What it’s really like to live with Crohn’s disease

When Ta’lana Watt Madu runs an errand, she plans her route carefully. Not based on traffic or short cuts, but on access to bathrooms. Like 250,000 other Canadians — among the highest rate in the world — Madu has inflammatory bowel disease, specifically Crohn’s disease, which interferes with her body’s ability to properly digest the food coming in and the resulting waste going out. The need to go can come on suddenly, urgently and frequently, hence her finely tuned radar for the closest bathroom.

“I’ll plan a route where I know there are gas stations,” says the Metro Vancouver business admin student, 21. “I usually never travel in a group; I go by myself because it’s less embarrassing to pull the car over every half hour.”

It’s not a particularly pleasant subject, and therefore not a hot topic of conversation at cocktail parties, or anywhere else. As a result, Crohn’s, along with its cousin ulcerative colitis, lives in the shadows. But Madu has the, well, intestinal fortitude to shine a light on it.

What are Crohn’s and Ulcerative Colitis?

Both Crohn’s and UC are autoimmune diseases which inflame the lining of the gastrointestinal tract, with symptoms that include cramping, diarrhea (often bloody), fever, fatigue and loss of appetite often resulting in malnutrition and anemia.

With Crohn’s, inflammation can occur anywhere in the GI tract, but usually affects both the inner and outer lining of the small bowel and the colon, and is much more severe. It can also inflame your skin, eyes and joints, and produce canker-like sores in your mouth. UC affects the rectum and innermost lining of the large intestine (colon), causing inflammation and ulcers in the digestive tract. When doctors can’t differentiate between the two, the condition is called indeterminate colitis.

Who gets it?

One in 150 Canadians lives with inflammatory bowel disease (IBD). Most are diagnosed before age 30, and the number of children diagnosed under the age of 10 has doubled since 1995. It can hit any gender or race, although Caucasians, particularly those of Jewish descent, get Crohn’s more often.

New immigrants to Canada, specifically young Southeast Asians, are also diagnosed more often. The incidence of the disease in Asia, Africa and South America, however, is low. So why does such a wealthy, healthy, progressive country like Canada pump out such a nasty disease? Genetics and environment, mostly. If a parent or sibling had it, you have a higher chance of also being affected. Defining what “environment” means, however, is tricky, because research is ongoing. But our diet, often rife with processed and fast foods and their myriad additives and preservatives, is a suspected culprit. This could explain why immigrants who adopt our lifestyle are stricken.

Madu admits her own diet was more junk than juice. “I’d go through two bags of candy a day. I really didn’t eat very well; I love my fast food. My last hospital stay, however, made me realize eating healthy is really important.”

Smoking also plays a part, but in a surprising way. “It worsens Crohn’s disease significantly,” says Vancouver Coastal Health gastroenterologist Dr. Nancy Fu. “It can progress a lot faster in smokers and they are not as responsive to medication. On the other hand, for UC patients, when they are smoking the symptoms are milder. When they quit smoking there’s a chance of flare up. We don’t know why smoking plays such a big role, but nicotine replacement therapy doesn’t make a huge difference.”

We may score high on IBD simply because Canadian doctors are more familiar with the disease, and are therefore diagnosing it more. Or maybe, it’s because we live in a cold country. “We find there is a correlation between where you live and the incidence of the disease,” says Dr. Fu. “In sunnier areas, like near the tropics, the incidence is much lower than colder countries like Canada.”

Our long, dark winters drain us of vitamin D, and some researchers suggest supplementing with the vitamin (as well as probiotics) could help. Our hyper-cleanliness could also be a factor, since early exposure to some bacteria helps fight illness later in life. Other studies suggest the use of antibiotics, particularly in children under the age of two, increases the risk of developing Crohn’s.

How is it diagnosed?

Both Crohn’s and UC are difficult to diagnose because the symptoms mimic many other diseases and conditions. “Some doctors will think it’s a viral infection or you’ve eaten something wrong,” says Dr. Fu. “The symptoms don’t really have a huge correlation to what’s happening inside your bowel.”

Compounding the problem is that there are actually five different types of Crohn’s and four types of UC, each one affecting a different area of the GI tract. Doctors use a combination of blood test, colonoscopy, endoscopy and sometimes imaging tests such as X-ray, ultrasound or CT scan to determine the real issue.

How is it treated?

When patients are finally diagnosed, it can be a devestating blow, but it can also be a relief to be able to put a name to their suffering and start treating it. Although there is a “cure” for UC, which is essentially the removal of your colon and rectum, Crohn’s must be managed through medication, since surgery, which removes only the damaged part of your digestive tract, is a temporary salve; the condition often recurs. But there are many drugs to treat IBD, depending on the type and severity of your condition.

Madu had been sick for two years before she was finally diagnosed at 17, but she was still a long way from effective treatment. “I went to the hospital a couple of times but no one was able to tell me what was wrong,” she says. Her doctor originally booked her in June for a test in September, since wait lists for colonoscopy are long, but her symptoms were so severe she jumped the line. “I saw a specialist, got admitted to the hospital, and, after three days, got a test there.”

Madu was put on medication, but the drugs didn’t work, because by now her immune system was so low she contracted the bacterial infection C. difficile, and remained in hospital for 29 days. After she was discharged, she ran the gamut of drugs in search of relief. “I’ve been on one medication after another,” she says. “They’d work for a while, then I’d get sick again or my doctors weren’t happy with the results.”

Over the next few years, Madu was in and out of the hospital six times, the longest stint for seven weeks, ending this past March. “The drugs we take are immuno-suppressants, so you’re prone to getting sicker easier. When you get a cold it can turn into pneumonia. I’ve had pneumonia twice now.” She’s now being treated with Entyvio Infusion Therapy, which injects the drug directly into her vein for up to 45 minutes per session, every eight weeks. “It’s the first time I’ve felt better. I don’t wake up in the morning in agonizing pain.”

And while dealing with the disease is tough enough; dealing with some people’s reactions is tougher. Madu says she’s had to dash into the woods when some businesses would not allow her to use their facilities. “Even when you tell them you have this disease they won’t let you,” she says. “It’s heartbreaking and embarrassing. We need people’s support, to listen and understand what it’s like, how exhausting it can be to just get out of the house. There’s probably not a day when I’m not reminded that I have it. I can’t even think of the last time I had a somewhat normal day. The goal is to get away from that.”

Research and funding

Because the exact cause of IBD is still uncertain, there is no cure. Researchers are studying the good and bad bacteria of the microbiome, fecal transplant options, and biologic medications that target the disease’s pathways to allow for better treatment. Crohn’s and Colitis Canada is focusing on the combined effects of genetics, environmental and microbial, called The GEM Project. Based in Toronto, the international study tracks healthy relatives of Crohn’s patients to see how these factors are linked to the development of the disease.

Fundraising includes Gutsy Walk, held at over 60 locations across Canada, on June 5. Susan Hampton, Development Coordinator for British Columbia/Yukon Crohn’s and Colitis Canada, says the walk, now in its 21st year, sees more and more participants each year, since more people are being diagnosed.

“It’s a great community event for families,” says Hampton. “There’s entertainment, face painting, crafts, a dunk tank, food.” The walk itself is roughly five kilometres, depending on the route — and always with bathrooms nearby.

“That’s one of the requirements,” says Hampton with a laugh. “And if there aren’t, we bring in port-o-potties.”