Primary sclerosing cholangitis

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Preparing for your appointment

By Mayo Clinic staff

You're likely to start by first seeing your family doctor or a general practitioner. If your doctor suspects you may have primary sclerosing cholangitis, you may be referred to a liver specialist (gastroenterologist or hepatologist).

Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be well prepared for your appointment. Here's some information to help you get ready for your appointment, and what to expect from your doctor.

What you can do

  • Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
  • Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
  • Write down key personal information, including any major stresses or recent life changes.
  • Make a list of all medications, as well as any vitamins or supplements, that you're taking.
  • Take a family member or friend along, if possible. Sometimes it can be difficult to absorb all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
  • Write down questions to ask your doctor.

Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For primary sclerosing cholangitis, some basic questions to ask your doctor include:

  • Can you explain my test results to me?
  • Will I need more tests?
  • How far has my primary sclerosing cholangitis progressed?
  • How severe is the damage to my liver?
  • Can you estimate when I may need a liver transplant?
  • What treatments can relieve my signs and symptoms?
  • What are the potential side effects of each treatment?
  • Should I be tested for inflammatory bowel disease?
  • What signs and symptoms signal my condition is worsening and I need to make another appointment?
  • Are there any restrictions that I need to follow?
  • Should I see a specialist? What will that cost, and will my insurance cover it?
  • Are there any brochures or other printed material that I can take with me? What Web sites do you recommend?

In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.

References
  1. Tung BY, et al. Sclerosing cholangitis and recurrent pyogenic cholangitis. In: Feldman M, et al. Sleisenger & Fordtran's Gastrointestinal and Liver Disease: Pathophysiology, Diagnosis, Management. 8th ed. Philadelphia, Pa.: Saunders Elsevier; 2006. http://www.mdconsult.com/das/book/body/124031765-2/0/1389/0.html. Accessed March 5, 2009.
  2. Silveira MG, et al. Clinical features and management of primary sclerosing cholangitis. World Journal of Gastroenterology. 2008;14:3338.
  3. Lopez MJ, et al. Primary sclerosing cholangitis and primary biliary cirrhosis. The American College of Gastroenterology. http://www.acg.gi.org/patient/gihealth/sclerosing.asp. Accessed March 8, 2009.
  4. Primary sclerosing cholangitis. National Institute of Diabetes and Digestive and Kidney Diseases. http://digestive.niddk.nih.gov/ddiseases/pubs/primarysclerosingcholangitis/index.htm. Accessed March 8, 2009.
  5. Liver health tips. American Association for the Study of Liver Diseases. http://www.aasld.org/yourliver/Pages/LiverHealthTips.aspx. Accessed March 8, 2009.
  6. Rosenthal TC, et al. Fatigue: An overview. American Family Physician. 2008;78:1173.

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April 11, 2009

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