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Your Specialist Report — Primary Sclerosing Cholangitis (PSC) with Ulcerative Colitis

Prepared for: D.K. (sample patient, man, age 57) · Location: Columbus, Ohio · Insurance: employer PPO · Report date: November 2, 2026

Bottom line
• First choice for PSC depth: Dr. John Eaton, Mayo Clinic, Rochester, Minnesota. His page lists PSC trials and PSC biomarkers as interests, and his 2025–2026 papers cover finding bile duct cancer early in PSC and colon pre-cancer in PSC with inflammatory bowel disease. It is the farthest option (a flight, or about 11 hours by car).
• Closest PSC-named specialist: Dr. Craig Lammert, IU Health, Indianapolis (about 2 h 45 min by car). His page names PSC and says he is accepting new patients. IU is the closest site we found recruiting today for a large PSC drug trial (elafibranor); the only other Midwest site recruiting for it is the University of Iowa.
• Bile duct cancer focus: Dr. Nataliya Razumilava, Michigan Medicine, Ann Arbor (about 3 hours). Her page names cholangiocarcinoma (bile duct cancer) and bile duct disorders, though not PSC by name.
• In Columbus: Ohio State's liver team has a nurse practitioner whose page names PSC, and a liver transplant center. A sensible plan for many families: an expert center sets the plan; Columbus does the routine scans, labs and colonoscopies.
• What we could not settle from public pages: wait times, new-patient status for Mayo and Michigan, and video visits from Ohio. Those are the three questions for your first call (Section 3).

1. What this condition is

D.K.'s GI doctor has told him he has primary sclerosing cholangitis (PSC) and has asked the family to find a PSC specialist. PSC is a long-term liver disease. The bile ducts, the small tubes that carry bile out of the liver, become inflamed and scarred, and over time they narrow. Most people with PSC also have inflammatory bowel disease, most often ulcerative colitis. A teaching page from the American Association for the Study of Liver Diseases (AASLD, the U.S. liver doctors' society) says that people with PSC "are up to 400 times more likely" to develop cholangiocarcinoma (bile duct cancer) and also face a higher risk of gallbladder and colon cancer (AASLD page, February 27, 2024). That is why PSC care is mostly about watching closely over years: regular MRI scans of the bile ducts, regular colonoscopies, blood tests, and planning early for a liver transplant if the liver starts to fail. The same page says there is "currently no disease-modifying therapy for PSC". Care is usually led by a hepatologist (liver specialist) and shared with the GI doctor who treats the colitis. Your doctors will decide what applies to you; this report helps you prepare for those conversations.

What usually happens next. The first visit with a PSC specialist is usually a review of what has already been done: the MRI of the bile ducts (called MRCP), liver blood tests, any colonoscopy reports. Then the specialist sets a long-term plan. The AASLD page lists the checks that such a plan usually covers:

The same page is honest that it is "unclear if current recommendations are adequate" to reduce deaths from bile duct cancer, and that a large Swedish study of yearly scans found no clear survival benefit. Section 7 turns this into questions.

2. Specialists to consider

How we chose. We started from the public provider list of PSC Partners Seeking a Cure (the main U.S. PSC patient nonprofit), dated April 2026, plus each hospital's own pages and the U.S. trial registry. We read the April 2026 list on November 2, 2026; it names dozens of clinicians at each large center (Mayo Clinic, Cleveland Clinic, Michigan Medicine, IU Health, Ohio State). PSC Partners says on its provider map page that it "does not endorse or recommend specific physicians or medical centers." Being on that list does not show PSC focus, and some entries are out of date (see "Leads we checked"). We ranked doctors first by how directly their own hospital page ties them to PSC or to PSC-related bile duct cancer, then by distance from Columbus. Drive times are rough estimates, not measured.

What PSC Partners already gives you, and what this report adds. We saw no fee to use the PSC Partners map. This report adds: each named doctor's current hospital page checked on November 2, 2026; stale list entries caught; open PSC trials in the Midwest checked against the U.S. registry today; and the calls, questions and insurance steps for a family in Columbus.

