Rectovaginal fistula

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Tiredofchrons
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/8/2013 9:37 AM (GMT -6)   
I was diagnosed with a rectovaginal fistula 2 yrs ago. After 15 surgeries & having to wear the ilieostimy for 7 months it still wasn't healed. I then began Remicade treatments in NOvember & everything has been going great until Friday when I started having leakage again! I'm just wondering if anyone else has experienced this? My next treatment isn't until the end of this month. I've been dealing with either Ulcerative Colitis or Chron's since I was 12 now I'm 35 & to be honest I'm over it! I want a normal life! Please any advice or encouragement would be great!

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 1183
   Posted 7/8/2013 2:35 PM (GMT -6)   
I'm so sorry. That is frustrating. Mine almost healed up from Remicade as well last year but re-opened. Now I just have a draining seton, which works so much better. I was thinking about removing it to try to get it to heal again or to do a repair surgery, but honestly it never bothers me now. Every once in a while gas will pass through if I hold it in (in public) but that happens rarely. It very rarely hurts, only once in a while.
CD 2010, Fistula, Pancreatitis, C. Diff.
Current: Remicade
Previous: Prednisone, Imuran, and Asacol

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33

NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 416
   Posted 7/9/2013 7:02 AM (GMT -6)   
Did you ever think about changing your diet?  I was dianosed with CD in the lower colon and I had two massive rectal fistulas that surfaced about an inch from my anos and tracked back to my lower colon.  I had surgery and had two setons installed to keep them open so they would drain. 
 
GI insisted that I go on remicade as he said this is the ONLY way to heal fistulas as large as I had, and nothing else will work.  I did some research and I decided that before turning off my immune system, I would try a more natural approach first, and if that did not work, then I could always revert back to remicade.  So I decided to try the SCD diet .  
 
I went all out and I followed the diet with fanatical dedication and and without any cheating.   After 3 months on the diet, both fistulas started healing up.  By 5 months, both had healed so much, the surgeon actually had to remove the setons so they would heal more.  By 7 months on the diet, both fistulas were completely gone, completely healed and I had no other symptoms from my CD. The only drug I was taking with the diet was pentassa.
 
That was in 2007 and I have not had a symptom or a problem from fistulas or my CD ever since.  Surgeon said he had never ever in all his career seen fistulas as large as I had heal without remicade.  He said just keep doing what ever you are doing because it is working for you.
 
I had a colonoscopy two years ago and there was no sign of any active CD in my colon.  The only thing they found was some scar tissue where the fistulas had healed, but nothing more, no CD. 
 
Maybe changing your diet will work for you as it worked for me.  I suggest  reading the book "breaking the vicious cycle" which is about the scd diet.  You have nothing to loose by tring, and all to gain if it works for you. There are many people on this site that have had great success just as I had.

Tiredofchrons
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 8/4/2013 11:45 AM (GMT -6)   
Thank you everyone for the advice.. I just feel so alone! I meet with my doctors again in September & will See what she thinks I need to do! I will def try the diet! So glad that yours is healing it gives me hope!
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