I've had UC for 6 years now and I've been on pred 3 times but 2 of the times it was only for 3 days to help kick start me into feeling better faster while flaring. The last time was about
a year ago exactly now and it was for a month and I requested to be put on it so I could have some relief from the urgency of having to go the the bathroom all the time so I could go camping. It worked, so good that I was afraid to come off of it but I couldn't stay on it any longer with the side effects. I ballooned up from water weight which became painful when my feet, legs and stomach would swell, I've never been pregnant but I imagine that's how it felt since I had to waddle like a pregnant lady too.
My doctor has NEVER been a fan of me being on pred, he avoids it at all cost and refuses to keep me on it for very long. He is very aware of all the damaging side effects and does not want me to have to go through that. I have also taken Entocort which is another steroid but with way less side effects especially in the long run. I've been on Entocort about
4 times I think and it has put me into remission every time and then I ween off of it when I'm in remission. This last time when I got off of the pred I started to slip back into going D more often so my doctor put me on pred and entocort. Since Entocort takes about
a month to get into your system he had me on pred at the same time (only for a few weeks) to keep me from flaring any worse while the Entocort took it's time to kick in. I have not had any side effects from the Entocort, at least nothing too noticeable. Definitely NOT like the side effects of prednisone. There isn't a set number of times that you can go on and off of pred before you have to resort to surgery. There are a bunch of different meds out there to try before you should resort to surgery. My doctor is the kind to do surgery only after we've tried everything else first. Having surgery doesn't really change much because you will still go to the bathroom a lot and it's not a cure because the disease can just come back in a new area of your intestines. You should definitely do your research on all the meds out there and definitely ask your doctor tons of questions if you have them. Often people are too afraid to ask questions or make suggestions. I am constantly researching meds and asking questions and making suggestions and often my doctor will take my suggestions and we try new meds. I have a great doctor though, some people don't get so lucky to have great doctors. Your doctor may tell you that Entocort is only for Crohn's but that is not true, it is marketed for crohn's and has been tested on crohn's patients yes but it also works for UC...I'm living proof. I recently had a friend ask her doctor about
it and his reply was "it's for crohn's" which is BS b/c if it works for UC why not try it??
Have you tried Imuran or Remicade or any of the other meds out there yet? Or any of the other 5 ASA's?