What to do Next?

Everyone has the right to refuse treatment, and sure, you can suggest further diagnostics before continuing with treatment. On the other hand, you can't really demand specific treatment. You can only demand a full explanation of the plan and his rationale for it. He may go along with you right away, but most doctors don't like being told how to do their jobs.

I would want to see the surgeon directly, and not keep seeing the PA, if I felt like I was getting the run around.

Jan

Sorry to hear about your troubles deathstalker. I would say you call all the shots though. It is your body and ultimately your choice with how you want to be treated. I would not stand for it another day if repeated attempts at excising the abscess have failed. Speak up and let your opinion for your treatment be heard.

Jan,
My issue here is why not just do the MRI? What's the worst that can happen. The more info, the better - especially in light of the fact that 50-60% of abscesses end up as fistulas. Frustrating. My guess is that this is insurance related.

When I finally got back with my old CRS, that was exactly what he wanted first: an MRI. He knew, immediately, as did I, that I had a fistula based on the history, but the MRI was confirming.

They may not "cut" anymore, though... an exploratory under anesthesia CAN diagnose a fistula (they use dyes and I've read even milk (!) to see the "bubbles" that come from the fistula tract). So it's not out of the realm of possibility that your surgeon will be able to dx and treat the fistula in the OR at that time. Perhaps put in a draining seton.

My surgeon will NOT cut on me, though (absolutely refuses to consider a fistulectomy at this time). He refuses to do anything but the draining seton. I'm irritated and maddened by that, but he feels with my J pouch history, cutting around sphincters could leave me with a degree of incontinence, and he won't go there. I DO trust him; he's been practicing for YEARS, and he's a really good surgeon, but it doesn't mean I have to LIKE it.

Hey, if I was the MD calling the shots, that would be my exact response; why not do an MRI and try to see what we are dealing with? But, my point was that asking about it and demanding it are two different things. It could well be an insurance issue (like they require a certain amount of treatment before authorizing an MRI). It could also be your surgeon's recommended practice.

It is even more difficult when you are not even seeing your surgeon, but his PA. One thing for sure is that it is important for abscesses to remain open and draining. If it keeps healing over, then you have this recurring cycle and that IS a way for a fistula to occur. If you are not getting information, you just feel like you are getting the bum's rush. You are entitled to know what the long range plan is and to participate in that plan.

Not all surgeons are prima donnas that bristle with every treatment suggestion. But, some are in a big way.

Jan

Upon further examination, the PA also confirmed that it looks to be a fistula. She used some sort of metal wire probe at the site of the incision where they excised the abscess and saw that the tract ran deep. I'm scheduled for an exploratory / fistulectomy / seton implant next Thursday.

My surgeon is hesitant to do a fistulectomy because fistulas are often associated with crohns disease and he's afraid it won't heal well if this is the case. Even when I did my J-Pouch, I had to undergo a camera ileostomy / Prometheus blood assay to rule out crohns. I've always had some symptoms of both UC and Crohns though for the 25 years prior to my J-Pouch, I never had any inflammation in my small intestine.

Anyway, at least I'm finally getting this taken care of. Not looking forward to the recovery but glad to be addressing this in a more permanent way.

If he just does a seton, it's not bad. Stops that filling and bursting cycle. I don't LOVE it, but it's livable.

I've had two setons in the past. I don't really mind them at all. Eventually, the tracts stopped draining. What I learned is that if you're going to have a seton, merseline is MUCH more comfortable than the rubber-band material. My first surgeon used the rubber band seton and it always chaffed the skin. With the merseline setons, you didn't even know they were there.

With the experience Repair I had with fistulas repair, not knowing all the information I have now.
I say make sure there know where the fistulas is located and not assume where it is before they start repairing.

In my case they put in a seton, it had fallen out about 3-4 weeks later and then decided to repair. Unfortunately I was so focused at it being repaired, that I didn't ask more questions then that. Sadly I hadn't fallen on this forum yet It helps tremendously discussing our problems with people that can relate and have been there!

Anyhow they tried repairing this fistulas to many times that it has left me with incontinence, which they never explained to me that it would occur. To top it off lead to more complication which lead to more unneeded surgeries, and know I switched hospitals that they don't belive I actually have one even though the MRI reports of one. I am still with end ileostomy with diversion pouchitis so I think.... It's 2 years and I'm still in limbo!

So if you feel confident with your surgeon, and he wants to put a seton in for awhile to keep an abscess from developing. It will give you some time to work on your next plan.

Like rachelraven said its live able.

I hope they give you the best treatment you deserve!
I wish you well.

They're leaning away from a fistulectomy and more towards seton placement. I've had good experience with seton placement in the past. Also, my surgeon doesn't really want to perform a fistuletomy if indeed I have Crohns because he fears it wouldn't heal. That being said, he wants to examine me under anesthesia on Thursday first before cutting, etc. I'm going to urge for the seton too based on my case history and previous success rate.