Dating can feel daunting at the best of times, but imagine the difficulties faced by those with an inflammatory bowel disease (IBD), like Crohn’s disease and ulcerative colitis. The lifelong gastrointestinal disorders cause painful symptoms, including chronic diarrhoea, abdominal pain and fatigue. Data from Crohn’s & Colitis Australia reveals Australia has one of the highest rates of IBD in the world, with 100,000 people affected. Of those impacted, 80 per cent will eventually need surgery. For some, part of their bowel will be removed, and they may have to live with a stoma bag, which collects their faecal waste. While surgery can alleviate the pain, living with a stoma bag isn’t without its challenges, especially in the realm of dating, sex and intimacy. To start a conversation which has long lived in the shadows for IBD sufferers, Take 5 has spoken with those living with the disease, and experts who share tips on navigating life with a stoma bag, in and out of the bedroom. For more, visit: www.crohnsandcolitis.org.au/
What is a stoma bag?
A stoma bag is a plastic bag worn outside the body that collects faecal matter. A stoma is an opening made through the abdomen which connects the bowel to the surface. A stoma bag creates a seal around that hole, to catch stools and prevent skin irritation.
Zero Shame
Rhiannon Jones, 30, Wilmington, SA
Taking a sip of my bowel prep, I groaned.
“It’s so unfair,” I said.
“I know, darling,” my mum Andrea, 41, said sympathetically.
While my friends were celebrating schoolies, I was preparing for a colonoscopy.
I’d been suffering from chronic diarrhoea throughout my teens.
I tried lactose-free and gluten-free diets, but nothing stopped the frequent trips to the loo and crippling abdominal pain.
Embarrassed, I tried to hide it from my peers.
Next day, I had the colonoscopy, and afterwards the gastroenterologist called Mum and me into a room.
“It’s Perianal Crohn’s disease,” she said, explaining it was a type of inflammatory bowel disease.
They wanted to remove my large bowel.
“So I’ll have to walk around with a poo bag?” I said. “No way!”
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I was so horrified, they gave me medication to reduce the inflammation instead.
Later, I started dating Shannon, 19, who I’d known from school.
He had an older brother with cerebral palsy and had grown up understanding what it was like for someone with a disability.
I’d hidden my IBD from past boyfriends but eventually, I confessed to Shannon.
“There’s nothing to be embarrassed about,” he said kindly.
The meds I was on worked well for a few years but I suspected I was on borrowed time.
In August 2018, Shannon and I had a son Maverick.
We married soon after and in August 2021, Elke was born.
Over the following year, I became very unwell.
“It’s time for your bowel to go,” my colorectal surgeon said.
I woke up from surgery without my large bowel, and with a stoma bag. It’d happened so quickly, I had no choice but to accept it.
Thankfully, Shannon was all for it. Before moments of intimacy, I’d empty my bag and velcro it up, so it was out of the way.
Later, because the disease had seeped into my rectal stump, I had surgery to clear it out, remove my anus entirely and stitch it up.
I’m still recovering now and will live with a stoma forever, but I finally feel at peace with everything.
While my wound is still healing, Shannon and I have had to be creative with intimacy but I’m confident we’ll be back to normal soon.
I’m healthier now than I’ve been since I was little. I feel zero shame around my stoma bag, even wearing crop tops that reveal it. It’s given me my life back.
No more pain, no more fear or constantly wondering where the closest loo is.
“It’s great to see you so happy,” Shannon said recently.
I’m so lucky to have him. Dating with a chronic illness isn’t easy but I recommend being honest and picking a supportive partner, because they make such a difference.
Learning to love myself
Jade May, 38, Redfern, NSW
Staring at my stoma bag, a lump formed in my throat.
“How will I find a boyfriend with this thing,” I said to my mum Josie, 46.
“You will,” she replied, but seemed unsure.
Aged 20, my self-esteem was at rock bottom.
I’d been diagnosed with Crohn’s disease seven years earlier and in and out of hospital ever since.
Now, due to severe complications, I’d had part of my small intestine temporarily pulled out while my body recovered, and a stoma bag inserted.
It was painful and I never got used to it.
I read romance fiction novels to forget about it.
