Weird CD or just in denial?

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Regular Member

Date Joined May 2009
Total Posts : 20
   Posted 5/6/2009 1:09 PM (GMT -7)   
 Hi everyone, I am new here.  I was diagnosed with CD 2 years ago, not long after the birth of my son.
So, pretty common I believe, none of the typical drugs do anything good for me.  In fact, steroids brought on type 1 diabetes and remicade almost stopped me breathing.  I've also tried Humira and Mesalamine with no positive results.  I was experiencing extreme urgency, large amounts of blood loss (hemoglobin got down to 6.2) and basically wasn't digesting anything and lost 25 lbs.
Then, I got a positive c-diff test and was put on Vancomycin.  Within 2 weeks I was well on the road to recovery.  That was last May.  Since then, I've done several rounds of the Vanco because I just can't seem to permanently shake the c-diff.  The wierd thing is though, that when the c-diff is under control, so is the Crohn's.  I haven't been on any prescription meds now for well over 6 months (not even Vanco) and have been 'controlling' things with nightly probiotics and a fiber-free diet.  If I forget the priobiotic or eat something I shouldn't, I flare up within a day (and luckily settle down again within a few days).  I am sure that the flare is c-diff related and that the probiotics help keep it under control.
I feel like I'm walking along a tight-rope with this disease.  One step in the wrong direction and I fall hard.  I don't really think I'm in remission because I can't eat normally or miss a probiotic. 
Is anyone else's disease so tightly linked to c-diff?
Is anyone else following a fiber-free diet with success?  I considered doing the Specific Carb Diet, but wanted to try a simpler one first seeing as the SCD is so much work - and I'm a working mom with very little time to prepare food.
Sorry this post got so long, I hope to get to know you all better :)

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 5/6/2009 1:19 PM (GMT -7)   
I haven't had issues with c-diff(other people have and should be by shortly)...but I do empathize with the unpredictability of the disease.
Last 3 days, fever and bleeding...what caused it? hmmm...I wish I knew...
That tightrope thing...yup understand that too. "stray just a little and all will turn to chaos..."okay lightly paraphrasing from LOTR (I'm such a nerd)... rolleyes
During these times...I cannot eat anything with any type of fiber and have to say hello to baby food...smhair
Oh, your post is not so long...I am glad you have an outlet...there are really good people's a cool place to laugh, cry, rage or whatever and know you are not alone.
"The earth laughs in flowers"

New Member

Date Joined May 2009
Total Posts : 1
   Posted 5/6/2009 1:26 PM (GMT -7)   
hi im new 2 this.i,ve had crohnes disease for nearly 3 years.i,ve had a colostemy bag and a taking pentasa and everything seem s to b fine.but im still getting the bloatedness even if i dont eat anything.i was gunna try activia products but i havent got any 1 2 ask because no one else i knows got crohnes,and my doctor said that what ever i eat is trial and error.but obviously that aint no good to me.could some one please tell me if the activia product works.
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