What am I supposed to do now?!

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Regular Member

Date Joined Oct 2006
Total Posts : 153
   Posted 5/13/2008 12:20 PM (GMT -7)   
I was right about my symptoms and a recto-vaginal fistula has now been found and diagnosed by MRI (good thing I pushed for a test--don't ever let your doc tell you that you are imagining things!). My GI told me that there is really only one option now and that is to move up to either Remicade or Imuran. I've only ever been on Pentasa so this is quite the change for me. I've been reading about these drugs and I'm trying very hard not to freak out. My Crohns has always been pretty mild and it sounds a little extreme to now be considering these medications.
Ok, now the complicated part. I've been a carrier of the Hep B virus since I was a kid. No idea where I picked it up but I've been really lucky in that it's been completely in-active and I've not had any problems with it at all. Remicade, Imuran, Humira and any other biological treatment has been proven to activate the Hep B virus in carriers. So to fix my fistula/Crohns problem, I will be creating another one in my liver. My GI is going to be speaking to my Hepatologist to see what they can do but it doesn't look good. So what am I supposed to do? Do I fix one problem only to create a potentially worse one? Do I refuse treatment for the fistula to protect my liver? I'm so scared about all of this and don't know what to do.  
32-year-old female diagnosed with CD in 2001.
Currently taking Pentasa 4g x four times daily and probiotics.

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 5/13/2008 12:44 PM (GMT -7)   
What about antibiotics? I thought Flagyl could help with fistulas?
I know what you mean about worrying over the liver. I had liver problems in the past so I'm also skeptical of trying immunosuppressants/modulators. I've had some success with enteral nutrition, it put me into remission, though I'm having a hard time staying there... If turning off the inflammation could help heal the fistula, maybe EN is worth a try? I noticed a mild elevation of my ALT and AST while I was on EN exclusively, but it was never high enough that my hepatologist was concerned.
Good luck.

July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E, Folic Acid, Psyllium

Post Edited (Illini) : 5/13/2008 1:47:05 PM (GMT-6)

Regular Member

Date Joined Mar 2008
Total Posts : 110
   Posted 5/13/2008 2:46 PM (GMT -7)   
RK..I had some symptoms like yours and I was put on pred and Azulfidine.
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD. Started Humira March 2007

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 5/13/2008 3:19 PM (GMT -7)   
How bothersome is the fistula? Is it symptomatic? Does it leak? Thats a tough decision. I guess I would go with the lesser of two evils, whatever that is.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 5/13/2008 6:53 PM (GMT -7)   
I second the antibiotics suggestion. If you're lucky, Flagyl will close it up, and you won't have to move to a more powerful drug.

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 5/13/2008 7:38 PM (GMT -7)   
I was put on high doses of flagyl and cipro when I had my vaginal fistula.  And then I started remicade. 
Given your history, I would certainly try the flagyl and cipro first.  I have been on imuran and remicade since Nov. of 2004.  I had to go off of the imuran in Nov. of 2007 because it was messing with my liver, but I am still on the remicade.  So, for me, the remicade is easier on my liver than the imuran. 
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