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PubMed This is a summary of 20 peer-reviewed journal articles Updated
Gastroenterology · Short Bowel Syndrome

Building Your Care Team and Preparing for Your First Visit

At a Glance

People with short bowel syndrome often need a multidisciplinary intestinal rehabilitation team. Bring operative reports, parenteral nutrition details, catheter history, recent labs, and a three-day intake/output diary to your first visit.

Because Short Bowel Syndrome (SBS) affects nearly every system in your body—from your bones and kidneys to your liver and heart—it cannot be managed by a single doctor. The standard of care for long-term recovery is a multidisciplinary intestinal rehabilitation team (IRT). This team works together not just to manage your IV nutrition, but to “rehabilitate” your remaining gut and improve your quality of life [1][2].

The Care Team Roster

A high-quality program should provide you with access to several different types of specialists:

  • Gastroenterologist (Intestinal Failure Specialist): A doctor who specializes in the medical management of the gut and the complexities of long-term IV nutrition [1].
  • Specialized Dietitian: They calculate exactly how many calories, fluids, and electrolytes you need and help you adjust your oral diet based on your anatomy [3][2].
  • Nutrition Pharmacist: These specialists “write” the daily recipe for your Parenteral Nutrition (PN) and ensure that your various medications don’t interfere with your nutrition [4].
  • Vascular Access Team: Experts (often nurses or radiologists) who specialize in placing and maintaining your central line and managing complications like blood clots [3][4].
  • Intestinal Surgeon: A surgeon experienced in “restorative” procedures to reconnect the bowel or “lengthening” procedures to improve absorption [1].
  • Psychosocial Support: Social workers or psychologists who help you navigate the significant lifestyle changes, travel logistics, caregiver training, and emotional toll of living with chronic intestinal failure [5][6].

Preparing for Your First Specialist Visit

When you visit an intestinal rehabilitation center for the first time, you are often transitioning from a hospital setting to long-term home care. To get the most out of this visit, you should aim to bring a “paper trail” of your medical journey so far [7]. (If you cannot find everything, the center should help you obtain missing records rather than making you feel responsible for assembling an impossible file.)

Essential Artifacts to Try to Bring:

  1. Operative Reports: This is the most critical document. It should detail exactly which parts of your bowel were removed and, most importantly, the measured length of the remaining small intestine [8][9]. Surgeons often measure from a point called the duodenojejunal flexure.
  2. Current PN Prescription: A copy of your most recent “TPN bag” label or the order form from your infusion company [10].
  3. Catheter History: A list of every central line you have had, including any history of infections (CLABSI) or blood clots (thrombosis) [10][11].
  4. Recent Labs: At least the last 3 to 6 months of bloodwork, specifically looking at your liver enzymes, kidney function (creatinine), and levels of vitamins or minerals like magnesium and zinc [12][13].
  5. An Intake/Output Diary: A 3-day record of everything you ate and drank, the volume of your stoma or stool output, and how much you urinated. This helps the team “size up” your current absorption [14][15].

Vetting an Intestinal Failure Program

Not every gastroenterology clinic is equipped to handle the complexities of SBS. When choosing a center, look for these “quality indicators”:

  • Dedicated IRT: Does the center have a formal “Intestinal Rehabilitation” or “Intestinal Failure” program, or is it just a general GI clinic? [1][16]
  • 24/7 Access: Do they have a clear pathway for you to reach a specialist after hours if you suspect a line infection or severe dehydration? [17]
  • Outcome Tracking: Do they monitor their own rates of catheter infections? Many programs use fewer than 1.0 infection per 1,000 catheter days as a benchmark for discussion and quality improvement, though definitions and case mix vary [18][19].
  • Transplant Coordination: Even if you don’t need one now, the center should have a relationship with an intestinal transplant program for “early referral” if your condition becomes life-threatening [20][13].

By building a specialized team and arriving prepared with your medical history, you shift from being a “patient” to an active partner in your own rehabilitation [5].

