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.
This month, we celebrated Valentine’s Day. One of the main things I worried about having an ostomy was dating. I wondered if anybody would find me attractive, what intimacy would feel like and I also worried about how I’d feel about my own body long term. My ostomy saved my life, but that doesn’t mean I don’t have bad days or issues. That being said, thankfully those negative things I experience are severely outweighed by the good.
This blog post is going to be a bit of a different one, in the sense that my husband is helping me with it. Think of it as a little Q&A – Valentine’s style.
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.
Setting the scene
Ben and I met in 2017, on a dating app. I wasn’t really looking for someone in all honesty after coming out of a relationship of several months that really wasn’t smooth sailing. I was on a free dating app, but wasn’t actively looking for anyone. In fact, Ben was the first person I’d reached out to and messaged. Fast forward to 2025 and we are heading into our third year of marriage, have a lovely home and a gorgeous, gorgeous rescue dog! Ben has even worn an ostomy bag on World Ostomy Day a few years in a row, to get just a tiny glimpse into ostomy life.
Let’s get started…
Me: How did you feel when I first told you about my ostomy?
Ben: I think I felt quite emotional. It was when we first started talking. You’d been through so much and I found it quite upsetting that you’d been through all that trauma.
Me: Had you heard of an ostomy before?
Ben: I had heard of a colostomy before but not an ileostomy. I have a family member with Inflammatory Bowel Disease and dated someone with Crohn’s in the past. But I didn’t fully understand what it was.
Me: Tell me about one of your first memories of me and my ostomy
On World Ostomy Day, Ben wears a bag for the day. This is a throwback!)
Ben: The one of us walking back from our first date when you had a bag leak. I don’t see it as a bad memory but it probably wasn’t the best one for you! It provided me with an opportunity to just be there for you and show you that it really didn’t bother me. I remember when we got back to my flat, I helped you to get sorted and change your bag and remember reassuring you a lot, because you were worried it would “put me off”.
Me: How did you feel the first time you saw my ostomy bag?
Ben: Indifferent. I didn’t feel much. By that point, I was so prepared to see it that I just thought “cool, it’s part of you!”. It wasn’t a big deal. As much as it’s a part of you, it doesn’t define you.
Me: What did you think the first time you heard Stacey Stoma trump?
Ben: I thought “I’m never going to be able to compete with that. It was a cute fart! It’s quite adorable!”
Me: Were you nervous the first time we got intimate, because of my ostomy bag?
Ben: I was more thinking about how you’d feel about me, to be honest. I was more self conscious. It doesn’t cross my mind when we sleep together or are intimate. The only time I’m conscious of it (i.e. if your bag rustles or your stoma farts), I’m more conscious of it for you, and how it might make you feel. I think it’s harder for you because you’re the one who has it.
Me: How do you feel about the day to day life with me and the adjustments we might have to make because of my bowel disease and/or ostomy?
(Note: I struggle with fatigue a lot but thankfully have been long-term medication free since my surgery in 2011).
Ben: It emphasises the need even more to be understanding and work as a team. Sometimes, I’ve got to acknowledge that you may need more support but at the same time, it gives me purpose knowing everyday that I’m able to help you every day. It’s a nice feeling knowing that I can get up in the morning and help you do your day. It helps give me purpose.
Me: What advice would you give to someone who is nervous about telling a date about their ostomy?
Ben: The odds are, that person won’t really think that much about your ostomy. It will be a small footnote in your personality. If someone does see it as a big deal, then you want to cut that date short and get out of there!
Me: Have my experiences of bowel disease and having an ostomy taught you anything about life?
Ben: It makes you not take the present day for granted because you don’t know if your health is going to last. It gives you more appreciation for the good days and enables you to cherish every moment.
Me: How do you think you’d feel if one day, you need an ostomy?
Ben: I’d feel scared, naturally and apprehensive about the adjustment to my life but I feel I’d more likely be able to come to terms with having one through seeing what it’s done for you.
Me: Would you say my ostomy makes us stronger?
Ben: Yeah. It creates a deeper level of understanding and we talk a lot of sh*t! We also know when to be serious and when it’s totally okay to take yourself the opposite of serious!
Me: If you had to describe Stacey Stoma in three words, what would those be?
Ben: Cute, petite and life-saving!
Thank you, Ben, for being such an amazing husband and partner in crime!
Respond’s useful advice and support
Respond have a blog full of posts from other ostomates on their website. Some blog posts in their lifestyle section are:
- Learning to love yourself – by Maryrose
- A Valentine’s reflection – by Angelina
In summary, the right person won’t mind about your ostomy, and if they mind, then they aren’t the right person.
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
