Living with a Seton

[longboarder78]

Hi there everyone
I'm a new member here and would really apprecieate some advice regarding fistulas and Setons!
A bit of background info to begin with - I'm a 34 year old British guy, fit healthy and pretty outgoing.
Following a few months extreme discomfort I was recently diagnosed with an abcess in the 6 o'clock position on my anus, having visited both my GP (several times) and now also a colorectal surgeon I am scheduled for surgery to have the abcess laid open and drained. Currently I am not diagnosed with Crohns, although there has been talk that it may be a root cause of my problems (general digestive upsets/cramps....) and they want to perform a colonoscopy while I am in hospital for the fistula. I really do take my hat off to all you who live with this on a daily basis, I keep hoping that I will be cear from Cronhs, but at least if I am diagnosed I have found what seems to be an excellent support site here. Here's hopingn though...
Following my last appointment with my CR Surgeon, after some 'investigating' he believes that the abcess has become a fistula, and I am now also finding fecal matter in the discharge too so not good news really (sorry about being graphic but I guess we are all in a similar boat here - no shame!!).
So far the pain has been OK. Not great by any stretch but OK and I can deal with it. I also understand that the surgery is a necessary evil in trying to get this to heal so I am approaching it with an open mind in regards to healing and recovery - looking at the long term pictuer and all that!
What concerns me is that on my last visit to schedule the surgery the CR surgeron said he would more than likely want to put a seton in the fistula to aid draining as he thinks it's quite a 'high' one . this could be in there for a year or more depending on how it responds.
I know what these are following research on the web but I am concerned as to how much having one put in will impact on my lifestyle.
Normally I run, bike, swim, surf, do yoga, go to the gym and lead a very active lifestyle.
Does anyone have any experience in how a seton can affect your day to day lifestyle and in particular exercise?
I worry that I am going to be constantly aware of this thing hanging out my *** and that I won't be able to do the sports that I love. As someone who loves exercise and keeping fit the prospect is quite daunting. Will I still be able to go in the sea? Can you run with one in? I've also read a lot of variation in the size of setons, some are described as a thread while others seem to be a lot thicker, almost like a wire or cable tie, I'm assuming the thickness of the seton is going to affect how much you feel it too?
Any advice on these matters would be much apprecieated as the doctors are being predictably non-commital!
Are they any other guys out there who have gone through this?
Thanks for reading,
James

 

[ontariomom]

Hi there!

I had a large abscess rectal,rupture on me. It became a complex fistula and they put a seton it. That was last June it got it in. Now i have a fistula in my other butt cheek as well, which i assume is a simple one as i dont seem to be bothered by it anymore.

I have a plastic tube lik,e seton. It doesnt hang out very far, not past my butt cheeks at all. I no longer really notice it . At first i found it hard to get used to it being there during bathroom time. I was afraid of touching it or such.

I do notice when i am too active that i ache and weep. I dont know if that is normal or not. I really havent asked anyone. I am just starting to get back into working out doing short kickboxing work outs. So far, they arent too bad.

Now recently i have asked the colorectal surgeon about swimming and he told me it was fine as long as i wasnt weeping. I did post a question about that in the board for fistulas so hoping someone else has experience with that.

I also find i ache alot on days when i have alot of D too. I also have abdominal pains that go with the Crohns so that slows me down.

I think it took me a month before i was comfortable and able to ignore the seton......lol...it still kinda creeps me out a little.

From what i know, as long as you keep it clean, you can do almost anything you want to if it doesnt bother you.

I hope some of that made sense. I am half layin on the couch right now due to my stomach pain so not really sure of what i am typed!! lol

 

[Mark63]

Hi and welcome to the Forum.

Crohn's is something that I've lived with for more than 25 years. Abscesses and fistulae are some thing that have been part of my life for the last 7 years. I'd like to say this has not impacted my life, but it has. My capacity for sitting and driving has been severly limited, so heading for the hills for weekends walking has been out. Good days are near a normal life, but bad days mean even walking is a struggle.

