I want to rip out this seton..i would rather have an abscess w/I&D ...

I can't tolertate this seton..don't understand why i have throbbing pain..my doc said to take Cipro and Flagyl and call back in 5-7 days and then maybe i have more fluid in the rectum or some hemorroid thombrosis and its back to surgery for me..i want to rip it out..i can't function..i am having trouble doing normal things like taking care of my kids cause i am stuck on the toilet..i can barely hold my bowels these days..not sure why..i have constant pain...vicodin makes me depressed and suicidal..i feel like a burden to my family...i would rather have an abscess....and now i feel like i have the flu with flagyl it makes me achy and i feel like throwing up all the time..there has to be someone out there..who couldn't tolerate a seton..please share your story..because i feel alone right now...everyone seems to be okay with it..but me its been 10 days and the pain is worse everyday...

also..can i rip this out myself and does it need to be ripped out via the anus or the incision?

10 days is enough to heal to the point it is not extruciating pain. It just might be an abscess that is trying to come to a head. Cant tell without seeing, has the nurse or doctor looked at it after the surgery? It is ok to sit in the tub to get the discharge out. Other than the seton does it feel like you have a knot like a spot filled with fluid? You want to take the antitbiotics to prevent infection. This is all to see if the rectum can be saved. But after a few days of baths you should have felt a little better so go in and see the doctor.

Thank you for your replys...i appreciate it..this is a very dark time for me..i have felt like i am worthless and what good am I...i have felt like i am different from everyone else and even ashamed of what is wrong with me..i cry just about everyday...and it seems that at home their is a lack of understanding...i am calling the doctor tomorrow..i am nervous to remove it myself even though the surgeon i talked to today said it is loose and not sutured to the rectum..but i remember my surgeon saying it was...and if he did that..and thats wrong..maybe thats the problem..eight years my fistula drained on its own..sure i had it opened twice surgically..and on the office many times..i never once was given any medication that should help other than Imuran...which i took for many years..i stopped taking it because i got infections for ..months...and lymph node infections and i had a cancer scare...and my hair really started to fall out..and i took Flagyl but stopped for the problems it caused me..such as horrible feeling of painful joints and diarrhea....diarrhea...like 7 times a day...so all those years i took only Pentasa..or Asacol...occasionally Prednisone...and i think because i left the inflammation..there..it stayed open..because it couldn't heal...my Crohns story is different then others...my Crohns is my peri-rectal disease- my intestines being my colon and the illeum is my colitis..i had the "spastic colon" problem...but this suture is too much for me..its ruining my life..i am in too much pain to go anywhere...i don't work anymore..i never finished school...i am a stay at home mom of two..and being stuck in the bathroom when the baby is wet and crying for food...for hours...is something that has happened lately..i don't know why i can't control my bowels...it doesn't make sense...to me..but i understand the whole antibiotic thing...i just wish i could go back to the way things were..can't i just opt of incision and drainage when i have an abscess each time? Because my seton is not a string..its not small..its not "only uncomfortable" like my surgeon said..in fact...he told me he wouldn't have to cut me..and then he cut me five inches starting from the rectum going up...nothing is as i thought it would be...on top of that...i can't live a normal relationship with my husband..they told me this type of seton stays in for only 6 weeks..but i am up to almost two and i can barely handle it..every time i move..i feel it...and mine is loose so it moves alot and i have pain..

I don't have a choice..there is no one to help me clean, take care of the kids, do the laundry, cook, balance the checkbook, take out the trash,check the mail, run the errands, go grocery shopping, pack the lunches, and so on...my husband is at work..and i do all of these things...its my job..because i am the one who is at home...i want to have fun with my six year old..i want to be able to leave the house..she didn't ask for this...i am glad to hear that some out there couldn't deal...i can't even put guaze..that is too painful...this is crazy...

Okay..i now i am going on but i have to vent..guess what..my initial complaint to my GI was it was draining to much..wiping the fistula was like wiping my bum..same thing almost..so i told my GI its draining too much..he said take Cipro it helps these things to "heal up a bit" oh okay..i took it ..it closed and i got an abscess...now..here i am today

I am worrying about you Frogeleita. Really make sure your doctor sees and understands exactly where it hurts. Bring a mirror and show him -- don't leave until he really examines it and understands. But don't you remove the seton yourself!! Please don't do that. Clearly an abscess caused your old fistula, and the fistula plugged and abscessed again. So while you say it was working for you, it didn't last. It is the infection you are battling right now, and the incision and seton are just tools to get rid it. Focus on getting to the bottom of the infection and pain, and please believe that it will get better!!

