Seton surgery

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maimmie

maimmie

Joined
Aug 12, 2011
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200
So I'm having seton surgery next week and I'm very nervous!

what should I expect? How much is this going to hurt and for how long?
I'm also very afraid that once the doctor gets in there he will decide things are worse off then he thought and I'll wake up with more then I'm expecting. Could that happen?
Like, we've discussed illeostomy before, could he get in there and decide I have to have that and do it?

I'm just so stressed about this!
 
I've had Crohns disease for 14 yrs and prior to 8 months ago (and switching my diet) I had fistula that absessed and went back to a fistula for 18 months. Life was completely morbid. I saw 4 GI's and a surgeon and they had no answers and didn't even wanna do any procedures. After researching and going on the SCD diet (Specific Carbohydrate Diet) and following it religiously the fistula that doctors told me I had to live with for the rest of my life scarred over, completely healed, and hasn't bothered me since. The book is called Breaking the Vicious Cycle and you can find A-Z what is allowed and not allowed online by googling it. I would highly recommended getting the book. Wish I had more time for additional information, but I have an irl committment to attend. Feel free to message me can talk to you through here or on cell phone whichever you're most comfortable with. God bless.
 
Last edited:
Maimmie, I personally haven't had a seton before (yet!). But they wouldnt do a major proceedure like an ileostomy out of the blue like that. That needs some preparation usually!

My understanding of putting a seton is that is a pretty quick proceedure.
 
Also getting seton surgery soon... Any input on the procedure itself and recovery would help me as well.
 
The good people in the fistula and abscess subforum sure know their stuff. And the wiki does too. You can click the underlined link for setons and there's all sorts of posts on the surgery as well if you do a search.

I've not personally experienced it yet, because my fistula went through my fallopian tube. (oh damn that hurt!) But at the rate I'm going, I'll have a personal report very soon!
 
Seton placement is not bad at all, its not realy a surgery, it's just a rubber band that will be placed from anal opening to external fistula opening, there is no cutting or stitching, etc. It’s a little uncomfortable, but there is no pain at all.
Some people have had fistula closure after having Seton in for a while to drain and shrink fistula channel. Some just use medicine to help it clean and heal that way. Some use both meds and Seton at the same time. Doctors don’t know what will work in each case as everyone is different. Its really is trial and error, the fact that there is no cutting (not realy a surgery)is what I am saying. The mucosa tissue is very frail and inflamed down there from Crohn’s, cutting will cause more issues – non closing wound, infection, etc.
The ultimate goal is to decrease inflammation so mucosal tissue can heal and close that fistula channel.
 
Ya, I do know the jist of the procedure but I guess I am just looking for reassurence that it won't be so bad and I have nothing to be afraid of. I've been through plenty of pain already so I'm sure I will survive this anyway.
Just hoping to hear accounts of how long or how bad others had increased discomfort or anything that could happen that I might not expect.
I want to know that this will make my life better, ease some pain, progress me towards healing in some way. I really hope it will. I'm sick of living the way I am.
 
It's an older thread, but there's some good posts that will help give you a better idea...

http://www.crohnsforum.com/showthread.php?t=18046

Also, while very technical, I did get lots of good information from the American Society of Colon and Rectal Surgeons website:

http://www.crohnsforum.com/showpost.php?p=342997&postcount=17

I'd recommend checking out that whole Beginner's Guide thread, actually. :)

And, I'll tell you this, and you can decide what you'd like to do with this information. Probably the most memorable thing I can tell you about getting the seton placed was actually seeing it for the first time. My surgeon explained it to me. He drew me diagrams. But it didn't appropriately prepare me for what it was. I quickly got used to the idea and quickly embraced the new "part of me."

Fortunately, or unfortunately, there's lots of experience around these parts with setons. But either way, we are so fortunate to have this place.
 
I would keep stool softeners on hand. The seton made passing a bm a lot harder, and some say it caused them constipation. You also will need to have a sitz bath in order to clean up after you have a bm. You will want to keep that area as clean as possible, and the sitz bath will help with the pain and drainage. Keeping baby wipes to use to clean off the seton after going was helpful for me. I used the thick incontinence pads in the beginning to catch the pus. Because of how thick they are, they gave a bit of padding sitting down. You also might want to watch wearing any underwear with lace or mesh material as the rubber band seton could get stuck (happen to me!) and very tight pants also are problematic. Due to the wetness I had from draining, I found I had to use destin, the medicine for baby diaper rash to control the chaffing. Hope this helps you out!
 
My procedure is tomorrow and I'm so nervous! for some reason my biggest concern atm is how much pain I might be in afterward. I'm afraid I'll be too scared to eat after because I'm afraid of how much my bms will hurt once setons are in. Ugh, I hope all this works and is worth it.
 
Good Luck. I was in a lot of pain afterwards, but the doc cleaned up the fistulas first and also stitched an internal one. I hope yours isn't so bad.

Where in Ontario are you?
 
I'm about an hour east of toronto.
I guess I'll just have to hope for good pain meds afterward. :( Theres alot of bad things going on down there.
 
well My procedure got postponed because I woke up with a fever this morning. :( caught a bug from my son. now I have to wait and get nervous all over again.
 
Maimmie,

I've had 2 surgeries in the past 3 years. Both were out patient procedures. Pain was definitely there for a few days. I missed a week of work. Probably would have missed a few more days, but my employer let me work from home. Thank god for laptops.

Best of luck.
 
