What it's really like to live with bowel disease

Two weeks after she met the man of her dreams, Joanna Valsamis headed into surgery to have her colon removed. “Imagine explaining on a first date why you’ve got an ileostomy bag attached to you,” says the 32-year-old director at a non-profit in Toronto. “I’ve got a disease where it helps to have a sense of humour.”

Joanna has ulcerative colitis, an incurable form of inflammatory bowel disease (IBD). One day eight years ago, her immune system turned on her body. It tore a path of destruction through her gastrointestinal tract, attacking good gut bacteria and blistering her intestinal tissue. “I thought it was just stress — but stress doesn’t give you bleeding ulcers,” she says. Ulcerative colitis is one of two types of IBD — the other is Crohn’s disease — that can strike at any age, for no apparent reason. Although both damage the lining of the digestive system, causing inflammation, sores, bleeding and scarring, the main difference between the two is that Crohn’s can affect any part of the digestive system, while ulcerative colitis targets the colon. About 300,000 Canadians have IBD. If left untreated, it can be life-threatening.

Internal combustion Genetics may play a role in the development of IBD, and factors like stress and processed foods can make embarrassing symptoms, like cramps, gas and diarrhea, worse. But it’s a faulty immune system that stands out as the disease’s defining cause. Armies of immune cells typically patrol the body looking for foreign intruders. They rely on intricate communication networks to determine which bacterium is friend or foe. With IBD, the wires get crossed and good gut flora look like enemies. “It’s like two neighbours who used to get along but can’t anymore,” says Dr. Shane Devlin, program director of the University of Calgary’s department of adult gastroenterology. “In this case, the ensuing damage causes incredible, often debilitating pain.”

When the immune system attacks good gut bacteria, the body triggers an inflammatory response that eventually damages intestinal tissue, causing ulcers, holes in the bowel or severe blockages. And it makes things that should be pleasurable, like eating and drinking, extremely unpleasant.

Shelby Milholm, a 28-year-old adult-special-education instructor at Vancouver Island University, endured gut-wrenching symptoms that felt like stomach flu for a full year before being diagnosed with Crohn’s in 2008. Initially she thought it was a bad case of nerves — the psychology graduate had just enrolled in a bachelor of education program. She was excited about her courses, but she soon found herself frantically washroom hopping across campus instead of attending classes.

Shelby visited her family doctor with an odd list of symptoms: severely swollen joints, softball-sized welts on her shins, low energy and unexplained weight loss (over 50 pounds despite her student diet of pizza). Her doctor thought these might be lingering signs of the mono she’d had as a teen, so he prescribed antibiotics, but they only made her symptoms worse.

“It got to the point where whenever I ate, I’d be doubled over in crazy pain,” she says. “I was running to the washroom up to 25 times a day and popping anti-diarrheal medication like it was candy.” Shelby felt betrayed by her body and barely ate anything for six or seven weeks. “I remember bumping into a friend at the grocery store who didn’t recognize me because I’d lost so much weight. I was scared; my parents were scared; and it felt like my whole world was falling apart.”

Unbearable cramps finally landed her in the emergency room. A colonoscopy revealed severe inflammation and large portions of diseased tissue in her colon and small intestine. “I’d never heard of Crohn’s. As terrifying as it was to learn I had an incurable disease, I was relieved to finally know what was going on inside me.”

Joanna also experienced her first symptoms at university. In her final year studying nutrition and nutraceutical science, the active runner started suffering from bouts of stabbing stomach pains. She tinkered with her diet, but nothing helped. “I was waitressing at the time and experiencing severe cramps, uncontrollable gas and bloody diarrhea. I had to cut back on my hours because I was worried I wouldn’t make it to the washroom in time.” Joanna’s pain grew to the point where it hurt to even take a sip of water. “As soon as I ate or drank anything, my gut would spasm,” she says. “I started to associate eating with pain.” One day her cramps became so excruciating that she was rushed to the emergency room, where a colonoscopy showed bleeding ulcers lining her colon. “I was familiar with human biology because I’d been studying it, but nothing prepared me for the moment when I discovered I had an incurable disease.”

What it feels like to have IBD “Living with IBD is like being on a roller coaster,” says Dr. Kevan Jacobson, head of the inflammatory bowel disease program at the University of British Columbia. “Even people with modest symptoms find their lives turned upside down. Suddenly you need to be near a washroom at all times. It changes how you think about your commute to work, going out with friends, dating, travelling, exercising or running simple errands.”

