Let's Talk About Living With a Seton
Not long ago, I shared my top tips for living with a fistula. This is still an area of IBD that is rarely written about.
I wanted to shine the spotlight on a particular aspect of living with a fistula. And that's managing life with a seton drain.
Not everyone with fistulas ends up with a seton. It's usually dependent on where your fistula passes through.
I was lucky enough not to need one, as my fistula was superficial. Yet, I'm aware it's incredibly common. So I wanted to get some tips from those in the know to share with you. I chatted with some fellow fistula patients to bring you all of their tips and suggestions.
IBD patient experiences are different
One mentioned after a few weeks they had adapted, while others shared it took much longer. As one patient commented: "We have our journeys, which are not the same and mine has been very positive far, unlike some of what I have read and what some people go through...try to find positive experiences as much as possible!"
What are setons made from?
One size does not fit all. Different materials can be used for seton drains; such as silk, rubber, and polyester. Do your research and see which ones are offered and which ones might be the best fit.
For example, one patient explained that silk was the most comfortable. As stated, "I had a silk one- this one I hardly felt at all and was almost invisible that I forgot it was there and didn’t even know when it fell out." Don't be afraid to ask your doctor which one would work for you.
Living with a seton drain
Be prepared for drainage! You'll need to adapt your life with a seton to ensure you're prepared for the drainage that comes with keeping the wound open to heal.
One lady with a seton explained: "The best piece of advice I had is to have some gauze between the cheeks – much more comfortable. Oh and get a bidet! It makes cleaning after a bowel movement way less painful."
Others suggest wearing a panty liner each day instead and keeping plenty of supplies close to hand. Another seton patient explained:" I have to carry a portable bidet and special bag of gauze, pantyliners, and petroleum jelly everywhere I go in case I need to use the bathroom."
It sounds like a lot of organization, but being prepared can help you get on with your life.
Support groups for life with fistulas or setons
Support groups are vital to talk about adapting to life with fistulas and setons. One patient explained how they were beneficial: "The drainage can make you paranoid and the whole process can make you feel very alone. Groups can be a lifeline in providing you that space to learn from each other and enable you to ask questions you can’t ask medical practitioners."
I have mentioned them here before but I am a member myself of the abscess/fistula support for women Facebook group.
They can be used long-term
Setons don't have to just be a short-term thing. For many, it's a long-term, practical way of managing a fistula. "I've had mine since November 2014....it's not painful anymore for me but it has continually drained for nearly 4 years and I have to wear a pantyliner to collect drainage, gauze near the setons to catch the output," explained one IBD patient. Another commented:"I've had mine about 3 years. Most of the time I don't think about it!"
Many doctors advise a short resting period where patients avoid things like sex and exercise. But other than that, many people with seton are able to continue with their daily lives.
While it is important to note that a seton doesn't have to be a barrier to these things, we should also acknowledge that this varies between patients. I know this as someone who took years to get back into exercise after a fistula!
For many, the psychological impact of a seton is just as severe as the physical symptoms. Patients should aim to go at their own pace.
Do you have a diagnosis story to share?