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Living with a seton


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#1 longboarder

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Posted 21 May 2012 - 11:18 AM

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Hi there
I'm a new member here, and a comparativly new member of the world of IBD too.
A bit of background info to begin with - I'm a 34 year old British guy, fit healthy and pretty outgoing.
Following a 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. The CR Surgeon however, after some 'investigating' 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.
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 it's quite a 'high' one or so he thinks. 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 ass 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?
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


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#2 hope4

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Posted 21 May 2012 - 11:39 AM

Wish I could help you in terms of all the athletics you can do, but I was not that athletic to begin with when I got mine. All I can say is that I wanted my fistula with seton to heal so I did not over exert myself. I stopped bike riding (but I probably should have kept doing it) because I thought maybe it would cause another abscess. I had too many fears as I began looking at photos of others who had multiple abscesses and fistulas. It scared me terrible. I just did the everyday normal things a mother and wife do. House cleaning, cooking, errands, etc. It can be painful at first with the seton but the abscess hurt 10x more. Then after a while the fistula no longer hurt and the seton would bother me a bit on the outside of the opening. And of course going to the bathroom, and using wipes, and epsom sitz baths and all that is time consuming but must be done. I just didn't want to cause any more harm to it so I left it alone. Didn't even sit on my tush (sat side ways) for a while either.

But you may find others out there who are like you, very athletic and still doing what they normally do. See if their healing is ongoing or if they are still suffering. That would be a big clue to me.

Not sure what kind of seton you will be getting. There are rubber ones, and satin ones. Could be more. I got the satin string one, and it is very thin. I am glad I got that one because after almost 2 years it fell out recently on it's own, very slowly I suppose because my fistula healed up nicely (with lots of faith and hope in God to heal it).

I also ate the SCDiet and that kept my Crohns in remission while the fistula healed.

Hope others will have more answers for you. Good luck.

Hope4 (and it came true)

#3 friendly

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Posted 22 May 2012 - 02:15 PM

Hiya James, i;m from the UK too!! I'm a mum of two little ones and was told back in Oct/Nove last year that i had a Fistual. 1st surgery was in Nov which layed open the upper part of the track and then a Silk Seton was put in place. Since then i have had two more operations which where a bit of a waste of time as my consultant just replaced Seton and cleaned out as he wasn't happy about laying open the last part of the track as it is to high and effects the inner sphicher ( sorry for the spelling) muscle which if cut would cause massive problems for me. With regards to the Seton, at first i hated it, bothered me big time and the whole thought about having something hanging out of my bum well just freaked me out. However the thought was actually worst than the real thing, every now and again it irritates but generally it is not painful and doesn't hurt when going to the loo etc. I have just started to take Zumba classes, haven't been swimming as in effect you do have an open wound and could risk the chance of getting an infection. defo wouldn't go swimming in a holiday pool where there is millions of bacteria's and not sure the sea would be much better. Have used an excerise bike and it was fine. i;m not a massive fittness person, so you need to take to slowly listen to your bum and stop if it feels uncomfortable. Keeping yourself ultra clean is a must, drinking fibre gel or somthing similar helps. The other big thing is sex, i have been terrifed and my hubby has been so good and understanding , but i finnally got up the courage and we did the deed and it was ok. So life isn;t too bad, i have an appointment next week to talk about whats next, i think i might just keep the seton in for a long while if there is a chance that it will move down and heal a bit more ( hope4 on here kinda gave me a little bit of hope hearing her's fell out). I really dont fancy more invasive operations, all sound pretty awful and grim with not many sucess stories. Hope i have helped.

#4 Virginia63

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Posted 11 October 2012 - 12:05 AM

Hi James,
hope things are progressing along nicely for you> I am a new member also and am just thrilled at this website..so good to hear other peoples experience - both good and bad.
I think the swimming in the sea would be good for your skin after all its just like a sitz bath. Once you get down the track a bit more and the fistula heals more you could probably go swimming - but I would wait for a while - you dont want to encourage any bacteria. I have had my seton in for 2 years and 3 months so far -waiting for it to break but have been told recently by the surgeon it wont ever heal completely - and probably would have to have another one put in its place. ( I had the silicone plug put in while I was living in the USA but it failed - only has a 40-50% success rate) Though its annoying part of our everyday life it sure beats having the pain of abscesses re occuring... You really just need to take things slowly with your exercise program - your body will let you know if its too much. I started putting very cotton compacted makeup remover pads around the seton to give a little more protection - and also as I have leakages at times its a bit of a back up :) As you have experienced with the dr being non comital we do experience slightly different things so you will just have to perserve a bit with your own limitations.
Best of luck
Virginia





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