Sexual Education & Disability: Sex with a Stoma

Nothing could have prepared me for the moment when I realized my life was about to drastically and permanently change. It was a typically overcast north-western afternoon in early 2019 when I found myself in a medical examination room, sitting directly across from a colo-rectal surgeon. I was overwhelmed with emotion as he told me in no uncertain terms that I would need to have all five feet of my colon permanently removed. At that moment I knew that my life would never be the same.

It wasn’t a complete surprise to hear that I would need this drastic surgery. I’d always known that it was a possibility, but after living with active bowel disease for most of my life, it had started to become an inevitability. Despite that, I was speechless; you can never truly prepare for news like that. I felt a sense of dread as I processed the situation, and at the same time I felt a sense of relief. I hoped that through this life-altering surgery, I could somehow reclaim my autonomy. After so many years of pain and suffering, perhaps I would finally be comfortable.

My Colectomy Surgery

My colectomy[1] surgery happened several months later, in June of 2019. I spent the better part of a month in the hospital afterwards recovering. Because my entire colon was removed, I was given an end ileostomy[2].

The process of making a stoma[3] significantly impacted both my physical and mental health. During my recovery, a stoma nurse worked with me to ensure that I knew how to care for this new part of my body. Their job was to instruct and educate me on my ostomy, and the types of products that I would be using for day-to-day maintenance. The stoma nurse was also responsible for marking the spot where my stoma would be created. They measured my abdomen and together we chose a roughly one-inch in diameter location to mark for the procedure. This marking essentially tells the surgeon where to make their incision.

Medical Sex & Intimacy Advice After Surgery

The stoma nurse visited me every day for the first week after surgery to ensure that I had an understanding of how to care for my new medical device. During these visits, they took time to answer any questions I had. In addition to their hands-on education, they provided me with several booklets advertising different ostomy products. These brochures and pamphlets were plastered with images of smiling grey-haired people cheerfully swimming and playing tennis.

At the back of the brochure was a section labelled ‘sex and intimacy’. As a sex worker and sex educator, I was keen to read what they had to say. To my dismay, the half-page segment was all of two paragraphs. The brochure explained that patients may resume sexual intercourse as soon as they feel ready (whatever that means), and emphasized that the stoma itself should never be used for intercourse. This small section of the brochure ended by encouraging the reader to contact their nurse or healthcare provider if they had any additional questions regarding intimacy post-surgery.

Despite the fact that the information seemed to be medically-focused (with no information whatsoever regarding sexual pleasure), they offered no real insights into what that sexual wellness might actually look like. There was no mention of erectile dysfunction, despite the fact that some men experience impotence after their ostomy surgery. There was also no information provided on how a major abdominal surgery such as mine might affect the pelvis or sex organs. Since the internal sex organs are so close to the bowels, wouldn’t it make sense to discuss the potential for pain during penetration? I had hoped that these pamphlets would contain a list of pelvic exercises to rehabilitate the genital area, as well as suggested sex positions that are less likely to cause pain. There was no mention of whether or not anal sex would still be medically possible for patients like myself who have not had their rectum removed. Anal sex is an increasingly common practice among people of all backgrounds, so I was shocked that none of my doctors or nurses prioritizes speaking to me about possible associated risks. At the very least, I expected to be given suggestions for ostomy-compatible lingerie, or basic instructions on how to care for my ostomy before and after sexual intercourse.

Aside from the lack of useful medical information, there was no guidance on how a person might feel confident and sexual again in their new body. Neither the brochures nor my stoma nurse informed me of any additional steps I might need to take mentally or physically to prepare myself prior to being sexual. It seemed as though no one in the hospital wanted the responsibility of shouldering an awkward conversation, and sadly the patient is the only one who suffers as a result.

Placement of The Stoma For Sex

When the stoma nurse assisted me in choosing the location of my stoma, they had discussed various pros and cons of stoma placement. At their advice, I took into account the ability to comfortably tuck my medical equipment beneath different clothing styles. Despite these helpful recommendations, they left out a key piece of information: due to the size of many ostomy products, a stoma that is placed too low on the abdomen will cause a person’s ostomy to hang low enough on their abdomen that it would touch or even cover part of their genitals.

Because of the low placement of my stoma (intended to fit discreetly and comfortably beneath high-waisted pants) and the long and slender shape of the products provided at the hospital, the bottom of my ostomy hung below my groin. This was immensely distressing, as I relied on live nude performances for my income.

Thankfully as a sex worker and former sex-shop employee, I have had an extensive education on the intricacies of my own sexuality. As someone who gleefully boasts that they ‘get naked for money’, I was prepared to take on the challenge of getting to know my new body. Not only this, but I had the encouragement of tens of thousands of friends and fans across multiple social media platforms, all of whom were cheering me on.

As time went on, I learned that ostomy products come in all shapes and sizes. Through trial and error, I found a smaller sized product with an extra velcro feature that allows the wearer to fold their ostomy in half to reduce the size and keep it closer to their body. This prevents the wearer from having their ostomy hanging from their abdomen (especially useful while you’re getting dirty on your hands and knees!). I researched different types of lingerie that were compatible with my ostomy, so that I would still look and feel as sexual as I had before.

Lack of Comprehensive Sexual Education

Ostomates[4] (or anyone dealing with a life-altering disability) deserve comprehensive sexual education. There are little to no resources out there for someone who is wondering how they can reintroduce sexuality into their sexual relationships - including their relationship to themselves.

I consider myself lucky for having so much self awareness in regards to my sexuality. I regained my confidence quickly. It is the unfortunate truth that for many people with disabilities, the lack of information available can lead to a lifetime of insecurity or dissatisfying sexual experiences. In reality, not everyone feels comfortable discussing their sexuality with their doctor (especially if their questions are regarding something considered taboo!).

For those who are struggling with their sexual wellness (due to a disability, or any other reason!), remember that you have the right to enjoy healthy sexual relationships regardless of your physical limitations. You have the same sexual rights as everyone else, able-bodied or not. I believe in an accessible future, and the time has come to demand comprehensive, accessible sex education.

People with disabilities date, masturbate, have sex, and even watch porn just like the rest of the world does. Those same people deserve sexual wellness and autonomy just like the rest of the world does.

--

References:

1 A “colectomy” is a surgery to remove the colon.
2 An “end ileostomy” is made when part of all of your large bowel is removed, and as a result a part of your small intestine is brought to the surface of the abdomen to create a stoma.
3 “A stoma” is a surgically created opening in your abdomen in order for waste to leave your body if you are unable to have a bowel movement through your rectum.
4 An “ostomate” is a person who has an ostomy (a medical device used to assist an individual in eliminating waste).