Seton for anal fistula

My first question is: was your surgery done by a ColoRectal Surgery with Crohn's experience?

There are setons and cutting setons. I have only had 'regular' setons which stay in place until removed and it's job is to keep the track open to avoid closing off the abscess. A cutting seton gets tightened and eventually moves the track outside the body (maybe someone with experience with that could chime in!).

The only time I had mine removed was while on Remicade when the drug was actually closing the tracks. Unfortunately that didn't last and had to have them all put back in:( I had them for more than 10 years...they never closed on their own...so if yours do, I would think your doc should remove the seton.

I have many fistula scars and don't know if they do anything about it...I am sure it's a sensitive area because damaging the muscles down there could be a problem. You should check with your doc if you are still having pain and get something for it. My pain only lasted a week or so but I always had discomfort if I sat for too long.

You should be on meds with your friend(s)...I was on constant maintenance with Cipro/Imuran to help keep things under control. Not perfect but it definitely helps!

good luck!!

Hey TJJJ,

I've also got a seton- just had it tightened yesterday for the second time, I've posted on here a few times, not too many people have had these it seems, or they're not posting a lot!

My surgeon wasn't sure what he was going to do with the seton in the beginning, I had a large incision on one side that was left open, and the seton which loops around the muscle from the right side of my rectum. It didn't really bother me at first, the incision was what bothered me, it looked horrible and hurt. Once the incision healed up (and I actually may still have a small fistula at the far end of the incision) he started tightening the seton, so I guess at that point it became a cutting seton. It is like a loop of rubber band. The first time he tightened it I was on here in lots of pain, this time either he didn't tighten as much or my body is not freaking out as badly. He said if the tightening bothered me too much, he could just go ahead and cut the muscle under anesthesia, but he said he usually has better success with the seton moving itself slowly outside of the body.

My seton actually seems to collect "stuff" sometimes, and once or twice felt like it was not draining properly, but a hot bath and some pressure usually seems to move whatever is in there out. I still never feel I can keep it clean enough, even with a handheld shower.  He's tightening the seton b/c he says that it may be actually catching some poop and creating more of an infection than it should be, so I'm hoping once it finally works it's way out I'll be healed up... I still have a lot of drainage almost 2 months after the surgery, so I just use those little gauze pads. (I know TMI, but if I can't say it here where can I say it??) :)

I will say he did NOT warn me how much it would hurt the first time around. The nurse kind of chuckled and said it was like having your braces tightened, but I told her I had braces for years and this was a VERY different feeling...

Oh, and I was antibiotics for months before my surgery, but he said I could discontinue after the surgery, and I've felt so much better. That flagyl made me feel horrible and I lost weight, but now I'm starving all the time!

 Thank you all for your replies- i have another infection - hardly suprising! I dont understand why the NHS dont give you antibiotics when they do the surgery! You have to wait to get the infection first! Mine is in the muscle it came up quite deep on the mri scan. My next appointment is 8 weeks  outpatients not surgery when i suppose he will tighten this thing! At least i now know what im in for! Good luck all

Rectal abcess/fistla was the bane of my exsistance for 12 years. My first indication of Crohn's were 2 rectal (on either side of bum cheek) abcess' that required cutting, draining and packing. This left me with 2 continous draining fistula's. I had surgery 4 years later to insert seton's. I ended up with an infection that put me back in the hospital and ended up with 3 strokes. I was 26 at the time. Last November (im now 32) I had my rectum removed and have a permanent colostomy. This was the only way for me to overcome my rectal fistula's, Im so happy that I no longer have to wear a maxi pad to catch drainage. Good luck with yours!!!!!!!

-Allie

wow, i am sorry to hear about your issues, how do you feel now with perm colastomy?

