Fistula

So have dealt with a fistula since 2012. 

Was in an “ok” place with my seton. Did have a painful granuloma, but it was manageable. 

My CRS has a one day with a FILAC laser that spares sphincters and closes fistulas with laser. Good results in Europe/Germany and in the west coast. 

Long story short: it failed. And now my fistula tract is larger and stool comes out the tract with BMs. NEVER had that issue. It was purely a mucus fistula. This is awful. AWFUL. It comes out because of the J pouch: if I had formed stools, might not be so bad  

It also flares something so that I have issues with urgency and tenesmus. I’m 2 weeks post surgery, and still in pain. GI put me in oral steroids and Canasa in case it’s inflammation. 

My new seton of today is nothing like my old one. Old CRS ties them loosely. Have new CRS. This is much smaller, looped in itself, secured with sutures that are poking me (or will; I’m still numb there from placement). I have a 2x2 wrapped around it. Looks more like a piercing than a seton. The one suture is poised to hit right where the granuloma was excised off, too. 

I had a feeling I shouldn’t have tried this procedure, somewhere at the bottom of my stomach, but it came with such good results, I had to take a chance. You can keep trying with it, but right now I’m so sore, and depressed, and despondent, and angry at myself. 

I can live with a seton. I can’t live with this acidic J pouch stool coming out around it 6-8x a day. I want to die. 

Anyone have any ideas, suggestions, support to offer?  I’m just gutted. 

Original Post

Jan, that’s the article I’ve read. He *wants* the laser full time, hospital won’t spring for it yet. He said he could petition for me to try again. I’m on the fence. Right now I’m just depressed and can’t even imagine a second try  

I should have left well enough alone. But it had such promising results, and it’s sphincter sparing. 

His name is Dr. Jrebi at WVU Medicine. He IS good at what he does, trained at Mayo. At this point all others in trial appear at least not to be having a failure at this point. Only me, yay. 

I was his most complicated pt. The procedure itself is only around 5 years. It can be performed again. He’s been in contact with German and San Diego doctors  before and during trial.  He didn’t do anything “wrong,” I just failed. The laser likely made the tract bigger, burning the tissue then opening. It was closed for about 5 days. It could’ve happened with anyone, as its success, as with all fistula surgeries, are never 100% and often have issues even when successes. 

Yeah, you get it Rachel. Nothing offers 100% positive results. Even with everything going exactly right, the result can be lousy. Seems like the only constant is that fistulas are notoriously difficult and persistent. 

Is there hope that the tract might shrink over time, or is that not possible?

Again, I’m so sorry about this.

jan

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