Yep, I would actually go in and have them look at your pouch.  Also it is very common to develop interstitial cystitis,which is a bladder irritation of epic proportion, alongside of the rest of what we are dealing with.  Let us know what it turned out as? 

Also, what are you eating for food?  Lot of low cooked veggies or heavy roughage? Many foods don't break down easily and can lump together and that is NO fun.

Secondly if you were to guess, how much liquid are you drinking a day, and how much coffee/caffeine?  

I was eating my regular diet, but moved to my 'Things going wrong' diet of mostly rice and grilled chicken.  I was also having a morning caffeine dose through tea that I stopped too.  I drank that first thing on an empty stomach, but I didn't want the possibility of caffeine causing any kind of inflammation or other problems.  

I'm kind of at my wits end with it all and ready to just get a permanent bag.  I'm tired of feeling like I can't go do things or hang out with friends, and when I do go out feeling waves of anxiety and nervously eyeing the bathroom door every 5 minutes.  I don't want to make any hasty decisions, though.

Hi you!

What's your regular diet?  Tea on an empty stomach can be really rough on the digestion. Maybe water or chamomile tea first if you need tea, some light food and then tea? But caffeine in general is really dehydrating. Even green tea which is my personal favorite. (Alas my favorite Jade Green Tea is only in moderation for this gal).

I know it's tempting but really, making too hasty of decisions gets us in trouble, I totally get the feeling trapped by your body right now and the utter rage and deep anxiety that come with that.   Our bodies rock really hard like a small boat in a big ocean in a crazy storm when they get out of control, but our bodies naturally want to settle back down again and become manageable.  These bouts would be here then too in new ways and you may have other issues besides... often, somewhere else other than here seems like it should be better, but often, the locational cure often just creates new issues I'm afraid.  

MRD, the combination of urinary and defecation symprtoms sounds structural to me. Perhaps you've developed a rectocele or a pouch prolapse? I'd guess that changing your diet may be of little or no benefit. It's probably time to visit your doctor for a proper diagnosis, particularly before thinking seriously about abandoning your pouch. 

Thanks guys.  Saw the surgeon today.  Got put on a round of cipro for pouchitis and going to have a pouchoscopy in a couple weeks.  Surgeon thinks it could be a few different things, some as simple as a combo of the pouchitis and a stricture.  Hopefully a few pills and a balloon while i'm asleep will fix everything.

MRD, dId the surgeon have any thoughts about the urinary symptoms?

He said it may at least partially be caused by inflammation and wanted to see if the Cipro helped.  

Just an update - had a pouchoscopy today after a run of Cipro.  The Cipro helped a bit with the urgency.  After my scope the surgeon said that when I had my pouch put in, the surgeon left 3-4 inches of rectum instead of the usual much much smaller amount.  What's left of my old system was highly inflamed and had a number of polyps in it, which he removed for biopsy.  He thinks the structural issue of having so much UC-affected pipes left is causing a lot of the urgency, though my pouch was inflamed as well.  He recommended going on some strong anti-inflammatories (either suppositories or enemas) to try to get the situation under control.  He also talked about the possibility of a take-down surgery to remove most of the inflamed leftover rectum, but said he would probably refer me to Cleveland Clinic where they do a number of those procedures.

I'm unhappy that the surgery wasn't done "right" the first time, but can't really complain since I've made it 3-4 years before encountering serious issues.  Has anyone else ever had a pouch take-down to remove excess rectum?  I'm curious to hear anyone's experiences with that particular surgery.

This is generally called "pouch advancement" surgery. There are a number of folks here who've had it, and I'll leave it to them to describe their experiences. FWIW, now that you have a proper diagnosis, perhaps medical treatment focused on your cuffitis might work well enough to avoid further surgery.

Oops, pouch advancement is what he said.  I was a little anesthetized still and couldn't remember the term.  I'll look around and see if I can find threads about it on here.  Thanks Scott!