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Dealing with Fistulas


Sat, May 30, 2009 12:00 AM

I was so desperate to find someone who is going through what I am going through.  I have had Crohn's since I was 14 and I'm 29 years old now and I have had a Rectovaginal Fistula for 5 years now and for 5 years I have had gas and stool pass from the vagina. It has been extremely hard and embarrassing to deal with. The gas passes without control and stool passes every time I use the restroom. Having a 'real' relationship with my husband has been very hard. I am getting really frustrated dealing with this. I had attempted surgery from the vagina area and 6 weeks after a hopeful surgery I was feeling the gas and stool pass through again! After one failed surgery my gastroenterologist recommended that I try Remicade. So after the third dose of Remicade I developed a really bad vaginal irritation that just wouldn’t heal, it latest 7 weeks (hell), when I stopped the Remicade the irritation disappeared. So, I think that is my side effect from Remicade which is unbearable. I met with another surgeon who recommended surgery from the anal side since the vaginal surgery was not successful. Today was my surgery date and I went under anesthesia and everything, I woke up thinking I had the surgery. I found out the surgeon could not find the hole, even though hours before I had surgery I had passed a lot of gas and stool through the vagina. So surgery was not done and now they think the Remicade should be done again and because it might have been slowly working. But I don't want to take Remicade again if I have to go through the side effect that I had before. My doctor had also recommended that I could try Humira if Remicade doesn't work. So after hearing your experience with Humira, I am very hopeful. Thank you so much for sharing your story. I really needed to know I wasn't alone. I thought I was!

 

FPO nadiaetman
Joined May 29, 2009

Sun, July 05, 2009 12:00 AM

 Reply posted for RoMo040509.

hi,

  if the gas is fowl smelling, then it is coming from the rectum.  i wouldn't wait until the fistual is large enough to pass stool also!  mine was  discovered while i was hospitalized for hemorahging from the Crohn's.  i was told the fistula was caused by an abcess.  the worst the abcess got, the worst the fistula got. it turned into one big, bloody, infected mess!  on top of the Crohn's.  i would have it  checked out immediately and get a second opinion if necessary.  i have to wonder some of these doctors ever got licenses to practice at all.   Good luck.

FPO eileenr
Joined Jul 5, 2009

Sun, July 05, 2009 12:00 AM

 Reply posted for nadiaetman.

5yrs!!!!   i have had one for only @6 months, and going nuts with it.   but there is good news.   i have been on Cimzia since 4/09 and the fistula is beginning to close.  Cimzia is a newer drug and is administered at my home each month by a nurse.  The Crohn's is healing nicely also.  maybe discuss this with your doctor?  better yet, after suffering for 5 yrs, find a new one?????? 

FPO eileenr
Joined Jul 5, 2009

Sun, June 28, 2009 5:16 PM

 Reply posted for nadiaetman.

So, as I was reading through what had been written in this thread, I have become a little more concerned. Recently, I too have been experiencing air, really gas because it smells like gas through my vagina. My primary care doc doesn't think much of it because I haven't started having bowel movements through it. Reading your posts, I am not convinced that I shouldn't be worried about this.

I did ask him if it could be a fistula, but like I said, he says that if I were to be pooping through my vagina, then I have a fistula.

I don't know what I should do now. Meet with a gyno? Meet with my gastro? Meet with a surgeon? Any advice?

Thanks!

FPO romo040509
Joined Jun 28, 2009

Sun, June 14, 2009 11:51 PM

 Reply posted for grannygrump71.

It definately is much easier to deal with a colostomy than a fistula. The fistula healed in no time really.

FPO repudiatedme
Joined Jun 12, 2009

Fri, June 12, 2009 10:34 PM

 Reply posted for repudiatedme.

  Thank you "repudiated me"   I have one that comes out the front of me when I work hard bending over pulling weeds or such.  I'll talk to my GYN doctor about this.  Seems much easier than what I've been told. I've had Crohn's for ages & really do much better than so many, for that I feel grateful, but so sorry for so many.

   I truly do learn so much from reading this site.  I do hope all of you find an answer to your health problems.     Thanks again,   Grannygrump71

 

FPO grannygrump71
Joined Feb 2, 2009

Fri, June 12, 2009 12:52 AM

 Reply posted for nadiaetman.

I had multiple fistulas in 2006. They wouldn't heal as long as stool continued to pass through. They tried letting the bowel rest by nothing by mouth for 2 weeks putting me on TPN. That didn't work. They had to place a temporary colostomy. I had a wound vac for my fistula and it healed amazingly. I know a colostomy is a big step but it's only temporary. I was 16 when it happened I thought it was the worst thing ever but I never would've healed any other way. Five years is a very long time for something like that especially when in less than a year to a year you can be healed and have the colostomy removed.

FPO repudiatedme
Joined Jun 12, 2009