Sorry-- seton, not ceton. Still new to some of the terminology!

I STRONGLY ADVISE AGAINST the fistulotomy (lay open procedure). I had that done and it left me wildly incontinent. Even with a subsequent sphincter repair, I just have low tone now and with our loose stools (and even when I get my stools as thick as possible) I have incontinence issues. I cope with meds to thicken stools, a cotton ball tucked up inside, and use a bidet regularly to keep things clean and healthy tissue. I also got a spinal chord stimulator a couple years ago. It helps with the incontinence somewhat, but I still couldn't function without the cotton ball tucked up there, the incontinence is a major issue post-lay open surgery.

If I knew then what I know now, I NEVER would let them operate with that procedure on me. I asked and was reassured time and time again that the surgery wouldn't affect my pouch, which technically it didn't, but it TOTALLY affected the ability of the pouch to maintain continence. Go for a drain (seton) or other less invasive procedures first. DO NOT have the lay open procedure done unless you don't value your continence.

Commented here before. Agree, be careful with a fistulectomy.

http://j-pouch.org/eve/forums/...437045276#6437045276

I go to Cleveland Clinic as well - seems that a seton is often placed in a fistula before any other types of surgery are considered. This is to help the fistula's "skin" inside heal, which helps the chances with other types of fistula surgery. It also prevents the outside hold from closing up and abscessing.

Fistulas are tricky, as I'm sure you're aware. Surgeries are performed based on your fistula situation - whether complex, whether it branches, whether it's straight, angled, which muscles it travels through, how close to the skin it is, etc.

I went in to an EUA and came out with a seton, not happy about it, but it does it's job. I'm not a candidate for fistula surgery of any kind right now.

Best of luck.

Andy here. Thanks to all who responded to my wife's earlier post. All these concerns are already churning through my head. I came to CC to have the doctor who did my j-pouch check out my abscess/fistula as I was getting frustrated with the lack of progress or direction from my local GI and cool-rectal surgeon. Both my local doctors are proceeding cautiously and very aware of the dangers
Of surgery and incontinence with my history. The local surgeon had floated the possibility of the FLAP Advancement surgery if surgery is necessary and I've looked into that as well as the LIFT procedure and stuff being done with fistula plugs. I figured coming to Cleveland would help me get info on all my available options.

So my exam with my pouch surgeon was this morning. He's a great doc and my pouch has been amazing, but he's definitely one of the senior staff and very old school. He still won't do laparoscopic procedures. He did my exam and agrees that we're most likely looking at a fistula, though he couldn't find the internal opening. He decided that be would do a EUA and take care of whatever the issue happened to be. When I asked him what he would do to take care of it, he said it would depend on what he found. I clarified that I wanted to know what the options were based on what he found and he got a little testy and said it would be a fistulotomy or a seton. I asked him about other procedures like the flap advancement, LIFT, or plug and told him I had concerns about incontinence. Told him I wanted to know what procedure I was getting before we proceeded. He acted put off and asked sarcastically if I wanted him to wake me up. I said, yes, I do. Then he told me that I really didn't know what I was talking about and that incontinence wasn't a concern. I told him I'd agree to the UAE to determine the location and scope of the fistula but that was it. The nurses asked a few questions and then the doctor handed me a signing pad and said I needed to sign the consent. I asked him what specifically the consent was for and he said it was for UAE and seton placement. I respectfully told him that I wasn't going to sign that, thanked him for his time, and told him we were done.

I think I'm still reeling a little bit from the whole thing. What bothers me the most is that had I not done my own research I could have easily ended up putting my trust in him and getting a surgery that negatively effected my quality of life. I'm also bothered by the fact that even knowing what I didn't want those procedures without exploring other options still almost wasn't enough to keep him from doing what he wanted to do anyway.

After the doctor walked out the nurse encouraged me to do some research and find a doctor at the clinic who was open to other options for fistula repair. So that's what I'm in the process of doing. Appreciate folks here confirming that I had legitimate reason for concern and I hope there's someone on the boards who has some experience with a Cleveland Clinic doctor who is a little more forward thinking.

Thanks again for all your help and for listening to my rant. Think I just needed to process what was all in all, a weird morning.

Andy

For what it's worth, until the location of the fistula is known the surgical risks can't be known. Incontinence is only a risk for certain locations of fistulae.

Good point Scott. Thanks. Is it common though to do the corrective procedure at the same time as the EUA? Makes me really uncomfortable to think of not getting a say in how to proceed. Seems like a good way to wake up with something you don't want. Maybe I'm being too anxious though the example given earlier is exactly what I'm afraid of.

I found out yesterday that I need an EUA to find my fistula too. Now I'm worried the surgeon will do something while I'm out....although I suppose I shouldn't, since he said it's only diagnostic and should take about 10 min...
Katie

Yikes Katie! Sorry to freak you out. I wouldn't worry too much. I don't think my experience was probably normal.

I do have an appointment on Thursday for a second opinion. Looked up the doctor and read some of her research and feel much more reassured that I'll have actual options and a say in how we proceed.

Andyp

Bebekspor, you will have to sign a consent form prior to the EUA. In it, it should mention possible procedures, such as placement of seton. If you're not sure what the surgeon's plan is, just ask.

My surgeon at CC is Tracy Hull.

