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What It’s Like To Live (And Date) With Irritable Bowel Syndrome
As a successful full-time blogger in London, Scarlett Dixon kept her irritable bowel syndrome diagnosis a secret from anyone aside from her teachers and parents for 5 years. When she finally opened up about it, at age 19, with a post on her lifestyle blog, the reactions shocked her.
"My first post got more than 100,000 views, lovely comments, and lots of e-mails from people all over world sharing their story," says Scarlett. "It’s become a community of people instead of just me against IBS." Now 22, Scarlett says she’s glad she shared her story, since it’s helped her to realize she’s not alone. "A lot of women have digestive issues, even if it’s on an infrequent basis, and we don’t speak about it," she says. "But it shouldn’t be taboo, and people shouldn’t have to suffer in silence."
A disorder in disguise
Scarlett says she’s had problems with her stomach for as long as she can remember. "I was always having either diarrhea or constipation and was constantly worried about being near a toilet," she says. "Being a teenager is hard enough without that on top of it."
Her first major IBS flare-up happened at 8 years old, when she was sent home from school on her birthday. "I was in so much pain and crying," she says. Yet it wasn’t until she was 14, following stressful exams, that she finally saw a doctor and got diagnosed.
According to the National Institutes of Health, IBS is what doctors call a "functional gastrointestinal disorder," or a collection of symptoms—including pain in your gut and changes in your bowel movements—that signify your bowels aren’t working correctly despite a lack of damage due to a disease. The exact cause is unknown.
"I get bad stomach cramps and pain," explains Scarlett. "It feels like something is stuck, like there’s a knife inside my stomach. It’s left me waking up in the middle of the night thinking I was dying because it was so painful."
"It’s a shame I kept my IBS in the dark for so long."
People sometimes confuse IBS with other gastrointestinal issues, like food poisoning, says Scarlett—but it’s much more serious. A really bad bout for Scarlett can last a few weeks, all day every day. Even when the pain does subside, a flare-up is still a downer. "It makes you feel really exhausted, and you don’t eat properly because you don’t feel like eating, and food can aggravate IBS," she says. "And you’re not sleeping well. Sometimes it knocks me out and I have to go home and lay down with hot water bottle."
Bloating—which Scarlett says feels like a giant basketball in her stomach—is another common, aggravating symptom. "Sometimes I look 5 months pregnant," she says. "I have to have so many dress sizes in my wardrobe, because if I’m really bloated that way I don’t have to wear uncomfortable clothes."
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Dating with IBS
Scarlett remembers her high school boyfriend once making a joke in passing along the lines of, "Girls don’t fart or go to the toilet." All of her friends were laughing, and it seemed like an innocent enough comment.
"I thought if that’s what he thinks, if he only knew I had these problems with my stomach," says Scarlett. "It’s not ladylike. I’m sure he didn’t mean it in a negative way. But there’s a stigma attached, especially for girls, and boys play on that. You’re at that age when you’re embarrassed about a lot of things, and you don’t want to have to talk about your body and how it’s not functioning right."
In fact, according to the NIH, although an estimated 10 to 15% of US adults have IBS, only 5 to 7% actually get diagnosed. And perhaps more surprising, it’s actuallymorecommon in younger than people than those over 45.
"Sometimes I look five months pregnant."
Scarlett recalls a holiday vacation she took with that same high school boyfriend and his parents in Europe. For a week, they shared a small house with a very unprivate bathroom. "There was a hole in the wall," she says. "Everyone could hear everything that went on in that bathroom and probably see as well. I immediately felt conscious and awkward. I had a really bad week with my stomach, and I’m not sure whether he noticed or not. I just remember being in so much pain, feeling like I had to shroud my condition in secrecy. It ruined the whole week for me."
Scarlett says she always chooses first date spots where it would be easy to discreetly escape to the restroom. "It would be very difficult for me to go on a first date in a quiet, intimate environment, like a guy cooking dinner at his house," she says. So her dates have always been in a restaurant. "You can always excuse yourself, plus there’s lots of distractions," she says. "Not all the focus is on you."
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Scarlett's current boyfriend, David, is the first partner she's opened up to about her IBS—and it was by accident. When they first met, she told him about her blog, forgetting about her posts on IBS. David read them all that night and immediately texted to tell her he was there to talk, and that he had a friend with IBS. "I don’t know that I would have otherwise shared all of that with a guy I was dating," she says.
