cutting seton- OUCH!

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jesflr337
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 1/20/2010 8:41 AM (GMT -7)   
I had my seton tightened for the first time on Monday and it HURTS.
For those of you who have had one of these, how many days can I expect to feel like this? I'm trying to work but just want to go home and curl up on the couch with a blanket... ibuprofin is not really helping.
 
Help :(

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/20/2010 10:04 AM (GMT -7)   
Careful with that Ibruprofen it can cause bleeding in us Crohnies. I know you are hurting, but I don't want you to hurt your intestines more. I don't have any experience with the seton tightening, but did want to send you some gentle hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 1/20/2010 6:53 PM (GMT -7)   
jesflr337 I feel your pain, it's not easy is it? I know you've probably heard it a thousand times before, but warm salt baths regularly will help soften things up and keep things numb, even if its just temporarily. Thank god that seton is in there clearing up the area. My butt is still very scarred from my mushroom drain and seton but nobody sees it so I consider it an OK place to have a big, messed up scar :)

When I had my seton in at work i brought in a giant, bright stripey pillow, gentle for my bottom, and sat on it sort of 'sideways' so that i was putting pressure on the cheek that didn't have the seton. It helped a lot. And in my lunch breaks I would take naps and avoid walking as much as possible. If you subtly let people know what is happening, they might be more considerate and make it so you don't have to move around much.

jesflr337
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 1/21/2010 5:55 AM (GMT -7)   
No, it's not easy, but I'm hoping that bit of yellow elastic will get me back into life... :) The things we have to go through!
I lived with the pain of an abscess for years before they finally diagnosed it, and this hurts a lot but is not like the hurt of the abscess. Today is better, less of a burning kind of pain and feels more like a healing kind of pain if that makes any sense.
And thanks, Nanners, I switch off between ibuprofin and tylenol- the ibuprofin doesn't really upset my stomach. They also gave me a few vicodin for when I'm at home and so I have to be careful with the tylenol. They haven't decided if I have Crohn's or not at this point- seems people on here are all too familiar with that.
I'm still not convinced this seton will take care of all my issues, but I'm trying to trust my doc (a well respected colorectal surgeon) and just heal, and not overthink... he says while these things seem barbaric they often work... but I've not seen too many success stories about cutting setons on these boards.
Thanks for the gentle hugs :)

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 1/21/2010 3:35 PM (GMT -7)   
I know what you mean about the 'healing' pain; its much more pleasant than the other, sharp, intense, infected pain. Wishing you a speedy recovery!! :)

I have had great success with setons/mushroom drains and that was with severe colo-rectal crohn's, so I am optimistic you will do fine :)

Glad you have a good surgeon too, it really does make all the difference!

jesflr337
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 1/22/2010 11:56 AM (GMT -7)   
Phoebe, good to know you have had success. I've mostly found stories of people discussing setons and pain or whatever, but very few who come back on and say they helped or healed up :)
I sometimes feel like I'll never be back to "normal" or that I don't even know what that is anymore. I haven't gone more than a few weeks in the last few years without being bottom up on an exam table! Sometimes this seton feels like it's just masking the symptoms of a new abscess, but so far we can find no evidence of that, so hopefully it is just scar tissue and healing happening. I'd really like to start a family soon but that's not happening until this is a bit better!

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 1/22/2010 6:42 PM (GMT -7)   
Oh hun, I know that feeling, I know it so well. One morning after I'd had my 2nd mushroom catheter surgery for a branching abscess, I was at work and I read something on the forum that just upset me so much, something to the affect of this disease changing my life forever, and I just lost it, I ran into a conference room (empty) and burst into tears. I rang my dad and asked "do you think this is going to be my life??" - i was so desperately miserable and it did feel like it was never going to end.

Don't get me wrong; it did take months and months and months to heal, and at the time it felt like I would never again sit down properly. I used to look at people in Ikea, sitting away, slamming their butts onto chairs without giving it a second thought, when sitting down/getting up, into and out of cars was agony for me.... but I am confident that if you have a good surgeon and setons in place, things can only get better for you. Straight after surgery is the worst time, it can only get better from here. It will be slow and steady, but it will happen. My Mushroom was put in in June/July, and the scars are still healing, but I don't look 'back there' all that often any more, because I know the fistula is healing up nicely.... I can feel it (or NOT feel it) ;)

soon you won't even feel those setons, they will just be sitting there, doing their job - by the time mine was ready to be taken out with a little snip, I didn't mind it being there at all!

