Seton drain, normal?

Rivers

Rivers

Joined
Sep 30, 2011
Messages
56
HI Folks,

I'm new to this board, wanted to introduce myself.
I'm a 30 something, female.

I dont know for sure if I have Crohn's yet (tested + thru a blood test thru Prometheus lab, but the colonoscopies so far have looked ok. I do have a chronic anal fissure that tears open and bleeds now and then but is under control with special cream.

My troubles started at random this summer when I got a peri-rectal abscess. I had no idea it was even an abscess for 2 weeks until I woke up one morning with a hard lump and increased pain. I thought it was a pulled muscle (big mistake)

I had the abscess drained, and it did not heal after 2 months.
I now have a fistula, and a seton drain was placed one week ago.

I am still sore from the seton placement, oozing lots of yellow pus, some blood and brown gunk. I still need the percocet daily for pain. It hurts the most after a bowel movement of course. It doesnt help that I have IBS and go 4-5 times every morning. (sorry if TMI)

So Im just putting some gauze in there and taking warm baths with epsom salts. Im kinda down though, feel so gross all the time.

I'm supposed to go on a trip in 3 days and a 6 hour drive, I will have a hot shower but no bath. I sit on a heating pad also for pain relief. I really want to go.

I hope the pain will eventually lessen and this seton will be no big deal. Anyone familiar with the healing from seton drain placement?
I just want to make sure I am progressing normally.

My CRS says the seton is to stay for 2 months to toughen up the tract and drain the abscess, and then he is going to do the LIFT technique to try to close the fistula off.


Thanks for any encouragement you may have, im a bit bummed out over all this. It would be nice to make a friend or 2 who are going thru the same thing. :)
 
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Hi Rivers, :welcome:. Love your avatar picture! I am sorry you are feeling down, and yes I have heard of setons placed for drainage. I have not had an abscess or fistula in that area, but please speak freely, some one here will know your pain. We know about how you are feeling, but until you get a diagnosis,which is very hard for some of us, you will need treatment. Many people here who have fistulas have been on Remicade and has helped them alot. Pain killers bind you a bit , so passing could make it harder to go and cause pain. You are not alone here, everyone can help you with their experiences in this field. Many are not diagnosed either, but still have the symptoms.

Glad you have joined us, let us know how you are doing, we are a great community!! Hugs!
 
Thank you Pen,

Yes I would definitely like to hear from others with a fistula. :thumleft:
 
Hi Rivers, Welcome.

I have had a draining seton in for a year now. I had a peri-anal abscess and during the surgery to drain it he found a fistula through 1/2 of my sphincter muscle. I also have suffered with chronic fissures. I was finally diagnosed with Crohn's last Nov after suffering for 5 years with chronic fissures.

Hot baths helped me a lot when things were bad. I think the thing that bothered me the most at first was the seton jabbing into the surrounding tissue - especially the incision from the abscess. My seton looks like a zip tie body with the ends tied together with some sort of plastic string.

I use half of cotton ball tucked to catch drainage and also help with the jabbing. I then change this several times a day to keep the area clean. I really hated having the drainage running out onto a pad since it would irritate the whole area.

The pain should go down once things are draining well - at least it did for me. After awhile, I had to start yanking on the seton to get things draining more and this relieves my pain. My CRS told me I should yank on it weekly when I went in one time thinking I had another abscess in the same area..... I only do it when needed since it doesn't exactly feel great.

I am now taking Remicade and Azathioprine with the hope to healing the fistula and fissure that keeps lingering. The plan is to do one more dose and then go to the CRS to see if we can pull the seton. Probably won't know how to act after having it for so long. I think Remicade is helping but very slowly......

Good luck.
 
Hi Rivers, and welcome :)

I got my seton in... may?

Setons are confusing, because the procedure can leave your bottom in a variety of shapes. I had some skin removed when my seton was put in, and because of my crohn's, it required ridiculously expensive medicine to actually close the wound. That was the worst part for me. My seton drained blood usually, with no swelling or brown things. But, that's just me. Do you have a sitz bath? It's like a butt-bath, that fits on your toilet. Also, I'd recommend an invalid ring. You can usually get both at your local pharmacist.

