People come here with a variety of different issues, having only J-pouches in common. Prednisone and biologics are quite useful for some of those issues, if milder treatments are ineffective. J-pouch surgery doesn't precisely cure UC, though it was long described that way. Some inflammatory processes can remain, a small amount of colonic tissue (the rectal cuff) remains a direct target, and sometimes Crohn's shows up in spite of being unwelcome. Do you know what caused his fistula?

Scott, not really.  We seem to have an issue that is not common.  after his take down in SEPT. My son had been in a lot of pain.  Complaining about inside his lower back, pelvic bone area.  In Dec. we finally did an abdominal scan and it showed a peach size abscess but it did not show a fistula.  When they put in a drain, and cultured the abscess the only thing that grew was "rare uidentifiable fungus".  Two weeks later they did a fistula gram and found the fistula.  Communicating between the abscess and pouch.  The abscess has since collapsed but the fistula is still producing about 15-20 ml of junk.  The drain is still in his back.  When they found the fistula, they immediately admitted him and put him on TPN.  That was mid-Jan.  He still has the drain, and is still on TPN.  Nothing has gotten better.��

Jeffsmom, I hope things start to turn around soon. Perhaps there was a pouch leak that evolved into this abscess, and the fistula is simply the path the leak followed. In any case, plenty of folks here have been through abscesses and recovered fully, though I don't think anyone includes it in their favorite memories.

Prednisone, biologics and the like will not heal fistulas that are simply a result of surgical complication. Only if they are due to IBD, will these drugs help. Prednisone is sort of a dangerous proposition when infection is involved.

The trick is knowing if this is IBD related. But, if the leak is at the suture line, it is most likely a complication, not IBD caused.

I am not trying to dash hopes of other treatments. You should ask about them. But, I did not want you to have false hopes in treatments that would not be appropriate.

Jan

Thanks everyone for your input.  Very helpful.  This is a surgical complication.  There is a micro tear that caused the abscess/fistula.  The problem is, no one can find it.  And no one seems to know how to fix it. in the call yesterday between my surgeon and Dr.  Remzi, it was discussed and some ideas were tossed around but they may not be viable in my son's situation.  He does not have enough small intestine to just make a new pouch.  Also, to try and plug up the tear, they have to do it from the inside.  So the normal ways of fixing it may not work.  And as I said, they can't tind the hole.  It's been looked for on a fistula gram, pouchoscopy, scans, capsule studies.  It's not showing up.  They can't see it.  All I know is that when they did the pouchoscopy, everything was fine.  Nothing leaked, but when they did the fistula gam, the dye ran right into the pouch.  I saw the x-Rays myself and you can't see where it is entering the pouch.  I'm just thinking out loud right now.  My life has been on hold for 15 months dealing with Jeff's UC problems, really since he was 6 years old.  Now we are going in for the third huge surgery in 9 months.  It's a lot to take in, and a lot for my son.  In addition to having UC he is also Aspergers, so it really complicates the situation.  I'm trying to think outside the box on how we can preserve this pouch.  It can not fail!  But with this latest development .....  I'll find out a little more tomorrow when we meet with the surgeon.  But from what he said, there is no data on this particular situation, and most of dr. Remzi's ideas don't seem realistic because of Jeffrey not having enough small intestine to work with.  Since it was a phone call and Remzi has never had his hands in side of my son, I kind of have to go with my folks are saying.  I'm probably not explaining this correctly and you guys diffinately know much more than I do.  I'm just trying to learn as much as I can, wish I started asking questions Sooner!

Dr. Remzi is pretty much top dog in regard to pouch salvage. He would also be the top doc for dtermining whether there is enough small bowell for a redo. It only takes 6-12 inches, and the normal length of small bowel is 15-20 feet, more than enough for 2-3 j-pouches. But, there are individual variances, and if he had some small bowelresection the first time, that would make a difference. 

The more you can get Dr. Remzi's consulting opinion, the better.

Jan