Frequently Asked Questions
Answers for patients, caregivers, and clinicians in the Short Bowel Syndrome community
Quick answers about SBSF, support groups, education, care directories, registration, and contact options. For anything not covered here, email ajablonski@shortbowelfoundation.org.
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SBSF is a patient-led nonprofit that provides education, peer support, and advocacy for people living with Short Bowel Syndrome (SBS) and intestinal failure, and for their caregivers and clinicians.
Yes. Short Bowel Syndrome Foundation, Inc. is a 501(c)(3) public charity.
Lincoln, Nebraska.
Andrew (Andy) E. Jablonski founded SBSF in 2010. He is a lifelong SBS patient and serves as Founder and Executive Director.
No. SBSF offers education, community support, and advocacy resources. It does not diagnose, treat, prescribe, or replace care from a qualified medical team.
SBS is a condition in which the small intestine is too short or does not absorb enough nutrients and fluids. It often follows major intestinal surgery or conditions present from birth, and many people need specialized nutrition support. Understanding SBS →
Intestinal failure means the gut cannot absorb enough nutrition and/or fluid to maintain health without supplemental intravenous (parenteral) or specialized feeding support.
Common causes include surgical resection after conditions such as necrotizing enterocolitis (NEC), gastroschisis, midgut volvulus, Crohn’s disease, trauma, vascular events, tumors, and congenital intestinal disorders. Causes differ for children and adults.
Yes. “Short gut” is a common informal name for Short Bowel Syndrome.
Yes. SBS affects infants, children, and adults. Care needs and resources can differ by age and remaining bowel anatomy.
Start on the Intestinal Failure Support page, or use the Contact or Register forms.
Many groups are closed for privacy. New members must answer the entry questions and agree to the group rules. If those steps are incomplete, the request is declined with guidance on how to complete them. Once both requirements are met, access is granted.
Many SBS-related groups are closed or moderated to protect privacy. Expect entry questions and a rules agreement before approval.
Yes. SBSF hosts a mental health–focused peer group. Request access through the support or contact channels, and complete any entry questions and rules agreement required for that group. Facebook group →
SBSF connects with families across regions. International participation is often coordinated through SBSF contact channels rather than a single public open group.
Use Contact or Register, name the group you need, and complete the entry questions and rules agreement when prompted. Incomplete requests are declined with feedback so you can correct and reapply.
The SBSF Educational Hub is the main starting point for guides, programs, and downloadable tools.
A central learning area for patients, caregivers, and clinicians with SBS/IF education pathways and resources.
A patient-led educational series focused on adult life with SBS and intestinal failure—identity, work, relationships, advocacy, and practical living. Read the series →
Gaining Understanding of Transitions—support for major care transitions such as hospital-to-home, school, and adult care pathways. View program →
Many SBSF educational materials are freely available on the website. Some clinician or program items may have specific access notes on their pages.
An IRP is a multidisciplinary clinic focused on maximizing remaining bowel function, reducing complications, and supporting nutrition—including efforts to reduce long-term IV nutrition dependence when possible.
Use it as a reference map by state. Call the program line, ask for the IR/IF coordinator, confirm pediatric vs adult care, and ask about referral requirements. Always verify details with the center. Open directory →
No. The directory is a reference guide only. SBSF does not rank or endorse institutions.
Use SBSF’s Infusion Pharmacy List as a starting point, then confirm coverage and services with your care team and insurer.
Start with IRP directories, specialized GI/nutrition teams, and clinician resources on the site. Ask your current team for a referral to an intestinal rehabilitation or complex nutrition program.
Through education collaboration, patient-facing materials, referral pathways, research sharing, and the Clinician Inquiry form. For Clinicians →
On the Clinical Inquiries page.
SBSF supports clinician education through programs such as SBSF Cares and other educational resources. Check the current program page for active CME/CE details.
Yes, educational materials intended for patients and families may generally be shared for educational use. Follow any terms noted on individual documents and do not present them as medical orders.
Use the Register page.
Registration is part of a project still in development. Signing up helps SBSF understand who is active on the website, who is part of the SBS community, and how people are connected to that community (patient, caregiver, clinician, or supporter). Personal information is not sold or shared outside SBSF’s organizational use. This is not clinical enrollment and does not create a medical record with SBSF.
It helps SBSF improve resources, outreach, and future community tools based on who is actually using the site—while keeping your information private within the foundation.
Use the Contact page for support, partnership, media, or general questions.
You can also email Founder & Executive Director Andy Jablonski at ajablonski@shortbowelfoundation.org with additional questions. SBSF aims to respond as promptly as possible but is not an emergency service.
Use the Donate page. Options commonly include online giving and other methods listed there (such as PayPal/Venmo where offered).
As a 501(c)(3) public charity, qualifying donations are generally tax-deductible to the extent allowed by law. Keep your receipt and consult a tax professional for personal advice.
Yes. SBSF provides an emergency restroom card resource on the website. Restroom card →
SBSF has a GATTEX education page with patient-facing information. Treatment decisions belong with the prescribing clinician.
SBSF may point to informational resources related to Social Security Disability Insurance. It does not provide legal representation. SSDI info →
See the Sepsis Support Groups page and related support resources linked from Intestinal Failure Support.
SBSF treats submissions as private organizational communications. Personal information from registration or contact forms is not sold or shared outside SBSF’s organizational use. See the Privacy Policy.
On the SBSF Privacy Policy page.
Use the Contact page and include the page URL and what is wrong. You may also email ajablonski@shortbowelfoundation.org.
Still have questions?
Email Founder & Executive Director Andy Jablonski
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Contact form Go to Contact → |
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Content on this site is for general education and community support only. It is not a substitute for professional medical advice, diagnosis, or treatment. For medical emergencies, contact your care team or emergency services.