Possibly Removing Seton-- Help!!!

[senoraharvey]

Hi all,

I have had Crohn's for 10 years and have been on Humira since September of 2011. I started Humira after developing a recto-vaginal fistula, which required a draining seton. My colon-rectal surgeon at the time felt that I was a good candidate for a flap surgery. I had the surgery in February of 2012 and by April, the fistula tract had moved to create a peri-rectal fistula and abscess. I woke up with another seton, which has been painless and functioning perfectly since April of 2012. I also started taking Humira weekly, rather than biweekly in September 2012. In addition, my symptoms are completely gone. I can eat everything and a recent colonoscopy showed 0 inflammation. I do get minimal drainage still from the seton, but I can basically go a whole day with 1 small piece of gauze.

Two days ago, the knot came out of the seton loop and I panicked. I was able to re-tie it and it's basically about to fall apart again. I spoke with my gastro this afternoon and he said that it is fine if it falls out. He is having a colon-rectal surgeon (a new one.. I changed hospitals since flap surgery) call me to make an appointment ASAP. He wants the surgeon to examine me and decide if the seton needs to be replaced or removed. My gastro said he feels that the Humira is working so well that removing the seton may not be a problem and that the Humira will probably keep the abscess away.

My question is... have any of you had your seton removed while still having minimal drainage? Did the abscess come back? I know that everyone is different... I just would LOVE to get rid of this seton if the CR surgeon suggests it.

Any information is MUCH appreciated.

Thank you & wishing you health.

xoxo,
Vanessa

 

[AlliRuns]

I had my setons removed 6 months after they were out in, they were still draining daily but my surgeon insisted they come out. My fistulas didn't heal needless to say, however, I was not on biologics nor diagnosed at the time.

 

[Misseireann]

I had my setons in for a year, and had them removed because I felt like they were smelly and gross. I just never felt like I could get clean down there. I am completely in remission, and although my fistulas still drain, they aren't quite so gross to me. I am taking a bunch of supplements and probiotics, which seem to help a lot.

 

[senoraharvey]

Thank you both! AlliRuns, did you have an abscess pre-setons? I'm concerned that once the seton comes out, the abscess will re-form. Also, where does it drain from now that the seton is out?? I know it sounds like a ridiculous question.. I'm just confused, lol

 

[Misseireann]

No worries at all! Scar tissue has built up around my fistulas to create a straw like pathway. So... They still drain out. I did have abscesses before having seton surgery, and my surgeon was only willing to remove them when he felt that there was no inflammation period down there. I have has no new abscesses formation for two years, since my Crohn's got completely under control with meds, diet, and supplements. I am having flap surgery in June to fix the fistulas so they don't drain anymore. I have no pain from them, just drainage. If you have other questions, don't hesitate to ask. I know how hard it is to have these buggers, they are so annoying and can be dangerous.

 

[AlliRuns]

Thank you both! AlliRuns, did you have an abscess pre-setons? I'm concerned that once the seton comes out, the abscess will re-form. Also, where does it drain from now that the seton is out?? I know it sounds like a ridiculous question.. I'm just confused, lol

I had known fistulas pre-setons, I guess they were abscesses at one point, but they have been there for so long. Now that the setons are out, they still drain externally, I also pass pus when I take a BM, so they drain the other way too I guess.