Hey Everyone, my name is Kurt, I’m 37, I live in Phoenix, AZ and I was diagnosed with PSC and UC just three weeks ago.
It all started just after Christmas when I developed diarrhea that didn’t go away. I went to my primary doctor a couple weeks later where they took blood and I submitted a stool sample. The blood test revealed elevated liver enzymes so they referred me to a GI specialist and to get an ultrasound. Stool samples were negative, but the ultrasound revealed a kidney stone (which I knew I had, so that was no surprise).
I didn’t much care for the 2 minute consultation I had with that GI, so I called the Mayo Clinic instead. They recommended that I send them any test results and a list of symptoms prior to my first visit, so I created a journal of sorts documenting medical history, timing of symptoms (including itchy skin for a number of years) and sent it all their way. My first consultation was with a hepatology specialist and after a half hour of talking with her and reviewing my blood test results, she felt everything pointed to PSC and UC, but wanted to confirm through other tests. She scheduled me for more blood tests, an MRI and a colonoscopy. A few days later, I met with the hepatology specialist again and she confirmed PSC, and their GI confirmed UC. Hepatologist told me that she and I would become good friends, lol.
Though the diagnosis shook me and my wife, I will say that the people at Mayo have been fantastic to work with. From my first appointment there to an official diagnosis was only 3 weeks. I feel very fortunate that I was able to get in there with those experts and they were able to figure this out so quickly.
Fortunately, the PSC is largely asymptomatic at this point, but the UC is taking center stage. GI prescribed me balsalazide which I’ve been taking for almost two weeks now and it seems to be helping with the UC pretty well.
I’m not quite sure what to think at this point. I think I’m still in the phase of not having fully accepted the diagnosis yet, but I’m getting there. At least now I know why I’m so itchy and tired! I thought the itchiness was from caffeine, so I stopped caffeine altogether and that didn’t really make much of a difference. And I thought my fatigue was from the fact that I have a (now) 4 year old super active daughter. Never thought any more of those issues. But now I know…
My wife and I have done a lot of digging online about this disease and what it will mean for our lives moving forward. There is a ton of information out there and it can be overwhelming at times, so we try to just take it in small doses and learn as much as we can.
Anyway, sorry for the rambling post, but I just wanted to introduce myself, tell my story and say hello to the group. I’m sure we’ll get to know each other well soon and I’m happy to have found such a supportive group