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Hi everyone,

I was hoping someone might have an idea for me. I'm 28 years old living in Charlotte. Dx with severe, fulminant UC at 24 and J-Pouch formation under highly malnourished circumstances that same year. 

I have been considering seeking out a second opinion, and if I do, I want it to be from the best surgeon in the U.S. When I search this J-Pouch forum, I hear Dr. Remzi's (NYU) praises the most, it appears. Is there an agreement on who the best doc is?

I have a fistula trac that has been irritating me for almost a full year now. Just recently I had an exacerbation where I felt a 10/10 searing pain upon any bowel movement and luckily I had a reserve of oxycontin and oxycodone to prevent another trip to the ED. Luckily whatever exacerbation it was eventually drained and significantly improved so I can at least breathe normally but now I'm back to living with the chronic irritation at my anus again.

This is the most recent correspondence from my doctor regarding my issue:

"The fistula trac, which ends blindly is the same one you had for a long time, so its not new. We saw it in the past on the xrays, when contrast was injected in the pouch. Good news overall the pouch looks good, the abscess you had was internally and drained by itself . Probably it came from the same location as in the past . Cipro 500 mg bid and Flagyl 500 mg bid for 2 weeks, then reduce to 500 mg twice daily. Topical tacrolimus oitment in the anal area. You can do the steroids as well. And then we see. There is not much more we can do in the moment."

From all the times I have seen these doctors at UNC they have done a great job of managing my acute issues but I always return to a tough "baseline" state of chronic pain and limitations. I feel like they don't hear me when I try to tell them that I'd like to actively seek a resolution because we have been successful with keeping me out of the ED or the hospital.

I try tell them that any time I walk for too long (including working from 8-5), or attempt to exercise, the anal area gets more painful and I am forced to lay down or get in the bathtub. I also have a terrible time with itching in the area. This has been going on for a year and I've trusted in them in the past, and they have seemed the best thus far among the hospitals I have been to. This is why I'm nervous to make the jump to a second opinion (with a full records request, etc).

Stelara every 6 weeks, Ilex skin paste, calmoseptine, nifedipine/lidocaine ointment all seem to help a little bit but nothing really takes away the chronic irritation. It limits me so much. 

Any help is encouraging and greatly appreciated. Thank you,

John

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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.

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

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