<-agrees and nods head at what Ohio76 said. I feel FABULOUS, I look FABULOUS and most importantly I can BE fabulous to all my friends and family and especially my husband, who for many years have watched me cope with Crohn's and all the things that have come with it. Do you know what I did yesterday?? I went out and helped my friends flyer cars in a mall parking lot. I could have NEVER done that without Oscar (my colostomy, he has a name). I can do and eat things that I haven't been able to do/eat since I was 18.
I am still on Imuran, but have NO sign's or symptoms of Crohn's. NONE. I want to shout for joy and tell everyone that Oscar is the BEST thing I have ever done. I haven't struggled with the body image issue as most do when they receive an ostomy, Im not sure why, but think it's because I don't view Oscar as an impediment to life but rather a life giver. I love him and I feel amazing. Im 32 and life is just beginning for me. WOOHOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

-Allie

Hi everybody, I have had a fistula for 2 years and had a seton surgery on November 2009. I have to make it tighter that is so painful for me. On top of it I am 4.5 month pregnant, so I cannot take too much medication. My Dr wants to tight the seton on another surgery (because I cannot handle the pain), but I am worry because of my pregnancy. It is so uncomfortable situation for me; I have a 2.5 years old baby boy that makes it harder. I am so hopeless. Sorry to say this. God bless you all.

Crohnalicious said...
I have had 3 different fistulas with setons over the past 5 years, the last one had to be tightened and that was so extremely painful for the first 12 hours, I cannot describe. If you are having pain that is lasting more than 24 hours since your procedure or tightening, call your doctor. I was almost going to cut the thing out myself, it was so bad. I think it was worth it in the long run as the fistula closed shortly thereafter. I never felt discomfort wearing clothes or sitting unless it wasn't positioned correctly.

I found the only thing that helped keep it draining and clean was bathing in very hot water. I am lucky to work from home when I need to so I was in my tub 5-6 times per day in water deep enough to cover my bum and soaking as much as possible for 15-20 minutes or longer at a time, especially after a bowl movement and especially in the beginning/after surgery. I carried a small baggie of baby wipes (with no alcohol that causes burning) in my purse for times when I wasn't home or in a public place to make sure the area was clean. I limited my food to liquids or close to liquid as possible to reduce the amount of action in the bowels to lessen the irritation. I always where a pantyliner, even now. My bum is not the same and has leakage issues from the scars and surgeries. I think one of the setons I had in almost a year and it fell out on its own.

SOAK SOAK SOAK.....see if that helps you. And I was always on an antibiotic from the get-go as well. Good luck to you. I know it sucks. I'm sorry you are going through this and it breaks my heart to read these posts of how much people suffer with this disease. I'm managing with mine right now, so I can't complain but I always wonder what is to come. I'm 42 and I'm liking the wisdom/experience part of it all, but not the wrinkles on my face, blah! haha

 this is my first time on this site.  For the last 3 years I have had 8 Abcesses drained finally they sent me to a specialist who put in a seton string.  That was may and now it is july I know thats not a long time but after 9 surgeries I have almost given up  hope.

After you seton came out did the drainage stop or continue?

Hi
I have had my fistula for over a year now. From your post I have learnt a lot and the pain I was experiencing was normal. I had surgery a week ago and they never said anything about the pain. However my seton had fallen out less then a week after the surgery. I looked after it washed as match i could ( being a primsry school teacher doesnt help). I was just wondering if this has happened to anyone else and what the next step might be. Thanks

My seton is looped through the fistula and the anus.. and it isnt a cutting seton. So it is supposed to cut through the muscle of the anus and then fall out, since it isnt a cutting seton the muscle should have time to heal back.. Even though this sounds extremely painful it is somewhat fine until i go to the bathroom. In which it burns so badly the only word I would think to describe it would be a terrible burning sensation in the anus.. I know there are far worse things to happen, and to be honest I'd take this over the tube down my nose when they needed to scope me. and possibly since the seton didnt work last time maybe it's a cutting seton like Equest said

Hi Rahm. Sorry about our bad luck. I had a seton on two separate occasions. The first occasion I had a surgeon put a seton into my anal fistula and it went very badly. I was in constant pain and it really felt muscle spasmy at times. My surgeon didn't have much of a bedside manor and for those reasons I decided to seek a second opinion. The next surgeon I found said that it was put in improperly and he used too big of a seton. So I had another surgery where he took the old seton out and put in a new smaller one. It still hurt and I still had a fair amount of discomfort- for a while. Immediately I asked the doctor when I could get it out. My doctor told me that everybody is different. And some people "never" get their seton taken out and it's possible that a fistula could "never" close.
Anyway you should be able to do whatever you're capable of doing. As long as you aren't physically injuring your fistula or seton you should be able to play sports. I remained active and was totally fine. The seton took a while to get used to. But after a while it didn't bother me anymore and I'd forget that it was there. Good luck to you! Don't give up.

