For Those with Setons . . .

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Regular Member

Date Joined Jun 2006
Total Posts : 139
   Posted 6/20/2008 3:00 PM (GMT -7)   
I had a seton put in last week.  It is not terrible to live with, but I would like to be done with it sometime.  I need to think about some end in sight!
How long have you had one in/kept one in before having surgery or having it pulled out?
My surgeon talked about doing a mucousal flap advancement surgery, but that sounds like a rather extreme surgery IF there is ANY chance of it healing without the procedure.  I start Remicade on Monday, don't know if it will help, but it is certainly worth a try and maybe will prevent any further Crohn's symptoms from popping up.  I have had 2 resections already, the last one exactly one year ago . . .
Thanks for your thoughts!

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 6/20/2008 4:38 PM (GMT -7)   
Hi Pattytx,

I sorry you had to get a seton!! I have two with the oldest being about a year and a half old. I have heard that Remicade and Humira can shrink them, but they don't completely go away without surgery. Unfortunately, I'm allergic to Remi and Humira. The advancement flap surgery success rate in Crohn's is only 70-80%. If it doesn't work, you are likely to abscess again. Also, they won't do the surgery until the inflammation is gone and the tissue is healthy enough to manipulate. My Doc said it takes many months to heal down there.

I really suggest you be patient. Living with a seton is workable. I suggest you wait awhile before thinking about surgery until it is all healed down there to give yourself the best chance for success.  I also suggest you search this site for "seton".  There are many good posts on this subject that may give you more insight about living with setons.

Take care!

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 6/21/2008 8:46 PM (GMT -7)   
My seton will turn 2 in Sept. I was/am still on remicade. I have no plans of taking it out or having surgery.

Regular Member

Date Joined Apr 2004
Total Posts : 41
   Posted 6/21/2008 9:15 PM (GMT -7)   

I have had 3 setons, I think the longest one was in was about 9 months or so.  The first two healed nicely on their own and were easily removed in the office without surgery.  The last sucker they tightened twice, something to do with where it was located, too close to the sphinxter muscle, that was extremely unpleasant because I didn't have good enough pain killer to get me thru.  I know better now.  But I just lost it 2 weeks ago and had a party!  jk, but it was exciting.  I celebrate when I'm feeling good in a big way, so having a drain fall out ROCKS! 

I soaked alot when it was uncomfortable.  I caught up on a lot of reading!  I bought baby wipes to keep it clean during the times I couldn't soak or when I wasn't at home.  There were days when it bothered me a lot, but then days when I didn't know it was there.  NOT having one was way more painful.  There is an end in sight but you have to be patient and let it do its thing.  Don't let it rule you, accept the bad days and move on and celebrate the good days. 

I hope the Remicade helps you.  I up'd my 6mp from 50 mgs daily to 75 and 100 on the weekends, seemed to do the trick.  Good luck!

Regular Member

Date Joined Jun 2006
Total Posts : 139
   Posted 6/22/2008 1:42 PM (GMT -7)   

Thank you for your responses!  I have been reading a lot of posts about setons, but I was curious to know how many of you did actually have some success with removal.  My surgeon was talking about possibly doing surgery in a month (to give it some time to heal enough beforehand).  My gastro was the opposite--I  could have it indefinitely.  I am not in any hurry to have another surgery, but I am a teacher and if it needed to be done, it is much easier to do it over the summer.  It is good to hear that you can live with it fairly trouble-free as well.  I had an upped dose of imuran in Feb. and now the Remicade will start.  I am really hoping that it helps things along.   Thanks again!


Regular Member

Date Joined Jan 2006
Total Posts : 158
   Posted 6/23/2008 8:09 AM (GMT -7)   
I have had my seton for a little over a year. I've was on Humira for about 10 months and didn't show any improvement. I agree with some of the others - some days I forget I have the seton and other days it bothers me all day long. It usually bothers me when I sit on a hard wooden chair for any period of time. I have a doughnut pillow on my kitchen chair. I always need to keep gauze on it or the drainage will cause a huge mess and become very irritating.

My doctor doesn't seem very hopeful that this fistula will close up on it's own. As much as I would like to have the surgery to get rid of it, it doesn't seem like a very high success rate and I just don't want to have to have another seton put in if it abscesses again.

Good luck to you.
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