I am a 25-year old male Canadian who got confirmation of PSC just yesterday.
I'm probably a pretty classic case. I was diagnosed with ulcerative colitis almost exactly a year ago. In January my GI did some routine blood work related to my medication, and discovered the elevated liver enzymes. Follow-up blood work showed some elevations in autoantibodies related to autoimmune liver diseases.
His initial suspicion was autoimmune hepatitis, so I went to see a highly reputable hospital Liver Clinic where they mentioned PSC was as likely, or more likely, given my background. They arranged an MRCP, which showed "irregularity in the liver ducts that were concerning for early sclerosing cholangitis," which essentially confirms PSC for me. I suppose it doesn't entirely rule out AIH either, but at least the PSC aspect seems pretty definite.
I am pretty much asymptomic outwardly. I haven't had any issues with fatigue or itch. I can recall a bit of pain in the upper right quadrant, but around the time of my colitis flare-up I had a ton of pain all over my abdomen, so it's hard to pin it entirely to the liver/bile ducts. Most of that pain wasn't very long-lasting anyways.
I'm sure I'll be talking to all of you over the coming months/years. Would love any advice on diet, lifestyle, and plain old coping you could offer!
Welcome to the Forum. Hope the good people here can help you out navigating this nasty illness.
Much like you, I developed Ulcerative Colitis around 25 while in the Marine Corps and stationed overseas. At first I was told of the bleeding "you are a Marine, you can suck it up". Of course I tried, but after being told numerous times I "probably" had internal hemorrhoids, I finally lost so much blood I had to be hospitalized in a VA hospital for close to six months. Worst pain I have ever experienced. At that particular point my Colitis was an 8.5 on a scale of 10 being headed into the operating room.
Many years later (20 plus) I still have my colon, my Colitis is in remission and I start getting curious readings around my liver from my GI Doctor. So I'm diagnosed with PSC two years ago which of course I end up having to look up as I had never heard of it to be honest.
I guess I'm in the early stages they say. My numbers have actually been steadily improving since they put me on two tablets twice a day of Ursodiol and are much better than when I was first diagnosed. My symptoms have been mild, mainly the itching. Funny but my ex used to get on me for itching and when I told her once I knew why I did she told me that "still wasn't an excuse". I'm sure we have all been there before.
I don't honestly do a lot differently than when I was first diagnosed. Taking the prescribed meds, trying to use supplements for Calcium and Vitamin D. I don't have any limitations in terms of food (I still stay away from the stuff I avoided with UC), and my energy level though down a little, hasn't decreased the way I've heard some people with PSC describe it.
My biggest takeaway, live life to the fullest and keep a positive mindset. Don't let the diagnosis throw your life into turmoil as it effects everyone differently from what I have read on here. Sometimes it strikes quickly, others can have it years and years before any further actions are needed.
Thanks a lot Stephen. I'm sorry to hear about your awful bout of colitis - I hope your road with that condition hasn't been as bad as the first flare up was. I was pretty lucky with my colitis I think, at least for now. My initial flare up - compared to so many stories I've heard really wasn't horrible. It was more like having a stomach flu that lasted for three months - I had some bleeding but it was never severe. Like you said, everyone's path with these conditions varies, so I will of course do my best to stay optimistic.
Semperfidelis1964 said:
Welcome to the Forum. Hope the good people here can help you out navigating this nasty illness.
Much like you, I developed Ulcerative Colitis around 25 while in the Marine Corps and stationed overseas. At first I was told of the bleeding "you are a Marine, you can suck it up". Of course I tried, but after being told numerous times I "probably" had internal hemorrhoids, I finally lost so much blood I had to be hospitalized in a VA hospital for close to six months. Worst pain I have ever experienced. At that particular point my Colitis was an 8.5 on a scale of 10 being headed into the operating room.
Many years later (20 plus) I still have my colon, my Colitis is in remission and I start getting curious readings around my liver from my GI Doctor. So I'm diagnosed with PSC two years ago which of course I end up having to look up as I had never heard of it to be honest.
I guess I'm in the early stages they say. My numbers have actually been steadily improving since they put me on two tablets twice a day of Ursodiol and are much better than when I was first diagnosed. My symptoms have been mild, mainly the itching. Funny but my ex used to get on me for itching and when I told her once I knew why I did she told me that "still wasn't an excuse". I'm sure we have all been there before.