Some folks would rather not have anesthesia twice if once will do. You *must* trust your surgeon, though, or you need to find a different one. Even if all that's broken is the communication style, that's enough reason to shop for a new doctor.

Andy, it sounds like you'd do better with a surgeon willing to discuss the risks and benefits of all the procedure variations he's contemplating as possibilities. This seems perfectly reasonable to me, but it may be more than he's used to communicating.

I would recommend focusing on what's important to you rather than specific techniques. For example, if you say "it's critical to me that you not undertake any procedure that carries a risk of incontinence," and "it's okay if the first procedure is only diagnostic because of that" then the surgeon, who will hopefully know where the fistula is and what procedures make sense in your situation, will have a boundary appropriately set by you.

Every decision in surgery reflects trade-offs. A decision to avoid any risk of incontinence may make it more likely you'll still have a fistula a year from now. The guy is probably very good at navigating those trade-offs on the patient's behalf, but not quite as good at discussing them while they are still hypothetical.

I trust my surgeon, but I am going to call their office because I did sign a form and stupidly did not read it first (I always read stuff before I sign it!).
Good luck with the new doctor!
Katie

Ha! Don't feel too bad Katie. I'm sure you're in good hands. But having worked in the practice side of a medical clinic and now on the patient care side, it's always a good idea to read through those I formed consents. Some docs are great about explaining it al in detail and some just don't. Not a knock on them but it's always good to know what you're agreeing to.

Thanks again for the advice Scott. Communication is critical in the doctor/patient relationship and I'm sure that's one of the breakdowns my doctor and I had Monday. He was ready to consent me without explaining anything more than he was going to out me under and take care of the issue. I had to ask pretty specific questions to get to the bottom of what that meant and even then, his presumption of trust wasn't as much of a concern to me as his narrow list of possible fixes. I'm entirely ready to trust a doctor to make decisions once I'm under once we've agreed on what options are open.

I've got an appointment with another clinic doctor on Thursday after doing some research and talking to some clinic nurses to get suggestions. This doc specializes in surgeries that preserve and restore continence and has done research on techniques that aren't even widely I practice yet. I like your idea of starting out by communicating my main concern of preserving sphincter function. That's a great place to start and now that I'm working with someone who I know is exploring the latest techniques in this area, I feel like I'm more confident in moving forward.

Thanks again for all your help!

Scott, the way I was explained to is that our BIG pelvic floor surgery with J pouch reduces everyone's sphincters by a margin.

It is true, some fistulae run through sphincters, which is riskier for fistulectomy, but they all carry a risk of incontinence, no matter where they sit, once you're "filleted" open in the tract.

Add our surgery, or, for a woman, repeated pregnancies, and the risk of incontinence raises exponentially.

No argument, Rachel. My point was just that fistulae can be just about anywhere (though I see now that this one was described as an "anal fistula," albeit in a male). It might be that this is an area where surgeons are prone to serious overconfidence about the outcome, if they fail to properly account for our special circumstances that compound the risks.

Hello friends! Thanks again for all your advice and experience shared. Helped me get things straight in my head for my second opinion appointment Thursday.

Very happy to report that this was a completely different experience. I got the impression that the new doc wasn't sure why I was there and she strongly implied that I shouldn't expect her opinion to be different than her colleagues. So I took Scott's advice and started by expressing my goal of doing everything possible to treat my fistula while minimizing the risk of incontinence. I explainedy concern that her colleague didn't perform any of the newer procedures that I'd hoped would be on the table as possible solutions.

She was immediately on the same page and explained that her colleague was the most senior staff member and very reluctant to embrace new techniques. She affirmed my concerns about incontinence and assured me that she was very comfortable with all of the treatment options that are currently being utilized. She talked about our options and laid out her plan. I'm coming back for EUA in another month or so and at that time she'll determine the internal opening of the fistula and place a draining seton to promote some healing of the skin. She was even excited about the fact that she is using a brand new seton developed to be used with less pain and discomfot (no knots!) In 6-8 weeks I'll return to repair the fistula and, depending on the location of the internal opening, she's going to use either a bio-plug or do a LIFT procedure. I'm completely comfortable with this course of action.

As we were finishing up, she decided that she wanted to take a shot at locating the fistula via a 3-D ultrasound. Problem was that we were at a satellite clinic and the ultrasound machine was at the CC main campus. She looked at her schedule to see if she could get me in tomorrow between her early meetings and morning procedures. She wanted to do the ultrasound and not a tech. She was worried about the timing though and called over to the main campus and asked one of her doctor friends/colleagues to stuck around until I could get back to campus and do the procedure for her. He agreed and I got my ultrasound and crazy enough, it appears that he located the fistula tract and the internal opening! Even better, it appears the fistula enters into the rectal stump below the reattachment suture line and doesn't involve my pouch! She's supposed to call me tomorrow to discuss the results but she may have just saved me and MRI.

So all in all, it was a great day. I'm so much less anxious now that there's a plan in place. Thanks again for all your help. I'll update this thread down the road with how things proceed and the results so that others with the same issue can see some solutions.

PS- Katie, how did your UAE go?

Wonderful! Well, as wonderful as fistula related news can be, anyway. Glad you found a doc willing to explore more conservative options with you!

I'm glad you were able to connect better with the second doc, Andy.

Glad you have some better news! I have my EUA Sept 30th.
Katie