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wishingdontdomuch
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/15/2010 5:12 AM (GMT -7)   
Hi guys! I just became a member about 30 seconds ago, so I hope I'm doing this right! I'm a thirteen year-old with Crohn's Disease, and I was diagnosed when I was ten. I usually flare-up about once a year, although last year I was lucky. This year, not so much. I have a doctor's appointment with my specialist in about a week, which was scheduled after he put me on Balsalazide, instead of Pentasa. My symptoms haven't gotten any better, unfortuantely. I know my specialist is going to try to put my on Prednisone. It hasn't worked well in the past, and I fail to see how it will work now. Being your average teenager, I am somewhat vain and am not looking forward to the acne, "moon face", and weight gain, among other symptoms. Is there anything else I can use to make me feel better?
 
 
Tried: 3g of Pentasa
On: 15mg of Prevacid, 50mg of Mercaptopurine, 4.5g of Balsalazide, and 500mg Calcium Supplement
History: Two half sisters with IBD
Where: Small intestine

Jeny
Regular Member


Date Joined Feb 2004
Total Posts : 437
   Posted 6/15/2010 6:00 AM (GMT -7)   
Welcome to HeallingWell! I'm sorry that you've got this DD so early in life. :( There are lots of drugs out there for CD and u and your doc just need to find the right one for you.

http://www.ccfa.org/

that's a great website to learn about CD and drugs that are out there. Perhaps you can ask your doc about other drugs.

Good Luck!
-Jeny
Crohn's Disease Dx'ed in '02
Bipolar 1 Disorder w/Psychosis -Rapid Cycle
Migraines

Cimzia, Abilify, Tofranil, Aciphex , Lisinopril, Allegra-D, Sustenex

Crohn's drugs I've tried: Remicade (put me into remission for 5 years), Entocort, Immuran, Prednisone & Questran powder.
Bowel Resection: 2002
Fistula surgery: 2003


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/15/2010 6:08 AM (GMT -7)   
Hi Wishing and welcome to Healingwell. There is another steroid called Entocort which has less side effects than Prednisone. It does take a little bit longer to kick in, but this might be a good option for you to discuss with your doc. Good luck and let us know how your appt went. Hugs~
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

wishingdontdomuch
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/15/2010 1:20 PM (GMT -7)   
Thanks so much! I've been trying to do some research, but I figured the best way to get answers was from people who really understood what I was going through. I'll ask him and hope it works!

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/15/2010 3:04 PM (GMT -7)   
Welcome! I am so sorry to hear you have been diagnosed with this so early. Kids and teenagers should just get to be kids not have to worry about this stuff. I am on entocort which as Nanners mentioned has less side effects. I have been on it for just over 2 months and have not experience acne, weight gain or moon face. For me it took only a few days to feel better and about a week to kick in fully. The only weird side effect I have noticed is my teeth seem to be sensitive to cold and hot now..very weird! I am sending you good thoughts for your treatment and come visit us whenever you need support. This is a great site! It is actually too bad I had to meet so many wonderful people under such circumstances!
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Multigen


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/15/2010 8:11 PM (GMT -7)   
tewcute thank you for mentioning the hot/cold sensitivity to my teeth I just started entocort a few weeks ago and didn't realize that's where the sensitivity came from.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/15/2010 8:15 PM (GMT -7)   
wishingdontdomuch welcome to HW. I was diagnosed officially at age 47. I'm 55 now but believe I've had crohns since age 15. Your probably going to think I'm nuts but consider yourself lucky to have this site avaliable for support, education and experience of patients like yourself. My life would have been quite a lot easier if something like this had been avaliable to me all my life. Anything we can do to help you please don't hesitate to ask.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


wishingdontdomuch
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/16/2010 5:25 AM (GMT -7)   
I just checked out Entocort, and it looks pretty safe to me - or at least as "safe" as any of these medications are. Thanks so much for all of your support. Now when my doctor tries to give me Prednisone, I have something to fight back with!
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