An unusual UC story? seeking advice

Is my story unusual? I was diagnosed with UC in 1995. I have only ever had two flares: the one that led to the diagnosis, and one 10 years later when I went off all my medication (at the advice of a truly idiotic GI!) upon giving birth. I have never, knock on wood, had to take pred or anything stronger than mesalamine.
On the other hand, I think I may be taking more mesalamine than anyone else on ths forum, and wouldn't mind trying to take less. I also do worry about my UC getting worse over time (and some signs show it might be). So I feel like an ideal candidate for just trying some non-drug approach on top of the mesalamine. Am considering VSL 3. Have read about the diets, but I have to say I am a major foodie and the thought of them really depresses me (except maybe the anti-inflammatory diet, which is really just the Mediterranean diet, no?).

In a nutshell my story is this. I did have severe rectal inflammation when first diagnosed, but mesalamine (as enema and pill) calmed it down a lot right away. I still had occasional blood on and off for a couple of years, but nothing that resembles what I now know (based on my second experience) to have been a real "flare"—at least as most of you guys on this site describe it. about two years later I was in total remission. I took Asacol + Rowasa for awhile and then got it down to just 6 Asacol a day for 3 years.
Then I moved to a new town/job while very pregnant and had some concerns about Asacol and breastfeeding. This moron GI said blithely, Oh sure, just go off the meds, if you flare you can just get back on them. On top of this I had to take some antibiotics, and sure enough, whammo! (I now know flaring postpartum is entirely typical.) I had a TRUE flare for about 6 weeks, many BMs, tons of blood, cramping (I had never known before what they even meant by "cramping"!) before the Asacol finally kicked in again. In that 6 weeks I was in a state of total panic, exacerbated by postpartum anxiety which was quite severe (darkness of winter in a new town where I knew no one, as a new mom), terrified I'd have to take pred and it would make my psychological symptoms worse. I kept upping the Asacol dose out of this fear, till I was taking 12 a day + an enema.
Then it did start to turn around, and gradually all the symptoms went away. Except about 8 months later I saw a little blood again and freaked out. My dr. knew I really didn't want to do pred and suggested adding a second Rowasa a day. So now I take 2 of those. At one point, to try to see if we could wean me off one of them, he suggested upping the Asacol to 16 a day. So now I take 16 Asacol + 2 Rowasa a day! Plus 2 Culturelle and 2 Florastor. I have tried a few times to cut down starting with that extra enema, but always get a sort of "awareness of my rectum" feeling that makes me nervous. The bottom line is, I spent about 10 years thinking I had "super-mild" UC, and then this second experience (where a bit more of my colon was involved, also) made me worry. I always think, on the one hand this regimen is not ideal, but I'd still take it any day over any of the other meds!
In the past year, though, I've had more symptoms of just discomfort of a kind I associate with UC. Still no blood/cramping/more than one BM or anything, so not a real flare. But the dr. did say there was a little rectal granulation (though no active colitis) on the scope I just did. I'd really like both to head off any possible escalation at the pass AND maybe cut down on the drugs, if I can.
Does anyone have any thoughts?? I feel I have been VERY lucky--but that also makes me feel like I have the luxury (maybe) to be more proactive.

Hi and welcome.

I don't think you sound all that a-typical. But then again, I don't think there is such a thing as "typical" UC. I think that the idea of switching one of those enemas for Canasa is a pretty good one. You could also think about the 2g (I think) enemas instead of the standard 4g. They have the same amount of liquid, so you treat the same amount of the colon, there's just less mesalamine.

But honestly, if this is what it's going to take to keep you in remission, I'm not sure I'd worry all that much. Like nssg said, songlady has been on 16 Asacol for a long time, and uses enemas as well (not sure how continuous her enemas usage is).

Do you think it could possibly be a bit of you head playing tricks on you that you start feeling weird if you cut out one of the enemas? Please don't take this the wrong way!

Thanks for these kind and generous replies, all of you (and sorry for not being able to thank you sooner-- we've all been under the weather around here).

The Canasa is a good idea. And I am very glad to know I am not the only one taking 16 Asacol!

Along with the probiotics, I wouldn't mind trying to introduce some non-extreme dietary changes. I do think cutting down on sugar could help. Fruitgirl, are you fruitgirl because you eat tons of fruit?

I'm off all medication. I've been using alternative methods that do not harm my health and are keeping me in remission. I have also found them to be more effective in treating my condition.