Not sure what to do.

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Regular Member

Date Joined Sep 2007
Total Posts : 219
   Posted 12/30/2007 2:34 AM (GMT -7)   
It is 4:25am and I am turning to you all for any advice you may have.  I was suppose to start azasan on Dec. 26th as my crohn's diagnosed in August is still major flaring and the pentasa/entocort combo doesn't seem to be helping.  I have pink eye and bronchitis from my little guy so my GP told me to hold off until I am better.  My stomach pains are bad no matter how low residue low fiber my diet remains.  I am taking levsin or bentyl that the gi gave me.  I feel like I can't get ahead of the crohns.  The diarrhea is usually 7 times a day now.  The internal gas in my intestines is loud and painful.  This is constant.  I have spoke to the GI doc about remicade and humira and he feels I should reserve them for the future.  My crohns is narrowing type.  The GI is against prednisone due to the side effects and says we could try the remicade maybe for 6 months until the 6mp kicks in.  Everything I have have read says once you start the drug you build antibodies and it is difficult to go back on it.  I went for 2nd opinion at Mt. Sinai and didn't have a good experience as they told me I had PSC but don't.  Scared the hell out of me.  Anyone else have similiar issues and resolved them??  Should I get another opinion?? I felt so much better on vanco for a year when they thought I had cdiff (guess it was crohns misdiagnosed).
Thanks!!  You all are an amazing, strong bunch!!

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 12/30/2007 3:42 AM (GMT -7)   
Hi Chris, I an on Imuran for over 2 years and I also and doing Remicade. Which I am in remission for over 2 years. Once you start the Remicade you do not stop it. Thats when you build antibodys to Remicade. If you stop and the doctor restarts the Remicade you can have serum sickness. I don't have any side-effects from the Remicade I think its a wonderful drug.

Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 12/30/2007 4:09 PM (GMT -7)   
Thanks Teddybear for your great input

Due to Another DD I am not a candidate for Remicade .........So I am happy you gave your input

Happy New Year to YOU and all
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Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 12/31/2007 6:41 AM (GMT -7)   
Have you looked into Xifaxan. It is an antibiotic for travelers D used off label for CD. If you felt better on Vancomycin, Xifaxan might be for you. I have been on it for about a year and a half. It was a fight to get my insurance to pay, and my local doctor didn't really know much about it. But, I see the head of GI at a major hospital in Boston a few times a year and he Rx's it and his office did most of the insurance fighting, plus the drug company got involved. Look into it. It cut the number of runs to the bathroom down from 20+ to under 5 a day. And I don't know why, but I can finally start tapering off my prednisone too. Something I haven't been able to do for years.

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 12/31/2007 10:33 AM (GMT -7)   
Hi Nikki! I can understand why you are leery about seeing another Dr, sounds like you have been misdiagnosed several times-how frustrating for you. I do encourage you though to seek the advice of another GI, maybe there is one in your area that specializes in CD? You will find a GI that understands your condition and viable treatment options, just keep looking until you find that right GI. Where do you live? There may be a member in your area who can recommend a good GI for you to see. Take care and be safe in 2008!
Marci, 38 years old, Rockledge, FL
Dx with Crohn's disease March 2006, currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor, plus 3x per day heavy iron supplements for anemia

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