Good luck, and let us know how the trip goes/if you go :)
 
Thank you kind people. I appreciate it. Yeah my wound was opened up again for the seton placement so its healing over now. Still sore to walk/sit do much of anything. Hopefully it will calm down in time. Going to go on my trip with optimistic thoughts and lots of gauze. Will get a sitz bath and the ring too, thanks.

Anyone else do the LIFT procedure or advancement flap or fistula plug?
 
Hi Rivers, I had a seton put in for a single peri anal fistula over 6 years ago and it fell out last November....Then my problems started again...I ended up getting 3 fistulas and 2 fissures...chronic pain and infections.
If you have Crohn's it is a waste of time from what my surgeon tells me of getting the plug or lift...he will only do setons.
 
Thanks, I guess it is all the drainage that has me anxious, and I am not on antibiotics. My CRS said I would not need them. Im not used to having yellow pus draining out 24/7 and just wish it would stop already. Gonna put on a brave face and try to enjoy my trip even though Im sore and oozy. Guess it will be this way for awhile.:eek:
 
Hi Rivers, I just got a seton in yesterday and am still in shock. I got a look at it today and there is a three inch long , one inch deep CANYON in my butt! I could not get over that! And then there is the rubber band thing. As a female, I just don't know what to do with this or how to maintain it. I went up to a hospital several hours away from where I live and then came home. I talked to my surgeon for about 90 seconds before he went into his next surgery and I was shuffled out the door. I was expecting a fistulotomy, but ended up with a seton. Should I be putting gauze in the canyon? No one told me anything except to take 4 sitz baths a day for three months. Nothing about the daily maintenance. Geez, as a female, I pee on it everytime I pee. Sorry if this is TMI.
 
Hi there,

I know! When I first looked I was shocked too. I am 10 days post seton surgery now and the canyon is almost all healed up but it still hurts. I pulled on it just a little bit today (on purpose) oops and now its killing me.

I would put clean gauze in the canyon and indefinitely, or a panty liner. It should be draining fluid and pus for awhile. The baths are very good yes, I dont take them daily, but as many as I can. I sit on a heating pad.

Want to be friends? I will PM you my email.
 
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Update. 2 weeks out from seton placement now and in much less pain. It is still painful and annoying but not as bad. My trip was a success :)

Seton has moved to the left and the knots are now inside the fistula (looks like a fishermans knot/stitch) wondering if I should move/pull the knot back out. Hmm...
 
I spoke with my surgeons office today for the first time. They said if they knot moves and bothers you, feel free to move it where it is comfortable.
 
Hi Rivers! I am new as well...and just got my first anal abscess 2 months ago which turned into a fisula...I too had surgery and a seton placed on Sept. 22nd...my ass still hurts...one day I ooze green/yellow pus and the next day blood...I have been wearing a granny pad forever...I am actually fine if I have no bowel movement- which only happened the day of surgery because I didn't really eat anything...for some reason after I have a bowel movement- and I go quite a bit- It feels like it swells up down there and I get pain for hours and have to take a percocet- but then it drains and the pain slowly goes away- then repeats. Saw my surgeon on Tuesday- he said it looks good...

You sound a lot like me...I test positive via blood work- the ASCA IgG and IgA- but my doc said it is crohns...but still have my colonoscopy Thursday...and the doc wants me to start remicade.

I hate this seton...I feel a constant fullness in my ass...do you?

Best of luck to you!
 
frankenbutt said:
Hi Rivers, I just got a seton in yesterday and am still in shock. I got a look at it today and there is a three inch long , one inch deep CANYON in my butt! I could not get over that! And then there is the rubber band thing. As a female, I just don't know what to do with this or how to maintain it. I went up to a hospital several hours away from where I live and then came home. I talked to my surgeon for about 90 seconds before he went into his next surgery and I was shuffled out the door. I was expecting a fistulotomy, but ended up with a seton. Should I be putting gauze in the canyon? No one told me anything except to take 4 sitz baths a day for three months. Nothing about the daily maintenance. Geez, as a female, I pee on it everytime I pee. Sorry if this is TMI.
Click to expand...

