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 Crohnâ€™s, fistulas can form in many places:
- between the vagina and rectum
- between the intestine and bladder
- between the anus and skin
Depending on the location, symptoms vary â€” 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, youâ€™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.
Find support online
There are community groups for everything these days, and that includes fistula recovery.
These groups can help you feel less alone, and itâ€™s also great to get advice from those who are a little further on in their recovery journey to know what to expect.
Keep an emergency supply kit
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 youâ€™re dealing with lots of drainage, soft organic panty liners can also help.
Embrace sitz baths
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 donâ€™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.
Be on the lookout for signs of infection
With fistulas, thereâ€™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 thatâ€™s needed.
Keep an eye out for any hot, burning pain or continual green pus.
Ask about safe sex
Sex might be the last thing on your mind at first, but after a few weeks, itâ€™s usually possible to resume intercourse if youâ€™d like to.
You donâ€™t necessarily need to wait for the wound to completely heal, and sex with a seton is perfectly possible, too.
Itâ€™s worth checking with your medical team. Theyâ€™ll be able to advise you when itâ€™s safe to do so.
Donâ€™t panic if you notice some irritation
For months after surgery, I would panic every time I felt slight irritation at my wound site.
Irritation is actually really normal and itâ€™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.
Know your options if surgery isnâ€™t successful
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 isnâ€™t successful for you at first. Some find it manageable to live with their fistula long term, and itâ€™s possible to keep a seton for many years.
There are also lots of different surgical options if a fistulotomy isnâ€™t successful on the first try. Talk with your doctor about your options.
Ease into exercise gently
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.
Take time for your mental health
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 â€” 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 wasnâ€™t my fault.
Your medical team will have seen it all before â€” and thereâ€™s really nothing to be embarrassed about.
You may feel as if youâ€™re the only one going through this problem, but I can guarantee that youâ€™re not.
The bottom line
I hope these tips have shown you that while fistula surgery may seem daunting, the recovery process doesnâ€™t have to be.
For many, recovery is straightforward, and youâ€™ll hopefully be back to living life to the fullest before you know it!
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