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cdngrl
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/2/2008 7:58 AM (GMT -6)   
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 :)
Ulcerative colitis for 20 years

Meds:
Asacol x 9 daily
Multi Vit
Ferrous Sulfate (on occasion..)
Salmon oil capsules
Garlic Supp
Calcium
Vit D
Green Tea capsules

Last prednisone tapering regimine: September 2004


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 6/2/2008 8:37 AM (GMT -6)   
Hi, and welcome to the forum cdngrl! We do have a terrific forum and great folks that provide plenty of support and good ideas. I think it's fabulous that you have become an RN; just having a chronic illness for so long gives you the knowledge and empathy for others. Again, welcome!

Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


beehave
New Member


Date Joined May 2008
Total Posts : 4
   Posted 6/2/2008 12:09 PM (GMT -6)   

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...


UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 6/2/2008 1:53 PM (GMT -6)   
beehave,
I just recently got diagnosed with UC three months ago and being 16 in my junior year of high school it was SO hard for me. I missed so much school, got behind in all my classes. I was taking Chemistry and my teacher is the hardest teacher in my whole entire school so it was really rough for me to try and get caught up on what i missed. I was missing all that school when the doctors were trying to figure out what was wrong with me. When i finally got diagnosed with UC, my doctor wanted me homeschooled so i was for the rest of this year and because of missing all that school i now have to go to summer school. It isnt so bad though bc next year ill be a senior WOOO HOO =] Just make sure that your daughter doesnt fall behind in school if she gets sick or has a flare up and misses a couple of days. I think the hardest part for me was not being able to see my friends. I havent felt well enough to hang out with them. But just make sure she DOESNT fall behind. With her being so young, im sure the teachers will understand. When your a teen in high school most of the teachers are used to being tricked or lied to about someone being sick and dont take it seriously so i pretty much got told to suck it up. I hope this helps =] And if you have any ? feel free to ask or email me at UC_at16@yahoo.com
God Bless and Good Luck
Katrina
 
Severe UC, newly diagnosed
  Currently taking 15mg Prednisone,1mg Folic Acid,
25mg shot Methotrexate once/week,iron pill and multivitamin daily
 
 


cdngrl
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/2/2008 4:31 PM (GMT -6)   
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.
Ulcerative colitis for 20 years

Meds:
Asacol x 9 daily
Multi Vit
Ferrous Sulfate (on occasion..)
Salmon oil capsules
Garlic Supp
Calcium
Vit D
Green Tea capsules

Last prednisone tapering regimine: September 2004

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