Karen Gamble thought she just had a ‘bad stomach’ and would have to live with it. Over-the-counter remedies did very little to relieve symptoms for the library technician in her early 50s. ‘Sometimes I missed work or had to go home because I was getting such bad cramps that I could barely stand up,’ says Gamble, now 58. ‘I had alternating constipation and diarrhea, which left me feeling weak.’
Bloating, cramping, diarrhea and constipation are common complaints. But when are the symptoms a sign of something more serious? When Gamble found blood in her stool three years ago, she knew it was time to push her GP for an appointment with a gastroenterologist. The diagnosis: ulcerative colitis. ‘I was actually glad to get the diagnosis so I could get some treatment,’ says Gamble, who lives in Brantford, Ont.
Ulcerative colitis and its sibling, Crohn’s disease, are collectively grouped under the umbrella of inflammatory bowel disease or IBD, a chronic condition causing painful cramps, ulcers and bleeding in the digestive tract. Ulcerative colitis’often simply called colitis’is confined to the colon (large intestine), while Crohn’s disease can strike anywhere in the digestive tract, including the esophagus. The exact cause of IBD is unknown, but it is believed to be related to the body’s immune system producing an unhealthy inflammatory reaction in the digestive tract.
Canada has the highest reported rate of Crohn’s disease in the world, and one of the highest incidences of IBD; more than 200,000 of us are affected. Yet it’s seldom discussed openly, despite being almost as prevalent as type 1 diabetes. More than 9,000 new cases are diagnosed annually, including an alarming increase in children.
Although research has revealed a genetic predisposition to IBD, not everyone carrying the gene will develop it. Gamble’s 79-year-old mother, Stella, was diagnosed around the same time as her daughter. ‘Mom has something called collagenous colitis,’ says Gamble. ‘She is no longer as adventurous as before and she’s very conscious of needing to be close to a washroom, because even with the medication she doesn’t get a lot of warning.’ Bathrooms are something IBD sufferers develop radar for.
Thankfully for Gamble, her ulcerative colitis is now controlled with medication. ‘I don’t like to think I will have to take medication for the rest of my life because there can be side effects, but I’m just glad it works,’ says Gamble. She manages to work full-time and lead a normal life without too much disruption from the disease. And, fortunately, her husband, John, is very supportive.
Monique Lee, of Vernon, B.C., has tried almost every treatment and medication for her ulcerative colitis, with the exception of the costly biologic group of drugs. Three years ago, the 41-year-old was hospitalized with ulcers so severe they nearly perforated her bowel, a condition that can be deadly. It’s been a long, tough road for Lee, who wasn’t correctly diagnosed until over 10 years after she first consulted a physician about her symptoms. Doctors kept telling her it was ‘in your head.’ Symptoms of IBD can be overlooked or brushed off by physicians, who may chalk it up to stress.
Specialists are now recommending Lee have surgery to remove her colon, something she would like to avoid. It involves using the small intestine to form a ‘pouch’ that is then connected to the rectum to allow bowel movements, eliminating the need for an outside colostomy bag. This now-standard procedure takes several operations and essentially ‘cures’ the disease.
Lee is among the colitis sufferers who experience a multitude of other symptoms besides GI problems. Arthritis, inflamed eyes, osteoporosis, gallstones and an increased risk of blood clots and multiple sclerosis are just a few of the additional ailments IBD patients may experience. And then there can be the serious side effects of long-term medications such as steroids and immunosuppressant drugs, which can cause weight gain, skin conditions and irritability. In addition, IBD sufferers have a higher risk of developing colon cancer. Combine that with the stress of living with a debilitating disease and it’s not surprising that depression is also a common side effect.
Unlike the surgical ‘cure’ for colitis, there is no such solution for Crohn’s disease, although serious fistulas or perforations may require life-saving resectioning surgery to remove the affected section. Sherry Pang of Ottawa, who was diagnosed with Crohn’s disease at age 18, has had resectioning surgery three times. Now 49 and relatively stable on medication, Pang chooses her food carefully, exercises regularly’and struggles to keep weight on. ‘Every day I step on the scale, hoping I’ve gained a pound,’ she says. Pang’s two sons, 8 and 12, are taking part in the GEM Project, an ongoing study of the genetic aspect of IBD taking place at Pang’s workplace, the Crohn’s and Colitis Foundation of Canada. ‘As a family we are very involved in CCFC volunteering, so the boys are quite familiar with my disease,’ says Pang, who is never symptom-free.
Lee wants to delay surgery as long as possible, and has recently changed her diet’minimizing red meat and eliminating raw fruit and vegetables’which has resulted in an improvement in her symptoms. ‘I loved salads, but I don’t eat them,’ she says. She’s back working after losing her last job as a result of her last serious flare-up.
Patients with IBD should aim for a balanced diet. The CCFC advises there is no diet that will cure IBD, but certain foods can help or hinder the progress of the disease. Some sufferers find that alcohol, sugar, dairy, caffeine and greasy foods are triggers for increased symptoms; others can tolerate them. Keeping a journal where you can record your diet and note flare-ups often helps. Another recommendation from CCFC: Avoid drinking fluids with your meals; wait at least 45 minutes after eating. Vitamin supplements, though some sufferers may find them difficult to digest, are often necessary to maintain proper nutrition.
While IBD patients do their part to control their symptoms, scientists are working on finding a cure. ‘This is a really exciting time for IBD research,’ says Dr. Nicola Jones, a clinical scientist at The Hospital For Sick Children in Toronto. ‘New genetic discoveries are allowing us to focus on the underlying pathways of the disease.’ Her research has uncovered an important cellular pathway involved in immune response that has promising implications for future treatment.
John Wallace, director of the Farncombe Family Digestive Health Research Institute at McMaster University, recently identified a chemical, prostaglandin D2, that may trigger remission in people with ulcerative colitis. Wallace’s study, published in June 2010, found elevated levels of the chemical in patients in long-term remission. This could lead to the development of a medication to help prevent new flare-ups. And an ambitious U.S. research project, the Human Microbiome Project, is sequencing the genetic content of hundreds of species of microbes in our bodies, including those involved in IBD. The goal is to learn how they interact with other microbes, and with our bodies.