@colleenyoung Thank you for asking what is helpful to know beforehand. I'm 11 days post-op, so it's possible I will still be discovering answers to that in the coming days and weeks.

I used to work as a research analyst, so I like to know the entire lay of the land I'm getting into, from best case scenario to worst. I realize some people find it more helpful to avoid all of this and just trust the doctors and rely on whatever they tell you. The caveat there is to make sure that doctor is a NET specialist.

Otherwise, for someone like I am, being on a forum like this was invaluable. Doing a review of available journal findings, such as Pub Med, etc., was very enlightening. Since AI does not always give an accurate summary, I would ask it to cite all its sources and then look at that myself. Most people would probably not want to get that into the weeds.

Taking a trusted person to important appts and also asking the doc if it's okay to record them and doing so was really helpful. My surgeon gave some percentages on recurrence rates in cases like mine and none of the 3 of us present got that until reviewing it later.

I found it was helpful to take the first food steps slowly, not overdoing it (after no solid food for 5 days straight and wanting to wolf it down) . I mostly didn't need adult incontinence briefs but it gave me piece of mind to wear them in the beginning and they once saved me from messing the bed. So getting over my resistance to wearing them helped, though I no longer seem to need them.

I found a base of safe foods and how to eat them (e.g. learning not to do things like drink juice with my meal). Then I started adding one new food to that and recording how it went (which has been surprisingly good!) .

Another thing I learned. The people closest to me may not be the best ones to support me when I'm having emotions like anxiety or sadness. They're afraid too and they want me to be okay and happy and grateful all the time. Sometimes other people are the ones who can hear whatever emotions I'm working with and not be undone by that.

In my case, the reality of living without an IC Valve is much more doable than I feared it would be.