How would you react if a friend asked to bring her own toilet paper when she came to visit? Would you say anything if a friend excused himself to go to the bathroom but was gone for longer than an hour? Would you be offended if a friend cancelled dinner plans because of the restaurant you’ve chosen?
Living with IBS can be difficult because symptoms can strike without warning, and when you need to go, you need to go. The pain IBS sufferers describe is excruciating and often like going into labour. They are also embarrassed by their smelly farts and diarrhoea.
Four women share their experiences of living with IBS – from taking her own toilet paper to being a fussy eater.
Just be honest
For Joanne Eglash, living with an invisible disorder like IBS has affected how she interacts with her friends. She has found that the best thing to do is be honest about her condition. Initially, before she was diagnosed, her friends would hint with subtle concern – “I’m worried about how frequently you need to find a bathroom when we’re shopping” – to asking her bluntly – “Are you allergic to me, because why else do you rush to the bathroom every 10 minutes when we’re at a restaurant together?”
But, as soon as she was honest with them, they just wanted to know more about IBS and how it affected what she could eat.
Eglash writes, “I could finally explain to them why I had regretfully declined an invitation to a Mexican-themed potluck, why I no longer get fast food with them, and why I avoid spicy appetizers at restaurants. Some friends wanted to know how they could help, which led to me saying things like, ‘Umm, I know this sounds weird, but do you mind if I bring my own super-soft toilet paper to your house for book club nights?’”
She says that despite the risk of feeling awkward, it was worth it being honest with her friends. “They showed me understanding, and in one case, empathy: ‘Believe me, I get it. I’ve got ulcerative colitis.’ I let my closest friends in so they could know how my daily life has changed, and as was the case with my new low-FODMAP diet, knowledge about living with IBS was power.”
Laura Brook has suffered numerous embarrassing episodes linked to her IBS. But she’s learnt not to wait when an episode starts. “I vividly recall a specific episode, during a work meeting, in a room full of people,” she writes. She should have avoided the humiliation by excusing herself from the meeting as soon as her stomach started to bloat. Instead, she decided to stay and hope for the best.
"Unfortunately, the best didn’t happen and within a few minutes I endured the first round of bowel noises, which sounded like a loud gurgle, and eventually after a couple of minutes a high-pitched noise similar to a deflating balloon.”
At this point, she felt her face getting red and flushed. “Wishing that the people in the room had not heard them as loud as I did, I looked down pretending to be very absorbed with my meeting notes.”
She hoped that her colleagues thought her stomach noises were because she was hungry. “But within me I knew very well that a rumbling stomach sounds rather different than a hyperactive bowel, which is growling because it is full of gas, moving around the intestines. Gas that wanted to be released and that was trying to push its way out, and me not knowing what to do next, wishing to be swallowed by a giant black hole or sucked up in space by aliens. Anything that could have removed me from that room would have been fine. In that occasion I was so lucky that the meeting finished soon afterwards and I was able to make my way to the toilets before anyone else.”
Brook shares her strategy for dealing with public bathrooms when an IBS episode hits in public. “My main strategy is flushing the toilet, while having a bowel movement; this serves two purposes, first to mitigate the smell and second, but equally important, to cover up the bowel noises.”
Be a fussy eater
These days it’s not uncommon for someone to have a food allergy or intolerance. But people are often quick to joke about someone being a fussy eater. However, for someone with IBS, food can trigger an episode.
"Recently I was out for dinner with some colleagues, and I had to send my meal back because it was covered liberally in onions and garlic, which I'd already requested be removed," says Susan Smith*.
"Someone across the table made a joke about being a picky eater, and instead I was forced to explain that I had irritable bowel syndrome, and knew that onion and garlic are my worst trigger foods, so therefore I couldn't eat it.
"I was already pretty uncomfortable – I'm not squeamish, but I'm not massively into talking about my bowels at the dinner table. By trying to deflect talking about the medical realities, my dinner companion seemed to take it as more of a preference to not eat onion and garlic. The only way I was actually able to shut down the conversation was after being asked, 'Exactly what happens if you eat onion?' I bluntly told her that I would s*** my pants."
Other times, IBS can strike without warning while running errands.
“I was shopping in town with absolutely no IBS symptoms that day when suddenly the sweating and gripes started while I was in Next. I grabbed any old pair of jeans off the rail and ran into the fitting room. I pulled a carrier bag out of my bag and managed to 'go' into that. Luckily I was carrying some perfume and sprayed it about, dumped my carrier into my bag and shot out of the shop," recalls Bertha Simon*.
Tips for living with IBS
If you suffer from IBS, here's how you can manage your condition:
- Know your triggers and avoid them.
- Speak to your doctor about medications you can take to ease symptoms.
- Be prepared and keep a spare change of clothing in case you have an accident and can't reach a bathroom in time.
- Manage your stress, which can be a trigger for IBS symptoms.
*Names changed to protect identities.
Image credit: iStock