Non-cutting Setons - Did they help?

[Lil Beak]

Hello everyone.

I'm glad to know there are others i can connect with about such a personal and painful issue like an anal fistula/ abscess; however it saddens me to realize how much of us are afflicted with them :thumbdown:

Since we all have questions around here, i thought i would start a new thread about some of mine.

Non-cutting Setons: If you have had them put in place before, what was your experience?

1) Did it relieve the pain associated with bowel movements?

2) Did it prevent the fistula tract from swelling up with fluids & abscessing?

3) Was the recovery after the placement surgery a painful one? If so, for how long?

4) Does it bother you at all on a daily basis? Or can you forget it's there?

5) How long did or do you have to keep it in for?

6) When in a flare (diarrhea mostly) does the fistula pain return? Mine tract really burns and swells up a lot more when i have diarrhea (makes sense that it would).

7) Anyone ever go on 6MP for treatment of fistula? How did it work out?

I am having surgery next Thursday on October 4th for a seton placement for an anal fistula that i have. I had an abscess just to the right of my anus in August 2012 and when they drained it they said it could turn into a fistula. It did. And after 2 weeks the skin at the incision hole was closing back together and i got another abscess. I had to go back ot the CR surgeon for another incision and drainage. This pattern repeated itself 3 more times since then, every 2 weeks. I am finally going to get a seton put in now, and i welcome the idea of a seton because in theory it will end all my pain if it's job is to prevent re-abscessing.

I hope someone can share some encouraging experiences with me about having a seton put in. I just want to have a life with as minimal an amount of pain as possible due to this fistula. I want to have a BM without pain and swelling each time.

Will the seton do that? I can live with a loop in my butt if it means i wont have the pain.

Please share your experiences.

I am not on Remicade or Humira for this. My G.I wants to start me on 6MP if my Prometheus results say i can metabolize it- still waiting on those results. I'm currently only taking Colazal capsules for my mild Crohn's Colitis. The fistula has by far been the worse symptom of the disease for me.

Thanks to everyone!

 

[Lil Beak]

Anyone out there with an experience to share for me? I am so nervous that this seton thing wont help or stop my daily pain at all...

Thanks.

 

[Sailorluna]

Hi, Lil Beak,

First off, good luck with your surgery. I know that is scary. My experiance has been a mixedbag, but I am happy to share.

I had my first abscess/fistula surgery this time last year. I came out of surgery with two setons. One peri-rectal which I expected and one recto-vaginal (surprise). They took the vaginal one out in November. My peri-anal fistula opted to make new tracks and abscess and had to be re-scraped out and drained 2 more times with the seton in by the end of the year. They put me on humira in December. (I have been on azathioprine since 2010). In April they drained it again and opened they track up further. That did the trick and it is no longer making new tracks or abscessing.

Each operation has resulted in a couple days off work. The last one was very painful because it was extra work done. Yay Painkillers!

I will do my best to answer your questions.

1) Did it relieve the pain associated with bowel movements? I never had pain from bowel movements. Maybe because of where mine is located inside?

2) Did it prevent the fistula tract from swelling up with fluids & abscessing?
It always helped it drain but mine was stubborn and took several operations to get to where it drains enough. But, I have to say that when I have D it alway starts draining and gets sore even now. When this happens I take a hot bath or sit on the heating pad.

3) Was the recovery after the placement surgery a painful one? If so, for how long?Couple days for most of the surgeries.

4) Does it bother you at all on a daily basis? Or can you forget it's there?
When I do not have d it does not really bother me. I always have a little pad tucked in there because it away leaks some. Day and night.

5) How long did or do you have to keep it in for? Still in. The fistula is still to active for the seton to come back out. They took me off the humira 5 weeks ago and are trying to decide on a new med. Hopefully it will dry out with a new med change and then he will remove it.

6) When in a flare (diarrhea mostly) does the fistula pain return? Mine tract really burns and swells up a lot more when i have diarrhea (makes sense that it would).
Yep, it will go right through the fistula and that makes it swell and hurt.

7) Anyone ever go on 6MP for treatment of fistula? How did it work out?
I was on Azathioprine which is like 6MP long before I got the first seton. It certainly did not prevent it. But then I thought only the biologicals did that (Remicade / Humira / Cimzia)

I think thats everything, if you have any other questions please ask. Good luck with your seton, it may not be perfect but I am sure that it will be better than the contant drainings you have been enduring.

 

[Lil Beak]

Sailorluna,
Thanks so much for answering my questions! :ysmile:

That must have been quite a shock when you awoke from surgery with the recto vaginal seton! But it sounds like that was taken out shortly after, so I hope that means that antibiotics or something took care of it for you.

