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Reply to "NEED NEW DOCS IN NYC-CONNECTICUT AREAS."

@athena,

I think the referring doctors, the gastroenterologist who serve as our de-facto primary care doctors for chronic illness, ought to do their own homework before referring us to a surgeon! And they should have more than a passing appreciate of the range of functional j-pouch outcomes.

I am an attorney who practiced healthcare law, including litigation. I'm married to a gastroenterologist and most of my adult life I have been surrounded by them, attended their conferences, read papers, and have met many of the world's  leading gastroenterologists and colorectal surgeons.  

(Its funny that while surgeons tend to adhere to the "old school," gastroenterologists now tend to offer a "new school" menu of medicines, mostly biologics these days, leaving it up to the patient which to try, and only disclosing consulting fees if they're lecturing to other doctors.)

As a 40-yr+ UC patient, I'd spent more time than most contemplating both the inevitability of my own bowel surgery and the nuances of informed consent to treatment. Still when it came time, my own surgery was frightening, and my capacity to absorb surgical details was limited. I'd read some about average complication rates, but I wasn't in a state of mind to cross-examine surgeons.  I very much relied on them to offer sufficient information to me about their approach and alternatives to allow me to make a good decision about whether to proceed with a J-pouch, consider a k-pouch, or stick with an ileostomy, including relative complications, recovery times, and how differences in surgical approach might impact me.  

I never contemplated having surgery at my local hospital, even if there was a surgeon with enough experience. I've seen many cases of medical liability arising from physicians (or their family members) receiving less-than optimal care at their own facilities, because "professional courtesy" slips into loss of objectivity.  Tends to be less of an issue I imagine at major centers.  I hope that's not what happened to you.

Our surgical charts will all say "explained alternatives & risks, including infection and death". We always sign a consent form that says surgical plans may change gears once we're in the operating theater. But real meaningful engagement between physician and patient to reach true informed consent is an art.  It's relatively rare in surgery, I fear. And it's very hard to teach.  I'd say your own terrible luck has made you an expert and given you a unique perspective. Thanks for sharing it.

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