Hi Maimmie,

You've probably had your surgery by now, but I had a perianal abscess and fistula op and I felt awful for 2 weeks. The only pain relief I took was paracetamol but that's because codeine gave me a massive headache.

I was in the middle of a major flare at the time though so I had that on top of the pain, trying to keep it clean etc etc. I don't think it was just the op that caused my grief! Or maybe it was and I'm just a wuss, but literally I couldn't face doing anything all I could do was lie on the sofa and watch TV.

Hopefully you will have a much easier time of it.
Take care
Claire
 
I had four seton bands placed on 10/1 of this year and basically the drain just wasnt big enough. It was painful and I failed Percocets. Then they had me stay in the hospital for awhile.The hospital wasnt fun but the pain was under control and they had me on I.V. antibiotics, which was good. While I was in the hospital they did another surgery. This one involved a six inch incision, but my surgeon didn't cut into my sphincter thank goodness.

I don't want to scare you, but I hope sharing my experience can help you have a better idea of the possibilities, so you're a little bit more prepared.

And BE CAREFUL with those stool softeners. I'm not saying don't use them but just be careful. Like maybe start slow with them like maybe once every other day. They just made me miserable! But that also had to do with the drain not being big enough. I just try to make sure that I'm getting plenty of fiber. Like I eat a bowl of granola everyday.
 
My procedure is rescheduled for tuesday. I'm still quite scared! I'd rather be prepared for all the possibilities then be suprised. So thank you for the feedback.
I don't think I'll even need stool softeners since I'm have the big D these days anyway. I'm just hoping I won't be going too much and irritating the area.
 
I'm just wondering what instructions everyone was given to prep for the seton surgery?
My doctor told me clear fluids the day before and I called the office this morning to see if I could have breakfast. The secretary told me if the Dr said clear fluids that i could eat breakfast and that clear fluids didnt have to start until noon.
I'm just curious what others had to do. I'd hate for the doctor to not be able to do what he needed to do if I wasnt cleaned out or whatever.
 
I wasn't given any instructions, just fast after midnight, and clear fluids up to 4 hours before, standard surgery stuff.
 
Hi maimmie, I had seton surgery this week and and it was a piece of cake. I got myself so worked up for nothing. I wasn't allowed to eat or drink past midnight the day before. The surgery itself went fine, aesthetic didn't bother me no nausea or anything, I got home a couple hours after. My doc prescribed me strong painkillers and said I would need them for a couple days, but I didn't need any and only took one before I removed my packing, just in case it hurt, which it didn't. I'm being careful of course, not sitting on it much but I'm walking alot, doing chores, I feel fine. Good luck with yours!
 
When I had my Seton put in, I had no issues or pain, just a little discomfort – obviously you have to get used to having something “in there” all the time, but after about a week I felt nothing! All that “stuff“ that kept collecting and closing the channel finally had a way out and it felt so good not to have to live with never ending swelling, pain, raptures over and over!
I did take a lot of sits baths and used folded gauze between the cheeks and also foam memory pillow when sitting. Calmoseptine lotion kept me nice and dry all the time.
My Seton was taken out after 3 months when the wound from initial abscess healed to just a little pin size opening.
 
It's good to hear some positive stories. Hopefully, mine will go so smoothly. I've been having alot of problems down there so I don't know if it will be quite so simple. I guess I'll just be prepared for the worst and hope for the best.
 
Had the setons put in yesterday and I have to say I'm very happy I'm not in alot of pain at all as of this point. I'm nervous though because I havent had a bm yet. I'm assuming that is what is going to really hurt and be unpleasant.
Seeing those setons for the first time is pretty shocking! they are bigger then I thought they would be. I'm a bit confused how they will help drainage since the bands seem big enough to fill the holes. How does the stuff get by them?
i havent had alot of drainage happening yet, just a bit of bleeding. Is that normal? is it because I havent pooped yet?
I'm pretty scared of my first bm, I'm afraid to start eating solids yet. Was that a big issue for anyone?
as I suspected I need to have ileostomy surgery to really fix all of my problems and this seems to be just a temperary solution to give me a little bit of relief.
 
Glad to hear it’s done. Why do you think you will be in pain? Are you normally in pain with each BM? Remember – NOTHING was cut there! Don’t be afraid to have BM. Ceton will just keep the channel open so nothing will collect and cause swelling. And it will drain! Just make sure to wash after each BM - I used a hand held shower, and keep gauze between the cheeks for any discharge. Take lots of sits baths – I took one after each BM and before bed time I would take a bath. All the best!
 
Yes my bms were painful before the seton placement. The docter did say he did do some cutting on the right hand side but I'm not sure if he ment inside or outside. He said he didn't cut any muscle.
I think I have a couple absesses that are still forming up inside there too.
I've been dealing with this pain but I was nervous everything being messed with down there plus the setons being in there now might make it more difficult initially. Should I not expect it to be anymore difficult than it already was I guess? Could it be better maybe because the setons are taking pressure away by heping drain?
I'm pretty sure I'm thinking to much about this but since I've been in so much pain already I'm a bit of a nervous wreck for any change.
 
My setons are fine I guess. they aren't causing me any more pain then I already had. But,I'm still having a lot of problems and am in a lot pain so I've decided to have ostomy surgery. My surgery date is Dec. 18th. :(
 
Sorry to hear that you are in so much pain – I can understand how you would come to that decision.
I do know a lady that had never ending pain and decided to have an ostomy – according to her, her quality of life improved and she is happy that she had it done.
Best of luck to you with your surgery!
 

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