Later, on one of their first dates, David told her that his stomach was a bit dodgy because of something he’d eaten. "I remember thinking, 'What am I worried about? Everyone has stomach issues from time to time. It’s not something I have to hide,'" she says. "From then on, I just didn’t feel so nervous about it."
Since then, Scarlett says she’s been able to talk to David about everything. "I never had to explain," she says. "He knows that sometimes I have to say I can’t eat this or that. There can be this perception that you’re being fussy or you’re trying to be trendy on a diet. But he’ll call ahead and tell the restaurant or pull the waiter aside and explain for me. It really takes the pressure off that there’s someone with you on your side."
Finding a Treatment That Worked
Over the years, Scarlett says her doctors prescribed her "every one" of the medications available to treat IBS, and none of them provided any relief. At one point, says Scarlett, a doctor prescribed her low-dose antidepressants to help with the pain (depression has also been linked with IBS). "Obviously they’re a serious med, and that caused a whole other host of issues," she says. "Like, I couldn’t wake up. I’d sleep 16 hours a day. I had no energy, and I gained a lot of weight."
By age 21, Scarlett says IBS made it so she couldn’t function in daily life. "I was waking up every night in agony, ringing the doctors saying there must be something seriously wrong with me, telling my mum, 'I don’t think I can go to university anymore,'" she says. "I thought, 'This is not how want to live life as a 21-year-old.'"
That pain finally forced her to commit to making the change. "Before I never really gave myself the time to understand why it was happening and if I could change it," she says.
Scarlett took the York test, a mail-order test that looks for IgG antibodies, markers of a food intolerance. Not all people with IBS have a food allergy or intolerance, according to the American Academy of Allergy, Asthma, and Immunology, and some experts say the IgG test isn’t the most accurate diagnostic tool. But for Scarlett, it worked. She cut eggs and dairy, as well as almost all processed foods and chocolate, out of her diet. "I did so much research," she says. "I kept a food diary every day for 3 months. It was a commitment. I needed to stick with it, because changes weren’t going to happen overnight."
She also got a colonoscopy, and doctors discovered her colon was double the average woman’s. "My doctor told me mine is extra loopy and twisty, so it’s harder to push food through," she says. (IBS is about twice as common as women as it is in men, perhaps in part because women’s colons are longer than men’s, according to the the NIH.)
Within 3 months of her new diet, Scarlett not only felt better, she’d lost about 40 pounds. "It was surprising because it wasn’t intended," says Scarlett. "But it showed me what I was doing to my body with what I was eating before. It’s helped me to make healthier choices."
"Everyone could hear everything that went on in that bathroom and probably see as well."
Another condition often linked to IBS is anxiety—which Scarlett says still plagues her, though she’s working on it. "I’d worry about my stomach flaring up, and my stomach would flare up because I was worrying," she says. She’s found cognitive behavioral therapy, which helps change the way you think about things, helpful. "It teaches you how you respond to those thoughts," she says, "It’s been really helpful, because I’m a natural worrier. I like to be in control. But with IBS you don’t have control."
Although Scarlett says she’s still not IBS-free, she’s found a lot of relief from her symptoms. "It doesn’t plague or control me," she says. "That’s my health sore. Some people have really bad period pains or migraines. For me it’s IBS."
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Tips and Tricks for Other Women with IBS
In addition to talking to a nutritionist with doctor, Scarlett recommends keeping a food diary so you can watch out for foods that trigger symptoms. "If I’ve eaten a food that’s a trigger, I’ll feel it within a few hours," she says.
Scarlett says that a lot of people tell her that life must not be worth living without cheese or chocolate. "Before, I’d have a family-size chocolate bar every night," she says. "I really loved it." But she’s learned not to miss these foods. "I like way I feel without them, so I never really miss them," she says.
When her IBS does flare up, Scarlett says making time for self-care helps her still feel sexy. "You want to feel glamorous, but it’s hard when you’re feeling crap inside," she says. "When I’m feeling like that, it helps to experiment with makeup. It’s also nice to have a couple go-to outfits you can still wear and feel good in. It’s all about learning to live with it and not wallowing in how you feel."
While it hasn’t been easy, Scarlett says IBS has changed her life in many ways for the better. "I was always on so many diets because I wanted to lose weight," she says. "But I’d do it for 2 weeks thinking I’d be my dream size, and it’s not how it works. As a byproduct of changing my diet, I have to go for healthier options and stick with them.
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