Mavreen David stood at the front of a packed lecture theatre in Vancouver’s UBC Robson Square campus on a warm day in May. Among the many aspects of her identity, she is the owner of a successful photography business, the mother of a young son, and is a well-travelled individual. On this night, Mavreen spoke about something else: a disease that derailed her youth and early adult years, crippling her with bouts of arthritis and intestinal anguish. She was talking about Crohn’s disease, an invisible illness that is affecting as many as 130,000 Canadians right now.
“My battle with Crohn’s disease began at the age of 12,” she told the crowd. “The disease ravaged my body, and dimmed my spirit. During my first flare, I went from a chubby, healthy kid down to skin and bone: an anemic 76-pound shell of myself.”
The audience at the UBC campus was attending the inflammatory bowel disease (IBD) “Your Gut, Your Health” forum presented by the Vancouver Coastal Health Research Institute (VCHRI) and the GI Society. The session consisted of Ms. David, three physicians, and the CEO of the GI Society. Our Medical Advisory Council chairperson, Dr. James Gray, moderated. Each person spoke about different aspects of ongoing IBD research and the impacts of this disease on everyday life.
IBD is a term that primarily refers to two diseases of the intestines: Crohn’s disease and ulcerative colitis. These both involve inflammation of the digestive tract, which is limited to the inner mucosa of the colon in ulcerative colitis, but can include any area of the GI tract and can extend through the entire thickness of the bowel wall in Crohn’s disease.
For individuals who have IBD, the most frequent symptom is diarrhea, often accompanied by cramping abdominal pain. Rectal bleeding, in varying amounts, occurs in most patients with inflammation in the colon, where blood is obvious within and covering the stool. Low red blood cell count (anemia) can result if diarrhea and blood loss are severe. Some patients even have extra-intestinal manifestations, including fever, inflammation of the eyes or joints (arthritis), ulcers of the mouth or skin, tender and inflamed nodules on the shins, weight loss, and numerous other conditions. Anxiety and stress are major factors that can precede flare-ups.
At the lecture, Mavreen told the crowd that as a pre-teen and teen suffering from Crohn’s disease, she was predictably shy about it. “I don’t know many people who feel comfortable talking openly about their abnormal and scary bowel movements, and I certainly wasn’t any different,” she said. “It was terrifying to see blood and mucus in the toilet bowl and, forgive me for my crudeness, but this is the reality for those of us with inflammatory bowel disease.”
A timeline of her life with Crohn’s disease gave the audience a big picture view of what it’s like to live with a chronic, debilitating illness. “We hear statistics of diagnosis,” she said, “but what follows that initial discovery is often overlooked”. Two years after her initial experience with arthritis, a comorbidity of Crohn’s disease, Mavreen finally received a correct diagnosis at age 14. However, the road to remission was long and arduous. By age 16, she had already undergone emergency surgery to remove a significant part of her large intestine, resulting in a colostomy. At age 21, Mavreen had the opportunity to try a biologic medication for treatment of IBD, which helped immensely, but the respite was short-lived because she had to stop treatment when her prescription plan did not cover the medication. So the painful symptoms including kidney stones, skin issues, arthritis, and depression returned.
“When the story is laid out this way, it seems like an unrelenting battle,” Mavreen said. “And it did feel like that at times, but things really changed for me when I turned 30. I made a conscious decision to take control of my health once and for all and to commit to getting well and staying well.”
Here are Mavreen’s top four tips that helped her strengthen her resolve to take back control over her gastrointestinal health, in spite of living with IBD.
1. Be 100% committed to getting well
“If you aren’t 100% invested in being well, nobody else will be.” Mavreen noted that, from her perspective, attitude is key. “I do not allow myself to feel like I am an unfortunate victim in this,” she said. “I am not. Everything in life is relative. Everyone has his or her challenges, big and small. If I manage the negative things, I leave room to enjoy the positive.”
At age 31, Mavreen finally began a long-term journey on another biologic, which led to sustained remission. In addition to this, she also worked hard to commit to other lifestyle changes that help play a role in reducing stress and anxiety, which often factor into flare-ups. She credits the newfound health she was able to develop as a key factor in enabling her to give birth to her son at age 36. She said, “I never thought that my health would be stable enough so I could have a healthy pregnancy. It was a dream come true.”
2. Find a doctor who you feel comfortable with
Surrounding yourself with the best physicians who can give you great care is essential. The relationship between you and your doctor is very personal, and it is important to find the right fit. While Mavreen said that she knows this can be a challenge in Canada’s medical system, she has always insisted on this. In her words she, “made it happen through persistence and sheer stubborn will.” Your physician is there to help find the best treatment management plan for you, so do not settle for a minimal standard of care.
3. Learn to rely on your support system
“Having a support system at work, home, and in the community will help you to work through the tougher times,” Mavreen said. “You can’t do it alone, and those who love and care about you will be un-phased by the ugliness of it all.” The key to nourishing connections is communication. It is vital to be able to explain your limitations while still maintaining a positive demeanour. Many times this is easier said than done; there may be times when you are too sick to make even a minor effort.
Written resources such as GI Society pamphlets or Inside Tract® newsletter articles can help! Additionally, the GI Society offers support groups for individuals with IBD and other GI conditions.
4. Keep yourself informed
According to Mavreen, “keeping yourself as informed as possible about your disease and general health and attending evenings like this one will give you the knowledge and tools you need to give yourself the best shot at a happy and healthy life.” If you are an unhealthy person in general, your IBD will only be worse for it. Mavreen speaks out a lot about her Crohn’s disease, because she feels that it is important for those who are suffering in silence to know that they are not alone. She wants them to, “feel like there is someone out there who understands what they are going through.”
The GI Society also works to accomplish this goal. We provide accurate medical information to patients on a wide range of gastrointestinal conditions and work hard to put on community BadGut® Lectures that help individuals to take back control over their digestive health.
As Mavreen said, this might sound simple, but it definitely is not. It requires a lot of time and energy that can sometimes be hard to muster when dealing with chronic illness. The payoff is worth it. At the end of her presentation, Mavreen told the hushed crowd, “I have defied the limitations that this disease imposes. I have clocked over 50,000 kilometres in EPIC road trips with my best friend, worked in Africa, jumped out of a plane, seen paradise, fallen in love, and experienced a miracle. Life is good.”