Topic: Lost my 24 year old son 4/22/07
Having just passed the 2 month mark yesterday of Shaun's death, today I find myself looking up information and trying to cope with the feeling of being absolutely blindsided by cc. I suppose that could be interpreted as healing just a bit, to the point where I can at least read about it and talk about it.
Yes, Shaun was diagnosed with ulcerative colitis when he was 14, and was later found to have developed schlerosing cholangitis, but we understood that the worse case scenario would involve a liver transplant. Shaun was an identical twin, so we were confident all would be well. We also were told that he stood a greater chance than the average UC patient of someday developing cancer. Last year he started getting regular colonoscopies & no concerns were noted. Then, in March, after about three weeks of back pain & generally not feeling well, he went to the doctor, was immediately sent for an ultrasound, and was admitted to the hospital. Our athletic, handsome son, a championship volleyball player & rugby coach, had stage four cc. We only had six weeks with him before he passed away.
It's a blessing that I don't feel blame or regret. It was so dramatic and quick, I am left feeling that there is no question he was only meant to be here for 24 years. However, I am puzzled as to why no one in the medical field thought to order a general scan along with his colonoscopy. Is cc really that rare? I'd like to encourage any person afflicted with Schlerosing Cholongitis for more than a few years to seek getting a scan of some type. We were told Shaun would need to start thinking about it after he'd had the disease for more than 10 years. Well, this marks year # 10 and he's gone. I could tell his doctors were devastated. Perhaps this experience will save some other person, who because of their youth and vigor, doesn't fit the exact profile of someone likely to succumb to cc.
My heart goes out to other people facing this horrible disease in their loved ones. I came to this site because I have had so much support these last three months and want to reach out, if I can be of any help to anyone else.