Life with UC

I'm new to this message board but not new to IBD. I was diagnosed with ulcerative colitis at the age of 6. That was 20 years ago! I really don't know life without colitis, it's just been a part of me for as long as I can remember. I had a very rough child hood with the disease, being admitted to the hospital 3 times before the age of 9 for several blood transfusions. I had been taking prednisone every second day (to minimize side effects) and eventually was able to go off steroids in my early teens. Since then I have only needed to go back on them once for a tapering regimine. I get about 1 to 2 flare ups per year, which are controlled by increasing my asacol dose. In my late teen years I was actually down to 2 asacol per day! I've somehow got up to 9 pills a day (I keep trying to taper them down but I get a little flare and have to go back up). I just want to thank you all for the great ideas on diet and nutritional supplements....I've never looked into this kind of thing because I think I've always tried to ignore the disease...I don't talk about it with friends, just family....It's a hard thing to go through on your own so I'm glad I found a place to come. I've enjoyed reading your stories and look forward to hearing about new things that work for everyone!!

P.S. I am now a registered nurse because I feel I have a reeeally good understanding of illness :)

My daughter's 5 now and was diagnosed with UC last year.  I'm really worried about her..she's now in her third flare since diagnosis.  Colazal didn't work... asacol just failed us...now looks like we're going to have to try 6-mp.  She's been on pred for about 11 days now, and the past two nights she's woken up to go the bathroom, not a good sign, I know.  I'm waiting to hear back from the doc to see what they want to do next.

Any advice for dealing with the schools--did you have a section 504 plan?  I want her life to be a normal as possible.  She already has to deal with eczema and life-threatening nut allergies, so I'm already worried that she's going to be known as the kid who has to carry around her epi-pen at school and eat at the peanut free lunch table.  I don't want her to also be the kid that's always running to the restroom...

I am a huge fan of prednisone because it did wonders for me when I was little....she's only been on it for a short while - it will work just give it time - it took me about 8 years of prednisone to control the really bad flare ups. Also talk to the doc about going on an every second day schedule with it, could help out in the long run. I can't remember missing a lot of school because I was very young, but I must have with hospital admissions...I'm sure the schools will be understanding about the situation though.