From diagnosis to treatment, a person with IBD may require time off work, face multiple hospitalizations and IV transfusions, experiment with various treatments or even opt for surgery. “In severe cases, the changes a person experiences are actually on the same level as patients with some cancers,” says Devlin.

After her diagnosis, Joanna worried she’d never have a social life again. “How do you go out when eating and drinking are always an issue? I loved to run and weight train, and suddenly none of that was possible.” She felt isolated and alone. “I hid away at home for a while and thought my life was over,” she says. “One of the effects doctors never really talk about is the depression you feel as you try to navigate life with an embarrassing disease.”

Sometimes the emotional distress of IBD can take as big a toll as the physical symptoms, which could be because the gut is where we store the majority of our serotonin, the happy hormone. With more nerve cells in the intestines than in the spinal cord, the gut can actually influence mood and well-being more than the brain.

Read more: Six natural ways to increase your serotonin levels

Finding the best treatment The trouble with our insides is that they’re unpredictable, and doctors are still stumped by what causes them to react the way they do. Getting the right diagnosis and finding the perfect treatment takes time because there are so many other gastrointestinal problems to rule out.

To keep her Crohn’s under control, Shelby will be on two medications for the rest of her life, one to restore good lines of communication within her immune system and one to suppress her body’s urge to attack itself. She tried an array of drugs before finding the right ones. The high doses of steroids her doctor first prescribed made her face swell and left her feeling exhausted, but now the inflammation is under control, apart from a few flare-ups. “I’m careful about what I eat ,” she says. “Shellfish and too much fibre bother me, and I avoid dairy and red meat.”

Joanna was also put on steroids and experienced similar side effects. “Plus, the medication increased my appetite, which was frustrating because every time I ate, it just hurt more,” she says. Eventually her body stopped responding to the drugs, and her bones grew weak (another risk of prolonged steroid use is poor calcium absorption). Joanna had just finished school and was searching for a job when her mother died. “Stress doesn’t cause IBD, but it exacerbates it, and my disease quickly spread throughout my large intestine,” she says. “Surgery felt like my best option.” Doctors performed a J-pouch operation: They removed her entire colon, made a pouch with the end of her small intestine and connected it to her healthy rectal tissue — eliminating her need for an ileostomy bag. The surgery was a success. “To look at me now, you’d never know I’m missing a chunk of my digestive tract,” says Joanna. “Some days I forget I even have a disease.”

To treat flare-ups, doctors are now prescribing complementary treatments, such as active stress management, guided meditation, hypnotherapy and acupuncture. “With the gut, we’re learning the value of a combined approach,” says Devlin. “The mind and gut share an intimate connection. Major life events can make symptoms worse, whereas even just taking a vacation may make things better.”

Read more: Five ways stress is making you bloated, cranky and forgetful

How talking helps After her surgery, Joanna added yoga and meditation to her routine. As her stress melted away, many of her symptoms did too. She found connecting with people who also had IBD and openly discussing the disease also made a difference. “People don’t think about their colons, and they don’t want to talk about them,” she says.“I was a private person, but then I was thrown into a world dominated by older male doctors, rectal exams and awkward situations. I had to change.” Even when it came to dating, Joanna realized she had to be upfront and honest early in the relationship. “I remember my first date with my boyfriend. There was definitely alcohol involved, and it helped, because I had to tell him what was going on. You expect that people won’t stick around, but I learned that if I’m honest and laugh about it, people can be more supportive than you think.”

Shelby found relief volunteering at the Crohn’s and Colitis Foundation. “It gave me the chance to meet other people just like me,” she says. “I didn’t feel so alone anymore.” Shelby regularly contributed to its blog, the Gutsy Generation, and helped put out a book, the aptly named Tales from the Throne. “We’re in a new era where we’re openly talking about our guts,” says Devlin. “I tell my patients: It’s like having a headache, just somewhere else. The key to recovery is feeling confident enough to talk about what’s going on inside you.”

Meanwhile, Joanna has developed a greater appreciation for her body’s mechanics. “Prioritizing my health helped me feel more in control,” she says. “After my diagnosis, had someone told me that one day I’d have a wonderful social life and a new dog, and would soon be discussing buying a house with my boyfriend, I’d never have believed it. I’m living proof that it gets better.”

Read more: Six tips to improve your gut health>

(Editor's note: Every story is based on personal experiences navigating the health care maze. By highlighting individual struggles and outcomes, we hope to help others make smart, informed decisions. Regulations and results for any therapy vary by province and individual. Check with your insurance provider about coverage policies before treatment.)