It was 1988 and I was just finishing my second year of college when the symptoms started. I knew this was more than just a stomachache, not only for the type of pain I was experiencing, but also for the slight bleeding that had started to appear each time I used the restroom. I'll never forget that first episode. Even back then, rectal bleeding raised the "potential cancer" alarm in me, so I made an appointment with the college's wellness center.
Without much of an exam or suggesting that any tests be done, the doctor concluded that it must just be nerves and to not worry about it. Fast forward to that summer when I couldn't help but worry about it. My pain and symptoms only got worse, and in the course of a few weeks, I'd lost 15 pounds. At 5'1" and 105 pounds, that really took a toll. I knew I needed to see another doctor.
My doctor ran some tests and formally diagnosed me with ulcerative colitis (UC). By then I was also seriously anemic — so much so that I needed a blood transfusion. Since it was the height of the AIDS crisis, I was very leery, but on their urging I went ahead anyway. I stayed in the hospital for a week, and I'll never forget how weak and winded I was walking only a few minutes outside. I definitely didn't feel like a young 20-year-old.
To start treating my UC, the doctors put me on a limited course of prednisone, that all-powerful corticosteroid drug that quickly tamps down inflammation but is also notorious for its mile-long list of unpleasant side effects including insomnia, restlessness, mood changes, weight gain and "moon face."
My doctors also had me try several other medicines over the years, including some that had fairly serious side effects, before I eventually was given mesalamine, another anti-inflammatory drug that was relatively new at the time. Fortunately, this seemed to do the trick, and I've been on various versions of mesalamine for the last 30 years.
But managing my UC has involved much more than just taking medicine. In addition to annual visits with my gastroenterologist and regular colonoscopies, I've come to know certain triggers that can often cause a flare-up, like too much coffee (a tough one for me) or extra stress. Finding the right diet has also been difficult since it's different for every person, and there's so much conflicting advice: high fiber, low fiber, dairy, no dairy, whole foods, raw foods, etc.
I've also had to try different medications over the years and make sure I'm diligent in taking them every day, even if I'm in remission.One thing that helped me was joining an online forum where I was able to find support and helpful tips by connecting with other people who also have UC or Crohn's disease.
Early detection is key to better outcomes
I'm just one of the more than 3 million people in the U.S. living with inflammatory bowel disease (IBD), of which UC and Crohn's disease are the most common. Characterized by chronic inflammation of the intestinal tract causing abdominal pain, diarrhea, bloody stools, weight loss, fever and fatigue, UC and Crohn's each affects roughly 750,000 Americans annually.
While Crohn's can appear anywhere along the intestinal tract, it typically targets the small intestine, whereas UC only affects the large intestine (colon) and the innermost lining of the colon. Unfortunately, there's still no cure for UC or Crohn's, and there's not a definitive cause, but in a recent interview, Dr. Ayanna Lewis, a gastroenterologist at Mount Sinai South Nassau Hospital in Oceanside, New York, pointed to some key findings.
"We do consider [IBD] to be an autoimmune process where the immune cells in the gut become overactive and cause an inflammatory response. As to why this happens, there are a host of things that play a role, including genetics, environment (primarily diet) and heredity (more prevalent in Crohn's than UC)."
Although the number of men and women with UC and Crohn's is similar, Lewis stressed that women with either disease should take extra care if pregnant or trying to conceive. "Women need to have a conversation with their GI doctor regarding medication and to coordinate with their OB-GYN and pediatrician. If they have flares during pregnancy, they're more likely to have bad outcomes, such as miscarriages and low birth weight."
People with IBD are more likely to have certain chronic health conditions such as arthritis and cardiovascular, respiratory, kidney and liver disease, but the increased risk of colon cancer is probably what worries people most. The risk greatly increases after 10 years of having the disease, so early detection is key. It's recommended that people with UC or Crohn's have a colonoscopy every one to two years.
Lewis adds, "It's precisely why we're so aggressive in managing it. If someone is getting treated and having regular colonoscopies, they're actually at a lower risk than the general public."In addition to regular screenings, you can reduce your colon cancer risk by following a healthy lifestyle, which includes eating lots of fruits, vegetables, and grains; limiting alcohol; getting regular exercise; watching your weight; and not smoking.
Ways to manage your symptoms
Finding effective medication to control symptoms is critical for managing UC and Crohn's. For years, mesalamine, an anti-inflammatory drug sold under various brand names, has been a standard treatment for UC and Crohn's.
"Mesalamine are aspirin-based compounds that treat the disease topically, on the surface of the colon, reducing inflammation," says Lewis. Recently, new therapies including biologics, have been developed that have, in some cases, proven even more effective, especially in more severe cases of UC and Crohn's.
"We've really revolutionized things over the years," says Lewis. "Now we have so many different treatments for the immune system. Biologics block the actions of the immune cells themselves before they can cause inflammation. They get to the source, which leads to better outcomes."
Although biologics work well for some people, they aren't for everybody. Other promising treatments, such as immunomodulators, JAK inhibitors and S1P receptor modulators, are on the horizon as potential alternatives.
"The food quality here [in the United States] is so poor. I think a lot of people may be reacting to the food." Lewis points to the high-sugar, high-fat, low-fiber Standard American Diet (SAD) in the U.S. and other Westernized countries as a likely factor in the increase in UC and Crohn's.
"Try and eat whole foods as close to natural as possible. Don't get the apple-flavored cereal, have an apple instead. I recommend the Mediterranean Diet for my patients, which focuses on high-fiber, fish, lean meat, fresh vegetables and greens, in their whole form. Working with a dietician is also helpful."
For those of us living with UC and Crohn's, Lewis emphasizes, above all, having good communication with your doctor and being honest about your symptoms and how you're doing.
"A lot of women tend to get downplayed by being told, 'It's just stress; don't worry about it.' You have to be persistent, and we as doctors have to do better about patient concerns."
Crohn's and Colitis Foundation
Supported by education grants from Bausch Health, Bristol-Myers Squibb, and Takeda Pharmaceuticals U.S.A, Inc.