I don't honestly do a lot differently than when I was first diagnosed. Taking the prescribed meds, trying to use supplements for Calcium and Vitamin D. I don't have any limitations in terms of food (I still stay away from the stuff I avoided with UC), and my energy level though down a little, hasn't decreased the way I've heard some people with PSC describe it.
My biggest takeaway, live life to the fullest and keep a positive mindset. Don't let the diagnosis throw your life into turmoil as it effects everyone differently from what I have read on here. Sometimes it strikes quickly, others can have it years and years before any further actions are needed.
Have they done a liver biopsy to look into the AIH?
It is highly likely that your gastroenterologist/hepatologist has only one PSC patient - you - and a zillion other patients with more common liver issues. Your doctor isn't going to be spending his/her time to find out the latest and greatest on PSC and they are going to be relying on what they learned in school. Because of this, it is your job to be the expert and to keep up to date on the latest research. There is a lot going on these days compared to 15 years ago: antibiotic therapy, Interleukin-2 to promote Tregs, NorUrso, etc. PSC is still very much a wait and see disease, but there are opportunities to potentially treat PSC if you aren't happy with the passive approach. If you see something interesting (and if it is available in Canada), ask your doctor to try it off label. If you bring the science they just might say yes.
Oral Vancomycin works great for some PSC patients (it brought me back from the brink of transplant). It also normalizes the UC part of the equation for a lot of people.
I'm 32 with severe osteoporosis. Don't end up like me. Ask your doctor to check fat soluble vitamin levels and at the very least take a vitamin D supplement. A bone density scan every couple years wouldn't hurt.
They haven't yet done a liver biopsy to look at AIH. I know about the crossover syndromes, so I realize that may still be in store for me.
After my gastroenterologist first mentioned AIH to me, my brother (who is in the medical field) urged me to go see a hospital doctor for the best care possible, for the same reasons you mentioned. I got a referral to the a really reputable clinic at a major hospital in Toronto, where my doctor exclusively deals with three conditions - AIH, PSC and PBC, so hopefully I am in good hands! I will definitely be discussing all the options with her. She already mentioned in my first consultation that if it did turn out to be PSC, she would start me on NorUrso. I've read all of the studies and research on vancomycin. It sounds so exciting - almost in a too good to be true way! - and I'm definitely going to ask her about it when I see her next. (Which isn't until the beginning of December, unless I call now and try to move up my appointment.)
Thanks again for all the info and support!
jtb said:
Hey there dizzle!
Have they done a liver biopsy to look into the AIH?
It is highly likely that your gastroenterologist/hepatologist has only one PSC patient - you - and a zillion other patients with more common liver issues. Your doctor isn't going to be spending his/her time to find out the latest and greatest on PSC and they are going to be relying on what they learned in school. Because of this, it is your job to be the expert and to keep up to date on the latest research. There is a lot going on these days compared to 15 years ago: antibiotic therapy, Interleukin-2 to promote Tregs, NorUrso, etc. PSC is still very much a wait and see disease, but there are opportunities to potentially treat PSC if you aren't happy with the passive approach. If you see something interesting (and if it is available in Canada), ask your doctor to try it off label. If you bring the science they just might say yes.
Oral Vancomycin works great for some PSC patients (it brought me back from the brink of transplant). It also normalizes the UC part of the equation for a lot of people.
I'm 32 with severe osteoporosis. Don't end up like me. Ask your doctor to check fat soluble vitamin levels and at the very least take a vitamin D supplement. A bone density scan every couple years wouldn't hurt.
sorry. welcome to the club. sounds like you are in good hands with specialist, and nor urso in canada! this is exciting news! good luck, and feel free to rely on any of us here as you adjust... it is a shock.
I'm really curious about your doctor's NorUrso comment. I'm fuzzy on how things work in Canada but I'm under the impression that NorUrso is not available in the US outside of a clinical trial. Do you (or anyone else) know if NorUrso is available in Canada or the US?
Thinking back now, it seems I might have confused my terms. They mentioned treatment with urso, not with NorUrso - I assume there is an important difference? Sorry about that!
jtb said:
Dizzle - it sounds like you are in good hands.
I'm really curious about your doctor's NorUrso comment. I'm fuzzy on how things work in Canada but I'm under the impression that NorUrso is not available in the US outside of a clinical trial. Do you (or anyone else) know if NorUrso is available in Canada or the US?