?
  5. 5.How can we connect with a specialized dietitian who has experience in promoting enteral autonomy and managing my specific gut anatomy?
  6. 6.If we have trouble with insurance coverage for HPN supplies or medications, who on the team can help us navigate these socioeconomic hurdles?

Questions For You

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References

References (21)
  1. 1

    Pediatric Intestinal Failure: A Review of the Scope of Disease and a Regional Model of a Multidisciplinary Care Team.

    Mangalat N

    Missouri medicine 2019; (116(2)):129-133.

    PMID: 31040499
  2. 2

    Intestinal Rehabilitation Program for Adult Patients with Intestinal Failure: A 20-Year Analysis of Outcomes in the Single-Center Experience at a Tertiary Hospital.

    Im KM, Chung JH

    Digestive diseases and sciences 2024; (69(5)):1770-1777 doi:10.1007/s10620-024-08285-0.

    PMID: 38446306
  3. 3

    Long-term outcomes of pediatric intestinal failure.

    Fullerton BS, Hong CR, Jaksic T

    Seminars in pediatric surgery 2017; (26(5)):328-335 doi:10.1053/j.sempedsurg.2017.09.006.

    PMID: 29110830
  4. 4

    Autologous intestinal reconstruction: a single institution study of the serial transverse enteroplasty (STEP) and the longitudinal intestinal lengthening and tailoring (LILT).

    Shah AA, Petrosyan M, Franklin AL, et al.

    Pediatric surgery international 2019; (35(6)):649-655 doi:10.1007/s00383-019-04468-3.

    PMID: 30868210
  5. 5

    Medical and Surgical Aspects of Intestinal Failure in the Child.

    Wendel D, Javid PJ

    The Surgical clinics of North America 2022; (102(5)):861-872 doi:10.1016/j.suc.2022.07.015.

    PMID: 36209751
  6. 6

    The experience and outcomes of multidisciplinary clinical pharmacist-led parenteral nutrition service for individuals with intestinal failure in a center without home parenteral nutrition.

    Shafiekhani M, Nikoupour H, Mirjalili M

    European journal of clinical nutrition 2022; (76(6)):841-847 doi:10.1038/s41430-021-01048-4.

    PMID: 35031769
  7. 7

    Micronutrient deficiencies in pediatric short bowel syndrome: a 10-year review from an intestinal rehabilitation center in China.

    Feng H, Zhang T, Yan W, et al.

    Pediatric surgery international 2020; (36(12)):1481-1487 doi:10.1007/s00383-020-04764-3.

    PMID: 33098448
  8. 8

    Organization and outcomes of multidisciplinary intestinal failure teams.

    Javid PJ, Wendel D, Horslen SP

    Seminars in pediatric surgery 2018; (27(4)):218-222 doi:10.1053/j.sempedsurg.2018.07.005.

    PMID: 30342595
  9. 9

    The medical benefits of fully integrated intestinal rehabilitation psychology: A case report.

    McKillop HN, Flahive CB, Gniadek M, et al.

    Intestinal Failure (New York, N.Y.) 2024; (3()):100037 doi:10.1016/j.intf.2025.100037.

    PMID: 41647104
  10. 10

    Pediatric Intestinal Failure Associated Eating Disorder: An Overview of the Importance of Oral Feeding in a Population at Risk for Feeding Difficulties.

    Boctor DL, Fenton TR, Goulet O, Lambe C

    Gastroenterology clinics of North America 2024; (53(2)):309-327 doi:10.1016/j.gtc.2023.12.003.

    PMID: 38719381
  11. 11

    Vascular rehabilitation in children with chronic intestinal failure reduces the risk of central-line associated bloodstream infections and catheter replacements.

    Hilberath J, Sieverding L, Urla C, et al.

    Clinical nutrition (Edinburgh, Scotland) 2024; (43(7)):1636-1641 doi:10.1016/j.clnu.2024.05.026.

    PMID: 38801807
  12. 12

    Quality of Life in the Management of Home Parenteral Nutrition.

    Schönenberger KA, Reber E, Huwiler VV, et al.

    Annals of nutrition & metabolism 2023; (79(3)):326-333 doi:10.1159/000530082.

    PMID: 36934718
  13. 13

    Advances in chronic intestinal failure management and therapies.

    Deutsch L, Cloutier A, Lal S

    Current opinion in gastroenterology 2020; (36(3)):223-229 doi:10.1097/MOG.0000000000000631.

    PMID: 32073503
  14. 14

    Survival and parenteral nutrition dependence in patients aged 65 y and older with short bowel syndrome: a retrospective observational cohort study.

    Draullette M, de Dreuille B, Sanchez M, et al.

    The American journal of clinical nutrition 2025; (121(6)):1387-1394 doi:10.1016/j.ajcnut.2025.02.032.

    PMID: 40074039
  15. 15

    Male gender is associated with informal caregiver burden in patients with chronic intestinal failure treated with home parenteral nutrition.

    Castinel J, Pellet G, Laharie D, et al.

    JPEN. Journal of parenteral and enteral nutrition 2022; (46(7)):1593-1601 doi:10.1002/jpen.2340.

    PMID: 35092023
  16. 16

    Acute impact of home parenteral nutrition in patients with late-stage cancer on family caregivers: preliminary data.

    Santarpia L, Bozzetti F

    Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 2018; (26(2)):667-671 doi:10.1007/s00520-017-3884-4.

    PMID: 28921385
  17. 17

    Moving on: How to switch young people with chronic intestinal failure from pediatric to adult care. a position statement by italian society of gastroenterology and hepatology and nutrition (SIGENP) and italian society of artificial nutrition and metabolism (SINPE).

    Diamanti A, Capriati T, Lezo A, et al.

    Digestive and liver disease : official journal of the Italian Society of Gastroenterology and the Italian Association for the Study of the Liver 2020; (52(10)):1131-1136 doi:10.1016/j.dld.2020.07.032.

    PMID: 32868212
  18. 18

    Geriatric syndromes in intestinal failure: An accelerated aging phenomenon in middle adulthood patients?

    Sandoval-Valdez DA, Reyes Ramírez ALDC, Serralde Zúñiga AE, Castillo Martínez L

    Clinical nutrition ESPEN 2025; (70()):554-561 doi:10.1016/j.clnesp.2025.10.020.

    PMID: 41167511
  19. 19

    Transition from pediatric to adult care in patients with chronic intestinal failure on home parenteral nutrition: How to do it right?

    Demirok A, Benninga MA, Diamanti A, et al.

    Clinical nutrition (Edinburgh, Scotland) 2024; (43(8)):1844-1851 doi:10.1016/j.clnu.2024.06.019.

    PMID: 38959661
  20. 20

    Controversy in Nutrition Recommendations for Short Bowel Syndrome: How Type of SBS Impacts Response.

    Austin K, Bonnes S, Daniel H

    Current gastroenterology reports 2019; (21(12)):64 doi:10.1007/s11894-019-0731-4.

    PMID: 31808005
  21. 21

    Patients' and their caregivers' experiences with home parenteral nutrition: a qualitative study using the Donabedian model.

    Tamer F, Kapucu S, Halil MG

    International journal for quality in health care : journal of the International Society for Quality in Health Care 2026; (38(1)) doi:10.1093/intqhc/mzag027.

    PMID: 41739668

This page is for informational purposes only and does not replace professional medical advice. Always consult your Intestinal Rehabilitation Program team about your specific condition, home care routines, and treatment plan.

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