# Getting a seton - can anyone explain?



## Crohn's_Patient

Hi everyone -

I'm new to this site & have done a lot of searches, but haven't found exact answers to my questions, so thought I'd post my own thread. =)

To make a long story short  - I have been diagnosed with Crohn's for about 11 years, was on double doses of Remicade, then Humira and am only on Prednisone & Cipro now. When I was initially diagnosed, I had ulcers in my colon, which have been healed for many years. My main problem now is rectal/anal pain, swelling and misery. I am in the process of switching doctors and am seeing some very good specialists. I have recently had an abdominal/pelvic MRE and met with a Colorectal Surgeon. He believes from the MRE results that I have a fistula, so he is going to do an exam under anesthesia this Wednesday to check things out. From the office exam, he could see where he believes the fistula is, and I also have skin tags & hemmorhoids. (aren't I lucky!!) 

Anyway, I am reeeeeaaallly nervous about the exam and am scared of what I am going to wake up to. He mentioned possibly putting in a non-cutting seton, if it is indeed a fistula. I've tried to find info on these & can only see that it's some type of string/rubber band thing that keeps the fistula open to drain. ??  He told me I can go to work the next day and I'll be fine. Has someone had one placed & can you tell me what to expect? How much pain is involved and will I be able to see/feel the seton coming out of me? 

I already have experienced leakage or something when things have been really bad & painful. I have to wear a pad or keep toilet paper there pretty much all the time already - so will having a seton be worse or help this problem? Also - I have a huge family vacation planned next month that has been planned for over a year. I can't seem to go a week or two right now without needing antibiotics or more prednisone (which I HATE!!). How long does it take to 'recover' from the placement of a seton? I'm so worried about how I'll be on my vacation - though I'm pretty miserable now. 

Anyway, sorry if I'm rambling. I'm just so nervous & hoping someone out there can help me better understand what to expect. Thank you for your time!


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## PaulsPain

Hi, I have had a draining seton since Sept 2010.  My fistula was discovered during a surgery to drain an abscess.  For me, the recovery from this surgery would have been a piece of cake but I had uncontrolled bleeding from the abscess incision site the next day that sent me to the ER which was not a pleasant experience.  I have also just had exam under anesthesia on another occasion.  As long as anesthesia doesn’t give you a hard time then recovery should be fairly easy. Even if they just place the seton.  If they are going remove the skin tag and hemorrhoids then recovery could be fairly painful and longer.  Do you know if they plan to address those?

Now for the seton.  Mine looks like plastic zip tie that enters my abscess incision site and comes out my rear.  The ends are tied together in several places with some kind of string material.  At first it was a little irritating to get used to.  I keep a piece of cotton tucked in to keep the thing from jabbing me.  My CRS recommended this to me.  The fistula aches once in awhile still.  When this occurs I give the draining seton a tug to make sure things can continue to drain.  Again this was another pointer from my CRS.  I still get a lot of drainage so I still wear a pad and change the cotton packing several times a day.  I just was officially diagnosed and started Azathioprine in December.  I have been battling with mostly peri-anal disease.

Good luck.  Maybe your pain is related to a fistula and having a drain placed may provide a lot of relief.  I know for me, I am happy to have the drain in place currently verse going through the risk of having another abscess for weeks again.


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## Mark63

Hi and welcome to the forum.

I've lived with abscesses, fistulas and setons for the last six years. Unfortunately none of the treatments that I've tried so far. The seton/fistula in its self need not be painful. The pain tends to come from having ongoing infections in the area. The draining seton that I currently have in place is a small, unobtrusive, soft surgical stitch. I keep a couple of folded gauze squares in my underwear to soak-up any discharge. It's a good idea to keep the area as clean and dry as possible to avoid any skin problems that may otherwise complicate matters.

The following information sheet from the Crohn's and Colitis UK web site may be of interest.

http://www.nacc.org.uk/downloads/factsheets/Fistula.pdf

If I can be of any more help please let me know.

Mark


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## sawdust

Welcome to the forum.

After a course of cipro/flagyl for a "half"-a-baseball-sized abscess at the beginning of the year, I had a follow-up CT to be sure that it was cleared up, only it hadn’t.  Sure enough, the abscess reappeared days after I was off the antibiotics.

