Most of us have never seen Dr. Remzi, but he does seem to be the acknowledged expert in pouch re-do procedures. If your fistula is deemed to be from Crohn’s then I’d guess most surgeons (probably even Remzi) wouldn’t tackle a re-do. If the fistula is just from the surgery then a revision might help. I’d probably consult with Remzi if I were in your position.

The itching should be pretty straightforward to control, as long as you stay on top of it. It needs to be properly diagnosed. Is it fungal? Does the area stay damp (from seepage, etc.)? You might need a dermatologist’s help, if your GI isn’t getting the job done, and it’s easy to get discouraged, but there’s no reason to let this add to your problems. You have to be steady and patient to handle stubborn skin issues.

I believe this fistula is the only fistula and first arose after my original J-Pouch takedown 3-4 years ago when I had a 5x6 cm abscess in the perianal area. It is much better than it was back then when they were inserting drains all the time but still a significant issue. It is located right at the ileoanal anastamosis and I've never been diagnosed with pouchitis before. I don't have a Crohn's diagnosis. 

Should I try the 2 weeks of Cipro and Flagyl and see if it heals the fistula that has been there for over a year? Or should I call Dr. Remzi's office on Monday and try to get an appt. I imagine he's booked out pretty far.

Oh and also, what kind of surgery would be needed to repair a fistula located right at the anastamosis. You could touch it with your finger during a digital rectal exam. I think in the past my surgeon (prior to moving to Maine) would open it up a bit during an exam under anesthesia.

Fistula surgery is tricky business, often doing more harm than good. I'd undertake it only in very skilled hands, and even then only with a surgeon who seemed to be appropriately conservative. Remzi would be a good choice, I think. Sometimes the smartest thing to do with a fistula is to learn to live with it, and I know just what a terrible thing that is to say.

I'm not quite sure what the doctor is trying to do with the Cipro and Flagyl. These are great drugs for pouchitis, and it's not clear (to me, at least) that he's made that diagnosis. They would be surprising choices, I think, if the goal is to treat the abscess. I don't think they are likely to heal a fistula. Nevertheless, you may have more than one thing going on, and they might be worth a try. The main problem with starting both at once is that if you have a nasty side-effect you won't know which drug caused it.

Hi John, so sorry about your chronic pain.  I’m jumping in here with my two cents.  My son sees a number of doctors at Weill Cornell in NYC.  He had a bad internal fistulia that no one could figure out what to do with.  It was all internal, from his j-pouch to an abscess in his pelvic area.  He was on more drugs than an addict.  His main surgeon at Weill Cornell, Dr. Shukla  brought in Interventional Radiology, Dr. Lee.  Dr. Lee did an experimental surgery on my son.  Jeff was only the 13th patient that it was done on at Cornell, the third by Dr. Lee.  It was a biological plug.  There is also another surgeon there, Dr. Afanaha.  He is doing some work on fistulia as well.  If you are going to come up to see Dr. Remzi, I would try to see Dr. Shukla as well.  It would truly be worth your time.  As most folks on this site know, my kid went through hell for about three years. So far the plug is holding and my son has had no further complications.  It’s been almost two years now that he has had thenplug.  Now if I can convince him to take better care if himself.

Good luck to you, feel better.

dianne 

Hi Dianne,

Thank you for your response. I am really glad to hear that the plug is working well for your son. I hope it continues. I definitely understand the part where you say, "Now I wish I could get him to take better care of himself" because I am sure my mom thinks the same thing about me. My doctor just responded to a few questions I had and he said that the fistula I have is not a true fistula; rather, it is a "blind-ending tract (a sinus)". He is going to speak with my surgeon about the possibility of opening it up further so I may be holding off on traveling to NYC at this time. Thank you for the option though and I will definitely keep Dr. Shukla in mind for any future issues.

John