I haven't heard of a fistula making multiple tracts, but I bet it happens a lot. I am still so new to all this. I'm glad to hear that the 4th procedure you had did the trick and stopped the other tracts and abscesses from re-forming.

I have heard from a few people say that basically the seton is a great thing in that you won't have new abscesses forming once it's in ( ideally) and that the only time there is any pain with bowel movements are on bad diarrhea days.

I do lots of hot hot sitz baths, I love em. And I just bought a heating pad and I sit on it at work - very nice as well

So since you have stopped Humira will you be going to Remicade next? I see that to be the trend with most people.

Again, thanks so much for sharing your experience with me. I am feeling less anxious and much more positively now about the surgery, it's recovery, and the seton overall!

 

[Sailorluna]

The GI has shifted me to the IBD clinic so one of the IBD docs can select the new meds. He wants me off of the humira for another 4 week before he will do a colonoscopy and then discuss whatever new meds they will put me on.

Good luck next week. I am glad you are feeling better about the op. It will be well.

 

[Cpeta]

Hi there,

I am 33, have had Crohn's for 22 years, and fistulizing Crohn's for 8 years. All of my fistulas have been perianal. First fistula in 2004, next one in 2008, third in early 2009. I had seton placement surgery for two fistulas in 2008. I then started humira in early 2009. Since then I developed a new fistula, but then one seton was removed in 2010, and my two smaller fistulas closed up. I was also on 6 mp for a few years, but stopped to safely conceive a baby.

1) Did it relieve the pain associated with bowel movements?

Well, after some time. My recovery was slow-going, and there is still irritation from material traveling through the fistula, then there is the issue of cleaning after a BM. If the fistula is active, it will continue to drain slowly resulting in frequent cleaning and soreness and tender tissue around the opening and within the fistula tract. When things hopefully settle down, there should be relatively little pain and discomfort. Bit of a roller coaster as I am sure you have come to expect with IBD.


2) Did it prevent the fistula tract from swelling up with fluids & abscessing?

It does get swollen and drains fluids, but I have had no additional abscessing where the sermons were placed.

3) Was the recovery after the placement surgery a painful one? If so, for how long?

For me, I was in the middle of a bad flare, and on disability from work at the time, so my body was in a very weakened state. Also, the perineum is a very sensitive area, and the surgeon took many biopsies during the placement surgery. My recovery was long and painful and required bed rest for a month. The pain was searing, and constant. Vicodin was necessary and only helped so much. My fistulas are right next to my vaginal opening, and would be irritated by any bathroom trip, urinating or BM. The skin was raw and sore non-stop. This lasted with horrible pain for a month, and gradually eased up. I don't mean to scare you, but it seems like most people who have seton placement surgery have quick, not very painful recoveries, which definitely works in your favor. I just wanted you to know that sometimes it is possible for it to be worse so that you can be emotionally prepared if that ends up being the case.

4) Does it bother you at all on a daily basis? Or can you forget it's there?

When you are not flaring, you barely notice it. When you are flaring, it is a constant nuisance. The seton can sometimes rub the flesh around the opening and make it raw, but that is not a constant thing.

5) How long did or do you have to keep it in for?

For my small fistula 2 years, my large fistula 4 yrs and counting. They are deliberating over putting in a fistula plug, however on a recent trip to a new colorectal surgeon who was over zealous, he thought I would do better if my seton was tied a different way and replaced it with a new one while in his office. Well, ever since it has been active and draining fecal matter after every bowel movement causing me pain, discomfort, and frustration as it had not been leaking fecal matter in years. I am also 37 weeks pregnant which makes it more the nuisance.

6) When in a flare (diarrhea mostly) does the fistula pain return? Mine tract really burns and swells up a lot more when i have diarrhea (makes sense that it would).

Yes, diarrhea does irritate it, and you will need to wear panty liners at all times.


7) Anyone ever go on 6MP for treatment of fistula? How did it work out?

I was on 6mp, pentasa, flagyl and humira for 2 1/2 years in which time two small fistulas closed up. My large fistula was pretty dormant after a while. Went down to humira only a year and a half ago. After new seton put in, the fistula drama is back.

 

[Cpeta]

Sorry, typing on my phone. I wanted to wish you well in your surgery, and a speedy recovery. You will be fine. Speak up if you need to if you are in a lot of pain, and feel free to ask any more questions that you have! Take care.

