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Lili, ask your surgeon if he has a list of patients who have gone through this surgery with him, and ask if you can speak with them privately. These former patients are known as peer supports. Just like everyone on this site.

The difference is the surgeon’s former patients have gone through the same surgery with him / her and possibly with the same medical team who will surround you during your surgery. You can ask the peer support person how they made it through, what the surgeon and his / her team were like (and I include their office staff because secretaries are the gateway to the boss), ask what they experienced during their hospital stay, pain management, the level of after-surgery care from the team, what they did when they got home, tips, advice, everything.

My surgeon has such a list and I was given three names to call and ask them anything. They were in different peer stages: one was a year past her surgery, another was five years past, and one was 20 years. So I got a good picture of what was coming. We didn’t share last names, just first names, and after my surgery I didn’t need to talk with them again, and I came to this site and found thousands of people. It was so helpful to me. I was the same as you are now, UC for 30 years, regular colonoscopies that showed mild inflammation, and then dysplasia, and a malignant tumour stage 1. That was six years ago. I saw my surgeon regularly for follow ups every six months for pouchoscopy and CT scan of my organs, then “graduated” to the senior class and now see him every two years for pouchoscopy and CT scan. I feel great. Now I am a peer support for other patients.

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