Courtesy Amber VeseyWhile most kids were excitedly awaiting their first day of kindergarten, 5-year-old Amber Vesey was busy throwing up and trying not to cry from the stomach pain that took over her body. The cramps, bloating, and constipation became unwanted enemies that would come and go for years. By the time the feisty and petite Rochester, New York, native got to high school, her stomach distress was close to intolerable. She would have said it was the worst pain of her life when, at age 15, she was diagnosed with irritable bowel syndrome, but she didn’t know what was coming. (Think you might have IBS? Here’s how to tell.)
“I hate my stomach”
Amber ‘s gallbladder was removed at age 16, but her symptoms did not abate. By the time she was a college sophomore, things hit critical mass. “My symptoms became unmanageable,” she says. “I hated my stomach. I was extremely constipated and so bloated, I looked as if I was five months pregnant. I couldn’t fit into my clothes… and my stomach’s distension was really messing with my body image.” The college infirmary advised her to take laxatives, which didn’t help. She was eventually sent home, and an x-ray showed 10 pounds of excrement in her stomach.
At that point, Amber got a pinpointed diagnosis from a gastroenterologist. At 20 years old, she heard about irritable bowel syndrome with constipation (IBS-C) for the first time. IBS-C is a major subtype of IBS with an unknown cause. It affects up to 13 million Americans and is marked by debilitating, excruciating symptoms, such as constipation, bloating, and gas pain. Amber ‘s symptoms were particularly severe and would have felled most humans, but not her.
“Taking my body back”
Courtesy Amber VeseyAn unrelenting optimist, Amber refused to give up, or in, to her symptoms. When her bloated stomach became too much, she didn’t hide it under bulky clothes. She pierced her navel and showed it off proudly, turning her tummy into something of beauty she could admire, no matter its size. That mindset defined the fight she would continue to rage, and eventually, win, despite continuing pain, and debilitating symptoms.
Amber started spending time trying to figure out what treatments were going to work. She took laxatives constantly and did cleanses to try to unblock herself. “Fear ruled my life. The pain remained so severe, I had to keep going to the hospital,” she says. “I was taking pain medication–nine pills a day–with no improvement. It was the most miserable time of my life.” Amber was even scared to go out because she never knew when urgency to use the bathroom–an unfortunate symptom of IBS-C–would hit. “I had a severely negative relationship with food, and it made me anti-social. I was uncomfortable in my own skin.”
Amber tried going gluten-free and dairy-free, but nothing worked. At her college graduation, she couldn’t zip her dress up under her gown because her stomach was so distended. The worst of these symptoms would continue for several more years. (Find out more surprising causes of constipation.)
“A medication came to my rescue”
Amber ‘s was one of the worst cases her doctor had ever attempted to treat. He told her about a pilot program for a new IBS-C drug called Linzess, and she jumped on the chance to enroll. “I started to take Linzess once daily, and still do,” she says. “It helps me stay ahead of my symptoms, so I can manage my disease proactively. I no longer take laxatives, unless I become very backed up or sick. When I was at my sickest, I took laxatives almost every day. Now, I only have to do that around three times a year.”
Courtesy Amber VeseyHer battle with IBS-C hasn’t ended–she knows it never will. But she wasn’t afraid to drink champagne or eat a cupcake at her wedding. She manages her symptoms with incredible discipline and a spirit of admirable optimism. “I retrained my bowels to empty in the morning,” she says. “That routine has been very helpful. I try to only sleep at home and wake up at 4:25 a.m. every day, because I’m a teacher. In that time period, I take Linzess, wait half an hour, and before I leave, try to empty out my system.”
Proactive lifestyle habits also help Amber retain balance. She meditates, does yoga to help abdominal pain, and stretches after she eats to improve digestion. She modified her diet by cutting out all FODMAP foods. Working out is also a big stress reducer. Amber teaches behaviorally-challenged high school students and must find ways to decompress. “If I raise my voice, my stomach starts to bloat,” she explains. Amber runs and lifts weights to help keep stress at bay. (Here are some more fitness trends that can help relieve stress.)
“I have IBS-C, but it doesn’t have me”
Courtesy Amber VeseyDespite her healthy lifestyle, Amber still needs to prepare for sudden flare-ups, particularly when she goes on vacations. “It can be scary. There are lots of what ifs,” she says. “I worry, what if I can’t leave the hotel? I pack my medication, but also IBS-friendly snacks, laxatives, and pain meds, just in case. That keeps me calm in the knowledge that no matter what, IBS-C won’t stop me. I do extreme sports. I can do whatever I want. IBS-C limits me, only when I let it limit me.”
Amber shares her sense of optimism, plus tips for living with IBS-C at her blog, Eats and Exercise by Amber. “There’s lots of shame about this disease,” she says. “That’s why I won’t shut up about it. My blog is my platform, because it’s so important to advocate for yourself and for others. After all, your attitude determines everything.”