 

[guest3832]

1) Did it relieve the pain associated with bowel movements?
It's hard for me to remember, but I think the only time I have had any sort of pain with bowel motions is when I had a peri-anal abscess (before it was drained, turned into a fistula & had the seton placed). So yes, I haven't had any pain with bowel motions since having the abscess drained and the seton put in.

2) Did it prevent the fistula tract from swelling up with fluids & abscessing?
Definitely! I have had my seton in for 9 months now and I haven't had any noticeable build up of fluid and there have been no more abscesses.

3) Was the recovery after the placement surgery a painful one? If so, for how long?
Not at all. I had no pain at all - both straight after surgery and the days following. Obviously I would have been given pain relief during surgery, but I didn't feel the need to take anything more when I was home.

4) Does it bother you at all on a daily basis? Or can you forget it's there?
It doesn't bother me at the moment and yes I definitely do forget it's there. About 7 months ago (2 months after the seton was placed) it did become a bit uncomfortable because I had an extra growth of tissue around the area which was becoming irritated by the seton. I think one of the Dr's actually rotated the seton so that the "knots" holding it together were exposed externally and although overtime the seton would rotate again, I felt this helped to relieve any discomfort I was having. However, this only lasted a month or so..on and off and so it doesn't bother me anymore.

5) How long did or do you have to keep it in for?
I've had my seton in for 9 months now. I was started on Infliximab (Remicade) before I had the seton placed and was told that if the Infliximab was going to close the fistula it would have done so by now (and that time frame was about 2 months - after at least 3 or so Infliximab treatments). My colorectal surgeon advised I keep it in for at least a few months. Really they have left it up to me with how long I'm happy to keep it in for. I wasn't planning on keeping it in for this long but I had a spinal fusion with instrumentation 3 months ago and didn't want to upset my body while it was healing, so I'm hoping I can speak to the doctor later this month and discuss possibly removing the seton.

6) When in a flare (diarrhea mostly) does the fistula pain return? Mine tract really burns and swells up a lot more when i have diarrhea (makes sense that it would).
I can't answer this question, because diarrhoea isn't a symptom of mine.

7) Anyone ever go on 6MP for treatment of fistula? How did it work out?
I've been on 6MP ever since my diagnosis with Crohn's in March 2011, so I wasn't put on it especially for the fistula. I developed an abscess 5 months after my Crohn's diagnosis, which after being drained turned into a fistula and then 4 months later I got reoccurring build ups which is when I had the seton put in.

All the best with the surgery! I hope I answered the questions thoroughly enough. For me, a seton was definitely an effective way in keeping my fistula from causing me any pain or discomfort. The only discomfort I had, as previously mentioned was some slight irritation 2 months after surgery. These were just my experiences..it's likely everyone's will vary.

 

[Jaano711]

Good luck.

Been there had the surgery. Was a relief, pain reduced significantly, recovery very quick. Had it done on a Friday and I was back at work the next week.

Everyone heals differently and reacts to surgery differently so just take it easy. I think the worst part about setons is they hold the fistulas open so they tend to leak especially when you have D, but better than sore pus leaking abscesses.

Hope the biologically help. I have been told that remicade is the better one for fistful using disease. Unfortunately I had an anaphylactic reaction on 3rd infusion and ended in coma with septic shock. Was then put on humira and it didn't make any difference to fistulas for me. Hope you have success.

I do remember at one stage a recto vaginal seaton moved, and was excruciating, but CR just took it out in a consult and booked me in a week later to have a different sort put in.

Just on a lighter note my poor GP nearly freaked doing my Pap test as she saw a green stringy thing near vagina opening and didn't know what the hell it was. Needless to say she is now very knowledgable about seton.

Once again good luck.
Janette

 

[sdw1028]

Lil Beak
I just had two setons placed last Friday as of now drainage has slowed down but the bands are very iratating as I move around I try to stay still and not eat a lot to control bowel movenments those are still painful but not as much. I'm due to start Remicade infusions next week to attempt to close out. If this does not work other steps will have to be done. I wish you the best today with your procedure

 

[Lil Beak]

Hi All-
I had my seton surgery today and it went superbly I must say!

I chose to do a spinal block instead of a general anesthesia and it wasn't bad at all! I was given a little sedative (propofol) right before they wheeled me to operating room, and that was the best stuff ever! Felt nice and relaxed for the spinal procedure and just when surgery was starting I drifted into an awesome light sleep. Woke up 20 minutes later, coincidentally that was just when the surgery was ending and I was getting ready to go back to recovery room.

