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Im curious to know if anyone is dealing with a fistula that goes outside of the body. Mines is open about an inch away from my rectum.
And always drains. Last Sept I went and got a seton drain--basically a rubber band hanging out my ass.Its to keep the fistula from closing until the drainage dries up Since im constainly draining, I wear gauze 24/7!
its a small hole 2x2 gauze can cover it fine but use 3x3 so i know its stayin in place- sorry if TMI

My doctor 6 months ago said lets give it 3 months with this new medication (humira and a 6_MP) and see how things work, in hopes the drainage stops.
3 months came up..Doc uped my dosage and said lets give some more time. Im 22..been dealing with this a year..im tired (yes i kno there are worse cases, and others dealing with things longer than a yr) I was informed of a surgery that can filll the fistula with a glue.Though my doc wants to ver from surgery has anyone tried it??? Im thinkin of goin to anther doc to see if i can get the surgery.

Im in a relationship- they know im on medication, they know i have crohns..i dont want them knowing i wear gauze in my ass 24/7 cuz i have a rubber band that keeps a 2nd hole near my ass open to drain!!!!!

 Reply posted for Over1yr.

I have been dealing with them since 1993.  The first time they just lanced it and let it drain and drain and it got better with my 6mp until 1997.  They time the surgen went in and cleaned it out a bit and left a few setons in.

they have swelled up and drained a few times since but never as bad again.  The setons fell out a long time ago and we never put them back

I know it's tough as a man but my wife turned me on to her light days pads, they are a god send and an underwear safer!!

they are so thin you dont even know they are there, fit perfect and don't get stuck like the gauze.

 Reply posted for Over1yr.

I've been dealing with abscesses and fistulas for 30 years. I had surgery in 1983 where they opened everything up to repair them. The surgeon found 12 separate fistulas. As I was warned, they came back with a vengeance 6 years later. I have been on Remicade for a year and a half which has reduced the drainage and no new abscesses. Work with your doctor and good luck.

 Reply posted for Over1yr.

I feel your pain.  I was diagnosed with Crohns almost 2 years ago when I had 2 perianal abscesses.  I went to an amazing colo-rectal surgeon and she put in 2 setons.  A couple months later I had a 3rd one put in when I got fistula.  It was weird having 3 tubes sticking out of my butt at one time, but it worked.  I wore a sanitary pad every day.  But, being a woman, it wasn't that weird for me.  Since then, I have had all but one seton removed.  My surgeon recommended leaving it in indefinitely to avoid future abscesses.  If my options are to keep the seton or risk another abscess and further damage to the tissue, I choose the seton.  I have not had the glue and my surgeon, who I trust greatly, never recommended it.  I hope everything works out for you.  A second opinion couldn't hurt if you aren't happy with your doctor.

 Reply posted for Over1yr.

I had a fistula that resulted in two peri-anal abscesses and procedures to open and let them drain. The first time, I was not yet diagnosed with Crohn's, and my family doc and the surgeon never even mentioned IBD (even though my mother has Crohn's) nor referred me to a GI. Insane!Sometimes doctors, though well intentioned, do not know best. The second time, I had the diagnosis and was seeing a GI and a colorectal surgeon. The fistula was eventually completely healed by Remicade and 6MP but until then, it drained for about 9 months or so (I was quite familiar with the gauze, too!). I was very lucky to have it heal. I know how painful and embarrasing it is and I would encourage you to get a second opinion. Only you can know what you are willing to live with/tolerate and what you're not. I second the idea of going to a well-known teaching hospital, if possible. Good luck!

 Reply posted for Over1yr.

Please go to another Dr. You should not have to live like this. My husband just had surgery after 18 months of external fistulas. Cleveland Clinic is the best if your insurance will cover it. A quick consult led us to surgery after being told that surgery shouldn't be considered.