I met with a surgeon today. Dr. Bafford spoke with Deb and I for about 15 minutes which is good long time for a consultation. Here's the bottom line - she's recommended that my colon remain safely nestled in my own abdomen - for now at least.
After a quick background on my issues and reason for my visit, the doctor answered a number of questions. Most notable is that the options for reconstructive surgery with the so called "J" pouch should still be available if dysplasia (pre-cancer) is discovered. The caveat is that if the growth is found to low in the colon, then it may not be possible, but the likelihood is small.
The other concern that she shares with Dr. Ali (Gastro), is that with a diseased colon like mine, it is possible to overlook dysplasia. This means that the trouble could be found as cancer and that with immunosuppressed folks (like me) cancer can spread pretty rapidly.
We talked further about the complications and potential risks a J pouch surgery can cause. They range from minor seepage at night, to ED and other things even more rarely. There is always the possibility that the J pouch cannot be formed as well. That's dependent on the ability to pull the small intestine down to the rectum. This is physically not possible all the time and results in a colostomy. I'm told there's not restriction to having this done. In other words, you should be able to do anything you want - swim, run, hike - whatever. That alleviates some of my concerns.
We also spoke of the chances of cancer, and Dr. Bafford gave numbers similar to what Dr. Ali cited. So, 4 to 6% for normal healthy people, and 20ish for folks with PSC and UC. Her caveat though is that there's no firm numbers for a specific person. They do know that having active inflammation increases the risk, but there are no good quantitative numbers for that. In the end she concluded, as I've mentioned, that she does not recommend removal at this point.
Dr. Bafford did a quick review of my belly. On her first glance, I think she suppressed a laugh or something. She asked about a couple of the scars, and asked how well I healed. This led to the comment that "you're not going to be a candidate for laparoscopic surgery." Yeah, I didn't think so. In case you are wondering, it's because there is far to much scar tissue. I thought it was pretty funny, and we all had a slight chuckle out of it. We shook hands as we said our goodbyes, and the Dr. said "nice meeting you, and I hope we don't have to meet again."
It also happened that Dr. Ali called this afternoon. I gave him the run down of my visit with Dr. Bafford - whom he knows. The short conversation focused on the next steps. So, the best thing we can do is to try to get better control of the colitis. He's still suggesting the use of Remicade which is a high powered, long lasting IV med. There's risk with that though, and I need to get clearance from my transplant team and their Infectious Diseases doctor. I've had bouts with Cytomeglovirus, and am still on a drug to keep that at bay. The Remicade could make CMV worse if its still present. The difficulty is that Remicade has a 6 month half-life!!! It's in your system a really long time, so if it's causing trouble, it going to cause trouble for a while. So, this needs to be a cautious decision.
And that's where I'm at, I need to make an appointment with VCU (transplant), and get some more guidance.
Right now I'm relieved, though I don't feel I'm totally out of the woods, and there's still the ever present and somewhat unquantified risk of dysplasia or cancer. My only photo for this post is one I put up recently of the water running through the causeway at Solomons Island. It's perfect in that it's very abstract and you can hardly tell what you're looking at. You may notice some beams running horizontally. You'll see a section of water over a sandy bottom, and other areas of reflected blue sky. I'm relieved, but still have some uncertainty. That's why I like this photo.Thanks for the prayers, and thanks for listening.
Peace,
Brian
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