Have you ever had your seton TIGHTENED??

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chubbaluv
Regular Member


Date Joined Apr 2004
Total Posts : 41
   Posted 3/6/2008 10:11 PM (GMT -7)   
I had this done last week and ZOWIE!!!!!!  My surgeon said it would feel like getting your braces tightened, but I've never had braces and I wasn't prepared.  I was taking Tylenol 3 every 4 hours with no relief and then I couldn't pee and panicked!!  Codiene shut down my bladder, hello ER visit but by the time I waited 5 hours to be seen the pain subsided (18 hours after the tightening) and they gave me a stronger pain killer which I never wound up taking.
 
This is my 3rd seton and I never had the other 2 tightened, so what gives?  My surgeon keeps saying, "I'll have to look back at your records why we didn't tighten them before, but meanwhile come back in so we can tighten it again, another 3 more times possibly."  YAH!  RIIIGHT!  I'll be right there. 
 
How come some have to be tightened to "go away" and others don't??
If I blow this guy off and never return will I have a seton in FOREVER?
Any suggestions for the sore area from friction?  (I so miss my treadmill, the first time I tried to run after surgery I started bleeding from friction,  ouch.)
 
I read someone out there has 5 right now?????   I can't even imagine more than one, bless your heart, whoever you are!  :(
 
 
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/6/2008 11:33 PM (GMT -7)   
Wow, chubbaluv.

I (sweet innocent that I am) thought they only tightened setons if they were catching and dragging on things. What's this about tightening having some sort of therapeutic value? What did they tell you?

Genuinely curious -- and clenching my buttocks on your behalf, ouch!!

Ivy.
Co-Moderator Crohn's Forum.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 3/7/2008 10:29 AM (GMT -7)   
I don't know why or why not they tighten, but mine doesn't get tighten. It has migrated down on its own. Right now, I plan on having mine forever! :) It is either that, or take it out and see if will close. I might try that this summer when I am off of work, but I can't miss work right now if it doesn't work. Maybe the tied off end is too long and that is why it is irritating you??? Mine doesn't bother me at all.

ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 3/7/2008 5:55 PM (GMT -7)   
I am so sorry that you are having so much pain! Is this a different Dr. that did the other setons? It's just awful that he didn't give you better info!
 
I discussed both options with my surgeon at one time. As far as I can tell there are 2 types of setons. One is just the rubberband that they leave in and the other is called a "cutting drain". They are totally different instruments from what I understand. I had a foloow up appt. a few weeks ago and my surgeon was moving the drain around. I asked her if she was tightening it and she said no because she did not insert that type of drain.
 
The way it was explained to me, is it "shaves off" the fistula if it is deeper in the muscle wall. Kind of like how you would cut ice with a string. I was told that they don't normally use them on crohn's patients because of the possibility of it not healing. I was told that about the fistulas plug too, though and they still did that on me and they want to do another one. Theres' still a lot about fistulas that is a mystery, even to Drs. So frustrating!
 
Keep taking the tylenol and ask for hydrocodone or something stronger if it doesn't work. Keep taking your sitz baths, too. That should help a little.
 
So sorry and hope you feel better soon ! (((hugs)))
 
Ginger
 
 
37 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (29 surgeries including abscess I & D, exploratory surgeries, 4 C-ton drains and 1 fistula plug) Have also had several self bursting abscesses.
1st Remicade infusion 6/5/07-still taking it.  Praying I'll get better soon so we can have a baby.
Ginger :)


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/7/2008 9:09 PM (GMT -7)   
There really should be a manual for these things! Which kind of seton do you have? As others have mentioned, there's at least two kinds that I know of personally - the rubberband kind and the plastic tube kind... my doc refers to both kinds as "setons" which does not help clarify things!

I had to have my butt-straw seton "trimmed" as the fistula/abscess grew shut. My muscles and flesh just kept pushing the tube further and further out of me until I looked like I had a tail. I can't imagine what could be "tightened" with this straw kind... but if it's possible - I'm sorry. Goodness.

The rubberband seton that I had probably SHOULD have been tightened once or twice throughout its tour of my bum. As my fistula healed the loop became bigger and bigger until my feces were getting caught in the loop. Pleasant imagery, I know, sorry - but it's true. My rubberband went into my fistula and came out my anus - making one big happy circle of a rubberband - it's so hard to explain to people that don't know what I'm talking about. If the rubberband kind is the seton that you have, I could very well see why getting it "tightened" would be unbelievably painful.

So sorry to hear you are having to go through this! I would find a doc that makes a little more sense and takes the time to make sure you know what's going on. I switched surgeons mid-seton and didn't have any trouble with the new guy picking up where the old one left off.

