I have heard once you are on Remicade and then go off of it, you cant go back on it..

My fistulas took ten months Togo away with the combo of seton bands, drains, and antibiotics. It was my understanding that steroids and biologics were a bad idea for fistulas considering itll impede healing and prevent your body from fighting the infectious material?

I don't know what type of fistula you have but my son had an internal one.  It was connected to his small intestine, just about the connection to the pouch.  The other end was a huge abscess.  He was on TPN, didn't work, went back to as Ostomy for 9 months, that worked but of course nothing involving his is ever simple.  As soon as he had his second takedown, it was back!  Exact same place.  We know it was gone, he had enough imaging to light up the city of NY.  After doing a drain for six months they did an experimental procedure with the Interventional Radiology department.  It was a biological plug.  It was a custome made plug, inserted through the drain, into the abscess, into the fistula, and into his small intestine.  It worked I guess like a Molly that you insert into sheet rock in that you push it in, give it a little tug and it plugs up the leak or hole.  I don't think most doctors do this.  I was told the success rate was very low, like 20% and then after the procedure, the doctor said it was more like 60% at their hospital.  But my son was only the 13th patient to have this procedure.  Maybe Cleveland Clinic does a few more, but it is not a common procedure.  Fortunately for my son, it appears to be working.  He had it done in September, so it's only 3-1/2 months.  At 6 months he will,have another MRI to see if it has been absorbed by his body.  We know at this point that it has not failed, but until we have the imaging at 6 months out, I'm not saying it was a success although all three of his surgeons are saying it appears to be so.  This was done in NYC at Weill Cornell.  Don't know where you are from, but might be something to look into at a major medical school facility.  Good luck!

Hey jeffsmom!!

Thanks for the reply. I know your son has been through alot. I've followed your story a little when I got the chance to jump on. I had a perianal abscess and fistulas. They actually ended up reeking havoc on me around this time last year. I was hospitalized from the end of October until right before Christmas. The feces that was going through the fistulas and getting caught ended up cause an infection that started to spread throughout my body to the point that I was walking around delirious with a 104 fever. Thank God my sister was there to take care of me. She took me to the hospital where I had to have an emergency surgery and get cut wide open once again to clean out the infection. I was going septic for sure. In the process they tried putting a central line in they punctured my lung. At of all the terrible pain and surgeries I've been through that was the one time I asked God to please take me. I was laying on the bed with tears rolling down my eyes and couldn't breath or tell the nurses how much pain I was in. They finally stuck a tube in and reinflated it. I dropped down to 130 lbs and I'm 6'1 so not a good look. I pretty much had the same thing happen as your son. I had the ostomy again for about 10 months until I got an MRI that showed the fistulas were healed. About a month or two after the abcess was back in the same spot and fistulas opened again. It  amazes me how they could transplant hearts, do brain surgeries, transplant cornias so people that are blind can see again but yet no one has any idea how to successfully get rid of fistulas huh. Anyway I'll continue to fight the good fight and I'm happy to hear your son is making progress. Oh I live in Northeastern PA where there aren't too many options for great Drs but when it comes to colorectal surgeons I guess I got the pick of the litter. I'll keep you updated on my progress. Thanks again for your reply. God Bless you and your son. 

You can come to NY!  I live in NJ and we go to NY.  Thank God Jeffrey never went sepsis.  That was the only good news we had.  The abscess was huge, on his pelvic bone and originally thought it had spread into the bone.  I can suggest a couple of surgeons that are doing good work with fistulias.  Your sounds a lot like Jeffrey's. 

Youmare so right, they can do all sorts of complicated surgeries but they can't fix a fistula.  I can appreciate the amount of pain you were/are in.  Jeffrey has spent the better part of the last two years on heavy drugs.  This summer it was Fentenal.  It was so bad, he was recommended for medical ......oh crap, I don't know how to spell it, weed!  Medical weed.  He refused.  Also, Dr. Remzi is in NY now.  Think about it.  PM Me and I can give you names if you decide to go.  One of the surgeons that operated in Jeffrey said he is doing some work with fistulas and is having success.  He is the wonder boy at Cornell.  He also did my weight loss surgery!  I figured if he was good enough to operate on my son, he was good enough for me!

keep me posted as to what's going on.  Good luck!��