The World Wide Web

Thankfully, I'm comfortable with the inter-web and found dozens of sources, articles, and even videos of JPouch surgeries, as well as just plain colectomies. Cleveland Clinic, Mayo, and other well known hospitals have been researching UC, Chrohn's, and different pouches and results for decades now. Thankfully, these are easy to come by, and, if you can handle some big words (and albeit, some boring filler), there is a lot of information to be had.

I also stumbled upon the JPouch.org forums, where it seems like coffee time all day long, and chances are, somebody has already had it and already had it fixed. It's been a wonderful source of information for use both before, during, and after surgery. This was an instant favorite bookmark, and became a daily regular visit.

After nights of research and reading, this seemed liked the right surgery to do, now it was just trying to find the right surgeon (and hospital) to do it. As we didn't want to have to travel to one of the major centers (ClevClin, Mayo, or NYC), we tried to find specialists within our region: I've seen what difficult hospital stays can do to families and I wasn't ready for that nor did I want to put my family through it.

Thankfully, my GI had offered some names he knew from his earlier years and other specialists that were near us. A good friend, who actually sells colorectal tools, got some names for me as well for other surgeons. We did some research, checked out the net, but had trouble finding any information on these surgeons. Well, let's go instincts and let's see how it goes. I like to interview candidates for work, guess this isn't much different, except now I should REALLY care who we hire.

The Phone Call

My GI called in late January to question why I had not setup a followup appointment after my scope in the prior month. As I'm usually doped up after the procedure, I don't remember him requesting, as this was not our usual relationship. When I apologized and asked when he would like to see me, his receptionist said "How about tomorrow?" Immediately, I knew it was going to be "that" appointment that I've been preparing myself for over the past two decades. "Should I bring my wife?" She hesitated and said "You should do what you think you need to do." All righty then, that does it.

We headed right into his office and, as I pointed out before, he prepared for giving me more bad news. They had the biopsies evaluated (and re-evaluated by a secondary, much more notable office) and both concluded there was low-grade dysplasia. The good news that it was low-grade and not cancer. The bad news, the likelihood of this eventually TURNING into cancer was 100%: The combination of almost two decades of UC and the PSC, it was a guarantee that cancer would appear. Now, statistically speeaking, it was 100% based on prior cases, but I could be that first case that doesn't get cancer. Well, I'm not that big of a gambler and I'll play the lottery instead.

As he's explaining the situation and what options we had (suggesting the JPouch based on my history), my son is sitting on my wife's lap, who is bawling her eyes out. In order to not have my son terrified of doctors (because he sees them A LOT), I continued to keep a happy face and a forced smile. At a certain point, I think the doctor was a little freaked out by that and that I wasn't really grasping the situation, but A) I wanted to make sure my son was comfortable and B) I knew this was going to happen sooner or later. I've done my crying, my denying, my anger, my depression years before. This is the day I always knew was going to come and was just waiting for. This sounds sort of grim, but I've always lived life that it wasn't free and nothing was guaranteed. As I had said prior, I never thought I'd live to be 35: This was just a few weeks short of my 36 birthday. Coincidence or did I make this happen?

My wife and I readjusted some of our priorities and started getting on the horn with some surgeons in the area and finding out what this whole "JPouch" was all about.  (I have to admit, the fact that it's called "Jay" had a certain ring to it as well.)