Have you ever had your seton TIGHTENED??

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.

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

 

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!

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

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.

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!!! 

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! 

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

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... 'bling'.

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

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....

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.

 

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

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

Hi everyone, first time posting. I had my seton tightened today and wow! It hurts! The doctor said he wouldn't prescribe any pain meds because it wasn't necessary for this. After arguing with him he final did prescribe naproxen but it hasn't helped the pain much at all. I haven't been taking meds since my surgery 5 weeks ago but after the seton being tightened today I felt I needed a stronger pain reliever than naproxen and a bit upset that my doctor refused to give me anything. So here I am in pain laying on the couch reaching out to you guys and hoping someone might have some ideas for pain relief using home remedies. Any help would be most appreciated. Thanks everyone.