I’m a 28 year old man who was just a few weeks ago diagnosed with PSC.
I lived up to 22 years of age without a single health problem, blissfully unaware of how hard health issues can be. At 23 I was diagnosed with type 1 diabetes and thought my life was over. Needles and blood sugar control 24 hours a day, seemed like a nightmare. It kind of is, but I got a handle on it and after a year I could handle it great. While it does have a negative impact on my life I think it’s ok. I thought I had gotten my share of health issues after that.
However, a year ago (at 27) after a routine blood test they discovered that my liver values were messed up, and after ~7 months of tests, MRCP, and liver biopsi they think it’s PSC. So now I’m in the “my life is over” stage again.
I’m in the process of learning everything I can about this disease. So far I have no symptoms of any bowel disease and I hope it can stay that way, although with my luck who knows.
In any case, this forum seems like a great place to learn and get support. I might update this later when I’ve gotten more information about the progression and settled in.
I’m the same age as you and was diagnosed September last year, you can read my post about it if you like.
If you want any advice just let me know. My colonoscopy actually didn’t show any signs of IBD but the biopsies were able to diagnose me with Crohns, though I have basically no symptoms just some pain every now and then.
Just some advice from my own experience, stick to a good diet that doesn’t include chips, chocolate, cheesy, greasy pizza, pork pies, things like that, they can cause the liver to go a bit crazy and in my case produce symptoms. Also stay really well hydrated, don’t let yourself get dehydrated because it can slow the movement of bile in the liver.
We can get through this, I’m in good spirits I’ve been quite well for the last year since being diagnosed, I feel almost normal.
Let us know how the future tests go, take care
I read your post, was interesting. I guess I could have some bowel decease albeit with no/minor current symptoms. Guess future tests will tell.
Diet is already under control because of my type 1 diabetes. Have a bad diet with type 1 is just causing hell to yourself, so I keep diet under control. I do eat more fats and proteins than carbs though, for the blood sugar management. I wonder if high fat/protein diet could have any effect on PSC.
Hydration is also good advice. As above I already keep well hydrated since it helps when you occasionally get high blood sugars, but I’ll make sure to keep it going.
Thanks for the reply.
My son was diagnosed his freshman year in HS. He’s 23 now. The first few years were slightly challenging with testing, treatments etc., however he hasn’t really changed anything diet or lifestyle wise. He’s extremely active & listens to his body. There are times when he tires easily. He has had his colon & gallbladder removed, they opened up the bible ducs & a few other minor procedures. He isn’t on any medications. He’s been off them for almost a year.
He’s living life to the fullest fishing, hunting, working & creating a family. He was diagnosed just before his 15th Birthday. He didn’t skip a beat. He looked at me & said tomorrow isn’t promised to anyone. I’m taking it one day at a time & living my life to the fullest. Life wasn’t over for him. Life just began. He appreciates more. He enjoys more. He stresses less. He laughs more. He doesn’t take anything for granted.
I wish you nothing but well wishes & happiness.
Life isn’t over.
Dream. Believe. Do!!
Sending you support & encouragement!
Thanks for joining and sorry you had that diagnosis. While there are quite a few symptoms that can come with the territory, psc for the most part progresses pretty slowly. Until it doesn’t.
PSC will play mind games with you. At some point, you will be faced with the decision of how will I handle psc and its symptoms versus trying to live your life in the best manner you want. Maybe similar with your diabetes.
But do your research as knowledge is power. You will find that some people live for decades with psc and have been relatively asymptomatic. Others are not so lucky.
I had my tx 4 years and 2 months from being diagnosed.
One of the best things I can advise is to listen to your body, what it tells you and what it does not tell you. Having that mental adjustment will help a long way to dealing with psc. One of the hardest things is having a good mental preparation to handle any surprises, symptoms and challenges. It also helps to have a good sense of humor to deal with the psc as well.
I just found your posting from last October here while cruising around this site which I do from time to time (and post from time to time). I am prompted to reply to yours as my situation is quite similar - diagnosed with Type 1 D at 19 years old and thought my life was over. I committed to taking it very seriously and to eventually die of something unrelated. Well I got diagnosed with PSC at 48 which was not the type of ‘unrelated’ I had in mind (I pictured avalanched on a 8,000 meter peak at 93 years old). Also I have no IBD. Anyway I am 56 now, my A1C is usually under 6 (no kidding) I run an average of 6.3 mm/L blood sugar, no complications - the point is, it can be done. I take Tujeo and Humolog (by pen) and monitor with freestyle Libre (awesome help). The big D is just a background inconvenience (annoying one) and PSC has required my attention these recent years (between climbs). I had a Liver transplant in 2012 from the PSC (a brutal, too close, and not to be repeated experience) and rediagnosed in 2014. Immediately started Vancomycin and it went away, went off Vancomycin it came back in two years consistent with pattern, and I started Vanco again, and it went away. I’m sufficiently impressed with the cause and effect to continue Vanco(both times, LFT’s quickly went down to stable mid to low normal range ). Hope this is helpful. The daemons be damned, Joac, we can outsmart them.
RJM + Joac – I have a similar medical history. I got diagnosed with Ulcerative Colitis when I was 15. Then at age 30, I got Type 1 diabetes which seem to occur at the same time that my UC got better and went into remission (although I know concurrence does not mean causation. Now, at age 53, I have PSC, although still not entirely clear on its stage. I have always wonder the autoimmune thread that runs from UC to T1D to PSC. Many years ago when I first became a T1D, when researching it and UC, I found a European Research article that linked the 3 autoimmune conditions together, but I have not been able to find it since. I wonder if there are any researchers out there that would be interested in looking at our genes and see if there is a common marker amongst those of us that have the autoimmune conditions of both PSC and T1D? I don’t know how to find such researchers.
An interesting idea for sure. And throw Celiacs in for the works, I understand from somewhere it has been found on same “DNA strand” or such. I work in technology but not medical, but in my field and I think its the same with medical, there has been an accelleration of research, knowledge accumulation in the last 30 years. With the increase in high education and global development there are more research population and institutions hunting and doing relevant research. So lots of ‘papers’ out there. Google is my go to, but there are pay-for literature libraries, also free ones like researchhub. Google will turn up most of the work done, one just has to work on variations of search terms to dig them all out. More often than not, hypothesis that I think of, have had somebody study it already, or at least in some variation that identifies the world experts and there objectives, and stuff not eeked out yet. And the references of even quasirelated papers are often more focused to what you are looking for. I would say authors on the most recent of those papers would be the ones to pitch ideas and a (guinnea pig) offer. I’d consider it.