This probably isn't going to be helpful at all, because I haven't been formally diagnosed yet (it's almost certainly some type of IBD, but it has hidden well on tests so we don't know for sure what type or any of the details). But here's my experience, in a nutshell:
I got sick in Oct 2009. Spent a year going through many tests, nothing definitive came from that. By Oct 2010, my GI could see that I was frustrated, and he was too. I had already done a short pred trial and responded well, so we already knew that I responded well to steroids. So, he put me on Entocort in an effort to get me into remission. It worked, by spring of 2011 I was off of Entocort and in remission. Asacol was my maintenance med at that time and that was enough to keep me in remission for 2 years.
In spring of 2013, they stopped making regular Asacol in the US, so I had to switch maintenance meds, and I had a bumpy road with that. Regular Asacol was 6 tablets and I'd normally pass 1 or 2 in my stool each day, but I'd absorb 4 or 5 and that was enough to keep me in remission. After they stopped making Asacol, my GI tried me on Asacol HD, which is 2 giant tablets. And, again, I'd pass 1 or 2 in my stool each day, which obviously was a much bigger problem when I was only taking 2 tablets per day. So at that point I fell out of remission and into a mild flare.
My GI then tried me on Delzicol, which is basically a regular Asacol tablet inside of a capsule. Even harder for my body to break down, so that didn't work (and I couldn't take them out of the capsules, because the tablets didn't have the special coating and wouldn't work like regular Asacol). Then I tried Pentasa, which worked so-so. And then finally Lialda, which worked okay for awhile, until last year. (Because I'm not officially diagnosed, my GI is very hesitant to try me on any of the stronger IBD meds, so that's why I've been on so many mesalamine formulations.) I got close to remission again with Lialda but I don't think I ever really quite got there fully. During that time I also had another stint on Entocort to try to get things under better control, but again, I don't think I quite reached remission. So I stayed in a state of mild flare for about 3 years during all of this.
In May 2016 my grandpa died, and then in June we had to put my grandma into a care facility because of her dementia. That was a highly stressful and emotional time for me, so as a result, in July 2016 I flared up in a big way. My GI put me back on Entocort right away, but this time it didn't do anything, my flare must have been too strong this time I guess. I lost 17 lbs in a month, got to the point where I couldn't digest anything, couldn't eat nor sleep nor really function, and in August I was hospitalized for 5 days. They put me on a liquid elemental diet and IV steroids and then an oral pred taper (starting at 40 mg).
I've been sort of slowly clawing my way out of that flare ever since. I'm finally starting to see the light at the end of the tunnel, I think. I'm now down to 7 mg pred (tapering by 0.5 mg per week because I failed repeatedly when I tried to taper by 1 mg per week). I'm also now on LDN along with the Lialda for maintenance, and I think LDN is helping. And I'm trying to mostly stick to a low-FODMAP diet which is also helping. It's taken a long time, but I think remission might finally be in sight. I've felt really well recently, been working out again which feels wonderful, and my guts have been almost suspiciously quiet. I'd just love to get off of the pred already and be properly back in remission, that's the goal. It's been a very bumpy road but hopefully it still leads to remission.
Sorry that was so long! That's just been my experience. 7 years ill and undiagnosed, 2 years in remission out of the 7, and trying to get back into remission now.
