acceptance,  advocacy,  awareness,  Colorectal Surgery,  coping with flares,  Crohn's,  Fistulizing Disease,  living with IBD,  Mindfulness,  Ostomy,  patient rights,  Pelvic pain,  stigma,  Ulcerative Colitis

Real Talk About Fistulae

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, “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~



**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.**

Tina is a health advocate for patients living with chronic illnesses and disabilities. Via her writing, social media and public speaking engagements, she spearheads public health causes, including those creating awareness for inflammatory bowel disease (Crohn's & Colitis), life-saving ostomy surgery and initiatives supporting global women's and minorities' health. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance. She owns her chronic illnesses and disabilities and her goal is for you to as well!


    • Karen Conlon

      Tina, this is such a brave, honest and much-needed look at the multi-level impact of complex IBD. You are really such an inspiration- thank you for your continued work to advocate and educate.

    • Terri

      Thank you so much for sharing. I’m sure it’s a relief to many to knowvwe aren’t alone. We can still be smart, beautiful, loving women and don’t have to live in shame. I was diagnosed with Crohns in 2015 after my oldest son died. Last year I was diagnosed with a recto vaginal fistula and honestly have just bathed excessively and ignored it. The operation isn’t available in Erie Pa where I live, I’ll eventually go to Pittsburgh or Cleveland now that I’m emotionally ready to handle it. You’ll be in my thoughts sweet, beautiful woman. Again thank you for sharing your story. Crohns is a MF *^~!* but we’re stronger. If anyone has any experience with a great colorectal surgeon specialist in Pittsburgh or Cleveland I’d love to know! Thank you. Terri

      • Larry Richards

        Terri, I would consider David Dietz who works out of University Hospitals Cleveland. I have seen him in the office only once back probably 15 years ago when he was with Cleveland Clinic and spent a number of years in training with my surgeon there Victor Fazio. Victor Fazio was the World Wide go to in early years of the late 70’s, 80’s and 90’s. He had performed about a dozen surgeries on me in those days. Going forward with my complex case and only 8 feet of bowel remaining he would be my choice. He specializes in the complex re-operative cases that others refer out. Best of luck in your search and getting your health in a better place.

      • Lucia Fischer

        Terri- I recommend Dr. Stephen Holubar at the Cleveland Clinic main campus. He is truly amazing and treats you with understanding and care. I have known about my Crohn’s Disease for 25 years, yet he explained things to me that finally made sense. He also always gave me every scenario and option so that i would fully understand everything that was happening. I can’t say enough about the knowledge and compassion of this doctor. I trust my life to him. He saved it four times last year with two of the surgeries being emergency.

  • Steph

    Thank you Tina, for your honesty and courage. I’ve lived with Crohn’s since 2000, I had no idea, each persons’ disease is so different. Your story has moved me, thank you for sharing part of your journey with us all. I will put you in my prayers and send strength and healing thoughts your way:) Stay strong, you’ve got this.

  • Bernice

    Thanks for sharing this info. I have just been operated for fistula and clueless as to what’s next. Good luck with your 7th 1…. hope it is a false alarm

  • Vivian Pifer

    I am so very sorry you have to go through this. I currently have rectovaginal fistula that opened up last year. I have had one in the past on the opposite side and had surgery that worked for awhile, but it came back. It is so embarrassing and disgusting. I hate the fact that I pass gas through the wrong hole and can’t even control it. When I have a loose bowel movement it drains out of my vagina and I’m just horrified and of course worry about infection. It makes me feel like a gross human being, and people have no idea how dehumanizing Crohn’s disease can be. I wish you healing and happiness.

  • Cetta

    Thank you so much for writing about it. When I had my first fistula, I had no idea what was happening and it’s not a subject we like to discuss.

    Keep writing. We need your voice.

  • Michele

    Wow. Thank you for writing this. As a problem that most people cannot even fathom, it can be a lonely affliction to bear. I’ve lived with one for almost ten years now. I’ve been on every medication available and had it reopen after surgery. My disease played a large role in the ending of my marriage and makes parenting two young boys complicated in ways few people understand. I’m happy to have found your blog. Thank you thank you thank you.