They taught me about kink and bondage and I could explore what I might like sexually – not that I’d had any real-life experience. I’d never even kissed a boy.
A year later, I had reversal surgery and the small intestine reinserted back into my body, so the stoma was removed.
Later, I was in remission.
Medication controlled my disease though I knew future surgery was likely.
I got a marketing job and joined some dating apps.
But I didn’t hit it off with anyone.
At 28, I met a man called Daniel, 35, at a work conference on the Gold Coast.
Turned out, my colleague Catherine knew him.
“He’s the sweetest guy,” she told me. “He’d be perfect for you.”
That night, after the conference, Daniel approached me.
It sounds cliché but I looked into his eyes and fell in love.
“Can I buy you a drink?” he offered.
“Sure,” I grinned.
As we chatted, I’d never connected with someone like him before.
Afterwards, he flew back to Sydney and I went home to Melbourne, but we stayed in touch.
Weeks later, he convinced me to fly to Sydney for the premier of Anchorman which he was working at.
There, we shared our first kiss and I knew I had to tell him about my illness.
It’s a tricky balance. If you tell someone too soon, you risk scaring them off. Too late, and they’ll think you hid it from them.
“I have a chronic illness, and it comes with a lot of baggage,” I explained.
Daniel nodded as I spoke, taking it all in.
“I understand,” he said afterwards.
Do you really? I wondered doubtfully.
He revealed his sister, Leah, 29, had sadly died from Hodgkin’s lymphoma. I realised it gave him a level of empathy many blokes wouldn’t have.
But when we were intimate, I was incredibly self-conscious, worried I’d have a bowel movement.
Daniel was very patient and after several months, things got better.
We married in 2015 and three years later, we had our beautiful son Jordan.
My advice to other young women with a chronic illness attempting to date is to go for therapy first.
It took me years to confront my past trauma and learn to love myself. I wish I’d done it much sooner.
If you can’t love yourself, you can’t love anyone else.
Sex with chronic illness
Clinical psychologist and couples therapist, Phoebe Rogers says experiencing the new appearance of your body following stoma surgery can bring shame and embarrassment.
It may feel natural to want to withdraw from social situations or intimate relationships but this can erode self-esteem and mental health.
A period of adjustment should be expected, and feelings of grief aren’t uncommon.
“A raft of feelings can emerge, from sadness, anger and even depression,” Phoebe says.
When coming to terms with change, a kind approach helps.
“I encourage clients to think about how they might love and accept themselves even if their body has changed,” she says.
When it comes to navigating intimacy post-stoma surgery or with a chronic illness, although it’s natural to feel nervous about how a partner may react, Phoebe reminds couples they’re on a journey.
“Openness and honesty are key,” she says. “It’s probably that each person will have different feelings about what’s happening, and talking – even if difficult – is a pathway to intimacy.”
For singles hoping to date post-stoma surgery, the prospect of revealing this aspect can be daunting.
Although honesty is the best approach, disclosing too much too soon, or not at all, can be problematic.
Phoebe says it’s best to test a person’s maturity gently, to gauge whether they’re emotionally equipped to respond to illness or physical differences.
Conversations early on can be as simple as asking a person’s view on subjects like mental health or anxiety.
“Their response can indicate their values,” Phoebe says. “And whether you’re aligned.”
Phoebe reminds those navigating intimacy post-surgery that some days, sex will be feasible, and on others, it won’t.
“You’re the best judge of your body,” she says. “And it’s your responsibility to care for yourself.”
Doctor’s tips
Gastroenterologist Dr Reme Mountifield says most of the time, people living with a stoma can have a normal and healthy sex life. Establishing open communication with your partner about the stoma, what it looks like and why it is needed is an important start to accepting that it is there and needn’t interfere with sex.
Here are her top tips:
- Speak to a stomal therapist. They’re a great resource to answer questions and dispel myths.
- To start a conversation with a prospective partner, you might choose to show pictures of stomas online to prepare them.
- Reassure them a normal sex life is possible and won’t harm your stoma.
- Empty your stoma bag before sex if possible to reduce distraction.
As more and more people open a conversation about managing sex and relationships with a stoma, the broader community develops more awareness about stomas, and with this comes greater acceptance, compassion and understanding.
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