Good luck to you! (and your bum)
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


chubbaluv
Regular Member


Date Joined Apr 2004
Total Posts : 41
   Posted 3/7/2008 9:34 PM (GMT -7)   

It is a rubber seton.  And the surgeon did describe the tightening as "cutting it out" technically like the ice cube example someone just said.  Eventually "squeezing" it into the wall to choke it off I guess??  I just don't understand because I had 2 other setons before that were rubber but were never tightened and healed on there own after 3-7 months or so.  I do need to have an answer to WHY and I'm very consciously "putting off" my next doc appt.  I received a voicemail from his nurse the other day just stating "it has to be done if you ever want this to go away."  

It wasn't bad to actually have it tightened, but 10 minutes later as I'm walking to my car it started throbbing pretty intensely, actually drawing tears to my eyes (it was VERY hard to drive home, I was by myself) and then after 12 hours it was excruciating.  Who signs up for that again??  and get this, I begged my husband to take me to an ER to have that stitch removed where it was tightened so I could stop the pain.  (the resident on call told me to because I couldn't pee, my stomach was distended and the abscess seemed like it wasn't draining anymore).  The ER doc in a local suburban hospital looks at it and goes "what IS that?"  So I pulled up my pants and said, "yeah, we are outta here" and drove 2 hours to the university hospital were my doc is.  (THAT was scary, although it's not like every day you see a drain in someone's bum!)   By the time I got there and waited 4 hours to even see a nurse, the pain was subsiding and codeine had worn off so I could pee and they said, "well, looks like you are okay now". 

So how many of you tell people what kind of procedure you actually had done?  My husband and I keep saying I had a "procedure" and leave it at that, but closer friends ask for more details, since it seems like a bigger deal than a small procedure and they are concerned,  but they can't fathom how it all works.  It's hard to explain, but it's a comfort to have you all who have been there done that.  Thanks for the support!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/7/2008 9:40 PM (GMT -7)   
I'm sorry you had to go through that, chubbaluv, and it seems so wrong to me that nobody has really explained what all this suffering is for.

Please keep us posted on how you are.

Ivy (who doesn't tell people about her seton either)
Co-Moderator Crohn's Forum.


already_sickofit
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/16/2008 1:57 PM (GMT -7)   
Mine wasn't set up to tighten, mine was set to use gravity to pull it's way out.  Doc used a piece of suture, like fishing line, and made a figure 8.  The top loop through the fistula, and the bottom just hanging outside my body. he then attached a lead fishing weight, approximately 1.5 oz. and told me that it would pull downlike braces tightning, similar to the earlier poster.  Well, I've HAD braces, and they never hurt that bad.  After 9 days I almost literally crawled into his office, and had him remove said weight. I've spent a week recovering from that, and have an appointment in the morning to discuss the next step. 
 
I knew and expected some pain, but I also figured the pain would lessen in time.  Mine got worse. On day 1 and 2, I could pretty much function as normal, by the end of the first week, I was back on the narcotic painkillers left from the surgery itself, and it was hurting beyond the chemical ability to control the pain. 
 
I'm having serious thoughts to getting a second opinion, since this Doctor isn't a specialist.  I am, though, going to hear him out tomorrow morning, and see what he has to say.
 
This is my first post, so I should probably add that i have NOT been diagnosed with Chron's Disease, it was ruled out before my most recent surgery, (by a gastro-doc, not my surgeon).  I've had three abcesses surgically drained since 2005, and this is my first seton.
 
thanks for taking the time to read about me,
already_sickofit

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 4/16/2008 6:52 PM (GMT -7)   
Hi and welcome! Very interesting story....please keep us posted about what the dr. says at your next apt.

What is it that they think you have then?

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/16/2008 7:25 PM (GMT -7)   

Hello all.  My surgeon said the type of fistula you have dictates the treatment and the seton.  If the fistula is "high", meaning above or in the sphincter muscle, then advancement flap surgery or plug surgery are your options.  You get a ring seton that just keeps the fistula open so it won't plug.  If you were to cut the fistula open, it would heal BUT the sphincter muscle wouldn't be strong and you would be immediately incontinent. nono

If the fistula is "low", meaning closer to the anus and no sphincter muscle is involved, then they can either 1) cut it open and let it heal or 2) use a cutting seton.  A cutting seton cuts through the tissue as it is tightened, and the tissue heals in behind it.  So if you felt like you we being cut -- you were right!!!  sad sad sad

Mine are "high" so my options are advancement flap surgery or learn to love them!  My disease is active -- abscess and fistula/seton in January and continuing inflammation.  I can't have surgery until the inflammation is gone.  But considering the advancement flap surgery is only 70 - 80% successful in CD people, I'm not liking the surgery anyway.  I'm allergic to Remi and Humira, so "learn to love 'em" is my option at the moment!  sad

