How long do you live with a darn seton?

Hey everyone. So I've had my draining seton in for a perianal fistula for six months now. So it's a little uncomfortable sometimes and annoying...but really not that bad. It hasn't interrupted my lifestyle really...I can still be active, etc.

That said, the knot slipped into the fistula today and I had to pry it out right before thanks giving dinner. Which isn't the easiest thing to do! I want to get rid of it. Ugh.

Calling all seton people! How long did you/do you have yours in? What procedure did you get done to get rid of the fistula once and for all? I'm mostly whining right now...but I just miss having a normal butt. my CR surgeon wants me to keep it in as long as I can stand to build scar tissue for when we eventually surgically remove it...

I got mine about three weeks ago and they said that I might have to keep it for six months until the humira I started a few days ago heals it completely.

The worst part for me is all the stool leaking from it for a while after going to the bathroom... really like having an additional anus and hard to keep clean

I have had mine for 14 months and counting. :/
I see the surgeon every 6 weeks or so now - last time I saw him things had calmed down and it was not very active. He promised that when I see him in December if it is still calm he will remove it. Unfortunaltely, 2 weeks ago I started to flare again and that stupid thing is leaking all over. He has told me that even if my crohns is under control and the seton comes out there is no surgery that is going to work for me. The stupid fistula is likely here to stay.

Yeah mine hasn't calmed down at all. It's always (TMI) sort of oozing. I hate it. And I'm starting to flare back up. Had D for the first time in awhile for the past few days. What makes us so lucky to have to deal with this stuff I wonder?

I hope they are able to take yours out in dec.
Are you getting the surgery to have the fistula permanently removed?

No surgery will remove my fistula. The surgeon said we can talk about options when my crohns in my rectum is setteled. He also said that for me the lift procedure would most likely fail within a week and leave a bigger hole between rectum and fistula.

Danu are they sayin they may be able to do surgery to get rid of it for you?

I had a seton stitch for nearly 18 months, it was eventually removed with a fairly minor operation to cut through the last remaining bit of skin.

How was recovery after the surgery? My CR surgeon did say that surgery would work for me. But he wants me to keep the seton in as long as possible because the built up scar tissue will help with post op recovery. Also he wants me to put off surgery because I get D, and he says that my sphincter should heal nicely but there is a risk of slight incontinence because of having to separate sphincter muscle.

Both my GI and CR surgeon are asking me to consider remicade. I have had signs in the past of a possible vag rectal fistula. But it hasn't been bothering me...my CR recommended to go on remicade to heal up the colitis and fistula issues.

I don't know that I am ready for a biologic yet tho.
I'm so newly diagnosed and I feel like once I go down that path I am stuck. But maybe it is worth it.

Danu,
Did the surgeon look for a vag rectal fistula when they placed your seton? You mentioned having possible symptoms from one. I was suprised after my initial seton placement to discover 2 setons. One vag/rectal. He noticed it while placing the other one. Not sure how hard they are to spot during EUA.

I had my first Seton for about 2 1/2 years, until it just fell out one day. The area never really healed in any way and even after it fell out there was a continual closing over and then bursting open every few weeks for 10 years, then I went on Humira which kept everything under control for 2 1/2 years until the Humira stopped working, I then developed multiple fistulas incl 2 recto vag fistulas. I was pregnant and could not take metronidazole or cipro. I ended up with 4 setons....it was awful. Honestly you do NOT want to let a recto vaginally fistula get ahead of you! Having stool come out through the vagina is not fun....there are some other ladies on here who I know would agree with me, so please if you think that you have a recto vag fistulas please make sure your Doc stays on top of it. I really wouldn't wish it on anyone from a pain perspectives well as mentally.
Feel free to ask me if you have anymore questions.

All the best

~Kat~

I just noticed you have the same name and use the symbols around it as I do....weird...lol

I had mine for about 6 months but that was before I was diagnosed and I was being treated as if I had spontaneous fistulas without crohn's. They didn't heal after the CR surgeon took the setons out, what a surprise.