The only thing I choose not to do is go swimming, I feel it's pretty antisocial to be in a pool with a constant leak of blood/puss. Being on immuno supressive drugs, I also tend to stay away from potential sources of infection.

Early diagnosis, effective treatment, along with a positive attitude and generally keeping fit and well are the keys to leading as near normal life as possible. Your body will tell you what you are able to do, all you need to do is listen.

I wish you well.

Mark

 

[ontariomom]

Mark : can i ask: i had a post about my fistulas and maybe you know sinc eyo have been dealing with this longer then me. Is the only reason i got told not to swim when i am weeping ahve to do with actually getting the pus in the pool????? I dont weep a great amount these days, probably less then what my youngest blows out in snot while in the pool!!! lol I have avoided our pool and hot tub for a year and half, and today is feeling like 39 degrees outside!!! So i am trying to figure out if it will hurt me, or if its only for pool cleanliness......

its our own pool and hot tub so we have no problem shocking the water after i use it if need be to kill any germs.........

sorry to hijack the post......

 

[Mark63]

Hi,

I would choose to avoid public pools. If it's your own pool and weeping is minimal, then I shouldn't think keeping the water properly dose should do the trick. If you have a hot tub I can imagine that it would be most soothing, a nice warm bath certainly is for me.

Mark

 

[longboarder78]

Hi there and thanks for your replies.
Your comments about swimming do worry me. I used to swim competeitivly on a national level and swimming has always been something I turn to when other more high impact activities are not possible. Walking for any length of time is currently very uncomfortable for me, running -another favourite activity is completely out the question. I was hoping that following surgery if I am sore and uncomfortable that swimmimg would be something I could do to both exercise and releive pain/stress.

On another note, something that I am very curious and apprehensive about is how far a seton actually protrudes? I know they are soft as it were but my fear is that I will always be aware of this 'addition' to my rear end!

 

[Mark63]

Hi,

The comment about swimming is my personal take on things. Please seak advice from the professionals and see what they have to say on the matter. It must be difficult if you have allways been fit and very active. I'm sorry if you feel that you are being asked to give-up too much, but hopefully after treatment things will get back to some sort of normality.

The seton that I have in place at the moment is made of a braded soft surgical silk. It's quite short now, probably protrudes about 3/4" from the anus, with the two ends tied in a knot. Previous setons have been longer, probably 1 1/2" - 2" because the fistula tract extended further out onto the cheek of my backside. Once thing have settled down after the surgery you may not know it's there. You do need to take special care with cleaning-up after going to the bathroom. If the seton gets pulled it can be a bit uncomfortable, but you'll survive.

It would be useful for you to find out one way or the other if you actualy have Crohn's as that does have some impact on waht treatment options are available to you.

Mark

 

[Sailorluna]

Hi James,
It doesn't stick out far - docs don't always explain how it works well. I thought they were going to put a device in there when I first heard about it. My seton is roughly the size of heavy gauge fishing line and since it is a circle (basically) it does not stick out. They run it through the fistula and out the anus. There are several knots in it too. Maybe so they can grab the seton and pull it when they rotate it at follow up appointments. For me is really only exposed the distance from the fistula hole to my anus. Mine is pretty close, maybe an inch of line can be seen. It used to be a smaller amount but they have had to surgically drain it four times because it keeps backing up and pooling up even with the seton. The last time they went in and cut the fistula hole much larger and sutured it open so it would drain better. The fistula opening is now about the size of an almond.

I hope you heal quickly and are able to get back at your physical activity soon. You may want to pick up some calmoseptine lotion it is a wonderful thing for fistulas.

 

[IAmTheWalrus]

I replied to your PM.

