My fistula is going to be 3 in August.

I'm sorry that your fistula is bothering you, but I am surprised to hear that you've been told surgery is impossible. I don't have fistulizing disease so I'm no expert, but it seems that many here have surgeries to repair their fistulas. Have you gotten more than one surgical opinion on this?

Remicade is suppose to aid with healing fistulas...I think the info you've gotten is weird...maybe find another "specialist" that is more knoweldgable than the 2 you've seen so far.

Good luck, I hope you can soon find someone to help treat your fistula, you shouldn't have to live with it, especially for 3 yrs...that's just heartbreaking.

I don't believe that anyone can make a blanket statement that all Crohn's fistulas should be surgically treated or that no Crohn's fistulas should ever be treated. Just like medicinal and dietary treatments for our primary condition, everyone's fistulizing disease presents itself a little differently. My understanding is that it all depends on the location and severity of the fistulas.

I have had at least 1 and as many as 3 different active peri-anal fistulas at any one time over the past 15 years. I currently have just one that is very lightly active up a bit on my cheek. I put a gauze pad on it & change it daily.

I'm a case where the doctors "could" have done a surgery or some other sort of procedure, but they suggested there is significant risk of damage to the sphincter muscle & irreversible loss of bowel control. My GI agrees that if it is something that I can manage, that it probably isn't worth the risks, but that she would help direct me to the right doctors/surgeons if things ever got to the point that I wanted/needed to remove it.

Things that would make me consider it would be chronic, consistent pain, unable to sit, continual changing of pads/underwear, etc. Things that affect quality of life. My current state of having to keep a pad on it daily vs. high risk of lost bowel control seems like a pretty easy decision in my case. Plus, once they start cutting...if it doesn't work the first time, then you are back and forth to the surgeon undergoing multiple attempts at different things. It just seems like that (multiple surgeries/recurring fistulas despite surgeries) is higher risk for us Crohnies than the non-Crohnies.

It hasn't always been easy. I've had a few abcesses in my years. They've been more painful and active than they are right now. Luckily, my issues have all been relatively short-term, and I can usually get it back to a period of low activity, like I have now.

The Remicade did help.
It closed up the fistula for almost 5 months, but it didnt get rid of it.
It reopened and started draining white fluid and then 4 months after that it started draining stool again.
It normally doesnt hurt, but if it gets too hot or I exercise too much, it aches and then I know that I need to drain it. There's no squirting. It only did that during the first few months, just stool.
I think I'm having some kind of infection because applying pressure also makes mucus/pus come out of my butt and that doesn't typically happen either.
I saw two different surgeons (one per year) and they both discussed how the different surgeries out there wouldnt work in my case. They both mentioned the only one that was remotely feasible, I forget if it's the LIFT or FLAP, but said it was very risky.
I made an appointment with a obgyn. I want her to take a look and see if I'm still having bartholin problems and gauge my fertility.
Sometimes it gets hot or I exercise and I feel an ache and I think it's the fistula, but it's not. It's where the Bartholin gland is located. And there's nothing I can do because I can't drain something without an exit.
Also, my grandma with the colon cancer had surgery to help with a vaginal fistula. They put in a jpouch. Aside from some bladder problems, she was doing better, but now they think she has a bowel obstruction!
She was in terrible pain and kept trying to move around. She couldn't figure out where the pain was coming from. One of the nurses realized that nothing was in her bag except fluid.
Everytime they talk to me about her it makes me think that she has some type of colitis and this is the result of years of no treatment!
Even though I don't want to hear bad news, I'ms still going to the gyno because I don't want to end up like my grandma and scare the hell out of my mom.