I rarely had much of a fever at all, even with huge cellulitis infection. But wow did it hurt when it got really bad. It may be that they need to admit you to the hospital for a couple days of IV antibiotics. Whatever it takes to get you well!

I strongly recommend you ask a family member or friend to stay with you. This is so very hard to do alone, and honestly, it sounds like you need the emotional support right now. Please lean on others now. Someday they will need you too!

Please take care of youself.

thank you guys so much..you are keeping me sane..i promise i won't remove it myself..i am too scared to do it..but i need to be firm when i go in on Wed...its been a week or so now...and i haven't heard if i am "approved" by my insurance company to take Remicade...and honestly i am a little afraid to even take it..its a "big" medicine..if you know what i mean...so that Humira and 6mp are the only ones i haven't taken...its a weird pain..its like on one side and its starts with now with going to the bathroom..but i have colitis..so i go like 4 or 5 times..thats the norm for me..and the pain just continues..now i can only take ibuprofen because i couldn't urinate on Percoset...Vicodin..made me depressed weepy and i felt suicidal..i felt like taking all the sleeping meds in the house..but i know..i don't want to die...i love my husband and my kids...and i talked to my gramma about how i feel...so she listened to me...people around here know i am falling apart...see these pain meds are kicking up my depression..i have been diagnosed in the past as being bi-polar..but didn't quite agree with it so i don't take meds..though i tried some...they made me feel more suicidal and hyper and depressed...at the same time..i am not going to spend my life..all drugged up..when i can pin point things in my life..that make me upset..its like..it makes sense right..i know exactly why i am sad..or crying..

This colon rectal surgeon keeps telling me..oh maybe he can get rid of it..but the MRI i had showed that it was quite far into the muscle...prior..and many people told me..surgery is not an option...so why does he think it is? My mom asked me..what is the point of this thing and i said to drain it..but its making the inflammation worse! Instead of better...for some reason...i just can't deal with this..be it...anxiety..i am not sure...i just can't function with this thing..i just don't want it..its just not it for me...my seton is large..its a tube...the only part that is the size of a rubber band..is the part that is in the fistula..so i am not sure which one i have but it feels and looks more like the size of a straw...and it goes in the anus and around comes around the fistula and loops around its its tied..its really strange..and the sutures are really tight so its hard to clean..so its sticking out and poking me in the incision and its poking me towards the anus..really uncomfortable..and  i just don't know..but i appreciate any replys i am getting..i am thankful for nice people online who listen to me vent and share ideas...you are a blessing! thanks again

When I had a contraption like that I found that the easiest thing to do after a series of bowel movements was to squat (the hardest part for me) so that I could just wash my butt under the tub faucet. I'd just drop everything from my waist down and run the water gently, warm, and clean the area. I also had trouble with the stupid tube-thingy blocking the drainage, so sometimes I had to do this weird leg lifting thing while holding the tube... but when I did tons of drainage would run out (gross, sorry) but I would feel so much better. I hope you're not in extra pain because it's blocked off like that at times, but it might be worth a wiggle if you're already scrutinizing the area later.

Butt washes and hot baths... and sleeping on my belly. That's what got me through.

Sending more good thoughts your way.

Thats what i am waiting for...my approval on Remicade..i know the pain that i have is from inflammation..i am sure of it..this is the same pain i feel when i have had horrible diarrhea..i feel like i am bothering my doctor..i have to call so much to get anything done...he promised the end of the day to send the paperwork to get me started on Remicade and he hasn't done it..he has sent nothing...and its been over a week..so now i am annoyed..i have an app tomorrow..but i feel like calling them today..i know i need to be strong..and put my foot down..and not persuade me to do what they want me to do.....phoebe what stitches do you mean? I just have this tube..do they have to stitch me after?
ps i think this inflammation is so bad because i have never taken not one med that helped the inflammation in that area..so its like almost 9 years of that area being inflammed..its really in need of medications!