Common questions in this guide

What specialists should be part of a short bowel syndrome care team?
A multidisciplinary intestinal rehabilitation team commonly includes a gastroenterologist experienced in intestinal failure, a specialized dietitian, a nutrition pharmacist, vascular-access experts, and an intestinal surgeon. Social workers or psychologists can also help with home care, travel, caregiver training, and the emotional effects of chronic intestinal failure.
What should I bring to my first intestinal rehabilitation appointment?
Bring operative reports showing which bowel was removed and the measured length of the remaining small intestine, your current parenteral nutrition prescription, and a history of central lines, infections, and blood clots. Also bring recent laboratory results and a three-day diary of food, fluids, stoma or stool output, and urine.
Why does the length of my remaining small intestine matter?
The remaining bowel length and anatomy help the team estimate how well you absorb nutrients, fluids, and electrolytes and determine your nutrition and rehabilitation plan. The operative report may record the measurement from the duodenojejunal flexure.
How can I tell whether an intestinal failure program is well equipped?
Look for a dedicated intestinal rehabilitation program, a clear 24/7 route for urgent questions, and regular tracking of catheter-related infection outcomes. It is also helpful for the center to coordinate with an intestinal transplant program in case early referral is ever needed.
Who should I call after hours about my parenteral nutrition or central line?
A well-organized program should give you a specific after-hours contact for pump problems, parenteral nutrition questions, suspected line infection, or severe dehydration. Ask for this pathway before leaving the first visit and confirm which concerns require emergency care.
Should I ask about teduglutide for short bowel syndrome?
Teduglutide is one medication an experienced intestinal rehabilitation team may consider and monitor for selected patients. Whether it fits depends on your remaining bowel, nutrition needs, other health conditions, and treatment goals.

Questions For You

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Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Does this center have a dedicated, multidisciplinary intestinal rehabilitation team (IRT) that includes a specialized dietitian and pharmacist?
  2. 2.What is your team’s current rate of catheter-related bloodstream infections (CRBSI) per 1,000 catheter days, and how does the center define and report them?
  3. 3.Who is my primary point of contact if I have a question about my PN recipe or an issue with my pump after hours?
  4. 4.How does your program coordinate with my local doctors and labs to ensure my weekly or monthly bloodwork is monitored correctly?
  5. 5.Do you have experience prescribing and monitoring 'growth' medications like teduglutide for patients with my specific anatomy?

References

References (20)
  1. 1

    ESPEN guidelines on chronic intestinal failure in adults.

    Pironi L, Arends J, Bozzetti F, et al.

    Clinical nutrition (Edinburgh, Scotland) 2016; (35(2)):247-307 doi:10.1016/j.clnu.2016.01.020.

    PMID: 26944585
  2. 2

    Chronic Intestinal Failure and Short Bowel Syndrome in Adults: The State of the Art.

    Vara-Luiz F, Glória L, Mendes I, et al.

    GE Portuguese journal of gastroenterology 2024; (31(6)):388-400 doi:10.1159/000538938.

    PMID: 39633906
  3. 3

    Chronic intestinal failure: Medical treatment, home parenteral nutrition, training and monitoring.

    La L, Billiauws L, Lal S, et al.

    Clinical nutrition ESPEN 2026; (74()):103336 doi:10.1016/j.clnesp.2026.103336.

    PMID: 42128094
  4. 4

    Dietary Management of Chronic Kidney Disease and Secondary Hyperoxaluria in Patients with Short Bowel Syndrome and Type 3 Intestinal Failure.

    Adler M, Millar EC, Deans KA, et al.

    Nutrients 2022; (14(8)) doi:10.3390/nu14081646.

    PMID: 35458207
  5. 5

    Management of short-bowel syndrome: A survey of unmet educational needs among healthcare providers.

    Belcher E, Mercer D, Raphael BP, et al.

    JPEN. Journal of parenteral and enteral nutrition 2022; (46(8)):1839-1846 doi:10.1002/jpen.2388.

    PMID: 35511707
  6. 6

    Nutritional Care for Patients with Intestinal Failure.

    Matarese LE, Harvin G

    Gastroenterology clinics of North America 2021; (50(1)):201-216 doi:10.1016/j.gtc.2020.10.004.

    PMID: 33518165
  7. 7

    [Intestinal failure due to short bowel syndrome: impact of a multidisciplinary intestinal rehabilitation program].

    Molina ME, Bellolio F, Klaassen J, et al.

    Revista medica de Chile 2016; (144(11)):1410-1416 doi:10.4067/S0034-98872016001100006.

