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Regular Member

Date Joined Aug 2010
Total Posts : 77
   Posted 8/11/2010 9:21 PM (GMT -6)   
Hello, I have been reading with interest for sometime now, you all seem so informative and helpfull. 
 I was diagnosed in '03 with crohn's. 
 I was in denial for too long, but now I accept that it is what it is.  I cannot/will not take pred anymore because of horrible side effects.  My doctor put me on 3 mg. Entocort  every other day.  I've been on that for months, and I just don't feel much better.  Major fatigue, pain, D all day long.  I can't figure out what I can't have food sometimes it's okay one day, then makes me sick the next.  It's so confusing. 
 I used to be out and about and very active with business, family,, I feel so isolated and helpless.  Never know if its a good day.....or a bad day.  I feel so bad for all the younger people that have this.   

Regular Member

Date Joined Sep 2009
Total Posts : 90
   Posted 8/11/2010 9:46 PM (GMT -6)   
yes, welcome! I know it is "ruff" to say the least. We are all from various corners of this BIG vast world but we are all the same cause we all suffer the same and deal with the same things.... I wish I could give you this wonderful insightful advice...but really I can't...I often wonder how the hell I have made it through .... I have been told and have read that the body heals it self and that you can in fact turn your life around by thinking and truly believing positive things .... so maybe try that.
Don't focus on the bad - focus on all the good. Eliminate the disease mentally from your life. Do and think of things that make you happy.
Picture yourself "normal" and "healthy" no matter how hard it is or how much it may hurt.
Listen to some funky upbeat music when you are sitting on the toilet. Eat soda crackers (if you can) and sprinkle jellow powder on them or something crazy like that. MAKE IT FUN and SMILE OFTEN.
Laughter sometimes is the best medicine out there!
Good Luck!
33 yr. old female CANADIAN
dx with UC October 1998
had temp j-pouch: '98-'99
disease free & back to norm: '99-'07
dx. with CD March 2009
Currently taking: Remicade mthly & Imarun

In my next life: I want to be a big beautiful oak tree or something like that... so I can live off of just sunshine and water.

Veteran Member

Date Joined Jan 2003
Total Posts : 6044
   Posted 8/12/2010 2:46 AM (GMT -6)   
hey llama.. just take it one day at a time i guess. thats what i do.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/12/2010 9:45 AM (GMT -6)   
Hi Llama and welcome to the best Crohns forum out there. Sounds to me as if you are being untreated. You should be on 9mg of Entocort to start then within time you start weaning down. I would seek out another opinion, so you can get some relief. 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"*

Regular Member

Date Joined Dec 2004
Total Posts : 162
   Posted 8/12/2010 3:42 PM (GMT -6)   
Crohn's comes in "waves". I had two horrible years where I was going 40 times a day everyone more painful than the next. Now, I have been in remission since about 2007. I did a triathlon last year. Just believe you can be well, because you can be. Remicade got me there. I was sans drugs for 2 years. Now I do have to go back on some drugs but not becuause I feel bad, I have some inflamation that they don't want to get worse. Hang in there!

Regular Member

Date Joined Dec 2004
Total Posts : 162
   Posted 8/12/2010 3:43 PM (GMT -6)   
Also, get a darn good doctor! I had one that was such a pessimist. New one is so possitive that I can't help but be also!
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