I’m new, so this is an intro, but I also do have a question (hence the title) and figured I’d tackle both.
I’m 32/M and live on Long Island in NY. I was diagnosed with hemophilia (from mother) at six-months-old, and UC (from father) at 27-years-old. Apparently, like my parents, the two don’t get along well. It’s already difficult for colon-related bleeding to clot, so a lack of clotting factor does not help too much. Pretty much any major flareup involving bleeding is a life-threatening event. I was hospitalized four times for such events between 2012-2014—with the worst event landing me in the ICU for 20 days. I started Humira in 2014, and while I do have persistent issues, none have involved bleeding since. Medical cannabis also seems to help as well (score!).
Almost a year ago, I started having an intense pain in quadrant II of my abdomen. It would reoccur every once in a while, but not too often. This led to my old GI sending me for a CT scan, which led to my old GI diagnosing me with PSC over the phone/failing to impress upon me the gravity of my situation, which led to him becoming my old GI. Of course, the apple didn’t really hit me until I circumvented his advice, and visited various unsettling WebMDesque websites. (I’m a millennial, but quite good at identifying reliable sources.) I was not pleased.
Fast forward to a new GI, and a new old hepatologist, that were both part of the Mount Sinai Hospital system—which has a very good GI/liver program. They had this famous doctor guy you may have heard of: Burill Crohn. They are also fortunately relatively close. Anyway, Mt Sinai is in Manhattan, and if you’re familiar with the area, you’ll know traveling there via automobile is not ideal. So, I found one of their hepatologists that practices on Long Island. My appointment with her was two months ago—at which point the pain was much more frequent. I had an MRCP beforehand, and during my appointment, the hepatologist remarked that one of her colleagues is a PSC expert (red flag), and she’d be sharing the information with him. She was adamant that my quadrant II pain was a coincidence, and actually led them to discover the PSC. No immediate diagnosis for the pain besides a “not PSC” diagnosis. Her main theory was that I would have other symptoms other than the pain if it were a cholangitis attack. I then received a call from her assistant a few days later confirming my PSC. I was not pleased.
But, I was too angry about something else to really care after talking to several PSCers online. They had, in fact, experienced a similar pain + no other symptoms, but still = clogged ducts. SO, my pain may have been, and likely is, due to PSC after all (as per the internet).
Today, I made an appointment with a new new doctor, to occur on 1/24 (22 days), with the director of Mt Sinai’s Autoimmune Liver Disease Program. So, I’m thinking he may know a bit more about PSC, but he’s a hike (will probably take ~two hours, partially on foot through NYC).
So here’s my question[s]: over the past couple of days, I have become lethargic, and have been experiencing some itchiness. My appointment is in 22 days. It may very well be the medical cannabis, but I’m paranoid. If my ducts are in fact hardened or clogged, does every day count? Am I damaging my liver worse every day? Would I have like an emergency-ERCP if I went to the ER? (Obviously I don’t mean an emergency ERCP, but could a trip to the ER lead to admittance and ERCP.) Keep in mind: it will be a less-than-ideal situation if I hoof it to Mt Sinai ER, and they basically tell me to wait until my appointment. I would be, genuinely, not pleased.
Oh yeah, and I still have to find out how my hemophilia is going to play into… Every facet of my PSC treatment… Including ERCPs… And colon cancer screenings (biopsies are a sore subject).