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I've had my j-pouch for nearly 20 years, and things for the most part have gone quite well. Unfortunately, I've recently had an abscess that turned into an anal fistula.

I had outpatient surgery last week and had a seton put in, and I'm just hoping to get some advice from folks who've been through this before. What's "normal" here, in terms of pain? I expected some discomfort and was fully prepared to handle that; what I've got though is more acute pain that's right along the lines of what it felt like before the abscess burst. Sneezing or coughing is excruciating...

I do still seem to be draining, but I've got a couple of hard lumps "down there" near my anus, with one in particular that's very tender and perhaps the source of most of my discomfort. I worry that it somehow is "independent" of the seton and not being drained by it, if that's possible.

I've been doing sitz baths, and they seemed to be more soothing at first than they've been lately. I see the surgeon again at the end of the month, when he's planning on scoping me and getting further data on what the heck is happening to me; I'm trying to figure out at what point I cry "Uncle" and request to be seen sooner -- and what my options even are right now.

I'd love to hear from anyone who's been through this and can offer advice on coping with this, in terms of pain management, what to expect short-term and long-term, etc. This is a frightening development for me, mainly because things have been going very well for a very long time... Any advice would be welcome!

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Hi there, I went through this. It's really awful…i empathise with you! Especially when the seton is healing it is very difficult and painful. They put my first one in too tightly and say no more it was horrendous. The next one was looser and then healed up. After some time now, I've had it in now for 2 & 1/2 years and I don't even know I have it. It causes no pain and no problems at all. But it did take a few months for me to get completely comfortable. I can't type much but I'd be happy to chat with you on Skype or something if you want to connect please feel free to PM me. I remember how difficult and isolating this problem is!! 

I just had my third surgery uhhgggg I’m in pain it totally hurts like before the abscess popped.(I got it to pop on it’s own a few weeks ago)  Maybe worse at the moment to be honest here…I had two placed today… I previously had two placed 6 years ago from two different abscesses. And then suddenly without any issues and got a new abscess so I had to get this one in and my surgeon went ahead and placed the old one back in as well since I hadn’t had the first ones in since about 4.5 years. What is the long term outcome of this how long do

you all keep them in place? Also how do u guys keep them clean? I place castor oil and it’s mixed with oregano oil. Also the salt baths work really well for me but shoot I can’t do 3 a day ! Lol

I know exactly what you’re talking about. It is a terrible way to live. I’ve tried every cream, ointment, etc   I’ve gone to Cleveland Clinic, Vanderbilt—you name it—I’ve tried it. I wish someone would find an answer because you have no quality of life. It’s a tear in the wall if the rectum, fissure or fistula. Help us please!!!

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