I developed a fistula because of my Crohn’s disease. Then I took action.
If it weren’t already difficult enough living with inflammatory bowel disease (IBD), complications from the disease can make it even more, well, complicated. For example, 1 in 3 people with Crohn’s disease will develop a fistula at some point. However, fistulas seem to be much less common in people with ulcerative colitis.
A fistula — the medical term for a tract of connective tissue that forms between two body parts, usually in response to an infection or inflammation — can occur in a variety of locations. People with Crohn’s may develop a perianal or anal fistula, where there’s an abnormal connection between the anal gland and the skin, or a rectovaginal fistula, where there’s an abnormal tract between the rectum and the vagina.
In Crohn’s disease, fistulas form when inflammation from the gut causes small ulcers to form in the wall of the bowel. These can expand and form a tunnel, or fistula. Fistulas can also form as the result of an abscess — a pus-filled infection, caused when bacteria or stool become trapped in the gland due to inflammation, constipation, or other factors caused by Crohn’s. Once an abscess develops, it usually needs to be surgically drained.
I had my first ever abscess 12 years ago — before I was even diagnosed with Crohn’s disease. I was told that the searing, agonizing pain radiating from my bottom was an abscess that needed to be operated on the next day.
As I went into surgery, there were murmurings of everything from “Maybe you have diabetes” (another common cause of abscesses) to “It’s just bad luck.” But it never crossed my mind that this was actually a manifestation of a still-undiagnosed gastrointestinal disease.
While I was under anesthesia, my doctors drained the abscess to get rid of the infection, and the wound was dressed and left to heal. The procedure itself was relatively quick, and a few weeks later I was back at work and thought no more of it.
Until a few months later, when it happened all over again.
That’s because the fistula channel sometimes can remain even after the abscess has been drained, especially if the side of the channel nearest the anal gland hasn’t fully healed and may still be infected. In fact, this occurs in about 30 to 50% of people with abscesses. If pus continues to collect in the fistula, a new abscess can form. This cycle can repeat until the fistula itself is repaired.
Unfortunately, nobody told me this. I was told I had simply developed another abscess (cue more “bad luck!” comments!) and I would need surgery again.
Although I never felt as if this wound fully healed, I didn’t seem to develop any more abscesses for a few more years. It wasn’t until 2013, when I was finally diagnosed with Crohn’s disease, that this cycle of recurring abscesses made much more sense. Then, after a routine colonoscopy in 2015, I ended up with another abscess and the cycle began anew. This time, I was finally told I likely had a fistula and would need a fistulotomy.
A fistulotomy is a surgery to cut open the length of your fistula so it can heal as a flat scar. In some cases, a seton (a piece of surgical thread or a flexible tube) is inserted to keep the wound open. It’s usually done as an outpatient operation, but it does require some aftercare. In the case of a perianal fistula, the wound needs to be packed inside with a dressing (in the small hole that’s left behind) to allow it to heal properly from the inside. If it heals over too quickly, another abscess can occur underneath, so you may need to see a nurse to have the wound dressed regularly.
I was quite overwhelmed but also excited that hopefully the cycle of recurrent abscesses would finally stop.
Some people will have time to prepare for their fistulotomy. For example, a fistula may be discovered while undergoing imaging tests such as MRIs but not present with an urgent need for repair. Some people may also be able to control the infection temporarily with antibiotics. In such instances, people may have the option to schedule time off and arrange care and support.
In my case, my fistulotomy was quickly arranged when my latest abscess in 2015 sent me to the emergency room. I was in excruciating pain and antibiotics were not helping the infection. That’s when I was told about my likely fistula, and that it needed to be dealt with the following day.
At this point, I was quite overwhelmed but also excited that, hopefully, the cycle of recurrent abscesses would finally stop. Still, there were a lot of unknowns. The surgeon explained that he couldn’t prepare me for post-op reality until he cut me open and saw how deep or extensive the tract was. That would determine whether he could even perform the fistulotomy — if the fistula passes through the sphincter muscles, surgery here could lead to incontinence — and whether I would need a seton.
As it turned out, my fistula was superficial, meaning it was quite close to the surface of my bottom. As a result, my surgery was relatively straightforward and didn’t require a seton. It was done under anesthesia, but even so, I was only in the hospital for a few hours. Other cases — where the fistula is more complex or involves different organs — may require different procedures.
For the next few weeks, I stayed off work and was visited by a home-care nurse most days. The nurse would help clean and redress my wound, and monitor the area for any signs of infection. Some days I would be in no pain at all while other days were more difficult.
The hardest part was that the dressing and fistula were in such a difficult place — right between my vagina and my anus — which made going to the toilet and keeping the dressing and the wound clean really challenging. This was even worse when I had my period! When I eventually left the house, I had to be creative in managing this. For at least a year, I carried a mini water spritzer in my handbag and used that to clean the area. I know some people use portable bidets to help with this, too.
The wound also would become really sore each time I went to the toilet (and would require redressing afterward) and any time I had to sit directly on it, like when I was driving. For that reason, I was unable to drive for about a month. Other things took much longer to return: I didn’t contemplate sex until several months later and took even longer to return to exercise, as I found that any stretching or sweating immediately made the wound feel more irritated.
I still — even seven years later — have scar tissue that can become sensitive when it gets irritated (for example, if I wipe the area a lot after repeated toilet trips). Hot weather, sweat, and stretching also still aggravate it.
However, I do feel that my surgery was a success because it stopped the cycle of abscesses and infection. I am really very grateful for the surgeon and the procedure. It was definitely one of the hardest things I’ve had to recover from but there is light at the end of the tunnel when it comes to living with a fistula.
A fistulotomy tends to be the most effective treatment but other options are available if this doesn’t work for you. Your doctor should keep working with you to find the right solution to make dealing with your fistula as pain-free as possible!
Medically reviewed on September 29, 2022
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