dschreffler wrote:Thanks Galen - appreciate the perspective. I met with Dr Weiser at MSKCC a few days ago and discussed both options.
Weiser is my CRC surgeon as well. If he does your surgery, you're in pretty great hands. Dr. Sparkly Eyes specializes in minimally invasive surgery, and he hasn't (with me) overestimated his skills. So if he says he can successfully do a sphincter-sparing surgery, he means it. At the same time, if he recommends (as he did for me) that an APR is your best choice for beating recurrence, then he's not kidding around.
So far, from reading posts on this board and others, I have seen the following pattern:
1) Those who chose the bag wanted the control and greater margin for cancer removal.
2) Those choosing not to have the bag felt the effort to retrain, manage effects thru med/diet, and the longer recovery/complications were worth not having bag, but I have not heard why that is yet beyond an emotional stigma against the bag(?)
I've made both of these conclusions very simplistic and my intent is not judgmental, but to seek understanding on this big decision for me... hence why I'm asking folk for more insight on why they choose what they did.
No judgementalism implied nor taken.
But that said, I guess it would be clearer to say that I didn't 'choose the bag,' as you put it. I chose an APR, which meant a permanent colostomy, which involves an ostomy bag. Distilling all of that down to 'choosing the bag' is more than an oversimplification. That afternoon, Dr. Sparkly Eyes was telling me that, because of where my rectal tumor was located and how seriously my cancer had progressed with NO symptoms until my liver was almost in failure, he didn't see much point in proceeding with my hopefully curative liver resection if I wasn't willing to take the precautions of an APR to reduce my recurrence chances as far as possible.
To be honest and fair, potential fecal incontinence never even came up and it wasn't a consideration in my decision. I was trying to figure out the most effective surgery to keep me alive.
Am I making life with the bag too rosy and missing some great burden for maintenance?
I don't think so. My 'maintenance' of my ostomy takes me about 5 minutes each time I use a bathroom, which I only need to do 3 or 4 times/day (depending more on how much water I drink, less or nothing on how much or what I eat...) Changing my appliance (applying a new wafer and bag) takes me 10 minutes about every 5 days. I can and have changed my ostomy appliance in an Amtrak bathroom while the train was moving, in a public restroom at a campground, and even in a porta-potty at a dog agility trial. It took me about two months to get that good at changing it quickly. My emergency supplies fit in a zipper bag about the size of an iPhone. When I travel, I make sure to carry enough supplies to get me through the trip, with some extras, because you can't really walk into a regular drugstore and buy extra ostomy stuff in most places. So I have the equivalent of an extra 3-1-1 ziploc bag to pack when I travel. It's just not a big deal at all.
Is it a mental adjustment? An emotional adjustment? A self-image adjustment? Yeah. I'm a woman, and there are moments when I don't feel beautiful, or whole. But a huge part of that is about the cancer, not the ostomy. And those moments only come on once in awhile. We all have them - ostomy or not - but I'm working on mine. I'm not beauty queen ostomate or mountain climber ostomate or surfer girl ostomate - but I'm doing ok, and the amount of stress my ostomy causes me on a daily basis is minimal to none.
The main ostomy drawback I've experienced, Dan, is that because of my posts about ostomies on this board, I've apparently earned me a blog spammer (who knew?!?) My spammer is pretty troubled about her own ostomy, was permitted to post a few anti-ostomy posts here as a guest, and now makes filthy, insulting anti-ostomy comments on my blog after I answer any ostomy-related post on this board. Ah well - that's why blogs have spam filters and who-is service lookups allow bloggers to report individuals to their internet service providers. Other than that, Dan, no drawbacks and no over-rosying of the options.
Hope that helps. Tell Dr. Weiser that I said hello.