So that is what my Dr told me.  Does this mesh with what others know??


maz
Regular Member


Date Joined Apr 2003
Total Posts : 34
   Posted 4/16/2008 7:27 PM (GMT -7)   
I'd love to know what/if people tell others about their fistulae and setons. I tell very few about the fistulae, and even then in very little detail (so they still aren't really left with much of an idea if they didn't already know what they are). The setons - no one. I also call it a 'procedure' for all who ask.


already_sickofit
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/17/2008 11:10 AM (GMT -7)   
For chroniemomx2: Well, to put it the way they did, they diagnosed me with EBL. (Extremely Bad Luck.) As it appears now, I have/am eliminating one high, twisting and complicated fistula, which had formed two separate but linked abscesses on either side of my backside. 80 Percent of it was low, and allowed it to be surgically opened, while a loop of the tract passed directly through my sphincter muscle.

I had a very good visit with my doctor this morning, and we have decided to give my body a few more weeks to heal from the opening of the low portions of the fistula tract that was done concurrent to the placement of the cutting seton into the high portion. He came as close as I've ever heard to a doctor saying he made a mistake in putting such a large weight on so quickly post-op, and wanted me to be comfortable and healed up before we continue this, "with a smaller weight."

I also struggled hard with a 5 day plus 'hangover' (withdrawal) from the narcotic pain killers once I stopped them this past week. I hadn't yet stopped them from the surgery itself before the weight was applied, still quite uncomfortable from the incisions. I do NOT want to have to use that strong of a pain reliever again.

For FallColors, my doc described the seton as being used in the high portions of the fistula that pass through the sphincter muscle, cutting the through the sphincter slowly, so that it doesn't spread apart. It cuts slow and heals behind itself to prevent that loss of control. He described it like a wire cheese cutter through cheese, where the top sticks again after the wire passes through. This effectively re-routes the fistula following the path of the seton, which is then drawn out by some form of traction like elasticity, weight, squeezing via repeated tightening, etc.

I'm going back to see him in a couple weeks after things heal up good, to continue the weighted traction process.

For maz: I am pretty comfortable with myself and my causing the discomfort in others, so I have no trouble describing in detail what's happening to me, and why. I tend to judge my discretion more on the reaction of those who were silly enough to ask the gimpy guy why he's limping. I usually tell them initially it's recovery from surgery on my bottom. Continued curiosity gets them all they want and more of what's going on. Including props. I have a replica of the weight, on a piece of fishing line, on my keychain. my... scool 'bling'. scool

Post Edited (already_sickofit) : 4/17/2008 12:22:48 PM (GMT-6)


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 4/17/2008 11:58 AM (GMT -7)   
alreadysickofit.....i like your attitude..... good luck with your recovery and I hope they get you all healed up....

Chubalov....i think everyone else has kind of said what I know about setons.....

there are several types, some that are simply meant to allow the fistula to drain and prevent future abscesses....others, like yours it sounds like, that are designed as "cutting" setons, that help heal the fistulas, as described above....

i wish I had more time to reply, but I am busy at work now.

I can totally relate to the doc who asked "what's that?" my primary doc asked the same thing when I had my preop appr. before I went in for placement of a few more setons not long ago....yes, I have many, more than 5 actually....but none are the cutting type, and i wouldn't dare let my surgeon "tighten" them, but I think my rear situation is a bit different then yours....

anyway, I wish you all well in dealing with the nightmare that fistulas are....

Later - Gladbag aka swisscheeseforarear (a friend recently told me it sounds like my rear looks like swiss cheese, at least she didn't get to look at verify her suspicions...hehe, she is probably reading this now)
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


already_sickofit
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/17/2008 12:18 PM (GMT -7)   

I appreciate the luck! I could use a little of the good kind for a change.  As much as I long for an explanation of WHY I've had to deal with these uncomfortable situations, I hope that the non-Chron's diagnosis is accurate.  I don't think I have the temperment to deal with this for a truly long time. It's been 4 years since my first abcess started draining spontaneously, not very long, compared to some of you.  I have the utmost respect for those of you who do deal with this. 

I try to maintain a positive attitude, but a world of uncomprehending co-workers, active 6 (almost 7, daddy!) year old daughters, community swimming pools, car shopping with seating comfort a priority, and the drainage...  sometimes it gets to be a little much.  I have a supportive family and friends. They keep me centered and keep me going. I don't know what I'd do without them. 

And now I've found you guys. While I don't completely understand everything that you have to deal with, you have an understanding of what *I* am dealing with.  Being understood means a lot, and I'm thankful to be where I am.

 

Glad Bag said...
alreadysickofit.....i like your attitude..... good luck with your recovery and I hope they get you all healed up....


