Start by seeing your primary care doctor 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. When you make your 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 remember 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. You may feel less rushed if you make a list of questions you want to ask at your appointment. Here are some possible questions about primary sclerosing cholangitis:
- 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?
- 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:
Aug. 15, 2014
- 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?
- Do you have frequent bouts of diarrhea?
- Have you noticed blood in your stool?
- Kowdley KV. Primary sclerosing cholangitis in adults: Clinical manifestations and diagnosis. http://www.uptodate.com/home. Accessed Jan. 24, 2014.
- Singh S, et al. Primary sclerosing cholangitis: Diagnosis, prognosis, and management. Clinical Gastroenterology and Hepatology. 2013;11:898.
- Eaton JE, et al. Pathogenesis of primary sclerosing cholangitis and advances in diagnosis and management. Gastroenterology. 2013;45:521.
- Imam MH, et al. Pathogenesis and management of pruritus in cholestatic liver disease. Journal of Gastroenterology and Hepatology. 2012;27:1150.
- Kowdley KV. Primary sclerosing cholangitis: Epidemiology and pathogenesis. http://www.uptodate.com/home. Accessed Dec. 18, 2013.
- Hirschfield GM, et al. Primary sclerosing cholangitis. The Lancet. 2013;382:1587.
- Kowdley, KV. Primary sclerosing cholangitis in adults: Treatment. http://www.uptodate.com/home. Accessed Dec. 18, 2013.
- Bunchorntavakul C, et al. Pruritis in chronic liver disease. Clinics in Liver Disease. 2012;16:331.
- Phan NQ, et al. Antipruritic treatment with systemic µ-opioid receptor antagonists: A review. Journal of the American Academy of Dermatology. 2010;63:680.
- Cook AJ. Decision Support System. Mayo Clinic, Rochester, Minn. Jan. 22, 2014.
- Carbone M, et al. Autoimmune liver disease, autoimmunity and liver transplantation. Journal of Hepatology. 2014;60:210.
- Murad SD, et al. Efficacy of neoadjuvant chemoradiation, followed by liver transplantation, for perihilar cholangiocarcinoma at 12 US centers. Gastroenterology. 2012;143:88.
- Barbara Woodward Lips Patient Education Center. Perihilar and distal cholangiocarcinoma. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2013.
- Primary sclerosing cholangitis. American College of Gastroenterology. http://patients.gi.org/topics/primary-sclerosing-cholangitis-psc/. Accessed Jan. 24, 2014.
- Liver health and wellness. American Liver Foundation. http://www.liverfoundation.org/abouttheliver/liverhealth/. Accessed Jan. 24, 2014.
- Barbara Woodward Lips Patient Education Center. Nutrition for people with liver disease. Rochester, Minn.: Mayo Foundation for Medical Research; 2013.
- Medication safety. Canadian Liver Foundation. http://www.liver.ca/liver-health/liver-disease-prevention/tips-for-healthy-liver/drug-safety.aspx. Accessed Jan. 23, 2014.
- Medications and the liver. American College of Gastroenterology. http://patients.gi.org/topics/medications-and-the-liver/. Accessed Jan. 24, 2014.
- Rosenthal TC, et al. Fatigue: An overview. American Family Physician. 2008;78:1173.