 

[Sha0913]

I had one for about 2 years, it was the best thing for me, I had a fistula that was very uncomfortable and would swell and not drain or constantly drain and drain, after I got the seton and it drained well for about 2 months I barely even noticed it was there. I do agree that it is odd and strange to get used to when you go to the bathroom at first bc u can feel it there when you clean your self, and to make sure it stays completely clean is a worry.. But once it helped my fistula drain and then my fistula healed all the way, I was so glad I had it done. I have had it out for 2 years now and have not had a problem with the fistual again. Also I had no problems with sports while having it in, I am a runner, I coach soccer teams, and my daughter is an Ice skater and had no problem with spending hours on the ice with her. You should be fine, it will drain for a few weeks to months but after that you should be good to go. Shannon

 

[stretch]

Hi there everyone
I'm a new member here and would really apprecieate some advice regarding fistulas and Setons!
A bit of background info to begin with - I'm a 34 year old British guy, fit healthy and pretty outgoing.
Following a few months extreme discomfort I was recently diagnosed with an abcess in the 6 o'clock position on my anus, having visited both my GP (several times) and now also a colorectal surgeon I am scheduled for surgery to have the abcess laid open and drained. Currently I am not diagnosed with Crohns, although there has been talk that it may be a root cause of my problems (general digestive upsets/cramps....) and they want to perform a colonoscopy while I am in hospital for the fistula. I really do take my hat off to all you who live with this on a daily basis, I keep hoping that I will be cear from Cronhs, but at least if I am diagnosed I have found what seems to be an excellent support site here. Here's hopingn though...
Following my last appointment with my CR Surgeon, after some 'investigating' he believes that the abcess has become a fistula, and I am now also finding fecal matter in the discharge too so not good news really (sorry about being graphic but I guess we are all in a similar boat here - no shame!!).
So far the pain has been OK. Not great by any stretch but OK and I can deal with it. I also understand that the surgery is a necessary evil in trying to get this to heal so I am approaching it with an open mind in regards to healing and recovery - looking at the long term pictuer and all that!
What concerns me is that on my last visit to schedule the surgery the CR surgeron said he would more than likely want to put a seton in the fistula to aid draining as he thinks it's quite a 'high' one . this could be in there for a year or more depending on how it responds.
I know what these are following research on the web but I am concerned as to how much having one put in will impact on my lifestyle.
Normally I run, bike, swim, surf, do yoga, go to the gym and lead a very active lifestyle.
Does anyone have any experience in how a seton can affect your day to day lifestyle and in particular exercise?
I worry that I am going to be constantly aware of this thing hanging out my *** and that I won't be able to do the sports that I love. As someone who loves exercise and keeping fit the prospect is quite daunting. Will I still be able to go in the sea? Can you run with one in? I've also read a lot of variation in the size of setons, some are described as a thread while others seem to be a lot thicker, almost like a wire or cable tie, I'm assuming the thickness of the seton is going to affect how much you feel it too?
Any advice on these matters would be much apprecieated as the doctors are being predictably non-commital!
Are they any other guys out there who have gone through this?
Thanks for reading,
James

You'll be fine with your sports, I never had a problem cycling with my setons in.

Size of your seton will depend on size of fistula, I have had a rubber band type and normal thread both of which you won't feel after a couple days, they might pull a bit at first mind.

I reckon the sea will do it good, mine used to feel better after a holiday swimming in the sea. Hope this helps

 

[AlliRuns]

Hi.

The first few months of having a seton are the worse, especially if it's in a complicated fistula.

I have had mine (2) since February, and now am back to almost regular physical activity, running, weight lifting, yoga, etc. The only thing I haven't tried yet is cycling, but I just ordered a new road bike, so come hell or high water, I'm going to ride it. They are the surgical cord kind of seton, so I don't know how the riding is going to work out.

The setons now that the pain has gone, don't really interfere with my activity. My only beef is that on of them sits on an anal skin tag which when I run or walk can become very raw and bleed. My skin tags never bothered me before until the seton.

Good luck to you.

 

[beccaboom]

i have been diagnosed with perineal fistulating disease. I had an abcess diagnosed in june 2010. formed a fistula, I had 6 cutting setons and I am now on my 4th silk seton. it feels like an ongoing struggle that i'll never get out of. I have put on weight ( 2 stones) , and i have upped my excercise but the chrons tablets seem to be preventing me from loosing it.
i feel now like im on a never ending cycle.

