Managing pain from setons?

[Chaine1]

Hi everyone. Newbie here, no Crohn's (colonoscopy showed none) so I hope you don't mind me posting here.

I had a partial fistulotomy, along with 2 setons placed Tuesday for a fistula that formed nearly 9 months ago. On Saturday, I had super sharp pains that seemed to originate from my anus. I was in absolute agony - crying and could barely move. One of the seton ties rests directly on top of my anus, and it seemed to me that this tie was scraping against my anus, and was giving me these super sharp pains.

Anyway, I called the colorectal surgeon on call, and they asked me come into ER to make sure no new abscess was forming. Surgical resident found nothing, and determined the pain was a result of 'improper pain management,' and advised me to check in with my surgeon on Monday.

To add, on Sunday, I started having a foul-smelling, thick drainage. It smells like my dog's breath! I'm still having these pains, but they seem to come as a result of some movement this way or that way. When these pains come, they stop me in my tracks, my breathing stops, and my eyes bulge. I feel like whimpering.

I talked to my surgeon's nurse today, and she simply advised taking more Percocet, and that it was all normal.

I'm having a hard time accepting that, even if it is true. I can't imagine this level of pain continuing long-term, and with an estimated 2 more similar surgeries, I'm feeling despondent.

Any advice for how to manage? I haven't even made it back to work, and on the side, I'm a group fitness instructor. I'm normally extremely active. The idea of being couch-ridden long-term is bring me to (more) tears....

Thanks for any advice.

 

[Sailorluna]

I would insist on being seen by your cr surgeon. Sorry but trusting a general surgeon would not be good enough for me. I have heard too many horror stories.

For me pain management is a sitz bath or sitting on a heating pad. Good luck, I hope you find some relief.

 

[myriahdawn]

I agree with sailorluna! Are you using gauze too?

 

[Chaine1]

Thanks for the responses.

Yes, I was really hoping to be able to see my colorectal surgeon today. However, she's out this week, and the nurse seemed reluctant, because, as she said, it was all normal. I'll give it one more day, and if there is no improvement, I'll insist on someone seeing me. Thanks for reinforcing what my instincts were telling me.

And, oh yes, myriahdawn, I have a seemingly permanent piece of gauze. I'd hate to add up the amount of money I've spent on gauze over the last 9 months....

Thanks again, it's helpful to just have someone to relate to!

 

[myriahdawn]

Ha! I actually just yesterday went and bought a mega pack of gauze off amazon!

Also, I did not do well with my first seton... They used a plastic one and apparently it was too large for my fistula tract and all it did was cause more problems. They ended up switching me to a silk seton which was MUCH better. Maybe you could ask about that. I really don't know what could be causing your pain exactly, but I did have a lot of discomfort with my original seton when everyone on here seems to make it sound as if their first surgery wasn't too bad. Mine took me out for weeks!

 

[jezer101]

My setons were very painful and being stood up at work all day, didn't help. I was told it was down seton being too tight, is yours a cutting seton? If it is, it will feel uncomfortable to start with, but they do get better with time.

You can ask for it to be looser and it will still do the job of preventing the trac closing up (and preventing a abscess) but it won't make it will heal up quicker!

 

[Chaine1]

Hi again all,

I'm two weeks out now, and things are a lot better, but still experiencing a lot of discomfort. Tried to do a workout yesterday, and any kind of bouncing or running was out of the question.

myriahdawn - thanks for the info - silk sounds sooo much nicer than this hard plastic! And I agree - when I was researching about how long to expect to be out after having it placed and talking with the colo-rectal nurse, it seemed most people had a fairly easy go of it. This was not what I expected!!

Jezer- I have draining setons (sorry, should have stated that!). I'll be seeing my CRS next Monday, and I'm definitely going to be discussing the level of pain I have felt!!

I'm kind of wondering if my level of pain may be because I had a fairly long fistula tract? The external opening is next to my vagina, which is part of the reason it took me so long to make it to a CRS (OBGYNs were trying to deal with it). The length of the tract meant the CRS did a partial fistulotomy, and then placed a seton in the tract, and then a second seton looping through my anus and the tract. I don't know if the length of the tract had anything to do with the pain, but that's the story I'm telling myself now.

Anyway, I greatly appreciate the support and wealth of information you all are providing. Thanks!