I'm picking remicade over getting another seton. If it doesn't work then maybe I will consider letting them give me another seton; however, I found having the setons more disruptive to my lifestyle than having the darn fistulas. Cycling with a seton isn't fun at all.

Danu said:

How was recovery after the surgery? My CR surgeon did say that surgery would work for me. But he wants me to keep the seton in as long as possible because the built up scar tissue will help with post op recovery. Also he wants me to put off surgery because I get D, and he says that my sphincter should heal nicely but there is a risk of slight incontinence because of having to separate sphincter muscle.

Both my GI and CR surgeon are asking me to consider remicade. I have had signs in the past of a possible vag rectal fistula. But it hasn't been bothering me...my CR recommended to go on remicade to heal up the colitis and fistula issues.

I don't know that I am ready for a biologic yet tho.
I'm so newly diagnosed and I feel like once I go down that path I am stuck. But maybe it is worth it.

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I had a seton for about 3 months after fistula plug failed and I developed another abscess. Once my fistula track healed to the point of the channel getting very narrow my surgeon removed the Seton in hope of my body will “just close” the fistula on its own – obviously that that did not work as I still had active inflammation. I know that now, but few years ego I had a very incompetent GI who did not put me on any meds to address the ongoing inflammation and I had a fistulatomy that also did nor work as the inflammation was not addressed…Only after I went on Remicade and then on Humira I had some progress, but unfortunately the damage was done and I know have what is called a” keyhole deformity” post fistulatomy. In my opinion, a combination of antibiotic and some type of biologic together with a Seton has a better chance of healing inflammation in the rectal mucosa that caused the fistula so the healing can be achieved.

I think how long a seton must be used varies a great degree, and really, only your colorectal surgeon or GI should be setting these kinds of goals, in my opinion. It's not unreasonable at all to understand the variables that will determine when your treatment can change and what those changes can be. Your doctors should tell you these things, and if you don't know, you should be able to ask and understand. :hug:

AlliRuns said:

I'm picking remicade over getting another seton. If it doesn't work then maybe I will consider letting them give me another seton; however, I found having the setons more disruptive to my lifestyle than having the darn fistulas. Cycling with a seton isn't fun at all.

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I had a lot of issues with the placement of my first seton. It was outside the labia, and when I would sit down it would press in a weird way, and cycling was out of the picture for me. Since having this seton put in a second time with the new fistulas, it's been much easier. The area that was chosen to be where the seton exits this time isn't nearly as annoying, and I've had no problems with the knotted part of the seton being stuck inside and having to pull it through. (ouch!)

When I had this last EUA, a fistula tract was noticed in my outer labia which had only one opening. These things are so upsetting. I had my doctor tell me that it's not anything I'm doing to get more of these and that was good to hear. Not having the fistula initially close on it's own is a huge issue with Crohn's. I kept thinking if only I had cleaned it more, maybe that would have aided jn healing. Nope. It's just the nature of not having all the treatment your body needs to heal. Being on the biologics after having the initial fistula is really the only way to not get any more of these, I've been told.

This is my first post, I just joined because I am kind of desperate for opinions from somewhere else other than crappy websites and doctors! I was diagnosed with Crohn's in 2009, up until a few weeks ago I was only aware that it was concentrated in my ileum.
A week ago I thought I was developing a hemorrhoid but when I went to the ER cause of the horrible constant pain a CR surgeon told me it was an infected abscess on my perineum and he drained it.
It's been draining since last weekend and today I saw him and he said I need to go to the OR to get it drained more because it's still really infected. He also thinks it is developing from a fistula. And that if it is one he needs to put in the small tube to keep draining it (I think it's called a seton?) Basically I am completely lost as to what happens if it is a fistula. He said all this might be happening because the Crohn's could be in my rectal area now. AND I am having sharp pains in my ileal area and might need surgery for that. Completely different issue, but all this is very overwhelming and I am hoping someone has any experience?

