Can't believe I am just finding this site...

I am so happy to be here!  People try to understand but...."they think they know but they have no idea"!

I am in the middle of a major flare.  I have been so darn sick, and tired.  This blood will not stop.  My Doc(whom I love) is very anti-pred but it has been the only thing that has worked for me in the past.  He has prescribed entocort ec for me to get me back into remission but it is not working!  Anyone tried this steriod?

I am about to go into my "stash" of pred!  help me!

 

Last year I had a major flare right before my wedding and my doctor had always put me on prednisone which has always worked for me. However, I didn't want to be put on prednisone right before my wedding because I HATE the side effects and the last thing I needed was to become an emotional rollercoaster and gain too much weight to fit into my dress (which always happens to me when I take it). So, my doctor put me on entocort and within the first 24 hours I was feeling so much better. It was my miracle drug! :) I stayed on it for 2 months and was still good once I went off of it. How long have you been on it? It worked very quickly for me but I have talked with others who it has taken longer to kick in for.

I have been on the entocort ec for about 9 days. Taking three a day. I was so over it this past Sat I went into my pred stash and have been takin 20mg of that a day. Today is the 4th day. I am all over the place! I didn't even call my doc and tell him I was doing this, he would not be pleased I am sure. He always wants to send me to the ER when the blood is not stopping and I just don't have time for that...I have missed enough work. Maybe I should do the nightly enemas also.....I am so over it

i took prednsione for a month... and my GI said it is not dangerous as long it will not exceed a month.. the only side effect i had was.. a Moon face... increase of apetite..(eating like a pig) and had a hard time to sleep...

Hi! Welcome to HW! I think many of us we super happy to find this forum - what a relief to have other who UNDERSTAND!!!

As for your pred situation - I really think you need to discuss with your doc. Pred is not a med to be used lightly. However, I have gone to my "stash" before too. It's not something I'd recommend. Your doc needs to be able to trust you to take his advice - just like you need to be able to trust your doc. I'm sure the two of you can work something out.

I would really suggest the enemas - steroid or 5ASAs. They do take some time to work - and a bit of getting used to. I don't remember any soreness from using Rowasa... Maybe another thing to talk to your doc about...

The part of my colon that is affected is the lower "ileum"?...I guess near the rectum..which explains a lot! LOL.  I am taking pred(20mg) and tapering..lialda,mercaptupurine(sp)?, folic acid, and some multi-vitamins....I was asacol for the first two years. Doc just switched me to lialda(less pills to take thank GOD)!  Also I have done the rowasa enemas and even had a couple rounds of the remicde treatments.  Yep, I've done it all folks........

Ha! I've read whole novels in the bathroom when in flare. I seriously considered having tv cable run in there. No one can possibly understand what we deal with if they haven't been through it themselves, I don't think. Well, maybe moms who suffer through it with their children can.

oceanberryb- it is my pleasure to provide you with a little laugh! I'm glad you enjoyed it. As for the low residue diet, it is going really well. I really think that it has helped me alot. But it is kind of hard sometimes to deal with all that "i can't eat's..." as a college student i have found it extreamly difficult yet some how i mange to do it! I feel that being on a low residue diet with UC just makes since, i totally feel that mine is linked to food, and can tell if something doesn't agree with my system. I have been on it for over a year, adding things in when I started going into remission and was doing great until a bad flare dec. then i totally started over again. So i have been on a very strict low residue diet since then and now am doing great, but i'm nervous to start to add things becuase of the pred. taper (norm. this is when i start having problems around 20 or 15 mg.) But the hardest part with dealing with the low residue diet is explaining it to other people! I posted about both the low residue diet, and an annoyed rant about how much people were getting on my nervous asking about what i can and can't eat. If you have any more questions just let me know!