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04-03-2014, 11:42 AM   #1
Davidevans2112
 
Join Date: Jun 2012
Location: Cardiff, United Kingdom
Setons-

Hi all.
I'm having a seton put in next week to begin to sort out a fistula as I start on Humira. I thought I had an idea of what this process involved but reading a couple of things here (I may be mis-undertanding) have confused me. A seton is a drain which stays in for some weeks/months, right? Or is it something that just drains the site then and there?
If the former-where does it actually drain TO?
Also- how is it living with them if they do indeed stay in? Is walking particularly uncomfortable? Mind you, my 6-7 fissures make that uncomfortable as it is! And going to the toilet? As it is I am having to strain passing entirely liquid movements. I'm just imagining a seton would just heighten the discomfort.
One more thing- anyone aware of the success rate in actually healing fistulae?
04-03-2014, 12:46 PM   #2
theOcean
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My abscesses were so bad that I was having liquid BMs that I was straining to pass, too -- once the seton was put in, that started to slowly improve.

Walking is uncomfortable at first. Once things start to heal more externally, it gets better -- now I don't notice it anymore unless I do something too vigorous, but that's because mine is kind of badly placed.

The seton basically keeps the fistula tract open, and the incision they make to insert the seton is also where it drains to. So in my case, since I have a peri-anal fistula, I have to wear pads or pantyliners to catch that drainage. It can drain for some time until it eventually stops, but biologics will help with it.


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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-03-2014, 12:47 PM   #3
theOcean
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Also, my GI says the success rate is 10-20%.


04-03-2014, 01:04 PM   #4
Davidevans2112
 
Join Date: Jun 2012
Location: Cardiff, United Kingdom
Oh Christ, I think mine is a 'peri-anal' fistula. Honestly, that draining sounds disgusting, or is it not quite as bad as it sounds?
Thanks for the help, though! Best to know. I'm shocked that from multiple consultations with my GP and bowel specialist I haven't been told about this.
04-03-2014, 01:12 PM   #5
theOcean
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It... is pretty gross at first, mostly because of the smell. That goes away after awhile too once things heal more. I guess because I'm a girl I'm more used to the idea of dealing with things draining?

And yeah, even after my surgery it took awhile for me to get as much information on setons and everything as I wanted! But I've learned a lot since, and I've had mine since last May (hopefully getting it removed this month!) so if you have any more questions, feel free to ask or PM me with them.

Also a note: because the seton keeps the tract open, it's also unable to heal and close. It's only after removing the seton that there's a chance it will. (I have high hopes mine will, though.)


04-03-2014, 01:24 PM   #6
Carrie171087
 
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Hello, Yes with me I was also not told much about setons. I attended a&e with a reoccuring abscess. Before they operated they explained about setons and the possibility of having one, then i was told they would not get a clear picture until in the operating threatre. I woke up and I'd had 3 placed in my 3 fistulas. At first it was sore. Visiting the bathroom was an absolute nightmare and still is at times 2 months later. As time passes ull learn to live with it. I've started on azathioprine but reading all people's experiences on here the biological ones look as though they work better.
And mine leak all the time it's totally gross. :-(
04-03-2014, 01:35 PM   #7
theOcean
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I was on Aza and Humira together, and yeah, I can definitely say Humira has done wonders for my fistula. I don't think Aza had any impact, but I also didn't expect it to because it's just a maintenance drug to keep you in remission.


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