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Reply to "Getting a permanent ileostomy"

Hi, Blood Stained Warrior.  

As you go through the process of information gathering and research, another source of knowledge can be peer resource, or a peer patient. If you reach the point of talking with a surgeon, you can ask him / her if you can talk with one or two of their patients who have gone through the surgical procedure. Some doctors keep a roster of former patients who are willing to be a peer patient, or a peer support. You can ask your peer support all kinds of personal questions about their experience from start to finish. When I was facing j pouch creation, my surgeon let me chat on the phone with three of his patients, separately and privately -- a 20 year long patient; 10 year patient; and a two year patient -- so I would hear a wide range of experiences, old and new. It was very helpful because I would have the same surgeon, same hospital, and likely the same team working on me. Along with some helpful posts on this site, a peer support patient can walk and talk you through whatever direction you decide to go. Similar to having a mentor.

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