Finding an Intestinal Failure Specialist:

Establishing a strong partnership with your healthcare provider is crucial when managing Short Bowel Syndrome (SBS). It’s essential for individuals with SBS to find a doctor who aligns with their specific needs. The process may differ for each patient, so it’s advisable to conduct research and connect with others who share the condition. In some states, you can access information about doctors on docboard.org, a website managed by Administrators in Medicine, a group of state medical board directors.

To ensure the credentials of a doctor, visit the American Board of Medical Specialties (ABMS) website at abms.org or contact them at 1-866-275-2627. Board certification signifies that a physician has completed specialized training and passed an examination, demonstrating their expertise in providing quality patient care in their field.

  • Seeking referrals from other healthcare professionals, such as hospital nurses or your primary care physician, can be valuable. Primary care physicians may have insights into specialists within the field.
  • While hospital doctor referral services are an option, it’s important to note that they typically refer to doctors affiliated with that specific hospital, without information on the quality of care provided.
  • Local medical societies may offer lists of member doctors, but like other sources, they may not provide details about the quality of care.

For those seeking Gastroenterologists, the American Gastrointestinal Association provides a directory at this link.

Selecting Your Team:

Once you’ve identified potential physicians for your short bowel syndrome (SBS) and intestinal failure program, initiate contact with each office. Pose the following inquiries:

  • Does the practice accept your insurance plan? Given the challenging nature of SBS as a catastrophic condition, ensure your insurance coverage is accommodated. If your plan isn’t accepted, are you open to covering additional fees personally?

During your initial visit, seize the opportunity to acquaint yourself with the physician, ask pertinent questions, and assess your comfort level. Reflect on the following as you conclude your appointment:

  • Was I provided the opportunity to inquire about Short Bowel Syndrome?
  • Did my doctor genuinely listen to my questions?
  • Was the communication in terms I could comprehend?
  • Was there respect shown for me or my family member?
  • Did the doctor pose relevant questions related to my condition?
  • Did the visit instill a sense of comfort?
  • Were the health problems I presented with adequately addressed?
  • Was I consulted on preferences regarding different SBS treatments?
  • Did the doctor invest sufficient time with me?
  • Did the interaction instill confidence in my treatment plan?

Trust your instincts when evaluating if the doctor is the right fit for you. Recognize that building a patient-doctor relationship takes time, requiring more than one visit for both parties to develop mutual trust and understanding.

Working with your Team:

Establishing a good relationship with your doctor is crucial for satisfaction and positive outcomes in healthcare. This relationship can evolve into a partnership for effective treatment. To achieve this, share important details about your symptoms and health history, even if uncomfortable, ensuring confidentiality under HIPAA. Maintain an up-to-date health history and medication list, including any alternative medications. Provide previous diagnostic results, ask questions during appointments, and consider bringing a supportive friend or family member. Request written instructions, take information home, and take responsibility for your care. Obtaining your provider’s email for quick questions and joining online support groups can enhance your healthcare experience.