Similar to what it sounds like your colorectal surgeon wants to do, I went in for "exploratory" surgery with a few options as to what I might wake up to, from simply draining the abscess, having a seton placed, and so on. My surgeon did a good job explaining what the possibilities were, what he’d do in each case, and what that would mean for me post-op. Don’t be afraid to ask and understand all your surgeon can or will do. In my case, he theorized that a fistula was feeding the abscess beforehand, and I went in all but expecting a seton. My exam was two months ago, almost exactly.

Every nurse that came to talk to me at the hospital took plenty of time to explain to me the 0-10 pain scale the used there, how zero was no pain at all, and 10 was worse pain than I could have imagined. This scale was told to me about four times beforehand, and I started to worry and was a little concerned as my eyes closed under the mask. But when I woke up in recovery, they loaded me up with something in my IV and asked me to rank my pain. I believe my answer was a loopy "I don’t know… zero? Half? Is it over?" :rof:

I’ll tell you about my seton. They drained the abscess, and ran the seton through the void left by the abscess, through the fistula, into my rectum, and then back out my bum. The two ends of the seton, one coming through my butt cheek and the other coming through my bum, are about four inches long and fastened together with some kind of “soft” staples or something I can’t see very well. The seton itself is about the size of the telephone cord you’d use to connect a land-line to the wall jack, but does have a bit of “stretch” to it like a rubber band.

The day I came home from the procedure, I would say that I was slow and intentional. It did not hurt, but I was unsure if that was from the medication or not, so I certainly took it easy. I did not work the next day either (planned) and then took it easy at work for a few days. They gave me the post-op directions, which included Metamucil three times a day. Not exactly what a Crohn’s patient on antibiotics needs!  I got that cleared up right away with my doctor, but it did keep me on my toes. 

In the first week or two, I would say that I was more sore than in pain. I was careful and ginger, as I wasn’t sure what my limits were. Things took a little longer than usual, and I would say that i just took it easier than normal. 

I can’t feel the seton, unless I do something stupid, like pull on it accidentally. That will wake you up! But, even though it’s not convenient, I’d recommend sticking closely to the bath schedule your surgeon gives you. I made arrangements at work to go home at lunch and take a bath at first, which was the best part of my day. It did require eating my lunch in the car and sitting in the car, but it was worth it!

Three weeks out, I did quite a bit of heavy yard work in small stints. Five weeks out, I played drumset again, which, while sort of uncomfortable, tells you about where I was about a month out. Drainage, for me, isn’t anything near what it was at first, but I still wear something for the drainage all the time.


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## CrohnsNYC

Hi! I have also been dealing with Fistulas for some time now, and they are really pesky things. I have had non-cutting seton placement before and it is not too bad. You will be a little uncomforable for a couple of days, but you should be fine to go back to work. I try and do anything surgical on Friday's so I have the weekend to recover. The seton is a funny thing because it is counter-intuative. They want it to close, yet they are putting something in to keep it open. It will drain, so it is smart to wear a pad or gauze. I had a lot of drainage the first week and then it slowly got less and less. My last seton did not work (neither have Remicade or Humira) and I am having a plug put in Friday.

Don't cancel your vacation, unless you absolutely have to. Go stocked with all your medication, have all your dr. numbers with you, plan in advance and know where the nearest and best hospital is (just in case), but most importantly, have a really good time. De-stressing can help with symptoms. 

Hope you feel better soon 

Beth


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## Catalinki

I had this same kind of surgery in January this year and I was really apprehensive about it too. They ended up putting two setons in, which have been fine so far (I have more problems now, but not especially related to the setons!). What I was shocked by was the recovery time. Surgeons said two days recovery, the IBD doctors said 1 to two weeks. I tentatively took one week of work expecting to be back no problems. In reality, the first time I left the house to go further than my local GP was a full 9 days after the surgery (it was my birthday too, big WAH). What I'd ended up with was what felt like two huge wounds on either side of my bum and I was totally scared of going to the toilet. Literally didn't really know how I was going to do it. I spent the week having some pretty agonising moments making sure my bowels were regular. My absolute best advice in the recovery to have have heaps of salty sitz baths and always have one ready to go when you've been to the toilet. It can burn and for me warm water was the only thing that soothed it.  Later on I was amazed at how quickly the two wounds healed and I began a period of feeling better than I had in two whole years!  