Frankenbutt: They did the same thing to me...didn't even see my surgeon after and I didn't know what to do, but soak my butt...I was supposed to get the fistulotomy too- but a seton...but what my surgeon had told me previously if they think you have crohns they don't like to cut on you at all because you don't heal well...also I wouldn't put gauze up there- it will block it...I just let it freely fall into my granny pad...gross- but my doc say gauze could close up the hole...you want it to drain...also lean forward when you pee it helps- or pee in a cup- I did:wink:
 
Thank you!

I hope you are doing ok Frankenbutt :)

Yeah its been 3 weeks for me and its still sore and painful. I dont know how people can keep these in for years, thats for sure. Im still draining yellow, grey, pink gunk every day too, but i think that is how it is supposed to be. Im always more sore after a BM too, I always wash with the handheld shower head after I go to keep things clean. Do you guys know what the next step after your seton is? I kind of want to go for the plug because it seems so simple, then again, the success rate on that option was the lowest my CR surgeon gave me.

Nice to know Im not alone in this, thats for sure. I want to go skiing this winter but right now the thought of falling on my @$$ scares me!!:eek:

I agree about the gauze Frankenbutt, just gauze the first few days and then take it out and let it drain. Feel better everyone!
 
Rivers: I wish I knew too...my surgeon said something about the stitch falling out on its own...he said if it doesn't then I go in on the 25th for him to cut it out...well I have tugged on it, which doesn't fell good and that things isn't going anywhere anytime soon! But maybe the remicade will close it up?? I guess we will see...hope everyone starts feeling better soon...I say take as many sitz baths as you can...I think it has helped me...
 
Hey Rivers, Mine if feeling better, seems to be getting shorter, though still appears as deep. I am having a bout of constipation for I have no idea what reason. Have not gone in over 3 days! So I know it will be very painful when it happens. But the "inactivity' have been kinda nice as there has been no stretching or pulling or tension on the seton so no pain! Draining continues, though no more pink. (maybe because no BM?)

Welcome Julebuggie34! I am not on any remicade or any meds. Rivers, are you?
 
Nope Im not on any meds. I still cant get my seton to budge either. The knot is up in the fistula. I would take daily fiber like Metamucil to keep things moving/regular if you are constipated or some magnesium citrate.
 
I just did take some phillips milk of magnesia. You would not believe what I did today. I rode my horse! I padded my underwear and padded her saddle and went really slow at a walk. Only lasted about 20 minutes. But it was such a beautiful day and like I said, because I have not been going to the bathroom, there has been little pain so I decided to go for it. I looked at it tonight and the area around it is bruised. probably not good, but I really needed to do something to get my mind out of the funk I have been in.
 
Thats great! We have to keep living! Im going hiking tomorrow and on another overnight trip. I just yanked and yanked at my seton and it wont budge. I drained some puss out of the seton exit area but then it just started bleeding so I left it alone. Im tired of looking at it and in about 20 attempts I cannot get the thing to budge. I see my surgeon for follow up in 2 weeks, will deal with it then. Keep enjoying life!:ghug:
 
You are trying to move the knot, right? So it won't "slide?" Wonder if some scar tissue has attached to it inside. Like pierced ears sometimes do.
 
I have succeeded! I just moved it! I got mad/determined and followed the advice of another poster and sat in a hot bath. I used gentle friction and finally pulled the knot out of the fistula.It is very hard to reach. I cannot grasp it, but i slid my finger along the seton until it slowly moved out and over. The knot is now jabbing me in the butt, not the fistula. It bled a bit and hurt but not agony. The hot bath friction was key. Thank goodness for this forum :)
 
I have the SAME thing

Rivers,

I am not sure I can be of any help but I can sympathize. I had a peri-rectal abcess drained where the surgeon (general) saw the fistula and "repaired" it.

I just had a seton placed last week - colorectal surgeon released me back to work (I have a VERY physically demanding job) - but this thing intermittently hurts, drains, etc. I can make it most of the day - but by the evening I need hydracodone.

My surgeon also recommended the bio lift procedure - with a 30-40% incontinence rate - aren't your worried about that? I am scared to death. Thinking about leaving this thing in until I have had time to think it over. It also means that having children will likely be out :(.

I guess my canyon hasn't healed yet - can see the band sort of - glad I read what you guys were talking about - had no idea that the knot could go up in it.

Are you having your seton "tightened"?
 
