I found out about PSC on accident.
When I was 19 (10 years ago), I was told that I had a fatty liver. I was given pills to take forever and that was that. I didn’t really understand it or like the idea of taking pills forever, so I saw a different doctor. He gave me supplements to take for 2 months every 6 months instead. They seemed to work so I left it alone. I didn’t really drink often and ate healthy, so it never really made seem to me. Further doctors never mentioned it to me and I stopped taking anything for it.
All the tests and all the doctors
Around July 2016, I began pee’ing what looked like blood on and off. This continued for awhile before I saw a Urologist. I had a CT scan done. First without contrast then I was sent back again for one with contrast. Then they did a cystoscopy (camera up your urethra… ouch!). The CT without contrast turned out to be pretty useless and the cystocopy was fine. The CT with contrast showed an array of things that I was sent to have looked at by other specialist.
I went to the kidney doctor, gastro doctor, OBGYN, and a Hematologist.
Kidney doctor: couldn’t figure out the blood in my urine. I tracked it an figure out that it was from my B12 shots. I have been taking B12 shots for about 10 years now, but never did they make this happen, so I didn’t suspect it.
OBGYN: for a cyst, which is still there and I follow up for every few months
Hematologist: For a cyst on my spleen and a low white blood count a few times. Doctor wasn’t worried about it and said just to monitor both
Now the gastro doctor was different. We are going to say that he is a big ally and one of the best docs I have been to so far. When I came to him, he said that because of the consistently high numbers in my blood work and the CT scan, he wanted me to have an MRI. But he said he wasn’t worried about it really being anything.
Well, it showed the same thing as the CT scan w/contrast. It was a blocked duct high in my bilinary tree. So then I had a liver biopsy. I will write more about each procedure later. The biospy confirmed that it is PSC.
Just when I thought I was done with all of the tests….
Say wha? Isn’t that for old men?! Yeah…no. Insurance doesn’t even like covering it unless you are 49 or order and that is for prevention. It is to see if I have Crohn’sor Ulcerative Colitis as well. It is common one or both of them to accompany PSC.
Results? Crohn’s confirmed. Next test is an MRE scheduled for next week to see if there is any Crohn’s in my small intestine.
So, all of this was because my B12 shot started not being absorbed as well. That led to the testing. If it weren’t for that, I may not know until it had progressed much further.
After looking online about PSC, I found some people who blog about PSC and their life. It was helpful and inspirational for me, so I decided to do the same. It is called “journeywithpsc.wordpress.com” if you are interested in reading it or commenting on it. I am recently diagnosed so there isn’t much on there yet and it changes as I learn more. It is kinda to show what the journey is like from the very beginning. I hope that I stick to it and it is helpful to someone else. It is helpful for me.
Thank you all for having me and I look forward to being a support to others if possible and vice versa.