Intimacy with an Ileostomy
TW: This post discusses body image, weight and sensitive topics.
Having surgery to form an ileostomy can understandably be overwhelming, especially if you’d had your ostomy formed as an emergency and it’s been completely unexpected. Even for people where ostomy surgery is planned, waking up with an ostomy can feel daunting and overwhelming and it’s not abnormal to feel like you’re drowning, trying to get to grips with a load of information and a new plumbing system in your body.
Recovery progresses, and you start asking yourself more questions that impact your every day life as you adjust to life with an ostomy and these can be to do with so many subjects such as diet, doing sports and relationships. A topic that started to repeatedly occur in my head as I got a few months down the line in my recovery and started to feel more “human” was intimacy and how this would impact my relationship with myself and also with the man I was with at the time.
I got married in August last year to my now husband and we’ve been together since 2017. I had my surgery in 2011 and have had quite a bit of dating experience since between then and meeting him. I actually confined myself to just dating people who had IBD and/or an ostomy for the first few years of surgery because I was honestly so fearful of what people who had potentially never heard of an ostomy would think. However, unfortunately, I did learn by doing this that actually if somebody was going to hurt me, they would anyway, ostomy, IBD or not and after a horrible relationship, this gave me a big wake up call to step outside away from the ostomy and IBD world.
“Am I happy with what I see in the mirror?”
Before relationships with anyone came into question, I worried about how I’d feel about my body image and whether I felt sexy or not with an ostomy bag. I had not maintained weight or even managed to put any on for pretty much the entirety of the time since my Crohn’s Disease diagnosis when I was 7 years old, and I wasn’t really the biggest fan of looking in the mirror or photos of myself before my surgery because I’d feel like my clothes drowned me, I looked ill and I had no shape about me, barring my swollen face ever too often from becoming dependent on steroids. Even going down a milligram on steroids would often be notorious for flinging my Crohn’s Disease into a full blown flare-up.
As the months passed after surgery, I developed an appetite for food for the first time in my life that I could remember and a healthy appetite at that. Eating felt amazing and was no longer marred by the fear that came with it before surgery of being in agony, feeling sick and rushing to the toilet time after time. I started to put weight on and it was within the first few years after my surgery that I actually started to like what I saw in the mirror and feel like a woman with shape and weight. Fast forward to 11 years post surgery and my relationship with my body is the best it has ever been. I still get my bad days, but that’s human and on those days, I try to focus more on what my body and my ostomy do for me and have enabled me to do, rather than focus on my reflection.
Having sex for the first time after surgery
My partner I was with at the time and I decided to go with the flow when it came to intimacy after surgery. It was something that, understandably, I felt anxious about and was something that I had been used to not always being straight forward or pain-free because of the relentless stomach pain I’d get with Crohn’s Disease before surgery.
I can’t honestly remember exactly the timeframe we waited before having sex after my surgery but it was definitely longer than several weeks as it wasn’t something I found myself thinking about in my recovery because of how close I’d been to losing my life. Getting better and creating myself was definitely higher on my priority list and I didn’t really feel like I had a sex drive, again, mainly because historically I hadn’t had a great sex drive from always being in pain.
When it did happen, I don’t remember it being a negative experience. We took things slow, communicated and more than anything, I remember feeling a little tender but feeling a lot more at ease because I wasn’t in Crohn’s pain. My stoma nurse advised that using lubricant would never be a bad idea, especially because it can be common to have vaginal dryness after ileostomy surgery. Because I also had my rectum and anus removed, she said certain positions may need adapting or require more patience and I do remember that being more tender than anything. It felt like during sex, there was almost a limit where penetration could become sore from my barbie butt surgery and it did impact my stitches a little, because they’d done some stitches very close to my vagina, which unfortunately did become caught and sore sometimes. Thankfully, this wasn’t to an extent where it became a problem or stopped them from healing and the more we became intimate, the more we learnt what positions etc were likely to aggravate this more.
Worrying about my bag getting “in the way”
Fast forward to over 11 years since my permanent ileostomy was formed and I sometimes do get irritated by my bag hanging down during intimacy, when I let it get to me anyway. There are a few things you can do to help stop this, such as using a stoma waistband to hold it up in place, using hair grips to fold the bag up in half and clip it in place once you’ve emptied it (if you empty it before sex) and also begin to put your bag on normally at a slight angle so that the outlet isn’t hanging directly down.
My husband has also held it up for me sometimes if I’ve communicated it is bothering me and I have also done the same. There are also some brands that do crotchless, high waisted underwear which I haven’t tried, but I imagine these are another way to keep your bag in place and stop it irritating you or getting on your mind during sex. Pretty underwear is also a winner and can be worn and worked around in intimacy.
I’m happy to say that most days now, I don’t really give it much mental space to allow it to irritate me during intimacy because my husband embraces me with my bag and it never stands out for him and I’m much more body confident so don’t find it gets to me as much. However, there are still times where it does impact me and I communicate this and we move forward in a way that makes me comfortable together.
When to communicate to a potential intimate partner
Since having my surgery, I have always been of the opinion that the people who matter don’t mind about my bag and the people who do mind don’t matter. Having an ostomy bag helps you not to waste your time as it soon whittles out the shallow people who aren’t meant to be with you and don’t deserve to be with you whether in a plutonic, romantic and/or intimate way.
I’ve always been very open about my ostomy bag and have told people about it within the first few days of talking. “How?” you may ask. When I was dating, I would find a place in the conversation to mention it such as asking “tell me a random fact about yourself” and then when asked in return, tell them about my ostomy. I can honestly count on one hand the number of people who stopped talking to me and/or were bothered by it. My husband now is so supportive, embracing and loving.
Getting intimate after surgery is something that is personal to the individual and there is no set time frame or rules as to when you should feel comfortable or ready to do things, so long as you’ve been given the go ahead by a medical professional. The right person will happily go at a pace that is comfortable for you and reassure you, love you and appreciate you for who you are regardless of your ostomy. If you have any concerns, always speak to a medical professional such as your stoma nurse, who will be able to offer many helpful hints.