I have had mine 3 months now and the canyon is gone but something else weird has happened. Where the initial incision site for the first abcess, there is something on top of that that looks like a round volcano that drains blood. it does not seem to be connected to the seton area and is on top of the closed canyon. Seriously, it looks like a volcano with a top. What the heck is this?
 
This was an interesting read, and I have a questions. I just had surgery for my peri-anal abscess a week ago and I'm now at home where a nui rse comes and packs it every day (well twice a day because the stupid thing won't stay) but its a 4cm long, 2 inch deep hole.
I was told by many people that getting a seton for a fistula is pretty much optional and that lots of people go without. Why did you guys get a seton put in? Is it pain? I've heard a lot of stories where people have went through the setons many times and have had no success. I have to talk to my doctor soon about what were going to do next, and I'm really not sure what to choose.
 
Hmm, thanks for that. See for me, I think I've just had my abscess for so long that the leaking doesnt bother me. My surgeon too told me that you don't necessarily have to operate on fistulas and do the seton unless they give you pain. I think this may mean I have a fistula coming though, because the surgeon said when she first made the poke on my abscess, blood started coming out of my rectum, meaning there must be a tunnel.

I've heard too many bad things about cutting setons, No thank you! lol
I'm glad you guys are managing with your setons though. Like I said, I just got my abscess cut, so I guess soon I'll see if I'm joining your wagon! lol
 
Thanks all :)

Im having the LIFT procedure on 11/28 to hopefully repair the fistula for good. Im not worried about incontinence, my surgeon said the risk is minimal.

Frankenbutt- I have the little volcano too, and it is where the seton comes out of the fistula. MY surgeon said it looked great and normal. Is that where yours is?


KWalker- the seton was put in for 2 reasons. #1 to prevent another abscess from forming, and #2 to toughen up the fistula tract with scar tissue so the surgeon can do my LIFT repair and the sutures will hold.


Hoping the operation will go well. Planning on a 2-3 week recovery and then hopefully a trip to the tropics soon after. HOPEFULLY.

Happy Holidays friends, I am very grateful for all of you.
 
Hi there Rivers, I'm fully aware how old this thread is but have been scouring the web since I had a seton placed a week ago and your experience is the only one I've stumbled across that sounds like me. I was wondering if we could chat and share, figure it might help me. Little background; I'm 30, female, do not have Crohn's, had a perianal abscess 6 years ago which was drained and then packed for weeks to heal from the inside out, this was a success. This time I had a perianal abscess in a different location, it burst on its own, wasn't properly draining so was booked in to have it surgically drained. Fistula discovered when they investigated under anaesthesia. Woke from op with seton and minimal/no info on how to look after it. Have been draining pus/blood for a week now. Use pad tucked between cheeks to catch drainage. Pain after BM can last for hours as a dull ache/burn in my butt cheek. Sometimes feel okay, other times cannot stand straight or walk properly. I don't know what the next step is for me and my seton yet as I see the specialist in a few weeks' time. I just want to feel normal again. Have been signed off work for a few weeks now and spend a lot of time laying down to avoid pressure on butt. My lack of activity is making me a bit week, I felt lightheaded in the shower yesterday and had to jump out and sit down. I'm not managing all that well emotionally either. I can't see a light at the end of the tunnel. Any and all encouragement and suggestions are appreciated.
 
I am going through something similar justwannafeelnornal, and can fully empathise.

I don't have Crohns but have a seton drain in for coming into 3 months. The beginning of this year I had emergency surgery to drain a perianal abscess and almost a year on it feels like I'm only at the beginning of the recovery process after waiting months for surgery.

I did feel exactly as you have written just after both surgeries and had the same dismal feeling that I couldn't see any improvement happening fast. I did start to feel better and take less pain medication. Slowly but surely getting more energy back, closer to my normal routines.

