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Short Bowel Syndrome with Intestinal Failure (SBS-IF)

Short bowel syndrome with intestinal failure is a condition where individuals cannot absorb nutrients properly because they lack parts of their small intestine. These parts may have been surgically removed, missing since birth or damaged and unable to function properly.

Short Bowel Syndrome with Intestinal Failure (SBS-IF)

Short bowel syndrome with intestinal failure is a condition where individuals cannot absorb nutrients properly because they lack part of their intestine due to portions being surgically removed, parts missing since birth, or portions damaged and unable to function properly.

Symptoms

Greasy, foul-smelling stool and diarrhea

Malnutrition and weight loss

Abdominal pain and swelling (edema)

Dehydration

Fatigue

Heartburn

Diagnosis Journey

Learn more about how people who are experiencing signs and symptoms of short bowel syndrome can be diagnosed.

When to talk to your doctor
Most adult patients are diagnosed with SBS-IF following surgery or resection of the small intestine. Those with additional conditions such as Crohn’s disease and traumatic injuries to the digestive tract may have an increased risk of SBS-IF. If you are experiencing symptoms of gastrointestinal discomfort such as those mentioned above post-surgery, ask your doctor about SBS-IF.

Process for diagnosis
If you are experiencing symptoms of gastrointestinal discomfort after surgery, your doctor may ask to perform the following tests to verify an SBS-IF diagnosis: ‍

Blood tests
Physical examinations
Stool examination (fecal fat test)
X-ray or CT scan of abdomen
Endoscopy
Colonoscopy

Specialists

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

Registered doctors

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

If you feel that you are not receiving adequate treatment, don't be afraid to explore other physicians and specialists in order to get the care you need.

Specialists

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

Registered doctors

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

Treatment Options and Ongoing Research

Short bowel syndrome with intestinal failure is a rare disease that requires more effective treatment options. In order to find these new treatments for SBS-IF, further research is necessary.

Current Research Studies

There are approximately 15 short bowel syndrome research studies that are actively recruiting participants. Search this site to find SBS research studies near you.

Visit Clinicaltrials.gov

Nutritional Support

Parenteral nutrition (PN)

Liquid nutrition given through a catheter or needle inserted through a vein in the arm, groin, neck or chest.

Enteral nutrition

Nutrition through a feeding tube placed in the stomach.

Electrolyte solutions (orally or through IV)

Vitamin and mineral supplements

Special diets

Medications

There are recommended drugs to help manage symptoms of short bowel syndrome with intestinal failure. These medications can help reduce diarrhea, improve intestinal absorption after surgery, and help control stomach acid.

Check out this list of medications that may help treat SBS-IF:

H2 Blockers (or H2 Antagonists)

These medicines, which are usually taken orally, reduce the amount of acid that is produced by the stomach in order to maintain a healthy amount of mucus in the barrier between the stomach acid and lining. Too much acid can result in an ulcer.

Choleretic Agents

These promote bile production in the liver. Bile is a thick fluid that is needed to digest fats and absorb nutrients.

Bile-salt Binders

Bile salts irritate the colon lining, causing it to secrete water, resulting in diarrhea. Bile-salt binders can trap these salts in feces to prevent the irritation of the intestinal lining, therefore decreasing the amount of salt in the GI tract. They can also bind to and stop certain vitamins from being absorbed by the body and causing diarrhea.

Hypomotility Agents

These substances decrease the speed that food travels through the intestine, leading to more time for nutrient absorption.

Growth Hormones and Teduglutide

Growth hormones aid in intestinal absorption of water, electrolytes, and nutrients, reducing the need for parenteral nutrition.

Teduglutide is a medication given through injection. It uses glucagon-like peptide-2 (GLP-2) analogs to increase nutrient absorption in the intestinal tract.

Surgery

In some cases, surgery may be recommended for those with SBS-IF. Some of the surgery options include:
‍

Surgery to slow the passage of nutrients through the intestine.
Procedure to lengthen the intestine.
Intestinal transplant, which is a surgery to replace damaged small intestine with a healthy small intestine from a donor.

Principal Investigator Spotlight

Dr. Raymond Phillips

Clinical Gastroenterologist and Hepatologist at the Gastroenterology Group of Naples

Shifting from Private Practice to Increasing Clinical Trial Accessibility for Gastroenterology Patients

Read Dr. Phillips' article where he discusses the importance of offering clinical trials as an option to patients before it's too late.