1. John E. Eaton, MD — Gastroenterologist and Transplant Hepatologist, Mayo Clinic

2. Craig S. Lammert, MD — Gastroenterology and Hepatology, IU Health

3. Nataliya Razumilava, MD — Gastroenterology and Transplant Hepatology, Michigan Medicine

Numbers in this section that do not mean much. The transplant counts and survival rates above are each hospital's own figures, from different years, not audited by us, and not comparable between hospitals. A high transplant count also does not tell you how many PSC patients a doctor follows before transplant. Star ratings on these pages (4.9 vs 5.0) are too close and too general to separate doctors.

Closer to home (Columbus): Ohio State, a local liver team without a named PSC doctor

Sarah Johnson, APRN-CNP — Nurse Practitioner, liver diseases, Ohio State University Wexner Medical Center. Checked on Ohio State's page on November 2, 2026.

Leads we checked and did not list

3. Next steps

How to reach each specialist (from each institution's own page, checked November 2, 2026):

Your first call — three questions
No page we read gives the wait for a new patient. Mayo's and Michigan's pages do not say whether these doctors take new patients, and no page says whether video visits to Ohio are possible. Ask on the first call:
1. Is Dr. [name] seeing new adult patients with PSC, and what is the current wait for a first visit?
2. Do you need a referral from my doctor, or can I refer myself?
3. Can you review my MRCP images, labs and colonoscopy reports before I travel? After the first visit, can follow-ups be video visits to Ohio, with scans done in Columbus?

Your 3 steps this week:

  1. Ask your GI doctor's office for copies of these records:
  2. every MRI/MRCP report, plus the image files on a disc or secure link (the specialist will want to look at the images, not only the report)
  3. liver blood tests over time (alkaline phosphatase, bilirubin, ALT/AST, albumin, platelets) and any CA 19-9 results
  4. all colonoscopy and biopsy reports for the ulcerative colitis
  5. any ERCP, liver biopsy, ultrasound or liver stiffness (FibroScan or MR elastography) reports
  6. a current medication list and the visit notes
  7. Call or email two of the specialists above. One way to choose: Mayo for the deepest PSC focus, and IU if driving distance or the elafibranor trial matters, or Michigan if bile duct cancer is the main worry. Use the three questions in the box.
  8. Call your insurer (questions below), then call your HR benefits office if the answers are unclear.

Insurance questions for an employer PPO (ask, and write down the answer, name and date):

Other paths if the first plan does not work:

4. Stories from families who have been there

  1. A wife's account on a patient foundation website (American Liver Foundation, April 20, 2020): Jim.
  2. Jim had PSC for 13 years and also had ulcerative colitis. He kept working as a union electrician, and the family "lived normally" for years.
  3. After two bile duct infections and three ERCPs, he was found to have bile duct cancer in November 2007. Their Boston hospital did not offer transplant for that cancer, so they were sent to Mayo Clinic in Rochester for chemotherapy, radiation and then a living donor transplant in April 2008.
  4. Recovery included infections, feeding tubes, septic shock and a blood clot. His wife writes that he "no longer has PSC, cholangiocarcinoma, or cirrhosis."
  5. Tone: frightening, then grateful. One very good result, not a typical one. Read it
  6. A patient's own Q&A on the PSC Partners website (page dated April 15, 2026; he writes that his transplant was five months earlier, so the text is from early 2023): Jason Sparks, age 42.
  7. He has ulcerative colitis (since 1999), autoimmune hepatitis and PSC (found in 2011–2012). For years his only signs were tiredness and slightly yellow eyes.
  8. From June 2021 to November 2022 he spent 24 nights in the hospital over six stays: two bile duct infections, a complication after an ERCP, gallbladder removal "to preempt any potential gallbladder cancer", internal bleeding, and a cancer scare that "ultimately wound up being benign."
  9. He had a liver transplant at UCSF in California on October 29, 2022. He is also PSC Partners' top fundraiser, so he is not a neutral voice.
  10. Tone: honest about how hard the years were, upbeat now. Read it
  11. A patient foundation press release (PSC Partners, August 27, 2025): Michelle Murphy, Madison, Wisconsin.
  12. She learned she had PSC at 19 and kept it private for 30 years. In 2024 she learned she needed a transplant.
  13. At a PSC Partners conference she wore a shirt with a QR code asking for a living liver donor. Brooke Babcock, the mother of a teenager with PSC, was already "three-quarters of the way" through becoming a living donor. She saw the shirt and offered to be tested for Michelle.
  14. After nearly a year of tests, Brooke gave part of her liver to Michelle at Mayo Clinic in Rochester on August 26, 2025. The release was written the next day, so it says nothing about recovery.
  15. Tone: hopeful; written by the foundation. Read it