I would say look at your diet make sure you are good to yourself. Not just ultra healthy but also having nice things to eat and drink and keeping things in moderation. I am taking probiotics and vitamins and trying to do gentle exercise. Being kind to yourself and talking to people when things start getting you down. We are all human after all!
Hope you start feeling better soon x




justwannafeelnormal said:
Hi there Rivers, I'm fully aware how old this thread is but have been scouring the web since I had a seton placed a week ago and your experience is the only one I've stumbled across that sounds like me. I was wondering if we could chat and share, figure it might help me. Little background; I'm 30, female, do not have Crohn's, had a perianal abscess 6 years ago which was drained and then packed for weeks to heal from the inside out, this was a success. This time I had a perianal abscess in a different location, it burst on its own, wasn't properly draining so was booked in to have it surgically drained. Fistula discovered when they investigated under anaesthesia. Woke from op with seton and minimal/no info on how to look after it. Have been draining pus/blood for a week now. Use pad tucked between cheeks to catch drainage. Pain after BM can last for hours as a dull ache/burn in my butt cheek. Sometimes feel okay, other times cannot stand straight or walk properly. I don't know what the next step is for me and my seton yet as I see the specialist in a few weeks' time. I just want to feel normal again. Have been signed off work for a few weeks now and spend a lot of time laying down to avoid pressure on butt. My lack of activity is making me a bit week, I felt lightheaded in the shower yesterday and had to jump out and sit down. I'm not managing all that well emotionally either. I can't see a light at the end of the tunnel. Any and all encouragement and suggestions are appreciated.
Click to expand...
 
Nil desperandum said:
I am going through something similar justwannafeelnornal, and can fully empathise.

I don't have Crohns but have a seton drain in for coming into 3 months. The beginning of this year I had emergency surgery to drain a perianal abscess and almost a year on it feels like I'm only at the beginning of the recovery process after waiting months for surgery.

I did feel exactly as you have written just after both surgeries and had the same dismal feeling that I couldn't see any improvement happening fast. I did start to feel better and take less pain medication. Slowly but surely getting more energy back, closer to my normal routines.

I would say look at your diet make sure you are good to yourself. Not just ultra healthy but also having nice things to eat and drink and keeping things in moderation. I am taking probiotics and vitamins and trying to do gentle exercise. Being kind to yourself and talking to people when things start getting you down. We are all human after all!
Hope you start feeling better soon x
Click to expand...

Thank you so much for your reply. Today has actually been a really good day for me. Still draining. Little to no blood now, just the gunk. Not sure what I've done differently for today to be half decent, but am feeling more positive and your response has put a smile on my face. I feel for you, having had to wait for your surgery. Everything was pretty quick for me, but I can only imagine how all the waiting felt. I am trying to eat much more healthily and have been taking probiotics and vitamins also. I'm completely off the pain med now, I want to be able to feel if it gets worse. I feel better for not taking them. How are you feeling now? Thanks for your advice and concern x
 
I had a seton placed October 14th. Doc told me my fistual has no big vains and should heal up. Mine bothered me for a couple of days but is fine now. I use pads usually for thr drainage. I had an issue with the sharp ends poking my hemroid (tmi). The doc was able to cut the excess off and it's much better. Have had little bleeding but more puss. Dislike having to poop because it's hard to keep the area clean. I start humira on wednesday. I go back to my surgeon in january to hopefully have this dam thing removed.
 
Is anyone out there still on these forums? I have a new seton for my first time and I am in the same boat as many. I was sent home with no information and little to no understanding of how it works or what to expect. Further, I don’t know what to expect in my future.
When I asked my doctor some questions she said it was shaped like a nose ring. And then acted busy and annoyed with a smile and moved me along. I guess doctors are busy people. Maybe it’s also true that the seton could stay in for various amounts of time so they really don’t have an answer and so therefore do not want to make any promises.

All of those woes being expressed, can anyone tell me about their exercise and activity experience? Specifically, I was a daily cyclist (bicycle) and it’s sad for me to even look at my bike now.
I’ve heard of some folks using extra padded bike shorts, but would this really work?
I’m recommended to intake 40 grams of fiber a day but I can barely even eat that much food even with every meal having 10 grams of fiber. Mung beans and adzuki beans have helped. I also left my job due to it irritating the area (being a cook is a hot and strenuous job that keeps you sweaty and inflamed all day even without a condition).
So without my active job and my cycling, I feel like the inactivity and eating is making me unhealthily fat and depressed. I try to walk and use weights but it’s not the same as a long bike ride.
I’m 4 weeks off work and 2 weeks post seton implant.
Does anyone out there know how to be able to cycle again?
Or any advice for jobs I can find?
I’m definitely depressed.
 

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