  • Crystal Davis

    Know that you are not fighting this demon alone. Diagnosed with severe Crohn’s in 1998, I developed a rectal-vaginal fistula after my C-Section. I literally had diarrhea coming out of my vagina. Then in 2004, I had a perforation in my intestines and almost died from sepsis. I had a resectioning. Then in 2007 I developed fistulas on the outside of my vagina. The pain was horrible but the shame was worse. I finally had the sigmoid ostomy in 2007. Then in 2012, I had a fistula develop above my stoma. So they had to open the wound so it could leak out. Very painful. And even though my rectum was closed off, I started getting the rectal vaginal fistulas again. In 2013, I made the hard choice to have my total colon and rectum removed. All I have left is a little bit of small intestines. Any time I feel like giving up, I run into someone like you, who is struggling just as hard as me. We are Warriors. Blessings to you and your continued effort to win against this monster!

  • Larry Richards

    Tina, Thank you for addressing the deep darkness that many of us are enduring or have in the past. Male and Female are affected and I can only imagine what a female endures. It hit me heavy in and around the male anatomy. How it plays so heavy on our mind can be as bad as the physical symptoms. We are in what seems to be a constant getting a handle on what is going , that can eventually kill etc. We never get to a real decent status yet are very thankful if we are out of the woods for a bit. There is no fix and no cure. It is just endure and try anything and everything. I think many of us would go to quite extreme lengths for some kind of potential patch. Thank you all and stay strong and keep fighting. Warriors for certain each and every one!!!

  • Karen

    I’ve had crohns for over 25 years and developed 2 fistulas that I know of and one is rectovaginal.
    Lately I’ve been passing more gas through it I can’t hold it in anymore it just comes out when I’m standing up and it’s so awful and embarrassing. We went to the movies tonight and when air comes out of it and I try to keep holding it in when I stand up it flies out and sounds nasty and smells. I can’t stand it anymore. I’ve become isolated from it- it really is. A Lonely life having this dis ease.

  • Anna

    Hi Tina, Propably the best piece of writing that identified my chaotic thoughts exactly. Thank you. I hope the nodule is nothing, but if it is I am sure you can handle it. I am finding that the lack of ‘popularity’ of fistulas does lead to practical problems for us. My way of dealing with it is ignore and do my own thing anyway (at least at work), though I do struggle at home. After donating samples and acting as a test for the medical community and in fact changing my profession to match it, I feel burned out emotionally sometimes. Keep up the advocating!

  • DCCrohns

    As someone who has struggled with fistulizing Crohn’s for almost 20 years, thank you for sharing your story and advocating. While I am very open about my disease and the multiple medicines, surgeries and clinical trials I have pursued, we often push down the frustration and more that the disease brings. All I know is that it makes us that much stronger and formidable opponents for our disease, the board room and beyond.

  • Jo

    Thank you so much for sharing, Tina. As mother to a 10 year old girl diagnosed with Crohn’s at 2.5 years, I try to find out as much as I can about things she might encounter in the future so I am better placed to support her. Your honesty and bravery is commendable. And some of the people sharing their experiences on this post are incredible too. It is essential to share IBD stories to educate the general public about the awful effects of this disease and to realise what can be going on inside someone who ‘doesn’t look sick’. Stay strong!

  • Em

    Thank you for sharing. I pray you are well. Keep fighting, and know that it’s okay to have a day, now and then, where you just have a pity party – now and then. 🙂 Helps the next day’s fight sometimes.

    My permanent ostomy (3 years old now) allowed my fistulas to heal, and allowed me to be so much healthier. Though, we have been trying to determine the source of embarrassing drainage almost since then. GI’s say it’s gynecological. Gynecologist say it must be a fistula to the uterus. No answers isn’t fun, but still better than I used to be. 🙂

    Hoping you’re all well today!

  • Kathy Golic

    Thank you for the gift of your sharing your intimate struggles and how you manage. I am a Pelvic Floor PT, just learning now as much as i can about fistula, in preparation for an upcoming trip to teach Kenyan PTs a Pelvic Floor Education course, and found this post. Wow, you all are courageous and inspiring. I will keep you all in my hearts and prayers as i travel to help the women on another continent with their struggles as well. Blessings.