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/17/2008 4:00 PM (GMT -7)   
Hello Already,

I'm glad yours can be healed with out surgery!! My Dr. said I would definitely be incontinent because the majority of muscle is below the fistula. Considernig the consequences if he is right, I think I'll trust him on this one!

It may be you don't have CD. You don't have to have CD to get abscesses and fistulas, and my Dr. said nearly 50% of the populaiton will get a peri-rectal abscess at some point in their lifetime. I was amazed at this statistic because I don't know of anyone else. Then he said you don't hear about it because it isn't typically a topic brought up at dinner parties! He's got a point.

Have you have a scope done? I only have rectal CD with no other symptoms so far. I was diagnosed when they scoped and the biopsy showed CD tissue.
 
Also, I have heard that 5% of folks with other CD symptoms started with CD in the rectum.  I haven't been able to find a statistic for the number who started in the rectum and never got anything else.

Post Edited (FallColors) : 4/17/2008 5:13:59 PM (GMT-6)


already_sickofit
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 7/1/2008 11:21 AM (GMT -7)   

Good afternoon! Just thought i'd post an update to my condition.  The doc decided my seton wasn't progressing as fast as he'd like, so i'm scheduled to go in and re-open my fistula (should all be low, now, and a small, shallow incision). the weight i had for traction came untied last friday, so i have had near a week of happy relative pain free days and nights. The surgery is scheduled for the 10th of july. Doc said it'd be a tiny incision just about a cm long and about that deep, as well.  nothing, in comparison to my other surgeries. i was hoping for it to pull all the way out and avoid the surgical solution, but if that gets me healthy and 100% again, all the better.

4 months of a lead anchor dangling from my insides is enough suffering for me.

 

richirich
New Member


Date Joined Jul 2014
Total Posts : 1
   Posted 7/24/2014 11:14 AM (GMT -7)   
Just wanted to thank all of you for sharing your stories and issues. I was just diagnosed with CD last month after 2 abscesses on each side of my rear. 2 surgeries and of coarse the colonoscopies prior though. I did have a fistula on each side; one side was some how cut open and left to heal but the other side has a seton in it; not sure as to which type as of yet but is very uncomfortable. I am scheduled to see my surgeon next week so I hope to learn more but have been very worried as to if they have to tighten it and as to how they do that (asleep or awake). I went through 6 weeks of horrifying pain prior to the surgeries and have had enough but sounds like many of you have had much worse which I will give my condolences'. I will follow this site if for nothing else; all of you have shared so much information that not even my doctors have as of yet.

Karthik
New Member


Date Joined Mar 2015
Total Posts : 4
   Posted 4/12/2015 4:55 AM (GMT -7)   
i did cutting seton no mar 11 2015, it drained/pained a lot, 1 month over, my pain reduced and my draining got reduced, but not sure when my seton falls off its own.. how long it will take or when will it fall from my back. is there any time ?

Karthik

Kay2015
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 7/23/2015 10:25 PM (GMT -7)   
@already_sickofit: I applaud you! I have after an initial embarrassment factor decided to go down that route too, so if someone asks and wants to know I will tell, I have even shown the raw wounds to some of my friends so that they get an understanding what is involved. The reactions are predictably mixed, but most of them are very supportive.

I had my seton tightened yesterday and was in a world of pain afterwards. I was that near to going back to the surgery and asking them to release it but as if by magic (well tramadol / Ultracet magic) this morning it was much more manageable, I suppose the initial discomfort is when it starts cutting through the sphinxter.

A much more delicate question, if I may?

When do you have sex again? Is the seton a hinderance? That is more for the girls than the boys.... sorry! I had now 2 ops, 1 in March and last one 17 days ago. After the March op, I waited a good 6 weeks (but no seton so not as obvious). Husband is understanding but I know he feels unloved...:-(

Rockstaroverit
New Member


Date Joined Aug 2016
Total Posts : 1
   Posted 8/12/2016 5:09 AM (GMT -7)   
Hi all, i had no idea so many people were experiencing the same issues so it's reassuring the know there are others out there.

I am sorry to hear about everyone's pain.

I have had this problem since 2014 when I presented with a horseshoe abscess and they found a fistula at the same time. I have a high transphincteric fistula involving most of my interns, sphincter. I have been cleared of chrons which is good but have ongoing problems. I have had five operations to date , 2 have been unsuccessful. I was referred to a professor who is recommending tightening my seton which is currently in me from the last operation . Another option presented to me by my surgeon is a colostomy which is drastic but has great results. I am certainly leaning towards that as it will fix it and there is no chance of incontinence or massive pain. Just discomfort but I have already experienced that. I hope that others will read more about this option
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