Dan from Ottawa, Canada here. I am a 34 year male who, this past spring, was diagnosed with ulcerative colitis and as of last month, also diagnosed with PSC. I’m seeking guidance from you all, the UC/PSC community, as to how I should proceed and navigate these newly confirmed diseases. First, a quick summary of my conditions:
All throughout 2019, I was suffering from sharp abdominal pains (lasting about 2 min each, multiple times a day) and frequent diarrhea (4 times a day, sometimes with small droplets of blood). My skin was developing all sorts of rashes (eczema) on my legs, stomach and groin and I would also have week’s long stretches of fatigue, particularly when I travelled. After switching family doctors, I was able to get a colonoscopy in January of 2020. The primary diagnosis was Crohn’s, but was changed to UC when I was assigned my GI specialist in March. I was placed on mesalamine for a few months, which seemed to minimize the sharp abdominal pains, but didn’t change my stool consistency and frequency. A 7-week round of prednisone was then prescribed in May, which provided immediate relief, but true remission was not achieved as UC symptoms returned once the steroid doses were reduced/tapered off. A second colonoscopy in July confirmed “stage 3” pancolitis; stage 3 refers to severe colitis with deep ulcerations. Mesalamine was continued until I was approved for Remicade infusions beginning at the start of August. I am hopeful the biologics, combined with azathioprine, will eventually provide intermediary remission from my UC symptoms.
However…two days after second Remicade infusion, and exactly one week after the birth of my first child, I began developing extreme upper-right quadrant pain that lasted for 10+ hours per night. For over a week, I would get these severe pains, beginning in the evening, and would be utterly paralyzed for the entire night, writhing in pain. During the day, I would be exhausted and have no appetite. After attempting to ease the pain with opioid painkillers, I was implored to check into the ER at the Ottawa General Hospital. I had become severely jaundiced (my bilirubin was 5x higher than normal) and a ultrasound showed inflammation in my bile ducts. An MRI/MRCP performed a couple days later indicated PSC. Since I was provided no direction from the doctors to ease the severe pains, I forced their hand with a second visit to the ER on September 1st. My GI doctor confirmed a PSC diagnosis and a ERCP was ordered for the next day.
Before and after the ERCP was conducted, my bilirubin dropped, but my liver functions numbers (AST, ALT, ALP) were 4x higher than normal, even the day after I was discharged from the hospital. I experienced some pain relief for one day, but soon after the pains returned. Because my lipase level is high, my GI suspects pancreatitis, although she cannot explain the delayed onset (post-ERCP). She told me to stop taking the azathioprine for now as it can aggravate pancreatitis. The ERCP report claims I have my common bile duct is unremarkable, but that my hepatic bile ducts (left and right) are stricted and were dilated during the procedure. I am assuming this indicates small-duct PSC. I am seeing a hepatic biliary specialist on Oct. 8th; there is a “roundtable” discussion amongst the doctors to discuss my case, and I’m hoping to have some direction from them.
After receiving my third loading dose of Remicade last Thursday (with a saline IV, less than a week ago), my PSC-related abdominal pain symptoms subsided completely and my appetite finally returned. I had lost over 20lbs in three weeks and was already lean to begin with, so the weight loss was noticeably shocking to my family. I have been able to put a few pounds back on and my energy is up slightly; I feel the biologics might be finally resulting in some type of remission, but am still wary of the symptoms returning at any time. My most recent bloodwork has shown my liver function numbers have stabilized greatly, besides my ALP number.
I was hoping to have some guidance, advice and direction on my next steps:
- Has anyone been prescribed a combination therapy of Remicade and azathioprine? How successful has that medicine been for you? Does remission from UC provide relief from PSC symptoms as well?
- Should I have seen the PSC symptoms coming? Did anyone else experience sudden and severe pain when a PSC diagnosis was indicated? All my bloodwork collected previously to my painful episodes at the end of August did not indicate any abnormal liver function.
- Should I be pushing for any type of medication to help manage PSC, such as ursodiol? The scans I got indicate no liver damage (ie cirrhosis) at this time, but I don’t know the health or progression of my biliary tract.
- How should I go about finding my MELD score? I have most the numbers I need to calculate it on my own besides knowing my INR score. Is INR found using a different specific value in a blood sample?
- Has anyone else experienced the PSC stomach pain patterns occurring only at night? I found it very odd and disconcerning that I could predict when my pain would onset, always after 7pm.
- How long does the dilating effect of an ERCP usually last/relieve pain? I can’t imagine needing another one anytime soon unless another bout of severe pain kicks in.
Thank you for taking the time to read my story. Again, any direction or advice for me would be greatly appreciated.
Dan from Canada