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Regular Member

Date Joined Oct 2009
Total Posts : 157
   Posted 2/27/2010 2:02 PM (GMT -6)   
So, I've been feeling really good for the last week and a half. I started the SCD, and I really felt like it was working...
Well, I just started seeing a new doctor at the Cleveland Clinic yesterday (he seems very good), and he's not convinced that I have Crohn's track record is, well, weird. He wants to do another colonoscopy, but he wants me to be off my meds when he does it. He has it scheduled for the first week of April and I stopped taking my pentasa and started to taper my entocort last night. (sorry my signature is wrong, I had a bad reaction to humira...and imuran...)

Now, I feel horrible. I've been on the toilet all day with waves of nearly unbearable pain. I thought about going to the ER, but it seems to be finally settling down a little bit. Maybe it's stress? I really don't want to be feeling like this until April...not to mention I'm going on vacation with my family to Florida the 2nd week of March (tickets already bought)...I feel like crying. I'm so tired of this disease screwing with my life and my plans...if it even IS crohn's!

/rant over.

I just needed to vent. Thanks.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Pentasa 1 gm/4x daily; Humira injections; Entocort 9mg

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 2/27/2010 3:21 PM (GMT -6)   
Sorry to hear you're feeling so miserable...jmho, but something IS wrong and what you were doing WAS working...I too have weird symptoms that are not "typical", my doc was also wondering what to call it, but wanted to continue my treatment cuz it was working...we do know it was inflammatory...however, with my dx of PSC, my doc now back to thinking Crohn's, just and atypical presentation...
again, jmho, but maybe you should tell your doc that your previous treatment was working, and tell him/her how horrid you are feeling now...
"The earth laughs in flowers"

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 2/27/2010 4:16 PM (GMT -6)   
I am a big believer in getting as much info as possible and that means getting visualation of the entire GI tract.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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