Fistulas & Surgery

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crohns07
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/20/2008 5:11 PM (GMT -7)   
I'm new here. I found out I had crohn's last summer when I thought I had appendicitis. I went into the ER to have an appendectomy and woke up without 8 inches of my small and large intestines. Up until the point I had no clue I had anything wrong with me. I had a few weeks of pain that I thought was a stomach bug and ovulation pain.

I know I've had this disease for quite some time though because 2 years prior to that I was having what I know now to be fistulas in my vaginal area. I've been passing gas through my vaginal canal for at least 2 years. I couldn't get any of the three ob/gyns I had seen to give me a reason as to why it was happening.

After I healed from surgery, the GI put me on 6MP drugs to keep the disease at bay. I started having a flare at the end of the summer about 2 months after surgery. I was put on prednisone and that helped immediately. Around Halloween I started having a different kind of pain. Went back to my surgeon and GI and they did a string of tests (colonoscopy which showed an obstruction, followed by a SBFT and a barium enema, neither of which showed any obstruction). The day after Thanksgiving I went into the ER with the worst pain I have had in my life. They put a tube up my nose and kept me for 4 days before they decided to do surgery again. I had more intestines removed along with an abcess and a fistula. My small intestine had folded over on itself and the anastomosis site had closed up, hence the pain. I spent a total of 12 days in the hospital due to not healing well from being on the prednisone for 3 months and because I had a repeat incision. The surgeon wanted to keep an eye on me to make sure the incision didn't open up.

I'm finally off the prednisone. I'm back on the 6MP (had to stop while I was in the hospital and healing from the surgery), so I had to start over with it. I started Remicade at the end of February. I've had two infusions so far, but I have seen no improvement in my vaginal fistula. Prior to the barium enema, it was only gas passing through the fistula. Since then I have had stool passing through which is very distressing. :(

For those of you with vaginal fistulas and taking Remicade, how long did it take for your fistula to close. If it didn't, did you have surgery? What did that entail? Was there a long recovery process? I've scoured the web for these answers and can't find anything. I've done some forum searching and I can't find exactly what I'm looking for.

Thanks for listening.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 3/20/2008 5:58 PM (GMT -7)   
I have had a vaginal fistula that was totally closed by my 5th remicade infusion.  I was also on high doses of flagyl and cipro.  I would ask about adding those to the mix, and give the remicade some time to work.

Beachy Mom
New Member


Date Joined Mar 2008
Total Posts : 18
   Posted 3/28/2008 5:46 PM (GMT -7)   
I had a vaginal fistula and was on Remicade for almost a year. My fistula never closed. I had surgery last July. I have to say it was the most painful surgery I have had. I had to have a skin graft on the left side of my butt. So it was a open wound. The skin would flap down went I went to the bathroom even. I did not completely heal until Sept. but my fistula is gone and that is the most important. No more drainage and escaping gas. So the pain was worth it for me.

Just "Beachy"


crohns07
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/28/2008 8:02 PM (GMT -7)   
Thank you both for your input. I do hope the Remicade works. I'm just trying to prepare myself in case it doesn't because I am not ok living with this thing long term.

Beachy - Do you mind me asking if you had to have an abdominal incision for the fistula surgery?

Beachy Mom
New Member


Date Joined Mar 2008
Total Posts : 18
   Posted 3/28/2008 9:02 PM (GMT -7)   
No- I did not have to have an abdominal incision. Since my fistula wasn't very far up - they just did it vaginally/rectally. When theypulled the muscle down to cover the fistula they attached it outside of my rectum..so they had to do a skin graft to cover the mucosal tissue. To be truthful this surgery scared me to death because the dr up front told me that mine was not going to be easy. I was ready to put up with that awful fistula forever. They prescribed Valum just to get me through the wk before surgery. But I'm so glad I had it done. It was worth it.
Just "Beachy"


alie1420
New Member


Date Joined Mar 2007
Total Posts : 9
   Posted 3/29/2008 12:50 AM (GMT -7)   
In my experience my fistula would go away within a week of the remicade infusion, but would reappear a week or so before the next. I had to move up to getting them every six weeks. The remicade eventually stopped controlling it. I am now on Humira and the fistula has been gone for over a month so far!

texasmom
New Member


Date Joined Mar 2008
Total Posts : 9
   Posted 4/1/2008 7:18 PM (GMT -7)   
I'm not sure what a fistula is, but I do have a recurring sore in my groin area. Iv'e gotten them in that past. I thought it was a blocked hair follicle. My new dr is aware of this, but we didn't discuss it much at my first visit...waiting for the second visit now..so I'm not sure what it is. Can someone help explain what a fistula is and why I am getting these what I call "boils"

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/1/2008 7:54 PM (GMT -7)   
Hi Texasmom,

The simplistic answer is that the body forms a tube -- a fistula -- to drain an abcess. Fistulas can empty out into the intestine, the vagina, other organs (e.g., bladder), or to the skin. I've had peri-rectal abcesses with fistulas that drain out the skin of the perinium. I suggest you google fistula for more explanation.

It possible you do have one. Fistulas are made to drain but can become very problematic when they plug. Fistulas can be hard to diagnose, so it is important that your Dr is experienced with them.

Take care.
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