5. Ready-to-send messages

Email to the specialist's office (copy, fill the brackets, send):

Subject: New patient request — primary sclerosing cholangitis (PSC) with ulcerative colitis — records review
Hello, I am writing about myself. My GI doctor recently told me I have primary sclerosing cholangitis (PSC), and I have had ulcerative colitis for [years]. I am 57 and live in Columbus, Ohio.
Dr. [Eaton / Lammert / Razumilava]'s work with PSC is why I am contacting your program. Could you tell me:
(1) whether Dr. [name] is seeing new adult patients with PSC, (2) the current wait for a first visit,
(3) whether a referral is needed, and (4) how to send my MRCP images, liver tests and colonoscopy reports for review before a visit?
I would also like to know whether follow-up visits could be by video, with scans and labs done in Columbus, and whether I might fit any PSC study you are running.
My insurance is [plan name, PPO, member ID]. Thank you, [name, phone]

Phone script (what to say in the first 30 seconds): "Hi, I'm calling to request a new patient appointment with Dr. [name] for primary sclerosing cholangitis, or PSC, with ulcerative colitis. Is Dr. [name] currently seeing new adult patients with PSC? What's the wait? Do you need a referral, and how do I send my MRCP images and reports before the visit?" Write down: the person's name, the date, the answer, the next step.

6. One-page summary to bring to the appointment

Name: ____________ Date of birth: ____________ Phone: ____________ Condition: primary sclerosing cholangitis (PSC). Date I was told: ____________ By whom: ____________ Ulcerative colitis: since (year) ______ Last colonoscopy date and result: ____________ Current colitis medicine: ____________ Key test results (fill in from your copies):

Symptoms now: itching / yellow eyes or skin / fevers with chills / tiredness / right-side belly pain / weight loss (circle) · Since when: ______ Past bile duct infections, ERCPs or hospital stays: ____________ Current medicines and doses: ____________ Allergies: ____________ My local doctors (name, phone): ____________ The 3 questions that matter most to me today:

  1. ____________
  2. ____________
  3. ____________

What I want from this visit: (for example: a written cancer-screening schedule, a colonoscopy plan, and who does what in Columbus) ____________

7. Questions to ask the specialist

  1. How many adults with PSC do you personally follow each year? How many also have ulcerative colitis? And your team?
  2. What results do you see for patients like me, in the next few years and longer term?
  3. How long is the wait for a first visit, and can you review my MRCP images and reports before I travel?
  4. Is my PSC the "large-duct" or "small-duct" type? Does that change my risks or which studies I could join?
  5. What is my bile duct cancer screening plan: MRI/MRCP how often, CA 19-9 or not, and what happens if a result looks abnormal? Who reads my scans: a radiologist who reads many PSC scans?
  6. Colonoscopy: the AASLD page lists every 1–2 years with pre-cancer checks for people with PSC and colitis. Who should do mine, and with which technique?
  7. Do I need a gallbladder ultrasound? What would you do if a polyp is found?
  8. How much scarring does my liver have now? Do I need checks for cirrhosis or swollen veins (varices)?
  9. When would you send me for a transplant evaluation? Does your center do living donor transplants, and transplants for bile duct cancer?
  10. When would you do an ERCP, and who on your team does them?
  11. Should I take, keep or stop ursodiol (ursodeoxycholic acid)? Am I a fit for the elafibranor trial, the WIND-PSC study, or the PSC Partners registry?
  12. Can my Columbus doctors do the routine scans, labs and colonoscopies while you direct the plan? Can follow-ups be video visits?
  13. What warning signs should make me call you or go to the ER (fever with chills, new yellow skin or eyes, dark urine, belly pain, vomiting blood or black stools)?

8. Your support after this report

This report is general information to help you find and talk to specialists. It is not medical advice, does not identify or confirm any condition, and does not recommend a treatment. Treatment decisions belong to you and your doctors. No doctor or hospital pays to be included in this report. The patient in this sample report is fictional; the specialists, pages and stories are real and were checked on November 2, 2026.

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