Living with SBS

For people 1 year of age and older with SHORT BOWEL SYNDROME (SBS) who are dependent on parenteral support (PS).

Understanding the role of PS in SBS management

Since SBS increases the risk for malnutrition, dehydration, and electrolyte disturbances, a doctor may have started you or your child on a form of PS. PS is any kind of nutrition and/or fluids that are given through a vein (intravenously). Based on your personal needs, PS can include a mix of ingredients, such as proteins, carbohydrates, fats, vitamins, and minerals.

Total parenteral nutrition (TPN) can include a mix of proteins, carbohydrates, fats, vitamins, and minerals delivered through a central or peripheral line

Intravenous (IV) fluids deliver necessary hydration along with a mix of electrolytes through a vein

For those who need it, PS helps maintain essential nutrients and hydration by delivering them through the patient's veins, not the remaining intestine. Although PS is a life-saving intervention, long-term use of PS has been linked to kidney and liver issues as well as other health complications. It’s important to talk about PS so that you can understand the impacts PS may have on your or your child’s life and help set long-term treatment expectations.

Taking care takes setting goals

Different people need different care. Whether you’re caring for yourself or another adult, a newly diagnosed child, or a teen on parenteral support (PS), it’s important to work with your doctor to set treatment goals. Knowing what you hope to accomplish with treatment is an important first step in managing short bowel syndrome (SBS).

Some considerations to review with your doctor

SBS and PS can prevent you from doing some of the things you want to do—personally, professionally, and socially. As you work with your doctor and plan next steps, the following may help focus your approach to managing your condition:

Maintaining healthy levels of nutrition and hydration

Managing working, sleeping, and social life

Helping the intestine adapt

Lowering or eliminating the need for long-term PS and reducing complications over time

Speak to real people who live with SBS about their goals and experiences.


Prepare for your child's or your next doctor's appointment

Use our Gut Check Questionnaire to prepare for the next office visit by creating points to discuss with your or your child's doctor.