    PMID: 28394957
  8. 8

    Short bowel syndrome-associated intestinal failure: diagnosis and prognosis.

    DiBaise JK

    Expert review of gastroenterology & hepatology 2026; (20(4)):313-323 doi:10.1080/17474124.2026.2646296.

    PMID: 41823888
  9. 9

    High Parenteral Support Volume Is Associated With Reduced Quality of Life Determined by the Short-Bowel Syndrome Quality of Life Scale in Nonmalignant Intestinal Failure Patients.

    Nordsten CB, Molsted S, Bangsgaard L, et al.

    JPEN. Journal of parenteral and enteral nutrition 2021; (45(5)):926-932 doi:10.1002/jpen.1958.

    PMID: 32613614
  10. 10

    Parenteral Nutrition and Intestinal Failure.

    Bielawska B, Allard JP

    Nutrients 2017; (9(5)) doi:10.3390/nu9050466.

    PMID: 28481229
  11. 11

    Multidisciplinary intestinal rehabilitation in acute type II intestinal failure: Results from an intestinal rehabilitation team.

    Jung SM, Lee S, Park HJ, et al.

    Asian journal of surgery 2021; (44(3)):549-552 doi:10.1016/j.asjsur.2020.11.010.

    PMID: 33262044
  12. 12

    International survey of expert practice patterns in the diagnosis and management of adult intestinal failure-associated liver disease.

    Mundi MS, Mohamed Elfadil O, Joly F, et al.

    Clinical nutrition ESPEN 2026; (75()):103607 doi:10.1016/j.clnesp.2026.103607.

    PMID: 42486402
  13. 13

    Metabolic complications of home parenteral nutrition and chronic intestinal failure and indications for intestinal transplantation.

    Pironi L, Joly F, Lal S, et al.

    Clinical nutrition ESPEN 2026; (75()):103416 doi:10.1016/j.clnesp.2026.103416.

    PMID: 42314930
  14. 14

    Gut instinct: Navigating the landscape of parenteral support in short bowel syndrome.

    Bering J, Tarleton S, DiBaise JK

    Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition 2024; (39(5)):974-990 doi:10.1002/ncp.11157.

    PMID: 38715515
  15. 15

    Long-term treatment with teduglutide: a 48-week open-label single-center clinical trial in children with short bowel syndrome.

    Lambe C, Talbotec C, Kapel N, et al.

    The American journal of clinical nutrition 2023; (117(6)):1152-1163 doi:10.1016/j.ajcnut.2023.02.019.

    PMID: 37270289
  16. 16

    A framework to support quality of care for patients with chronic intestinal failure requiring home parenteral nutrition.

    Osland EJ, McGrath KH, Ali A, et al.

    Journal of gastroenterology and hepatology 2020; (35(4)):567-576 doi:10.1111/jgh.14841.

    PMID: 31441085
  17. 17

    Building lifelines: A narrative review and pragmatic implementation framework for developing centralised adult chronic intestinal failure services.

    Tabone T, Major G, Lal S

    Clinical nutrition ESPEN 2026; (73()):102993 doi:10.1016/j.clnesp.2026.102993.

    PMID: 41771423
  18. 18

    Diagnosis and management of catheter-related bloodstream infections in patients on home parenteral nutrition.

    Bond A, Chadwick P, Smith TR, et al.

    Frontline gastroenterology 2020; (11(1)):48-54 doi:10.1136/flgastro-2018-101094.

    PMID: 31885840
  19. 19

    The Czech Home Parenteral Nutrition Registry REDNUP: Comprehensive Analysis of Adult Patients' Data.

    Koudelková K, Waldauf P, Wohl P, et al.

    Annals of nutrition & metabolism 2024; (80(3)):143-152 doi:10.1159/000538232.

    PMID: 38471467
  20. 20

    New insights into the indications for intestinal transplantation.

    Pironi L, Sasdelli AS

    Current opinion in organ transplantation 2021; (26(2)):186-191 doi:10.1097/MOT.0000000000000846.

    PMID: 33395114

This page is for informational purposes only and does not constitute medical advice. Your intestinal rehabilitation team should interpret your records and guide decisions about parenteral nutrition, line care, and treatment.