Surgical Interventions

PEBD

Partial External Biliary Diversion

About this Treatment
  • A surgery where a piece of the small bowel is used to create an external stoma (opening) to drain bile from the gall bladder. An ostomy bag (a bag attached to the external opening) is then used to collect the bile. This is done to divert bile from the small intestine and interrupts bile from being recirculated into the liver.

  • Biliary diversion surgery is an effective option for medically refractory disease/pruritus in select cases:
    • Early-stage disease (no cirrhosis)
    • FIC1, BSEP with mild mutations, MYO5B disease
    It is not beneficial for MDR3 deficient patients.
  • Lay Summary
  • Reasons For Prescribing
IMPACT_Illustrations_SURG_PEBD_v3

Your Experience
Matters

Date Last Updated: 10/12/2024
Community Experiences
Recorded:
10

Community
Experiences

PFIC patients & the community have
reported the following experiences:

Benefits

  • Can result in reduced itch for multiple years, helping to delay transplant.
  • Some patients reported improved sleep quality and family quality of life.
  • Some patients reported improved ALT and AST, and reduced bilirubin.
  • Depending on the specific mutation it may not help to reduce itch for patients with BSEP deficiency (Type 2).
  • Relatively inexpensive.

Burdens

  • Dehydration, electrolyte imbalance, and/or severe vitamin deficiencies.
  • Some patients reported requiring additional surgery due to stoma stricture.
  • Inconveniences related to the stoma, including infections due to patient scratching at the stoma, challenges bathing and avoiding contact with water, foul odor, forgetting bags, bile leakage from bags, and social stigma.
  • Surgery-related complications, including developmental delays and intestinal blockages created by scar tissue from surgery.

Impacted Areas
of Patient Life

Of the six main areas mainly affected by PFIC, patients & the community have identified the areas impacted by this medication.

Itch
Patient Quality of Life
Family Quality of Life
Sleep Quality
Reduction of Diarrhea
Malnutrition

Resources

If you’d like to learn more you can
do so by visiting our Resource page.

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