Matt, your story is similar to mine some years back. My problems were always in the left colon except for a hint of something years earlier at the terminal ileum. This gap between trouble areas is called a "skip lesion," and it tilts the scales toward Crohn's (UC tends to be continuous/connected in a single uninterrupted area, even if it's a large area). Because of the Crohn's suspicion, several surgeons refused to make a J-pouch for me. I found a more aggressive one, and have so far had about 14 good years with it. My situation isn't perfect, since I have to be on antibiotics all the time, but I feel good and certainly don't limit my activities. Since the surgery I've learned to scuba dive, studied Japanese Ju-Jitsu (and I now teach it), and have made up for what I think of as the "lost decades" of IBD. I took a risk, though, and not everyone gets a good result, particularly if Crohn's is a consideration. I leave the house without a second thought, but I'll prepare in small ways for bigger events - mainly by 1) using the toilet, and 2) eating lightly and taking Lomotil before longer times away from the bathroom, like getting on a boat.

Good luck!

Why didn't you have them just take out the bad section?  As of the last scope he saw no signs of active colitis.  The surgeon had said if it is Crohns she would just remove the section with the pseudopolyps  and leave the rest.  She wanted to see the results of the CT scan and since I had it the same day as to consult they weren't available.  

So who knows...

Mattez,  Just to answer your question.  Yes, the fear does go away.  If your pouch functions as it should, you usually are not worried about having to go all the time.  Sometimes there are conditions that bring on the fear (pouchitis, obstructions), but for the most part, the kind of fear you are asking about is gone (in my experience).  Everyone is different though.

When I  was first diagnosed in 1997 my UC was in my rectum and left side and way over by my appendix leaving a big area disease free.  Every test since then up to my j-pouch surgeries was UC.  By the time I had surgery it was pan colon. I see why your surgeon is retesting and really don't know which one to hope for. Maybe just cutting out the bad parts is better either way. Before people disagree, I know they remove the entire colon, except the few cm in our rectums for a reason.  This is toured as a "cure" and many of us that have/had  chronic cuffitis  (UC ) and/or chronic pouchitis and strictures etc. might object to calling the removal the "cure". 

many people confuse the frequent bowel movements and the likely loose nature of them while on a jpouch as the same or equivalent to when you fought a diseased colon (or patch of colon), this is not the same. the overarching benefit of a jpouch is two things in my opinion. by and large you wont exhibit pain like you did prior, nor will you exhibit urgency. that is except for if you battle pouchitis and or cuffitis. these happen but are not predominant. the other issue that you don't mention but must be aware of is that removing the colon, removes your risk of colon cancer. life is not perfect and its not really a cure, but its preferable to battling a heavily diseased colon if that's what youre contending with.

Lots to consider. I know many that had colon cancer and just had it and comfortable margins on both sides removed. They didn't remove their entire colons. Their recovery was faster than mine was. 

Most j-pouchers don't have problems that we discuss here.

Matt, I discussed with my surgeon just removing the bad section. It wasn't at all clear what sort of a result I would have had without a rectum. I don't know if they were doing colonic J-pouches in 2002. In any case, as DeweyJ points out, the lifetime risk of colon cancer for someone with UC is extremely high, and I got everything done with one procedure.

As a 30 year poucher, the fear does go away.  As you face each issue (and for me there were many times when things were going really well - especially when I was young) - I lived without fear.  Even now, as the pouch has gotten a bit less reliable - I still don't live in fear.  But, I do make plans differently now and I choose not to do certain social activities where I will have to be with a group and no rr privacy - for example - a club I'm in had a weekend retreat - shared RRs in a camp like setting.  For me, the answer was "no thank you."  This is a very personal decision.  Others have gotten on me and said, "get out and live" - and I think that's great too.  I think the key is to do what is comfortable for you.  We are all different and there is no one size fits all solution to how to manage the pouch.  But, I do not live in fear at all.  And, I worked a stressful job 23 years with pouch and very little access (or time) to use restroom.  I just sucked it up and did it.  The only way I could cope was to make the choice not to live in fear.  Obviously, there have been ups and downs and times when I'd get a blockage or something and I was afraid - but those were finite times of fear.  I hope you will be pleasantly surprised as to how good life can be with the pouch - especially with the newer, more modern versions.  You can do this!!! And, if you need support, type away and you'll have an army of people out here who have been through whatever situation you are dealing with...and can really help alleviate fear when you are going through a rough patch.  Take care.