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I have had multiple surgeries in that last year for a perirectal fistula. I have had 3 setons followed by lift procedure burt the fistula has reformed. I was miserable with the setons and considered just going for the ileostomy instead. My surgeon is attempting to scare me into a another seton saying without it the fistula will eventually form new tracts and abscesses. Is anyone living with a fistula without complications? I am really feeling like death by sepsis from abscess would be preferable to the agony I experienced from the seton.

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I have a simple perianal fistula. 

 

I've had a seton in it off and on since March 2013. 

 

Surgeon will not cut it out, as he's afraid with all of the pelvic floor surgery with the J pouch, the fact I've had a baby, and I'm in my 40s, that that could render me with some incontinence If he did that, and I'm 100% continent. So I live with the seton.  Also am on Humira and occasional steroids. Those all help too. 

 

The fistula tract is mature. This current seton, I don't even feel it. Everything down there is scarred enough, there's no pain... Nothing. Just a rubber band "piercing" in my butt, lol.  The abscessing and/or skin healing over without the seton was WAY worse to me than the seton. I've taken care of a patient with a septic perianal abscess: it is  NOT pretty. You do not want to go that route.  

 

So, at first I was sort of bummed by my situation, but now I'm just like, oh well, and I plug along. Actually, first time in a long time I've felt ok about stuff. 

 

Ask them about using suture material as a seton. Maybe it was his choice of material that didn't work for you. There are some other options out there. Mine is a yellow rubber one. Again, this far out, I don't even know it's there. 

Last edited by rachelraven

You might want to do a search, which could take a bit of time I grant you -- but there are a couple of people on here living with fistulas with no setons. Cannot remember who or where their fistulas are; sorry.

 

There are other treatments beside seton drains, some of which are proving quite successful. Check into what is being done other places (such as Europe) and ask your surgeon to do the same.

 

Gin

My GI's friend/colleague is doing clinical trials for fistula plugs that get entrenched with stem cells, and it's showing promising results. My hope is for this to work for me eventually. They don't do plugs, because of the high fail rate with the glue alone, but the addition of stem cells is showing better results. But it's not "out there" yet.  Hopefully soon!

I had r/v fistulas instead and had two setons for 3 years, but they didn't hurt.  Remicade really helped me for two years (setons were still in then).  In the end, I went for the perm. ileo. as my Crohn's was getting worse in the cuff and the fistulas were just making new tracts.  I'm sorry that I'm not the success story you're looking for, but wanted to at least call out Remicade- it's the one proven to close fistula tracts.

 

 

So odd, the things that are used regularly in NA as opposed to here, and I'm sure that is true for Australia, etc. For instance, setons are very rarely used here, but the plugs with the extra cells are used regularly!  I don't think they use stem cells here, however -- or at least that's not what they used with me. It was extra white cells spun together; they are having great success with it and are using it in a wide variety of surgeries. Remicade is also used here, although more sparingly.

 

It is ALWAYS a good idea to "push" (strongly encourage?) the surgeon to check out what is being done in other places and what is considered standard treatment by others. Having lived in the US, Canada, and now the NL -- and received extensive care in all 3! -- I am convinced that there needs to be more cooperation and learning across borders in the surgical community.

 

Gin

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