Hello all,

I have read a lot of postings about Anal fistula, fistulotomy, procedure and recovery, and I am truly grateful for all of the information I was able to find online. Thank you!

I also want to share my experience to help others.

For me and at first, I thought it would be a simple surgery/recovery and that I would be all good after a week or so but when I came back in the room after the surgery, the doctor told me that I had also a Seton in place (I didn't know what it was!)

The next day I realized that this surgery was only the start of a recovery and it was better for me to learn more about it and go through it with the best attitude I could.

I had my fistulotomy with a cutting Seton placement almost 3 months ago and I can finally say today that it is now all OKAY. I SURVIVED :)

Now I feel very good and the recovery is 99% completed but the first 8 weeks were totally different (see more details below).

TRY TO STAY POSITIVE. You will better after few days/weeks.

Everyone is having a different experience but I realized that there are more people posting about their negative experiences about anal fistula than people sharing good and positive experiences.

On this post, I would like to share with you a summary of the experience I had with my anal fistula surgery in order to help others that might be facing the same situation.

I think it is also important to remember and to always keep in mind that keeping a positive attitude in the most difficult times we may face in life, will help us going through it better and faster.

DON'T WORRY, IT IS PAINFUL AND DIFFICULT IN THE BEGINNING AND AFTER THE SURGERY BUT SLOWLY AND SURELY YOU WILL START FEELING BETTER AND BETTER.

My suggestion & tips:

- Keep the area clean (Sitz baths (5 minutes) 3 Times a day + after bowl)

- Keep the area Dry after shower and sitz baths (Hair dryer if needed)

- Drink alot of water (6-8 glass of water)

- Take your prescribed pain killers only if you feel severe pain.

- Drink food that a rich in Fiber

- After few days, try to go the bathroom at the same time everyday and try to keep that routine.... You will be able to keep regular bowel movement.

- For the discharge, you can wear pads or 4x4 (non sterile gauze) that you place between your butt cheek. (I had to change mine many times per day).

- Don't worry, discharge is normal for the first few weeks. It can be yellowish to brownish color and it can have some smell and especially if the seton is other material than Rubber.


My Experience:

- Small bump near the anal area (No pain).
- Bump was sometimes becoming bigger and then start leaking liquid (not smelly).
- Doctor said it is an Anal Fistula and the solution is a Fistulotomy.
- I went for the surgery in the morning and it took about 30 minutes.
- They offered me to do it under general anasthesia or with Spinal anesthesia. I chose the second option with a feel good cocktail of medication during the surgery.
- The doctor came to see me after the surgery and told me that the fistulotomy went well but that he also had to place a Seton.

A new episode in my life was starting...

Day 1 to Day 5 after the surgery:
Pain, lot of discharge, not feeling good at all.
Need to accept the situation, the seton, the discharge, etc.
I drove my car after 24 hours and I tried to go for a few minutes walk everyday. Drinking a lot of water and trying to eat healthy.

Week 2 after surgery:
Feeling much better than first week, still some pain and discharge.
Still drinking alot of water and trying to eat healthy

Week 3 after fistulotomy:
Feeling better than week 2, less/light pain and still some discharge.
I Went to the doctor for a follow up and he tightened the Seton (Pain!). The rest wound was healing well and I still have to do sitz bath or clean with shower head 2 times a day.

Week 4 after fistulotomy:
Feeling pretty normal and I feel that the worst part is now behind.

Week 5:
The seton was tightened again (The pain may last for up to 24 hours after the Seton is tightened by the doctor). No more sitz baths.

Week 6-8:
No more pain. Little discharge.
I feel normal and I realized that I went through a lot in the past few weeks.

I lost my Seton on week 8 and I have no more discharge.
FREEDOM

The doctor told me that we need to keep a cutting seton usually up to 8 weeks after the surgery and until it falls by itself. If it doesn't fall by itself, the doctor will simply remove it in his office.

I saw my doctor few days ago and he said that everything is OKAY but the wound can take up to 1 year to completely heal into a nice scar. I still have to see him again in 2-3 months for a simple follow up.

Good luck to all and remember to stay positive.
There are so many beautiful things we can learn and see when we face difficult times. It's like a hidden treasure ;)

On the first 2 weeks after the Fistulotomy, you may find it hard to believe that you will someday start feeling 100% normal again, but YES YOU WILL! :)

Take care,
D