Research has shown that fistulas affect up to 50 percent of us living with IBD within 20 years of diagnosis.
Defined as an abnormal connection between two parts of the body, in people with Crohn’s, fistulas can form in many places:
Depending on the location, symptoms vary — and while some minor fistulas can be treated with antibiotics, many require surgical intervention. This typically involves a fistulotomy, which is a procedure that opens up the fistula to allow it to heal properly.
If a fistula is larger, a seton (a piece of surgical thread) may also be used to help drainage. This is usually straightforward, but the recovery process can take much longer.
After experiencing 4 abscesses, 1 anal fistula, and 3 surgeries myself, here are my top tips for managing life after your fistula surgery.
Fistula surgery may be a minor procedure, but patience is definitely required for the recovery process. You might find that your wound drains for weeks after surgery, as it will be left open to aid healing.
Because of this, you’ll usually need to be visited by a nurse who will help dress and clean the wound until it heals.
The process may seem slow, but most people can return to work and most daily activities after a week or two.
There are community groups for everything these days, and that includes fistula recovery.
I joined the Facebook group, Abscess/Fistula Support for Women and found it invaluable for picking up tips on everything from managing pain to cleaning my wound.
These groups can help you feel less alone, and it’s also great to get advice from those who are a little further on in their recovery journey to know what to expect.
Find a community that cares
There’s no reason to go through an IBD diagnosis or long-term journey alone. With the free IBD Healthline app, you can join a group and participate in live discussions, get matched with community members for a chance to make new friends, and stay up to date on the latest IBD news and research.
Once you feel confident enough to venture out and about, pack a supply kit to deal with any fistula-related emergencies.
For me, getting back to normal was important so I was able to return to work after a few weeks and take short car journeys.
My emergency pack helped my confidence and included:
- unscented water wipes
- a water spray bottle to clean my wound
- a spare pair of underwear
- extra medical gauze, in case my dressing needed to be reapplied
If you’re dealing with lots of drainage, soft organic panty liners can also help.
A sitz bath is a shallow bath in warm or hot water that cleanses the perineum. These can help ease discomfort, and in the early stages, you might want to take several a day or after each bowel movement.
If you don’t have a bath or are traveling, you can use a sitz bath seat. This cleverly fits over your toilet seat so you simply add the water and sit in it.
Some people prefer to add Epsom salt to their sitz bath, too.
After bathing, gently pat the area dry rather than rubbing it, which can aggravate the skin. Some people prefer to use a hairdryer on a low setting to gently dry the area without irritation.
With fistulas, there’s a risk of infection by the wound healing over too quickly and causing an abscess.
The sooner you spot these signs, the easier they can be treated. Sometimes, a dose of antibiotics is all that’s needed.
Keep an eye out for any hot, burning pain or continual green pus.
Sex might be the last thing on your mind at first, but after a few weeks, it’s usually possible to resume intercourse if you’d like to.
You don’t necessarily need to wait for the wound to completely heal, and sex with a seton is perfectly possible, too.
It’s worth checking with your medical team. They’ll be able to advise you when it’s safe to do so.
For months after surgery, I would panic every time I felt slight irritation at my wound site.
Irritation is actually really normal and it’s something I still occasionally have years later. Scar tissue can form from a fistulotomy, and this can sometimes feel itchy or a little sore.
If you have lots of scar tissue, your doctor might show you some gentle massage exercises to help break the skin down.
The good news is that lots of fistulas are completely resolved via surgery. However, depending on the location, they can reoccur.
There are plenty of options if surgery isn’t successful for you at first. Some find it manageable to live with their fistula long term, and it’s possible to keep a seton for many years.
There are also lots of different surgical options if a fistulotomy isn’t successful on the first try. Talk with your doctor about your options.
Exercise is important for our overall well-being, but it could be worth gently easing back into your exercise routine.
Depending on the location of your fistula, it may get irritated by lots of movement and sweat. As mine was in the perianal area, I found cardiovascular exercise would leave the area sore at first.
Start with low impact exercise and gradually build up to longer workouts. I also found using the gym a better option than exercising outside, as I could immediately use the shower facilities afterward to clean the area.
If I could offer one piece of advice, it would be this.
My years of dealing with abscesses and a fistula really took a toll on my mental health. I felt as if my life was on hold and even believed it was my own fault for not keeping the area clean enough — even though I was showering multiple times a day.
I also struggled with embarrassment around showing my wound to different doctors when getting it dressed.
Over time, I became more confident and realized it wasn’t my fault.
Your medical team will have seen it all before — and there’s really nothing to be embarrassed about.
You may feel as if you’re the only one going through this problem, but I can guarantee that you’re not.
The bottom line
I hope these tips have shown you that while fistula surgery may seem daunting, the recovery process doesn’t have to be.
For many, recovery is straightforward, and you’ll hopefully be back to living life to the fullest before you know it!
Jenna Farmer is a UK-based freelance journalist who specializes in writing about her journey with Crohn’s disease. She’s passionate about raising awareness of living a full life with IBD. Visit her blog, A Balanced Belly, or find her on Instagram.