Start by seeing your family doctor or a general practitioner if you have signs or symptoms that worry you. 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. Here's some information to help you get ready, 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.
- Consider taking a family member or friend along. 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 that 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 websites do you recommend?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions that come up during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may allow more time later to cover points you want to address. Your doctor may ask:
Apr. 09, 2011
- When did you begin experiencing symptoms?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- What, if anything, seems to improve your symptoms?
- What, if anything, appears to worsen your symptoms?
- Have you experienced episodes of prolonged diarrhea?
- Have you noticed blood in your stool?
- Ross AS, et al. Sclerosing cholangitis and recurrent pyogenic cholangitis. In: Feldman M, et al. Sleisenger & Fordtran's Gastrointestinal and Liver Disease: Pathophysiology, Diagnosis, Management. 9th ed. Philadelphia, Pa.: Saunders Elsevier; 2010. http://www.mdconsult.com/books/about.do?eid=4-u1.0-B978-1-4160-6189-2..X0001-7--TOP&isbn=978-1-4160-6189-2&about=true&uniqId=229935664-2192. Accessed March 3, 2011.
- Diagnosis and management of primary sclerosing cholangitis. Alexandria, Va.: American Association for the Study of Liver Diseases. http://www.aasld.org/practiceguidelines/Documents/Practice%20Guidelines/PSC_2-2010.pdf. Accessed March 3, 2011.
- Lopez MJ, et al. Primary sclerosing cholangitis and primary biliary cirrhosis. The American College of Gastroenterology. http://www.acg.gi.org/patients/gihealth/sclerosing.asp. Accessed March 3, 2011.
- Primary sclerosing cholangitis. National Institute of Diabetes and Digestive and Kidney Diseases. http://digestive.niddk.nih.gov/ddiseases/pubs/primarysclerosingcholangitis/index.htm. Accessed March 3, 2011.
- Liver health. American Liver Foundation. http://www.liverfoundation.org/abouttheliver/liverhealth/. Accessed March 3, 2011.
- Mendes F, et al. Primary and sclerosing cholangitis: Overview and update. Nature Reviews Gastroenterology & Hepatology. 2010;7:611.
- Rosenthal TC, et al. Fatigue: An overview. American Family Physician. 2008;78:1173.