I can also relate to Crohn'sNYC in that destressing is also hugely helpful - I was so emotional during this time and I'm sure that made it worse. The setons are def. a good move and I hope everything goes smoothly for you!

PS. I have another one of these surgeries coming up this Tuesday (another abscess ) and I am feeling much more positive about it because I know the setons work. I also have a holiday with my family booked for just three weeks after and am determined to make it! Best thing to look forward to to help you through I reckon... take care x


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## Persian

I have had a seton for almost two years. i have fistulas in the rectum and the seton pretty much keeps the fistula from closing and collecting puss and then turn into an abscess all over again. you do not really feel it in your rectum but for me its a pain to clean up after a bowel movement.

it was an outpatient surgery and I was up and about the next day with no problems


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## frankenbutt

Hi, I am one day out of having a seton placed for a fistula. I am female and totally in shock at what looks like the grand canyon on my behind! I don't think I fully understood what has happened. I went in for a fistulotomy but the Dr got halfway through and decided not to risk cutting through my rectum. I don't really know how to manage this. I am female, how in the world do you keep this canyon clean when every time you pee it gets wet? And I am terrified to have a BM! I am in shock.


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## Kiwi

I'm also a female and I've had two setons in place - one quite shallow which was thankfully removed about 1 year after it was put in and the wound healed after that, and another deeper one that I have had in place for the last 3 years. I've had no issues with infections from it, though it can get painful after vigorous exercise. Usually when this happens I have a warm bath which tends to soothe it. As far as cleanliness goes, pee is actually quite antibacterial so no worries about that! For the first month or so I was pedantic about cleanliness so after any BM I would shower/bathe, especially as it was quite painful to wipe down there. I am able to hike, surf, run, and travel internationally with this problem, I just have to be careful about cleanliness (like others have mentioned I wear a pad and place some cloth to collect the drainage). Hoping to have it removed and a fistula plug put in place one day soon!


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## frankenbutt

Why did it take a year?


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## Sha0913

I had 2 setons place in the rectum area, I had them in for about 6 months they drained the fissure area and then had them taken out and have sinced healed and have not had any problems since.  Fingers crossed.


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## frankenbutt

That is great! So they just took the setons out and that was it? They did not do anything more to the opening from the seton?


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## Sha0913

Nope and actually when my setons had stopped draining, I had an appt with my GI and she said lets take them out, she just snipped them right there in the office and pulled them out.  That was That!  I have never had any draining or problems from that site, just a scar from where the skin healed back together.  GI says it is not ever a permanent fix bc the fissure could open back up someday, but its been about 2 years and I have had no problems.


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## Sha0913

I was just reading back and saw that you were worried about keeping it clean.  I had one of those yellow sitz bath things that sit on the toilet to clean ur bum that you get in the hospital, well I never used the little sitz bath part.  After a bm, I just put it on the toilet and filled it with hot water and soaked for a few and then dried with a towel, it kept me extremely clean.  If i was out I kept a little squirt bottle and filled it with hot water from the tap b4 i went to the bathroom and then after, I would shot the water up and clean it with papertowels.  Hope this helps a bit


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## Kiwi

It took a year because a) they needed to be sure that when the seton was removed it wouldn't heal over and another absess form, and b) on the public healthcare system in NZ you can have long waits for procedures that are elective, hence the reason my latest seton has been in for 3 years (although it is very deep so I might need the seton in permanently).


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## s.a.m.

I am having a seton placed next month. To anyone who has already had this procedure, did you have an abscess/fistula at the time is was placed or were things calmed down 'down there'?


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## loosewheels

Hi s.a.m.
I had one put in a couple of years ago, I went into hospital with due to the pain I was having each time I went to the loo. It was found I had an abscess, so next morning it was down to theatre for a seton, I had a plastic on to begin with, but it rubbed and cause more problems so it was changed for a silk type of one, no rubbing or pain now. Hope it goes well for you.


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## s.a.m.

Thanks, everything is calmed down so I am nervous to undergo the seton procedure if it's not totally necessary, tough decision, not sure what to do


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## mish2575

Persian said:


> I have had a seton for almost two years. i have fistulas in the rectum and the seton pretty much keeps the fistula from closing and collecting puss and then turn into an abscess all over again. you do not really feel it in your rectum but for me its a pain to clean up after a bowel movement.
> 
> it was an outpatient surgery and I was up and about the next day with no problems


Do you still have it? Did it work?


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