When I was first diagnosed, I was in college and didn’t think too much about it. I figured I’d take some medication (albeit for the rest of my life) but then I’d be fine and get on with my life. The initial flare had me lose 30lbs and also had me taking Asacol, Prednisone, and steroid enemas before it was under control. After that first flare, it seemed things were “normal” for quite a few years. Then the original medication seemed to stop working so I was changed to another medication which began a 10-12 year history of constantly changing medications including intermittent rounds of Prednisone, Colazol, Budesonide, enemas and rectal foams, a trial of methotrexate, eventual double doses of Remicaid, a trial of the SCD and my final result of a total colectomy on Sept. 9, 2012.
The years after the 1st medication stopped working leading up to my colectomy were not ALL bad, there were good and bad times but when I actually wrote out my entire medication history from 2007 until 2012, I was quite suprised how often I was on Prednisone even being on double doses of Remicaid. I was also fortunately never hospitalized and was able to maintain a career.
Then in late 2008, my 6 month blood work checks showed some elevated liver enzymes. By May of 2009 and after a liver biopsy, I was diagnosed with Primary Sclerosing Cholangitis (PSC) which affects approx 4% of those with UC. By August of 2009, I had been to Mayo Clinic in Rochester, MN for a second opinion which confirmed the original diagnosis. This diagnosis was much more devastating than the UC diagnosis as there is no cure or treatment for this disease and no one can tell you if or when the disease will progress (similar to UC) but if it does progress, it usually progresses slowly but eventually destroys the liver over time and also increases your risk of developing liver cancer. The good news is that there was little to no damage and/or progress and I was having no symptoms. And 3 years later, after annual monitoring, there appears to be no progress or changes related to the liver and I am still symptom free and grateful for that. But in addition to the above menti oned issues, there is a significantly increased risk for colon cancer above and beyond the already increased risk that comes with UC. After further research and discussions with my physicians and University of Chicago, I found that the chance of me developing colon cancer was about 1 in 4.
After much soul searching, researching, doctor’s appointments, and discussions with family/friends, I decided that the best course for me was to have my colon removed with plans to end up with a J-pouch. So I underwent my first surgery of a total colectomy on Sept. 9, 2012, with plans for my second surgery sometime in January, and my final surgery planned for sometime in April of 2013.
As I was researching for my surgery, I found my internet groups for colitis and colectomies, the I HAVE UC website, and also You Tube an indespensible source of information and support. They also allowed me the time I needed to wrap my head around such a major decision and get used to what my new life might be like. About 1 week before my surgery, I decided to start a You Tube channel documenting MY journey from colectomy to J-pouch in the hopes that MY story may provide the same support, education, and information that I was able to receive. You can access my story on You Tube by typing “ucandpsc” in the search bar. I never imagined that I would be traveling down this road, but I’ve found that talking about it and being a source of information for others is helping me in addition to helping others.
written by Steve
I am a 40 year old male who was diagnosed with UC in 1995 during my college years. I was also diagnosed with the secondary diagnosis of Primary Sclerosing Cholangitis (PSC) in 2009.