As I sit here today with a very heavy heart typing out this blog post, I’m not sure if the excruciatingly painful nodule I felt earlier this week is just another health scare or yet another horrifying abscess from a fistula. I hold back tears as I wonder what my next steps are and what I can do to keep spiraling anxiety in check.
Now many of you might be wondering what I’m even referring to–abscess? Fistula? What the heck are those and why am I such a mess over them? Well, get ready for some real talk about the most harrowing experience I’ve faced as a Crohn’s patient.
According to InflammatoryBowelDisease.net, “an abscess is a collection of pus.”[1] Abscesses related to Crohn’s fistulae often form when the intestines become so inflamed that the mucosal wall begins to break down to cause an infection. A fistula forms when the intestinal barrier ruptures and creates a tract into another organ or out on to the skin. Some common examples of fistulae run from the intestines to the bladder or anus, and others run from the rectum to the genitals, causing significant pain, distress, sepsis and morbidity.
So, how does having an abscess and fistula affect me? This is where things get deeply personal and become incredibly difficult to write about and share. So here goes nothing…
In my 13 years since diagnosis, I’ve had 5 rectovaginal abscesses that became full-fledged fistulizing tracts. Additionally, I developed a massive honeycomb-shaped abscess in my pelvis from which yet another fistula was headed for my tailbone. I was told that this fistula could have paralyzed me if it broke through my skin. And I needed surgery immediately…lots of it. And I needed very strong doses of medication to prevent my immune system from continuing to lay its siege on my intestines.
You see, living with a fistula, let alone 6 of them, isn’t just a humbling experience; it is a back-breaking, jaw-dropping, mind-numbing experience that ripped me apart from the inside out. The thing people often don’t realize is that fistulae violate our beings right at the seat of our womanhood, threatening our basic identity as human beings. And that, in and of itself, is paralyzing.
To think I could have one yet again isn’t just mortifying; it legitimately makes this disease a monster that feeds off my entire being from my sense of self to my self-worth and everything in between. And to rebuild myself after fistulizing disease rearing its ugly head has been one of my most daunting and arduous efforts to date.
As if all this isn’t bad enough, I’m in the midst of the new-year woes of transitioning from one insurance policy to another. Even though my surgeon wants an MRI stat, I’m still awaiting confirmation that my new insurance is in effect. And once my insurance is active, I need a prior authorization to get the MRI. As I wait through the holiday weekend to get some clarity, my anxiety ebbs and flows while I hope and pray that I don’t end up in the ER.
So, why am I telling you all such a deeply personal story today? Not to martyr myself and certainly not to aggrandize my experience with this disease. I write this blog post to educate the masses on an immensely stigmatized topic that goes unheard and unrepresented. Because it isn’t sexy or attractive to have a fistula or abscess. Because if having a “bathroom disease” isn’t hard enough, living with a draining fistula is that much more shameful and dehumanizing.
It doesn’t matter what kind of fistula one has (obstetric, Crohn’s or otherwise). The reality is that fistulae ruin lives and they wreak havoc on our physical AND mental health. And they need to be addressed for purposes of education and improvement in quality of life and emotional health. Even though fistulae sometimes close with medication or can be surgically repaired, oftentimes, they reopen and remain a chronic source of infection. And in their wake, they leave behind a trauma so real and so deep that it feels impossible to heal ourselves and move forward.
According to the Worldwide Fistula Fund, approximately 1 million women around the world live with some type of fistula.[2] Take that number in for just a second. 1 million. And the fact of the matter is discussion around fistulae is still extremely limited and stigmatized across all cultures and societies. Even while navigating the medical world as a Crohn’s patient, the subject feels taboo and off limits. By way of example, many of us often struggle to talk about menstruation even though it is a natural bodily process. So can you imagine the shame involved in discussing the unnatural process of a body that is constantly attacking and betraying us?
But I challenge this notion. I challenge the stigmas around fistulae. Why does this have to be a shunned topic? Why can’t we talk about fistulae to help others cope and not feel ostracized? In my mind, discussion can only liberate those suffering in silence for the sake of mental health.
As I sit here pondering all these questions, I try my level hardest not to panic about this nodule, which may or may not be an abscess. I sit here wondering if this will need surgery and if my chemotherapy and immunosuppression is cutting it to keep the abscesses/fistulae at bay. I sit here waiting for what feels like an eternity, bringing my mind back to all the beauty that life has to offer in spite of living for years with raging disease. And I keep reminding myself that I dealt with 6 of these before and survived, so if this is my 7th, I will not go down without a fight.
Crohn’s might ravage my body but it can’t take away my spirit. It can’t take away my will to survive and thrive in the face of the most violating of health circumstances. So, I sit here today practicing what I preach: to own my Crohn’s, own my fistulae, and own whatever that MRI may bring because I will be ready to embrace it and fight like hell the way I always have.
~Love, light & peace always~
[1] https://inflammatoryboweldisease.net/symptoms/complications/abscess/
[2] https://worldwidefistulafund.org/what-is-fistula/fistula-stats.aspx
**As harrowing of a topic as I know this is, it is an important one. I would love to hear any and all feedback and comments you may have. Thank you for your readership as always.**
