seton drain questions

hey all!

i'm having some ~issues~ with a draining seton, or at least i think i am.

i'll give a backstory to shed some light on my situation before diving in. i got really sick october of last year and spent the following months doing all sorts of scopes and tests and blood work trying to find out what it was. this past june i was admitted to the hospital with an abscess that was about four inches long and two inches wide. i wish i was joking when i say the underlying bump was the size of a small potato with the head the size of a lime. i knew something was wrong but my gi said it was hemorrhoids and fissures so i spent almost ten months suffering before just going to the er. the darn thing ruptured on its own (barely) and drained very little so the first er doctor sent me home with antibiotics and pain killers. this was a monday. at around 5 in the afternoon friday i was back at the er in absolute agony. i'm talking tears streaming, legs shaking, unable to stand, sit, walk or move. i was admitted around midnight to have it drained in the OR because of its size and the fact that my wbc was almost 20,000. it was drained saturday afternoon and a seton drain was put in.

one month later, august first to be exact, i was seen by my cr surgeon when a second abscess popped up near the first, much smaller of course. it was drained there in the office and he asked me to follow up at the end of october to discuss how to proceed with the seton and to follow up with my gi for another endoscopy. with all of this new info about the abscesses and the fistula, i was diagnosed with fistulating crohns. we're working on an approval for humira but for the time being my gi put me on cipro and flagyl because my wbc was high again.

the area from first abscess is scarring slowly and the second is still open for the most part but neither look infected. i do have a couple of concerns though and i was wondering if anyone has had similar experiences. first, some days i'm okay and feeling normal but then others it hurts to walk or sit and i'm absolutely miserable. i expected this at first but it's been two months and a month since the procedures. second is how they're draining. usually i clean the area with spray i was given after my surgery and pat it dry before securing a square of gauze with tape and calling it a day. if i put pressure on either of the areas while i clean it there will be a small amount of the pus on the gauze. when i change the dressing there's always a small amount of whatever is draining on the otherwise clean gauze. today i accidentally left my bag with my gauze and tape in my sister's car so i figured i'd just sleep without a gauze and hope for the best. after showering i checked the area just to make sure it was clean and it was OOZING pus. an hour later when i checked it again, the same thing happened. i have never had that much drain from either and i panicked. could it be that the hot shower and the lack of barrier from the gauze is letting it drain freely? if so that's probably a good thing because it should be draining, right? i'm absolutely clueless and none of my doctors provided me any insight on what i should be looking for or how to properly handle having a seton in in the first place.

at this point i'm just looking for advice or tips or any similar stories to help ease my mind.

It could be that not having the gauze got some stuff in the wound and the pus is trying to get it out. It definitely should be draining, but the draining should slowly be tapering down. The occasional pain is pretty normal, depending on if it got pulled, etc.

I'm starting Humira soon, the specialty pharmacy my doctor contacted me today finally so as soon as my insurance goes through I can schedule an appointment with them. I didn't know remicade was an option until I had already agreed to Humira but it requires hospital administration and with the travelling I do for my job I don't think it will be possible to schedule the appointments necessary so I'm praying the Humira works!!

Mine is in an awkward place that I'll refer to as limbo so the only way to cover it/catch what is draining is to tape the gauze down. I just use a small piece of nexcare extra sensitive tape on the edge furthest from the actual incision just to kind of hold it in place because I move around so much at work that it would fall out otherwise.

This forum has been my saving grace because doctor's apparently love to leave you in the dark regarding everything. I left the hospital after my surgery with a bag full of gauze pads, tape, and wound cleaner along with instructions to follow up with my PCP and the surgeon who did the procedure. No one told me a thing about the darn seton. My PCP looked at it and said 'oh i could remove it but I'll let the surgeons handle it since they placed it'. The surgeon looked at it two weeks later, said everything was good and referred me to my CRS to assess it further. I was hoping the CRS would finally give me some answers but that was apparently hoping for too much. He scheduled me an appointment for late October to see if the next step would be one of the surgical procedures or if it could simply be removed. Fingers crossed that the Humira treats the fistula and the seton can be removed without surgery.