Ashton89
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/24/2011 5:05 AM (GMT -7)   
Hey guys!

not looking to hijack this thread or deter away from it in any way. i just see its been a few months since everyone here was chatting and im wondering how its all worked out for people?

ive just had the first of hopefully 2 cutting setton ops and gosh its painful... only a week ago ive had the first op... but still so sore and hard to sit down and a bumpy road can almost bring me to tears haha

oh well cheers for the optomism shown in the threads above keeping my fingers crossed this does the trick and doesnt impact my life too much more then it already is

jesflr337
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 3/8/2011 11:58 AM (GMT -7)   

Hi Ashton, I happened by and saw your post.

I have only good news to share today :) I had the cutting seton about a year ago, it finally fell out on its own. That incision healed up nicely but I still felt (even in this thread I was feeling it) that there was something else going on down there. I still had a lump and was having a small amount of drainage. Went back to my excellent surgeon and had another surgery in July of last year. This time I didn't get a cutting seton, just a nice large incision I had to pack and keep clean. I followed up with my surgeon every few weeks to manage the healing and was discharged about October of last year!! He's still a bit baffled by my case and the length of time it took to figure me out, and we're still not sure if I have Crohn's or not. I've not had any symptoms recently, although for awhile there around the holidays I was worried something was flaring up. He thinks it was my nerves regenerating. At least I know what to expect and who to go to if something happens again. We're on our way to starting a family and hoping everything stays stable. Good luck to you! My seton was the most painful in the days after the surgery, and the day of tightening, but that tissue healed remarkably well in my case.


harley57
Regular Member


Date Joined Apr 2003
Total Posts : 43
   Posted 3/8/2011 12:28 PM (GMT -7)   
I am reading this post with much interest. I am scheduled next week for a EUA with possible seton placement. I have scanned many old posts and I am finding very little discussions for seton placement. I am nervous and I have no idea what to expect. I would love any input or advice concerning the procedure. Thanks :)

trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 3/8/2011 6:33 PM (GMT -7)   
Hi Harley! Very coincidentally I had two setons placed last night. I don't completely understand the situation, but I can share what happened so far, and check back as I get used to the setons. I had 2 abscesses, one on each side, which were originally treated with drainage tubes which just hung from my bottom. One I cleaned by myself and had for a month, the other was placed Saturday, but upon evaluation on Sunday it seemed like neither drain was working really well. I believe you are usually put under anesthesia for this kind of surgery, but I'm pregnant, so I was just given a spinal block. The surgery itself took about 45 minutes, but again, I had two. They used some kind of air pump and a probe to find out if my abscesses had fistulas, which they were forming from. They actually found out I have a horseshoe fistula which is feeding both abscesses. I don't know if you have an abscess or any pain, but initially after the surgery I felt better than I had before. There were some rough spots, where I had a lot of pain, but they did give me pain medicine to manage the pain. I think they would probably give a non-pregnant person more pain meds than I got. Initially I had a lot of swelling, and there's still a lot of drainage, but the swelling's gone down and it's not even 24 hours after the surgery. There are little tail like things sticking off the setons where they are tied, which is a little weird. I'm still in the hospital finishing up a round of IV antibiotics. If you have any questions, let me know, and I'll answer any questions I can. I'm still learning, so I'll be interested in the conversation on this board. Keep us posted!

harley57
Regular Member


Date Joined Apr 2003
Total Posts : 43
   Posted 3/9/2011 8:05 AM (GMT -7)   
Trickynikki, thanks for responding. Congrats on the pregnancy. I have a RV fistula and this is my first experience with a seton placement. I pass gas and stool through my vagina and my surgeon says that he may end up doing a seton placement during my EUA. My surgeon also recommends that I have surgery that will result in me ending up with a colostomy for life. He isn't willing to do a reversal surgery due to my Crohn's Disease. As you can imagine I am nervous. I am not sure what to expect. Is it painful? Can I see the seton? How long does this thing stay in my body? I am desperate to save my colon and avoid a colostomy. I am not mentally prepared to have such a life altering surgery right now. Thanks so much for your help.

trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 3/9/2011 1:26 PM (GMT -7)   
Hey Harley, thanks for the congratulations! I'm sorry to hear you're going through this. A seton is strung in a loop, so my loop is through my abscess, through the fistula, and back out my rectum where it is tied. If yours was the same way as mine (which I don't really know) it would seem they would loop through your rectum, through the fistula, and back out your vagina. I don't know if it would be different though. I can see the seton bands, I have two due to the two abscesses, and can feel them right now, and they are painful at this point. However, my surgeon told me that this is the absolute best kind of drain to have, it is what he would want if he were to need the procedure. He said once it heals that I won't even know it's there. It should require little care, just cleaning after a bowel movement, which he said to do in the shower or with a wet towel. Seton's can stay in indefinitely, but I do think there are different situations with them. I read earlier in this post that someone said their seton needed to be tightened. I asked my dr. today and he said that that is not my situation. Mine can stay until they are ready to be cut out. It is certainly less of a procedure than a colostomy. I was awake for my surgery, under a spinal block. Our disease is awful, and there are often a lot of unpleasant decisions to be made. I'm still in the hospital and adjusting to my setons, but I do feel this is the right decision, in the end I'm told I'll be able to resume all normal activities with the setons in place. Keep me posted, Harley. I'll be thinking about you.

jesflr337
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 3/9/2011 1:44 PM (GMT -7)   
Hi Harley-
You would need to find out what kind of seton you might have placed. Mine was a cutting seton, which eventually cuts through the tissue slowly, allowing an abscess/fistula to heal from the inside out- took about 2 months I guess? Sounds terribly barbaric. Other setons simply stay in to keep a tract open. As long as I kept my cutting seton very clean I had no trouble with it. A squeeze bottle in the bathtub was my best friend.
If you click on my username, I think you can see my posts about my experience. I was also going in for an EUA, and woke up with a seton. My abscess and fistula were so painful, that waking up from and recovering from the surgery were not too bad. My deep painful throbbing ache was gone almost immediately, replaced by a more shallow surgery type of pain. As I said, I felt better days after and a day or two after my seton was tightened. It is a little freaky at first to see the incisions and little rubber bands hanging from your bum, but I ended up being attached to mine. It helped me heal- and when it fell out one day I never even realized it until I had already flushed it away. Good luck to you all!

trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 3/9/2011 4:50 PM (GMT -7)   
Jesflr337-Did your cutting seton cut by being tightened? Or was that just the nature of the band? I feel like I don't have all the answers about mine, so reading your post was really helpful :) The squeeze bottle sounds like a good idea! Did you use just water, or some kind of sterilizing solution? Did your seton fall out because it untied, or because it cut all the way through your fistula and abscess? Thanks for posting your story!

jesflr337
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 3/10/2011 6:22 AM (GMT -7)   
Hey trickynikki- yes, it cut through the tissue by being tightened. My doc explained it as the way a wire cutter cuts through cheese. It cuts through the tissue slowly allowing scar tissue to form and heal slowly as it cuts through. You could probably google cutting seton and get an illustration. Mine was really just a thick yellow rubber band, nothing sharp about it. It eventually works its way down through the tissue until it just comes free one day. It never was untied. I think if it wasn't tightened it just would have stayed there. It is pretty crazy that it works.
For the squeeze bottle, I just used warm water and soap. Sometimes I had to wash several times and then just aim the spray at the wound. I was also allowed to sit in sitz baths a few days after surgery which is also very soothing. The warm water increases blood flow. Good luck to you!

harley57
Regular Member


Date Joined Apr 2003
Total Posts : 43
   Posted 3/10/2011 7:55 PM (GMT -7)   
Thank you both so much for your responses. I am headed for my EUA next Tuesday. Still nervous but willing to do anything to avoid having a colostomy. I have one last question. Do any of you know if having a seton placement for a RV fistula would cause any intimacy issues? In my head I am assuming that it would be placed in the vaginal area and I am imagining that the end would be exposed out of the vaginal area? Thanks again for your help :)

trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 3/10/2011 8:47 PM (GMT -7)   
Gosh, I don't have an answer for that, Harley. I know my doctor said eventually I wouldn't notice I even had a seton in, to the point, that some patients have had theirs fall out and didn't notice it. Or that they've had patients who forget to tell them they have setons in place because they're so used to them they've forgotten about them. I hope that will be the case for you, but I'm not sure. Please keep us posted. I hope everything goes well for you!
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