Please take your meds

I enjoyed remission with just 5asas since I was diagnosed in 2003 (with short courses of prednisone to control occasional flares). I decided to go off in 2009 and have been flaring since. Tried alternate treatments and then stopped responding to 5asas. I was non-responsive to anti-TNF inhibitors and immunosuppresants just didn't sit well with my body. My body seems to be steroid dependent from all the prednisone usage throughout the years.

Never go off meds without consulting your doctors, it could be the difference between a prosperous life and perpetual suffering. I've ruined my chance for a normal, flare free life - now I'm stuck in a state of constant suffering.

Young, single males in college are at the highest risk of not complying with medicines - go figure right? I thought I could beat this thing on my own throughout college. Instead, I inflicted damage to my colon that is irreversible. Surgery is the best option at this point.

Please, please don't go the same way I did - it just makes things worse. Don't think this is something you can "beat", it is a lifelong thing that doesn't just disappear, unless you are in denial like I was. Once you develop UC, very few people have it completely go away without treatment.

I hope I reach across to everyone thinking of stopping their meds - DON'T.

Don't beat yourself up though...there's a very good chance the 5ASA would have stopped working for you at some point anyway. Remember, not everyone can take meds due to allergy or being non-responsive.

Best of luck that you find remission again.

I didn't realize that I was supposed to stay on my meds -- I thought they were just to put me in remission, not keep me there.

But you know, I was probably also in denial. After my first flare, I had a very long period in remission and I really wanted to believe that it was a one-time problem.

SouthernGirl6 - Only as far as prednisone, which is what I am hoping you meant I just need to add this. The other meds that are to help prevent UC flares are important to take to help stop the progression of your UC.

Many and probably all people have only minor cases of UC with little affected area to start and either do not notice a problem or just ignore it. It progresses and affects more of the intestine and makes more and more problems until the whole thing is a big mess. This is where surgery and such end up being the only option. So any flare prevented is much better then a flare ending or just being allowed to continue.

All that being said I do believe we all need to do/try what we want to control our flares, we are the ones having them which gives us the only right to decide how we deal with it whether it be:
asking for a doctors help
diet
taking pred
or complaining about it (which is part of the reason for this forum, friends and family, lol)

What ever works the best for the person with the condition. We have to live with our choices and you can never be 100% sure of the outcome of with most things let alone this disease.

I'm not saying stop your meds by any means... but I do want to say that taking your meds does also not mean never flaring!!!!

I hope in my case my meds are keeping my flares manageable.... but I found it extremely frustrating that despite taking my 5ASA's religiously (only forgot twice in 7 years), I still flare.

If I hadn't flared as horribly as I did the first time, I would probably drop my meds. But I know how bad it can get and I'll never go off of them.

This is exactly what ended my 10 year remission. Stopping all my meds. Although for me it was a new GI that told me to do so.  I was in remission with just 5ASAs/Colazal during all that time too.  And had been using the enemas as well.

Try not to kick yourself over and over for what is in the past though. There is nothing you can do about it now. Just focus on trying to get yourself better and back into remission. You could still get there, it just might take a little different routine this time around.

Add me to the list of people who went off meds while in remission, and then got awful flares. Each one has been harder to treat than the last (although I firmly believe that had I been able to afford my meds the entire time, this flare would have been over with just mesalamine). Now instead of taking mesalamine forever, I have to be on immunosuppressants forever (assuming they get me in remission).

I will say, though, that my flares never came back on their own; I had to trigger them with antibiotics. Now I know better, but it's a bit too late at this point!

Same here. A couple of years after being diagnosed and in remission, thought I could get away without 5ASA so stopped them. Was fine for about a year then it hit me so hard and fast I thought I had appendicitis.

But having said that, it's impossible to second guess this crazy disease. I may have flared just the same even if I stayed on the meds. Unfortunately we only exist in a single linear time line, although I have some new age friends that might disagree with that lol.