Who You Calling a Seton?

Image

One of the lamest parts about having a chronic fistula is having the dreaded seton band hanging there like a rubber noose of doom. Often doctors use the seton band to aid in healing and draining of the fistula. Here is the best (and least gross) image I could find:

Image

The worst part of this seemingly harmless rubber band is that it hangs out of your bum (depending on where your fistula is located), and creates all sorts of irritation, pain, and hygiene issues. I have a few suggestions for how to cope with this little rubber demon. Here are a few items I recommend you purchase:

Image

First and foremost you are going to want to keep the area around the band (the part of the band that sticks out) as clean as possible. I recommend getting a simple squeeze bottle that you can keep in the bathroom, and a smaller one to take with you for longer outings. Just fill it up with warm water, and after a bowel movement or even urinating, just spray yourself down! I’ve found water works the best for getting everything super clean, though baby wipes are a lifesaver when you’re out n’ about.

Now, PAY ATTENTION TO THIS PART!!! I wasn’t given this tip until about a month of living with the seton bands. First of all, go out and get some Calmoseptine ointment. You can order some on Amazon.com (I got a great deal on a bulk purchase), or you can ask your pharmacist to order some–it’s over the counter, but they often don’t carry it in most drug stores. Calmoseptine has helped me so much throughout the entire fistula journey, but was most helpful during the awful seton days. Here is what I did:

1. Put a generous amount of Calmoseptine (in a pinch, Butt Paste in the baby aisle is basically the same thing without the menthol cooling effect) on the area surrounding the protruding band.

2. Take a small layer of gauze (not too thick or it will cause its own chaffing), and fold it around the band that is sticking out.

3. If you can, try to tuck the band back a bit so that it doesn’t move as much when you walk.

I had days where I couldn’t walk because the chaffing of the band caused so much irritation it was too painful to move my lower half. The Calmoseptine combined with the gauze definitely helped a lot. I also recommend you double your sitz bath usage. You can add some lavender essential oil to the warm water to calm the skin, or some witch hazel to ease itching and inflammation (use caution as certain oils and ointments can cause more irritation for people who have sensitivities to them).

Your time with the seton band (or bands in some cases) could be as short as a few weeks, or it could be months. I had mine in for 5 months, and they were probably some of my worst days. Don’t lose hope! The suggestions I’ve made helped me so much, but I didn’t learn them until a month in. If those methods don’t ease the irritation, talk to your doctor. Never be afraid to tell your doctor how much pain or discomfort you’re feeling. It took me a month to speak up, and only then did my doctor suggest Calmoseptine. Unfortunately, most doctors and surgeons do not prepare you or give you all of the tips you need. You have to ask them. Be pushy. Don’t forget that YOU are in charge of your recovery and healing, and THEY work for US.

Be bold, be brave, and keep your head up!

Until next week,

Leah R. Chatterjee

fistulasurvival@gmail.com

14 thoughts on “Who You Calling a Seton?

  1. Pingback: Advancement Flap Surgery | Fistula Survival Guide

  2. I appreciate this site too. I feel all the feelings you feel and no one can relate – no one- unless you have had one. In fact, I know some people are saying “oh, how bad can it be”… well I just pray they really never need to know. I had surgery last month and had 4, the first was was small and tightened at surgery and removed already-three more to go. Every single day is painful and not all at the same level. I have to choose what I do from day to day because any activity-even going out to dinner- causes pain. I hate this. I am not honest with people, there is no way I want people to know. Only those real close to me know.

    I do not have any conditions to warrant these, they just popped up from no where (I was having some internal hemorrhoid banding done if that is what did it). I have no Chron’s, no other cause. I am worried I will keep getting them. I have the cutting Setons and gosh they hurt. And you are right, they do not prepare you for any of it-surgery, tightenings, living with the bands, etc. They are not even realistic for the time off…I had mine tightened and they said you should be able to go to work the next day and there was no way! If I had known that I would have had them done on a Friday (the rest were moved to Fridays). I think they should just tell it to you straight so that you can make plans.

    Thanks for letting me write.

  3. I am preparing for a band procedure, and I so appreciate all of this wealth of information.

    Also, I appreciate that you are being honest about things: “hey, it is going to suck, but let’s get prepared!”

  4. Holy cow I’m not alone! I stumbled upon your sitz bath post while…… using my sitz bath! I’ve been dealing with a fistula for a year now. Even after mesh patches and a fistulabotomy, still not fixed, but with the guidance and skilled hands of a new surgeon I feel I’m finally on the right path. Keep fighting the good fight! Great post!

  5. Very glad to find this site. I had my abcess surgery in August ’16 & was diagnosed with fistula in Jan ’17. In early March I had the seton placed and my original surgical wound opened up and scraped out. Once I recover from that procedure my doc will attempt to solve it with the flap surgery.
    This condition is very painful and depressing and like you mentioned in a previous post..the worst weeks are the ones when you have a fistula AND your period. Sometimes I describe it as living inside a nightmare that is my body.
    I think I trust my surgeon, he tries to take time and answer my questions and seems very thorough. But the hardest part is not knowing when or if things will get better. My abcess surgery left a stab wound 3 inches wide and 4 deep. My husband and daughter were packing it 2 -3 x a day for months after the first surgery. Once the second surgery took place everything was opened back up again and the packing has started all over. Keeping the seton clean and comfortable is difficult when it shares the same space as an open wound packed with gauze which is supposed to stay dry.
    I ask for practical advice at every doctor visit but I never leave with helpful information. My doctors also are very reluctant to prescribe painkillers. I was given one bottle post op but am now expected to function on advil alone.
    I normally do not complain much but decided to be honest about my experience to people who ask. Fistulas are miserable. I try to make every day with my family a sweet and beautiful one despite the discomfort though.
    I am thankful that this is not a life threatening condition even if it is life-altering.

    • Hi Moira, thank you so much for sharing your story, and for taking the time to write such a lovely comment! I appreciate it so much!
      If you’re looking for extra support from people going through it, as well as some “fistula veterans” like myself, please join our group on Facebook. One of the admins will message you, so check your filtered messages if you do join! I’m taking a little break as I’m dealing with a separate health issue, but the moderators and members there are wonderful, and it really helps to break that feeling of isolation in this health battle. Here’s the link if you’re interested: https://www.facebook.com/groups/fistulasupport/
      Thanks again for reading and sharing! Sending you good vibes! My flap worked in the end, finally, so keep hope! ❤

      • Thank you, I read that you have also been suffering from endometriosis. I suffer from that as well and know how difficult it is. Best luck on your journey.

      • Yes, adenomyosis and endometriosis. Getting surgery soon to hopefully solve that. I’m so sorry you’re suffering with that too! It’s so painful and awful! I sometimes wonder if the inflammation from it led to the fistula in the first place, since they never really figured out why I got one. Best of luck to you too! Will be thinking of you!

      • I keep asking myself…and the doctors the same question.
        Best of luck🌻

Do Tell!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s