Any input is greatly appreciated!

What type of medication for Crohn’s are you on? You need to discuss your treatment plan with your GI and start addressing it more aggressively. Abscesses and fistulas are external manifestations of Crohn’s that’s unfortunately fairly common for people with this disease. There are number of medicines that can help to heal fistulas and keep your Crohn’s under control. My experience is very similar – abscess that turned in to fistula.
I had a draining Seton put in and ultimately Humira is what is helping to keep my Crohn’s under control. If you have any specific question or concern, please do not hesitate to ask, this site and people on it are a wealth of information and support!
Best of luck to you!

My seton broke/snapped/came undone about 2-3 months after it was put in. Pulled the sucker out after that. It was helpful I think. I was using antibiotics and Remicade as well. Kept my abscess in check.

Well I'm starting humira and crossing my fingers that my CR surgeon will just yank it out once I get the treatment going.

It's amazing the little things you take for granted. Like being comfortable riding a bike or wiping your bum with ease.

Good luck Danu! I hope that you find relief on the Humira. You may want to read through the Humira sub thread. I did before I started it and it was very comforting to hear about other peoples experiences.

Had surgery to put in a seton 2 weeks ago and it's already unravelled and fallen out. Really annoying things to have in. Hope it's still stitched in deeper somewhere. On Humira and Imuran. Hoping it heals up soon

It fell out after two weeks? Mine has been in for a little over two years now (I think, I need to check the date on my original post). Occasionally I get the urge to cut it and pull it out. Esp when the knot travels into the fistula and it becomes really painful. But it's been worth keeping in because my fistula is continuously draining. I'm going to have to get a fistulotomy (sp?) and just have it opened for it to heal permanently. But for now, keeping in the seton. I'm on Humira also. But I haven't taken it for 5 wks. I went into mama bear mode and wanted my son to be able to get the live vaccines to protect him from the measles issue. But, my doctor did research and just learned that when babies are over one they can get the live vaccines despite continuing breastfeeding from a mama who is on a med like Humira.

My doc recommended imuran to me. But to be honest, it really scared me. Humira isn't really working for me anymore. Not sure it I'm going to go back on it or not because I'm doing the same off it as I was on it. Better actually since I just stated yoga.

Anyways, I'm sure that is more than you ever wanted to know about my seton and issues lol.

Hi, I am new here. I have had my setons for almost 14 months now. I had a fistulotomy for my perianal abscess back on 5/15/14. I had it re-drained and cauterized a week later. Then on 6/25/15 they re-drained it again and added a 2nd seton. Then on 7/17/14 they tried a malecot drain, which was inserted in the office because I couldn't be put under since I stopped my blood thinner injections and was back on Coumadin. The malecot drain being put in was excruciating. My mom could hear me screaming and yelling from the waiting room. Then on 9/17/14 the malecot drain was removed since it wasn't helping. On 10/2/14 they re-drained the abscess and added a 3rd seton. I have been doing horribly. I cannot sit, walk, or lay down without pain. I have seen my surgeon NUMEROUS times and he said it has to heal from the inside out. At my last appointment he said he will check on me again in a year, which means I am stuck with the setons at least another year or two.

P.S. How do you add a signature to the bottom of a post?

Thank you!

years now was told as long as i can stand it ...the knot is easiest turned in the shower. Once your dr. says it is ok, Get a bidet or a sitz bath and clean the area every time you use the bathroom. A hassle perhaps but should help with irritation ~ ask about Epsom salt, aloe for the sitz, look out for alcohol in wipes if you use them unless you want a red sore butt.

the pain can be different from each one ~ like real estate, location location location...


it will get better, keep as positive as you can.

Danu said:

Occasionally I get the urge to cut it and pull it out.
.

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you made me laugh, so true...just don't want to have to have it put back in lol.