Fear of flaring

When I was still healing, I had regular bowel movements. With the help of psyllium husk, they were formed enough.

When I dropped below 10 mg., things got difficult, but when I went on Canasa on top of the Asacol, the pain and urgency subsided. I was at one to three bowel movements a day.

When I got down to 5 mg. last week, I experienced my first bout of constipation, associated with heartburn and bloating, since the first onset of UC in the summer. My GI said I was going back to normal because that's the way I was before the UC.

Four days of it, then bowel movements came consistently, easier to pass, heartburn (maybe Foxomax related), most gas and bloating, disappeared.

Now I feel great (am at 2.5 mg pred), like there's no inflammation, but I thought about it and got scared. It's like I'm waiting for the other shoe to drop. It's like I think the bowel movements, the easiest to pass they've ever been, are going to get looser and looser and I'm on a slide to diarrhea.

Does anyone have this fear... it's like my bms are too good right now. Do any of you, while in remission, live with the constant fear of flares? Am I acting crazy with worry? At what point are worries justified in this situation?

Thanks, fruitgirl...

I don't think I'll end up going too much lower. The maximum doseage of Apriso (4 pills) equals 1.5 g of mesalamine, whereas the maximum doseage of Asacol (12 pills) equals 4.8 g of mesalamine. I'm not sure why Apriso is so much lower...I plan to as my GI at my checkup today. I don't know if it's because it's only indicated for maintenance of remission, and not induction of remission, or if it's because it's more effective at releasing mesalamine. At any rate, it might not be a good idea for me to drop the doseage. And, if I flare, I may have to go on Asacol to get a high enough dose of mesalamine.

As for the enemas, I'm stubborn about staying on them twice weekly. I've read a couple of papers where they compared patients using oral meds alone to patients using oral meds and enemas twice weekly, and in both, the group on enemas and oral meds stayed in remission for longer stretches of time than the patients only on oral meds. If I start to flare, I'll immediately bump my enemas up to nightly.

Thanks, Quincy and fruitgirl. Every day I'm feeling better. Monday I drop to 2.5 mg. with 0 every other day for a week and then I'm off. I feel like I've accomplished a lot. When or if I have my second flare, the second flare will be a new experience. I'll be a newbie at second flares. So I guess it's OK to be intimidated/frightened. But I shouldn't live my life like that.

Do any of you think that if you flared you can up your non-prednisone meds instead of going on prednisone. Is that your aim or you have to be on prednisone as well?

Ellen

I hope I won't have to go on pred again, but if I'm flaring, really sick, and not seeing improvement, I will. I wasn't on it for long, it made a difference immediately, and I tolerated it very well. I honestly am more afraid of doing damage to my colon from an extended flare/inflammation than I am about the side effects of a short course of pred.

Same here, Quincy... blech, pred...