 

[beccaboom]

Hi,

I would choose to avoid public pools. If it's your own pool and weeping is minimal, then I shouldn't think keeping the water properly dose should do the trick. If you have a hot tub I can imagine that it would be most soothing, a nice warm bath certainly is for me.

Mark

surgeon said to me that public pools would not be a good idea, that sea swimming would be a great help.

Also with my now 10th seton , he has told me the more excercise i do the more the seton moves through the fistula to close it. my seton "tail " is quite long , about 3 inches because I walk my dogs alot the shorter ones were chaffing and snapping the longer ones i can manage them better.

 

[Danu]

Hey Longboarder,

I went in on Monday with the CR surgeon for outpatient surgery for a abscess/possible fistula. I went in hoping that I just had a anal-abscess that needed further draining but my doctor warned me that since the abscess didn't heal on it's own after initial lance/drain and three weeks of antibiotics, it was likely that it was a fistula (plus I am majorly flaring UC).

I went under and woke up with my first seton placed. I also am a swimmer/yogi/runner/biker and one of my first groggy questions to the doctor once the anesthesia wore off was "I'm a swimmer, when can I start swimming again?" He said to give it a couple weeks to see how I was doing and that I could likely get back to it.

We'll see how it goes though. I had to go on prednisone three days ago for my UC, and I'm afraid using public lap pools might not be good for me right now (I'm also totally icked out by the whole situation down there, they had to make a pretty big incision, but the loop doesn't hang to much at all). So, I'm making a personal choice to avoid the pool until things fully heal up down there (if and when they do? I have so many questions for my doctor). I am however, going to do some yoga tomorrow, darnet.

For you however, the ocean is so healing...seems like it would be a good thing (unless there's some absurdly high bacteria count in the ocean for some reason, we got those in Santa Barbara, CA sometimes and surfers/swimmers were warned to stay out for awhile).

Not sure I have much advice to give, except that I sympathize with your situation. I guess it really depends on the person and their situation on how active they can be. It sounds like some people here have been through really tough times with fistulas, it's terrible. But keep a positive perspective and I wish you the best.

 

[7yrsandcounting]

Hi,

I am delighted to find this post and see that I am not the only one suffering with the stress of not being able to excercise. I have had various surgical procedures over the last 7/8yrs on what I was being told is a chronic anal abscess. My new consultant (the previous surgeon having kindly passed me to him, admitting fresh eyes were needed on the problem) has started a course of seton sutures now, and I had my second surgery 8 days ago. he changed the seton type to a rubber one, and the pain is easing now somewhat, and the weeping has calmed down.

The big news is that I asked about swimming and some light exercise, and he confirmed that I should get myself back to whatever I could, including swimming. I was very surprised as he previous consultant had instructed me to stay out of any swimming pools. As I have decided to give myself over totally to the new surgeons instructions (he has given me a significant lecture about reducing stress and change of lifestyle!), I can't wait to jump in the pool as soon as I am ready. I used to play both squash and tennis at a high level, and miss this outlet so much that it will be nice to have something to work the muscles! I will also be able to bring my kids swimming, which is something we have had to neglect.

I am not too worried about the weeping in the pool or picking up any other infection - I am told there is more bacteria in the average childs mouth or another adults spit than what is contained in the weapage (which seems strange!).

Here'e hoping it helps.

 

[napster]

I had a seton placed in early June (rectal-vaginal). The tail is short, about 1 inch, and looks like black thread with a couple knots in it. The seton itself looks like yellow electrical wire - my surgeon said these kind are more comfortable than the silk thread. She may have a point - I don't feel mine at all, unless I wipe incorrectly (pull it). Exercises such as squats, lunges, etc., don't hurt, but afterwards I end up with more drainage and blood. That may be because of the location of the outside hole and pulling, idk. Walking, running, doesn't seem to bother it in the least.

Outside of accidental pulls and/or tugs, I don't feel the seton. It continues to inconsistently drain, but that's manageable (I stick a makeup remover pad on it and just put a new one on everytime I use the john). You can keep things clean down there by always using either a bidet or a squirt bottle. I'm looking at 3-4 years with it in, but we'll see.

Good luck with yours!