My surgeon came by to see me and I asked him about how it went, what the tract looked like, if he found any other fistulas, fissures, etc; he said there was only the 1 fistula, no fissures, and that my anal canal looked pretty healthy otherwise. He said he took biopsies of the mucosa tissue in the tract for confirmation of either Crohn's being the cause of the fistula or just an infection that happens to crohnic fissures in people even without Crohn's. Should have those results in a week. I know I have Crohns of the colon, but this would be a definite diagnosis of PeriAnal crohns if the biopsies come back positive. Just good to know I feel.

He said he was easily able to identify the fistula tract and place the seton. The best news is that he saw that my annoying and large anal skin tag was looking pretty useless and he chopped it off! I was STOKED about this because I hated that thing! It was long and sometimes would swell and ache, and it just never felt like something I could get used to, but I really tried to think positively about it when I had it because I assumed I would have it forever.

Here's the ONLY downside to the spinal anesthesia: it took 6 hours for me to get all the feeling back in my legs. They don't let you leave recovery until you can safely walk. I made a premature attempt to walk with the nurses on either side of me, and thank god they were there because I was straight jello from mid-calf area down at that point. I though I might just be heavy feeling in that area when trying to walk, since I could kind of wiggle my toes and that made me assume they were ok again, but didn't expect to be weak and like jello so much - so back to bed I went.

A few hours later we tried again and I carefully made it to the bathroom. I could feel my bladder was full so I wanted to pee, well once in the bathroom it wouldn't come out! We tried turning the sink water on and waiting for it for about 5 minutes. A nurse explained that young and healthy people often experience this after any spinal or general anesthesia because our bladders are strong and quite continent, so when all the muscles have been abruptly relaxed from an anesthesia, some of the bowel and bladder functions get a bit shocked and tense, no budging in their muscles for a while. This freaked me out because they said if I couldn't go soon they were going to use a catheter on me. Well that did the trick, and in a 2nd attempt 20 minutes later the pee was scared right out of me! After that I was able to change back into my own clothes and go home. When I was changing I actually looked at the dressing Pad and it was very bloody. I wasn't sure exactly how things would look down there.

My butt was still very numb even after I regained the feeling back in the rest of my body, because at the end of the surgery they injected a strong local for lasting pain relief.

I got home about 3 hours ago, and recently noticed that my butt was no longer numb. I am not in pain at all though. About 3 hours ago I took 1 Norco pill that I was prescribed, and that could have something to do with why I don't feel any pain.

I mustered the courage to look in the mirror just now, and it all looks great!! The seton is neon yellow (rad!) with a black twisty tie on it. No inflamed or angry looking skin, not much blood or pus draining right now, and the skin tag is gone! And there's no ugly or gaping bloody wound left in its wake. It looks like I never even had a tag, like the good ol days

Well Like I said, I am in no pain at all right now. I am worried about what it will be like when I have my morning BM tomorrow (that never fails to happen each morning instantly when i et up). So my plan is to wake up an hour before normal, stay still in bed (as to not trigger or stimulate morning movement of my guts) and pop a Norco and fall back to sleep for a little while. Hopefully when I fully get up an hour later I will have some pain relief already going if it's needed.

Another thing I'm worried about is that Norco can make you constipated. I have stool softeners at the ready if that happens, but I'm always weary of those with my crohns flares being so touchy and unpredictable recently. The only thing worse than constipation for a fistula is burning & blasting diarrhea. So I really hope if I take stool softners that it doesn't backfire ( haha, get it: back-fire!) on me.

MAYBE I will feel just fine within a few days and the seton will be doing is job to reduce the pain and abscess-like swelling that was happening with every BM for me; in that case, I wouldn't need the Norco, and that is what I am channeling with my positive thinking vibes. They really work ya know. Modern medicine treats half of our physical ailments in their recovery and outcome. The other half of healing needs to be done mentally. It's just as important. So just as you would take a pill to help heal, trust a heaping helping of your own specific healing and healthy positive thoughts to be part of your care regimen too. You won't regret it.

Well, I have had an easy and dreamy experience today considering it was a day of being at a hospital for 10 hrs , 5 hours of partial paralysis, and getting an anal piercing!
I hope if anyone else is about to go through a first time seton surgery, that they think of my very positive experience and feel more at ease.

You all answering my initial questions from this thread, and sharing a lot of your own positive surgery experiences and seton outcomes, gave me such hope that I would do fine with mine too. So I thank you ALL in ways words cant describe. Peace of mind from support like you all have offered me is truly priceless.

Thank you!

 

[Cpeta]

Glad to hear it went so well for you!!!! Definitely jealous that you got your skin tag removed... I keep angling for my 'elephant ear' to be removed, and the last response I got was 'keep dreaming' lol. Oh well, not that much of an irritation.
Good luck with the rest of your recovery!!