Everything I know about seton drains, fistulas, and crohn's has been thanks to google and healingwell.

U B Tough said...
Hello and Welcome,

I'm sorry you are going through fistulas. They are evil. I've been dealing with 3 and chronic abscessing (7 I & D's) and multiple spontaneous bursts over the last 13 months. They have turned my life upside down, questioned my sanity and led to severe depression. 10 days ago I had another emergency surgery dealing with a massive abscess that took up my pelvic floor. I get the pain....screaming, crying, vomiting, fevers etc. It was brutal. They had to partially sedate me to get onto the surgical bed. They are brutal. I had setons for 8 weeks and they failed. I seem to be the worst case scenario though; so that's good news for you!!

What meds are you on? The standard for fistulaizing CD is remicade. What is the plan to remove setons and fix fistulas?

The amount of pus can vary depending on the location of the infection (high/low) and how strong the infection is. showers/sitz baths are good to continue to drain the infection. I've never heard of taping the gauze. I think the gauze (or try make up pad) should stay in place if it's in between your butt cheeks. Taping can pull the skin and cause other problems. you could also just wear a light pad. You are right to keep the area clean. Try cleaning it with tea tree oil (diluted with a dab of coconut oil as it stings) or collidial silver. Pain can also vary...a pull, tug or stretch in the wrong direction and yikes! I used to dance ballet but had to give it up. My setons went right through my levitor ani muscles which is why I had severe problems, but most people will have discomfort. Try a bath or pain killers if needed.

I'm assuming you have a CRS. Make sure you trust their skills and get a second opinion if needed.

The lack of info provided by CRS about fistulas is alarming. No one tells you anything...maybe just have a bath and place a pad....but nothing about the psychological/social toll and no details about what it means physically. I had to do some mad googling to find sites like this and people here have guided me through but it's still a learning game. I have felt completely abandoned at times. This last abscess is horseshoe shaped and when I pass gas it goes through and burns.....freaked me out at first. Any hospital pamphlet I've read makes it sound so light and no big deal when fistulas are the opposite. I didn't even have supplies ready after my 1st surgery because no one told me anything!!

As far as supplies, I have pads and wipes in every purse...just in case. You could leave a bag in your car, office desk etc.....just in case.

I know it's hard not to worry when these bizzare things are happening to your body. One day at a time. Get on the right meds for you, have a surgical plan, eat well, use as much heat as you can, have fun and know when to call your doctor if something doesn't feel right! I also squeeze my butt cheeks several times a day to try and "milk" the pus out. Oh the joys of this disease.

Good luck...

The cipro x flagyl was a ten day treatment for my high WBC but I agree, it was not fun. I was especially confused because my GI had told me two days before she sent the script in that she wasn't going to give me Flagyl because it wouldn't help my specific case of Chron's. It seemed a little weird to me. After finding out about Remicade I started doing research but since I had already agreed to Humira, I have to wait and see if it works. If not I'm going to have to give remicade a shot. I've been researching the both like crazy and there's so much info - it's a little overwhelming. Best of luck to you!

gypsyfp said...
Hi!
I'm 3 and a half weeks post my seton placement surgery.
I never put gauze on it afterwards. I just wore a pad or panty liner to catch the drainage.
There's drainage everyday, but it seems to come out of the vagina more.
The cipro flagyl you're taking could be doing something. That's a pretty nasty drug combination.
While you wait to see your doc, I would not put gauze on it anymore, just let it air out and use a liner and then see what happens.
I hope you go on Remicade soon!
Back in 2010 when I was first dealing with my fistula, my GI told me that there wasn't a lot of info or studies that show Humira helping heal fistulas and so we went with Remicade.
Within a month, I felt amazing and my fistula was closed by 2 months after my first loading dose. Unfortunately, it reopened 6 months later.
Still, I was on Remicade for 7 years and it kept me pretty stable, even allowing me to have two kids by cs. I owe so much to that drug even though it stopped being effective for me this Spring.