Hi Fallcolors..thanks for replying..its so confusing itsn't it? All these drains, setons, who knows who has what..all i know is mine is red..and it has black sutures holding it in place and it goes around and connects...with sharp sutures too that poke me..and annoy me..like getting in and out of a car..because life must go on even with a seton..i can't stop..because i have an abscess..i won't feel bad about calling him..you are right...we pay like hundreds of dollars a month plus copays...just to have insurance..plus gas, parking, more copays for medicine, plus taking the time off from work to go to the doctor...its certainly not free....wondering whether or not i have some sutures somewhere are the exact reason i don't pull this thing out myself..because i might be brave..but i am not that brave.. inflammation is the worst..it really hurts alot...and the only way i can tolerate this seton..is with major medication..and its too bad he didn't send the info as he promised..to me..because i might have already had an app and on my way to recovery...

Hery frogerlita I know it’s not what you want to hear right now because you are waiting a few weeks for Remicade, but you are lucky it only takes that long!!! I have had to wait over three months just to apply !! Over here in Australia it is very rare and you have to apply via the pharmaceutical benefits scheme, so even though I had a deep abscess, and severe Crohn’s, I have had to wait twelve weeks and then I have to re-apply every 3 months!! It has been tough. At least you didn’t have to wait that long….. I am still waiting, three months on. And I still have a seton and a mushroom drain in my butt. I’ve been told things won’t really heal up until I have the remicade so that was hard news to take. My fistula is still getting bigger by the day even though the seton is in there.   I did have a seton initially, and it was bright red – actually I had two, but one was there to lay the area open and came out later. I still have one fire-engine red seton, but I also had to have a mushroom drain inserted because it was a deep abscess which kept on growing even after my first setons were put in and I had more and more pain following surgery. I’ve also gone about 4 years with little or no medication, so I am worried about the area too. My advice would be try not to freak out, I know it’s hard because I’ve been there (well, I’m still there) – waiting etc….. But at least it’s a matter of weeks for you and not months! Hopefully you get your answers soon….. and the connection between our nervous systems and our stomachs is very strong…. Stress will only exacerbate things…. try to just remember this is momentary and you don’t have a long time to wait. I remember crying and feeling hopeless thinking three months is soooo long! You just have to adjust…. And you will….. this will make you so much stronger, trust me.   I hope you’re having a better day today

Oh you poor thing that sound so awful!! My cavity was deep too which I think resulted in the excess sepsis which didn’t drain properly…. I remember seeing the hole for the first time and being so scared! That’s freaky – I didn’t even think of the possibility of it reaching your spine, but I guess it makes sense…. My fistula is located right smack bang in the middle near my tailbone. I had no idea when my abscess first appeared just how bad they could get, it left it for way too long, but then again I was with a terrible gastro who refused to let me see a surgeon….   I don’t have any paper work ‘in the works’ yet either….. they say its not worth applying yet because it will just get knocked back, we have to wait at least three months before applying, and then when we do apply, it will be a few weeks before my first infusion (if my application is successful). So the 12 weeks is up at the start of September, I think I still have another month of tubey life and waiting to go…..not a nice thought when my fistula hole is growing.             So Frogelita is this your second abscess? Your fist abscess sounds like hell – so big!! I also get mad when I hear about dr’s asking if you have a fever, like that is the only proof that you have sepsis….. its not!! The abscess closes infection off so of course you’re not always going to have a fever! Throughout all my abscess hell I didn’t have fevers, but for the yrs before it came to a head I did….. I think that’s what it must have been. Just because you don’t have a fever doesn’t mean there’s not left over sepsis, I had left over infection and no fever…. If it hurts and is sensitive to touch, there’s something wrong….. Unless you are just still healing. I was sore while I healed. I hope things get better for you, it’s such an awful thing to go through….  

Met with my doctor..said he did fax his recommendation..and if it hasn't..he is checking with his staff there...he is taking me back to surgery...he will put in a silk thread...hooray...much smaller..i can tolerate this so much better...also he said that he was able to shorten my fistula..which i had not understood...so in theory its smaller...amen!

thank you bluemom..you are sweet and i appreciate anyone who is willing to pray or answer my questions..this has been a nightmare...and if things don't improve..i might not be able to deal with this seton..and i am trying so hard to deal with it..