Hi Rachel, where in the US are you, and what CRS are u seeing? Just curious. I have similar fistula issues.

Oh geeze, Rachel. This sounds intolerable. You take a leap of faith and it is a bust. Probably too soon to even think about it, but it looks like second procedures have an even better outlook. I can see why you’d be guns-shy at this point though.

This is the article I looked at. https://www.ncbi.nlm.nih.gov/p...5423928/#!po=32.6087

Jan

I've nothing helpful to say, just tough luck, I feel for you. And appreciate you sharing your experience.

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. 

Rachel, I’m so sorry you’ve had a poor result. When things are more settled it might be worth planning a trip to someone with more experience (and success) with this treatment.

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. 

Rachel, sorry to hear this. I sent you a PM as I've recently developed a fistula. Would love to hop on the phone or text - it feels like there is no one to talk to about these things. 

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

Hi Rachel,how are you doing? I am seeing a new gastro in LA, and will most probably will start remicade. I know what it is to have a new type of seton in, with the hard ties that feel like barbwire. The first few days are terrible and then when the tissue becomes less inflamed it feels less tight (at least in my experience). Have you tried a very very limited diet to control the acidity of the stool coming out? It has helped me A LOT, to the point where the pain and burning was so unbearable that I did not want to eat. I hope you're feeling better. And don't give up, there will be better days. C