It can be lonely--I know what you mean about people not wanting to hear about GI problems. But I have basically no TMI filter. I've talked about my poop and my butt and my guts in more detail with more people than I ever would've imagined before I got sick. None of it grosses me out anymore. (I'll confess I sometimes mention details to my more squeamish friends for a little bit of a laugh.)

My UC is somewhat controlled but not in remission. I've never been able to get into remission. With UC, about 1/3 of patients go into remission without drugs, another 1/3 go into remission with drugs, and another 1/3 never manage to go into remission. I imagine the statistics are similar for Crohn's, but I couldn't swear to that. I also know that with UC, the more of the colon that's affected, the harder it is to achieve remission, but I don't know if that holds true for Crohn's as well. (In UC, the ulcerations are usually continuous, but in Crohn's, they're patchier, so it might not be the same with Crohn's.)

For me, pain is manageable unless I'm in an active flare, but then it gets unmanageable. When I had my first flare, it totally redefined the pain scale for me. While I've never managed to get into remission, the pain and other symptoms are MUCH better now that I'm on meds that help. There's definitely hope! But it pisses me off that your GI doc isn't doing anything. IMO, it's unethical to let a patient suffer for months while you're waiting for more tests. When I first got sick, before they knew what it was, they immediately started me on meds. Granted, they didn't help at first because they had me on the wrong meds (they thought it was C. diff. at first, not UC), but at least they were trying. And they were giving me pretty much the strongest painkillers. They still weren't working that great, but again, at least they were making an effort to do something. I had a colonoscopy on the third day of my admission, and they immediately started me on steroids and 5-ASA's.

Do you think your GP would be willing to prescribe something while you're waiting on the GI doc? The 5-ASA's are generally the first-line treatment, and they don't have scary side effects. (Most of the other meds used to treat IBD do, but don't let that scare you off--those side effects are rare.)

I've also really benefited from dietary modifications. I cut out dairy, eggs, gluten, and corn, and I limit fructose, fiber, and caffeine. The diet's a pain in the butt to stick to, but it decreases the literal pain in my butt. Different IBD'ers have had success with different dietary changes, so unfortunately it's kind of a trial and error process. Also, it can take a few months to see meaningful results. It wouldn't help you right away, but it might be helpful in the long run.