Diagnosis

I've considered starting a real blog a few times in the past. I used to have a small, low traffic blog a while back that was just between me and a few online friends, but I'm talking about a real blog. A blog where I talk about my life, not just exchange jokes.

The reason I've considered it is this. I've had ulcerative colitis for close to 20 years now. Between the difficulties of the disease and difficulties of the medicines, I thought maybe writing about it might be theraputic for both me and for somebody else going through what I have gone through.

Well, because I lagged and didn't start the blog back when I should have, back when the worst I could say was "I've been living with ulcerative colitis for X years", I have to start it now when I wish THAT was all I had to say. No, now, I have been given a harder pill to swallow. So now, I'm going to cut to the end and tell you about my most recent news, and then I'll fill in earlier details later as I have time/energy.

So, it goes like this. It was back in 1988 I believe when I was diagnosed with ulcerative colitis. Life has at times been very hard, but survivable. As I said, I'll fill in some of the details later, like getting down to 139 pounds (and being over 6'), and "who designs building with only one bathroom?"

For now though, jump ahead to October 2007 when some blood tests for another problem showed "abnormal liver function". After more testing, it was determined that I have "Primary Sclerosing Cholangitis" which, as I was told "is not a good diagnosis to have". As I understand it, it's found often in people with ulcerative colitis, sharing the same cause, and has a diagnosis that commonly ends with "you'll likely need a liver transplant in 10 years or less and you have an increased chance of liver cancer."

My first thought was "Damn, that sucks!" Actually, the rest of that day (my doctor called me on a Sunday), and most of the next day, I think that was the G-rated version of what I thought. By Tuesday though, I was trying to change my focus. I started really trying to focus my thoughts on "A lot can happen in 10 years. They can already do transplants, so who knows what kinds of stuff they'll be able to do in 10 years... that's a long time." Of course I remember thinking that when I got ulcerative colitis and I'm still struggling with it 20 years later, but I'm trying to remain optimistic.

OK, I pretty much had moved on from that diagnosis when I went to have a colonoscopy in the beginning of November 2007. The results are in, and they aren't good. Multiple biopsies were taken and it shows an adenocarcinoma (cancer) and "at least high grade dysplasia", or early cancer. Actually, the pathology included things like "moderate chronic active colitis with extensive ulceration" as well which would normally make you freak out if it weren't preceded by cancer.

So what happens now? Well, according to the doctor, and the couple of doctors that he had review his findings and sign off on it, I need to have my large intestines removed. Soon! It was supposedly a good thing we caught it when we did, which is why it's so important for people, especially those with ulcerative colitis, to have colonoscopies. Blah blah blah! To be honest, while logically I know I should be grateful we caught it early, I really don't feel very grateful. I feel like kicking the doctor in the fucking balls. No, not really, but dammit, what the hell? Remind me later to tell you how fucking unfair this whole thing is.

So yeah, they're going to take it out unless I pull a rabbit out of my ass....well probably then too. How is this going to affect my life? I'm not sure, but it can't be too good. After they take it out, is that the end? No! I may need chemotherapy or radiation too, but we won't know that verdict until surgery. It is the end of the possibility of colon cancer. It is NOT the end of my liver problems however. Removing the colon removes the result of my ulcerative colitis, but it does not remove the cause which is likely causing my primary sclerosing cholangitis too. I need to meet with the surgeon that will do the cutting, probably some time next week, so I'll know more about how this will play out after that.

That's all for now, I need to use the bathroom.
-jk