Having stoma surgery is life-changing, and for many, including myself, life-saving.
I’ll briefly set the scene and give you the background info. My stoma, ‘Stacey’, was formed in 2011, when I was 19 years old. I needed her due to severe Crohn’s disease (a form of Inflammatory Bowel Disease (IBD)) and due to a large, benign tumour on my colon, the size of a watermelon. Surgeons didn’t find this until they operated. If surgeons had left things even a few hours, I was told I wouldn’t be here, so she literally saved my life.
Having ostomy surgery itself can naturally be daunting, then as you recover, you find yourself thinking about all elements of life with a stoma – sex and intimacy being one of those things. It’s natural for your head to feel like it’s whirring with worries and thoughts and it’s also natural to feel some fear and anxiety towards it.
In this post, my husband, Ben and I are going to go through some of your questions asked via a question box on my Instagram and discuss what intimacy has been like for us. This post is mainly in video format with subtitles (see below), but I will also post some narrative surrounding it.
Please note that this is with regards to my experiences living with an ileostomy and using a one-piece, drainable ostomy bag. Let’s get started.
Encouraging the conversation when it comes to love and intimacy after stoma surgery
The good news is that most people, after stoma surgery, can have fulfilling sex lives. However, everyone is different and like a lot of things, sex is a topic that is very individual to every person. I will say that obviously, your sex life is personal to you and that there’s no certain way to go about it, and some problems with sex aren’t because of stoma surgery. If there is something you’re worried about with your sexual health or otherwise, it’s always best to speak to a medical professional.
In this video, Ben and I set the scene of our relationship and the video: Encouraging the conversation when it comes to love and intimacy after stoma surgery. We answer your questions:
- How did intimacy change with an ostomy?
- Has anything ever happened during intimacy ie a bag leak?
And we both share our perspectives. Both from my point of view as the person living with an ostomy, and also from Ben’s point of view as being a partner of someone with an ostomy.
Communication is key
One thing that rings true throughout our conversation is that communication is key. Sometimes, in society, we’re made to feel like conversations around sex and intimacy should feel awkward or taboo, when really, it’s something so natural. A lot of things are also trial and error. It’s also important to remember that intimacy is so much more than sex and physical intimacy doesn’t always have to lead to sex.
Ben and I have had our struggles when it comes to talking about intimacy in the past, but we’ve learnt that even if the conversation feels so difficult, it’s better to have those conversations for the better of our relationship. Those conversations, even though they’re tough, bring us closer and the same goes in conversations surrounding other things in the relationship.
Respond’s free, downloadable, sex and intimacy booklet
Respond have a handful of useful, downloadable booklets, all for free. They cover different aspects of stoma life. This sex and intimacy booklet is so useful, and helps to break things down into understandable, less overwhelming chunks for all things sex and intimacy post stoma surgery.
It’s so important to speak to your stoma nurse or a healthcare professional if you are worried or concerned about anything.
For so many, including myself, having an ostomy wasn’t the end. It was just the beginning.
You can message me and follow me on my stoma journey on Instagram: @ibdwarriorprincess