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

@athena - You are correct that choice of care team is challenging. The patient's trust in that team, led by the surgeon, goes a long way in mentally  preparing us for the procedure, allaying fears, and having a proper mindset to heal.

Thanks for writing about your experience. I think your comments about Dr Remzi are spot on. No doubt his technical skills are excellent. He's patched up many folks in this forum as he did you. I don't doubt he would have left me with a well constructed pouch, but the lack of clarity in communication about what to expect left me uncomfortable, and fortunately there were other options.  

Since the surgery I've read a lot of research papers and attended The Annual Dr. Victor Fazio Ileal Pouch Symposium the past two years. From listening to these top surgeons in the field it's clear that having the pouch created properly in the first instance is of utmost importance, and many surgeons are likely doing them without the necessary training and/or experience.  Hand sewing v. stapling, open or laparoscopic, whether to perform the mucosectomy, even the two techniques for anastomosis at the pouch inlet - these are things that most of us, not being surgeons, don't ask about, so we don't participate in the decisions though we live with the consequences. A proper informed consent would cover these things and more.

I wonder, though, if any of the surgeons, or the gastroenterologists who refer us to them, are doing a good enough job of explaining the challenges most of us face learning to live with an Ileal pouch,  even a well-constructed one.  

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