Couple in the twilight hugging and touching foreheads photo by Sean Stratton on Unsplash

Couple in the twilight hugging and touching foreheads photo by Sean Stratton on Unsplash

I have never been ashamed of my ostomy. I have been screaming from the rooftops that I have a stoma and love it since practically the moment I woke up post-op with it. Yet, the one thing most people do not know about me and IBD is that the worst part of my IBD journey did not involve my digestive system at all. It was not the ostomy surgery, the obstructions, the NG feeding tube, or prednisone-related weight changes that I struggled with the most. Sure all those things were hard, and the fourteen years I struggled with incontinence and bowel accidents led to embarrassing moments, but when my Crohn’s impacted my vagina, I had shame.

From the moment I was diagnosed with Crohn’s disease, I had perianal involvement; I had my first fistula as a young adolescent. That fistula was tough, but it channeled and broke the surface before it erupted into my vaginal wall. The second and third, and fourth and all of them that I combated for years all channeled and left my internal organs and vagina unharmed. I was becoming a pro at draining, sitz baths, and Cipro/Metronidazole. Yet, my vagina was not going to remain undamaged for long, and I learned that not all fistulas are that easy to combat.

When I had my proctocolectomy, I had a fistula that did not appear on my scans or pre-op testing. My surgeon believed he had gotten it all. He did not.  That fistula and an additional postoperative infection wreaked havoc. In addition to the fistulae creating channels of infection throughout my abdominal cavity, pelvic floor, and reproductive system, I also developed a vulvar abscess. Drains, antibiotics, debridement, more surgery, and a wound vac followed. Looking back fourteen years later, I have no idea how I did it, and honestly, I think not talking about it was the only thing that got me through. However, my inability to talk about it and my shame over what my body did cost me a lot.

From Shame to Empowerment

When my vagina became a war zone, I was engaged. Looking back, it reads like a bad joke; what do you get when you have a male general surgeon, plastic surgeon, gastroenterologist, and WOCN all peering into your vagina? “She may never have sex again,” were the words muttered by those men to each other. With those words, which were never spoken to me only around me, my fiancé became less of a lover and more of a caretaker. My mother and my then fiance’ learned how to unpack and dress a gaping wound between what used to be my rectum and my vaginal opening. It was my twenty-three-year-old fiance’ who saw my vagina with drains and holes and entirely unusable for any purpose. I will always love him even though he is now my ex-husband, as it was him who loved me anyway. At the time, most people in my life only knew that I had an infection, and it was hard, but I did not elaborate on where my infection was. I withdrew from my friends and for years, I did not talk about how much it hurt me physically and emotionally to have and to see my vagina destroyed. As a result, when I needed the most support, I withdrew.

I can now recognize that my desire to avoid engaging with it was a natural trauma response. Eventually, on my own, I have gotten to a place with it where I can talk about it. To that end, I strongly believe that for those of us who have had a recto-vaginal fistula and/or medical trauma, in general, seeking out not only a supportive community but also a well-qualified therapist is critical. Asking one’s primary care physician for a referral or using one’s insurance company to identify possible in-network therapists is a great starting point. However, it is important to remember finding a good therapist is kind of like shopping for shoes. In my shoe life, I am a size 7.5. However, not all 7.5 size shoes fit right. So, when I shop for shoes, I try them on and see if they are comfortable. With therapists, I attend 2-3 sessions, and if it is not a good fit, then I move on.

Sex with a Stoma and Vaginal Scarring

When I finally healed post-operatively, my Crohn’s went into remission. I could finally just be a 24-year-old woman. Naturally, after having severe IBD for a decade, I wanted to live, and in part, I wanted to reclaim my body. Sadly, between my ex-husband becoming my caregiver, my untreated trauma, and us both growing up, the marriage was not meant to be. So, I ended up physically healthy and divorced with a permanent ileostomy, no rectum or anus, and a vagina with scarring that needed encouragement to work properly. One would think this would have been a detractor for me and dating. Yet, it was not.

What I had learned before I had an ostomy with years of severe Crohn’s and incontinence was that people are people and, for the most part, are understanding and compassionate. Those few times that someone was not understanding occurred early in dating and was an indicator they were not for me. After all, I have IBD, and if you can’t hang, then you can move on. So, I was not that anxious about dating with my stoma and what I learned was that confidence can be sexy and that a stoma and a scared vagina are just not deal breakers for anyone I ever encountered.

I knew that my attitude about it was key when I was in the middle of a make-out session and realized I needed to inform the person who was kissing me about my broken body before my shirt came off. So, I muttered, “you know I have a bag, right?” because I have no shame about my stoma, I am more than open on social media, so being FB friends with this person I was making out with before our first date gave him an opportunity to learn. He said, “uh-huh,” and I said, “ok, cool.” That was as in-depth of an explanation as I needed. In other situations, where I am not social media friends with someone I just say it like it is, “I had a diseased colon, anus, and rectum. They were removed and I have an ostomy. Don’t worry about it and if my bag gets in the way feel free to move it. You may feel scarring, it is not a big deal, and I am ok.” When things in my dating life are leading more towards a relationship as opposed to one night stand, I, of course, talk more about my medical history. However, it has always been about how I present it. If I present it as not a big deal, then it is usually not a big deal.

But here is the hope and how I learned to be ok with my body. Sex post-surgery with an ostomy, no rectum, and scaring between my legs into my vaginal canal is WAY better for me than sex with an active fistula, inflamed rectum and anus, or incontinence issues. I no longer have to wonder if I will have a bowel accident when I orgasm. Even more, with the help of an amazing OBGYN, I have learned how to relax my vaginal canal, and the scarring is manageable. Through becoming a sexually active ostomate I learned that my body is amazing and that it can feel good. I have had some recent challenges after an additional surgery I had with some added pelvic floor problems. Yet because I have stopped being ashamed about my vagina, I was able to talk to my doctor and get a referral for pelvic floor physical therapy. My body has been through war, but it does not mean that I can’t enjoy and actively participate in full and pain-free sex life.


To learn more about sex with an ostomy and pelvic floor challenges related to IBD check out the following resources:

• About The Author
From a small town in Vermont, Jenny is a freelance writer and researcher. When she was nine years old, she, like her father and grandmother, was diagnosed with Crohn's Disease. Jenny attended Franklin Pierce University, where she majored in Philosophy and Sociology and completed her M.S. in Human Service from Springfield College. After a proctocolectomy in her early 20s, Jenny entered a period of remission, where she learned the joy of living a full life with an ostomy. Unfortunately, this remission period ended with a severe Crohn's flare that changed her life. As she sought how to cope with this life-changing disease recurrence, Jenny was immediately drawn to Girls with Gut's mission and vision. As the Director of Communications, she is excited to be part of an organization and larger advocacy movement that ensures that no one has to navigate IBD/ostomy life alone.
Small Bowel Adenocarcinoma and Crohn’s Disease Dating with Crohn’s/ Seton Drains

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  1. Gena says:

    Thank you for sharing your story! You are inspiring to me!

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