Resources

Find an online community of fellow SBS-IF patients, caregivers, and advocates below as well as some other general resources!

Short Bowel Syndrome Foundation Families Group

Created by the Short Bowel Syndrome Foundation Inc., this group is for those who have or have a child with Short Bowel Syndrome.

Short Bowel Syndrome Support Group

This is a support group for SBS patients and family members.

Short Bowel Foundation Adult Support

Created by the Short Bowel Syndrome Foundation Inc., this group is for anyone who has or knows of a young adult/adult with SBS and is seeking community and support, and information from others living with short bowel syndrome.

Short Gut Syndrome Patient, Family, and Professional Collaboration

A group to improve communication and collaboration about SBS by discussing treatments, therapies, and personal experiences.

Reddit Group: r/ShortBowelSyndrome

Public subreddit for those with or who know someone with SBS to share their experiences from treatment options to daily difficulties.

Short Bowel Syndrome Foundation

The Short Bowel Syndrome Foundation was created as a resource to help patients, family members, and healthcare professionals learn about short bowel syndrome. The site has multiple materials on SBS to help patients gain more control of both their condition and the quality of their lives.

Oley Foundation

The Oley Foundation is a national non-profit organization that aims to improve the lives of those with parenteral nutrition and tube feeding through education, advocacy, and networking. The Foundation has a variety of programs and information regarding nutritional care available.

ASPEN Podcasts

Teduglutide in Short Bowel Syndrome Patients: A Way Back to Normal Life?

Three doctors speak about their research and experiences using teduglutide to treat SBS-IF patients.

The Gutsy Perspective

The Gutsy Perspective is a research project for the SBS community to gain perspectives from children, parents and adult patients on living life with short bowel syndrome or intestinal failure.

Child Life on Call

Episode 23: Stephanie’s Story

A mother, Stephanie, shares her experience caring for her child with SBS.

The Mighty

My Journey with Short Bowel Syndrome

Read this story about an individual's journey with short bowel syndrome.

Social Security Disability Insurance

Check out this website for more information on disability resources for individuals with short bowel syndrome.

Integrating Psychosocial Supportive Care into the Clinical Management of Short Bowel Syndrome (SBS)

Learn more about continuing education, tools, and resources available for physicians, psychologists, social workers, and other mental health care professionals who support patients with short bowel syndrome.

Exploring the Impact of Pediatric Short Bowel Syndrome on Parent Well-Being Using a Disease-Specific Pilot Survey

Visit this article to learn more about research on the well-being of family caregivers of children with short bowel syndrome.

Studies Pinpoint Risk Factors for Complications of Pediatric Intestinal Failure

Read this article to learn more about studies evaluating factors that affect the quality of life in patients with short bowel syndrome and other forms of intestinal failure.

A Beautiful Struggle: Parent-Perceived Impact of Short Bowel Syndrome on Child and Family Wellbeing

Check out this research article to learn more about a study that analyzes how parents are impacted by their child's SBS.

FAQs

Who should I contact for a diagnosis?

Your regular doctor may refer you to a gastroenterologist, which is a doctor that specializes in conditions related to the digestive system.

How common is short bowel syndrome?

SBS-IF is a rare condition. In the U.S., it affects between 10,000 and 20,000 people. Globally, about 3-4 out of every million people are affected.

What causes short bowel syndrome?

SBS may develop when a portion of the small intestine is surgically removed. SBS may also develop in newborns who have missing or damaged portions of their small intestine at birth.

Why do I need all of my small intestine?

The small intestine absorbs nutrients from the food you eat. When the small intestine is shortened, food travels too quickly through the digestive tract and it is unable to absorb enough nutrients for your body to survive.

Can short bowel syndrome be cured?

There is no cure currently, but symptoms can be managed.
‍View Treatment Options

What are the signs that a patient may have SBS-IF?

A shortened small intestine and gastrointestinal discomfort following surgery. Other signs of short bowel syndrome can include dehydration, fatigue, weight loss, and lowered blood hormone levels.

PatientWing gratefully acknowledges Dr. Raymond Phillips for assistance in the review of this condition information. Updated July 2023.

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