more frustrations

I don't understand why you're waiting to start Pentasa. Seems like you should be able to take that with pred. And what was the reason for the antibiotics?

I'm sorry the pred is making you moody. Maybe instead of Pentasa, or in addition to it, you should put entocort into your plan. I took it along with my pentasa and it did help with my joint pain.

June, I went back and read your post about Mayo etc. I totally agree with the others there - maintenance meds are absolutely necessary!

That being said, I hope you are able to try a low residue diet for a few days.

I remember one flare that I had right around Yom Kippur. I was scheduled for a colonoscopy a few days after the holiday, so I ended up having to fast 2x in one week. When I got to the hospital for my scope, my DR listened to my complaints and then asked me if I had found anything that made me feel better. The answer was so clear - NOT EATING. Giving my bowels a rest was absolutely the best relief I had found before (or since, really).

Well, we do need to eat. I've noticed some people are on TPN, which is a really serious bowel rest. But a low residue diet might get you most of the way there.

And you absolutely must insist that you start your pentasa now, not when you're off the pred.

junerainbow- I am so sorry you are feeling so bad. I just saw that you tried entocort and it made your diarrhea worse and I was so suprised. The reason I say that is because I now remember being on entocort and my diarrhea got so bad to the point that I was not making it to the bathroom and one time when I was out I actually went to the bathroom on myself. I had no control and it was horrible. I asked the doctor if the entocort was making me use the bathroom more and told him what happened while I was out and he said entocort doesn't have that side effect and I felt so embarressed. I was kept on it for a year and when I finally tapered off after a while I was able to have control again. I have been very under treated and have only been on asacol. I had a 5 day stay in the hospital to get IV fluids and antibiotics and a seton drain put in for a fistula and was discharged last wednesday. I saw a new GI doctor from the hospital clinic yesterday and next week I am suppose to start steroids and 6mp (I had to wait till next week because they want me to take more antibiotics because since a colonscopy done last month I have been running a low grade temp on and off). I am now getting nervous about starting the steroids because I suffer from severe anxiety and panic attacks (which I take xanax for daily) I am so scared the panic attacks will get worse with the steroid. When I read about people who have to take pred. it is really starting to scare me so bad because it seems like everyone on it has a lot of anxiety and mood problems and basically just feel horrible :-(. Sorry, I didn't mean to start voicing my fears I was just really shocked when I saw that entocort made your diarrhea worse and the doctor made me feel stupid when I told him I thought it was making mine way worse. I hope you start feeling better and get some answers from your doctor.

It's hard to imagine calling something a "flare" when what it really seems like is an endurance event. I think everything's relative.

I became symptomatic with the birth of my first child 10 years ago and I've never been in remission. But the diarrhea for me only lasted a couple of years (!!) and stopped completely when I started using Pentasa. I've never had more than 4 bms in a day - it sounds like your diarrhea is much more frequent. What I call a "flare" is when I have significant discomfort, fatigue, joint pain, passing blood or mucous - all at once. Usually my symptoms are much more manageable (bowel irregularity, some joint pain).

I saw that you're using probiotics. You might want to consider eliminating that. In some patients they make bowel symptoms worse, not better. I'd suggest you get your diet as simple as possible. And does Ensure have lactose? Make sure that you are lactose-free, or using lactase supplements if you're eating dairy.

Oh, and Nakira - I become euphoric on pred. Maybe you will too?!

sweetnakira~ the first drs I had made me feel stupid for the entocort as well.. told me it wasn't possible...I am so sorry you had the same reaction..the pred is horrible...i hope you start feeling better as well...I ca n so relate to the not eating in order to leave the house...

the dr just called... he is testing me for cdiff again. Than he is sending me to the mayo... he has no idea why I am not responding. He can hear in my voice that the prednisone is making me crazy.. he just doesn't understand why a case that is mild is not responding... I am frustrated everytime he says that... is it possible I don't have crohn's? is it possible that mild crohn's does not respond to prednisone? I am so confused right now..

kazbern, I hope when I start the steroid I will experience the same feeling as you , I am just very worried of it making the anxiety and panic attacks I already suffer from worse. I think I could handle anything else especially weight gain because God knows I sure need to gain some of my weight back (if not all of it).

junerainbow- please make sure your doctors listen to you because like I mentioned I have been undertreated all these years after being told I had only mild crohn's and now it's moderate/severe. You can always go see another doctor for a second opinion. I have been through 3 GI doctors and now am at a teaching hospital where I had my first appointment yesterday and I pray the crohn's will finally be under control.

Yes flares go on for years sometimes. I agree you have something they haven't found yet, don't think it's in your head you know your body better than they do. I've recently had to make the same conclusion myself. Yes my GI has years and years of training and even more experience treating us as patients, but I know my body and she's missed something I'm sure.

In addition to the undertreated cases, I often surprised by the meds some people list in their "profile" - many of them are "old-guard" crohns medications. Sulfa drugs? Pentasa? Not exactly cutting-edge treatment when you think of what else is available: 6pm; biologics, etc.