When Heather Sliwinski is out in public, people don’t see her as sick. The Crohn’s disease symptoms and side effects that can make living with the chronic condition debilitating at times are largely invisible. “I’ve been sitting on the bus before on a bad day—in pain and sick—and told by a stranger that I shouldn’t be sitting, that I should give up my seat to someone else who needs it because I’m a younger, seemingly healthy individual,” the PR professional from San Francisco says. “What they couldn’t see is that I was in pain, sick, and terrified that I may have an accident. Who wants to tell a stranger that they have diarrhea to justify taking up a seat on the bus?” An estimated 1.6 million Americans are walking around with some type of inflammatory bowel diseases (IBD), a classification that includes both Crohn’s and colitis. These diseases are typically diagnosed before someone hits their thirties, and they’re chronic. There is no cure for Crohn’s. And yet, myths about Crohn’s disease, its symptoms, and what will happen to those diagnosed run rampant. Here’s what the experts say is really going on in the gastrointestinal tract of people like Sliwinski and what to do if you think you might be experiencing symptoms of Crohn’s disease.
What is Crohn’s disease?
Before you can consider whether or not you have Crohn’s disease, you need to know what Crohn’s disease is, right? Ramona Rajapakse, MD, a gastroenterologist and director of the Inflammatory Bowel Disease Center (IBD) at Stony Brook Medicine, describes Crohn’s as an inflammatory condition of the gastrointestinal (GI) tract, the system of organs that stretches from the mouth all the way to the anus. Although sometimes confused with colitis, which refers to an inflammation of the inner lining of the colon, Crohn’s disease is its own separate condition. Setting it apart from colitis are a number of factors, including the fact that Crohn’s can affect all layers of the bowel wall and can appear anywhere along the GI tract. What’s more, Crohn’s disease can do something doctors call “skip,” meaning there may be sections of the bowel affected by Crohn’s with perfectly healthy, normal tissue in between them.
What causes Crohn’s disease?
Despite the large numbers of Crohn’s sufferers in America, the cause of the disease still stumps doctors, says Meenakshi Bewtra, MD, a gastroenterologist and assistant professor of medicine at the Hospital of the University of Pennsylvania. “We really don’t understand what causes Crohn’s disease (CD), but we currently believe it is an interplay between some unidentified environmental factor, a dysregulated immune system, a change in the gut microbiome, and some genetic factors,” Bewtra says. “Unfortunately, we haven’t figured out what any one of these are, let alone what combination causes CD. So I try and also make sure that [patients know they] did nothing to cause this—either to themselves or to their children. They are not responsible for this.” The one and only risk factor that doctors can point to is heredity: There’s a higher incidence of Crohn’s for people who have a family member with the disease. And yet, even having a parent, grandparent, or sibling with the disease is no guarantee that you’ll end up with a Crohn’s diagnosis, nor does everyone with Crohn’s have a family history to report to their doctor. People with Crohn’s disease often ask Bewtra if the disease can be passed on to their children, and to that she says absolutely not. “While there does seem to be some genetics at play, I caution against not having children if that is something a patient wants simply because they fear passing on CD,” she says. “There are plenty of children with CD who do not have parents with CD, and there are plenty of parents with CD who do not have children with CD.”
What are the Crohn’s disease symptoms to look for?
Crohn’s disease can be silent for a long time before someone, or their doctors, make the connection and reach a diagnosis. This is in part because symptoms vary from patient to patient, Rajapakse says. When Amanda Semenoff was finally diagnosed with Crohn’s disease more than a decade ago, she realized the symptoms had been present and slowly creeping up for a long time. “Diagnosis took more than two years, and my symptoms were pretty extreme by the time they figured it out,” the mediator from New Westminster, British Columbia, tells HealthyWay. In that time, Semenoff had lost more than 100 pounds and found herself too weak to climb stairs without lying down about halfway up to rebuild her strength. Even now, she has fuzzy memories of those two years due to a perpetual brain fog, coupled with stomach ulcers, bleeding rectal fissures, and near constant vomiting. For Sliwinski, the path to diagnosis was even longer and likewise fraught with complications. “The onset of my symptoms was in 2010. I was managing, and I had been told by my primary care physician that I had irritable bowel syndrome (IBS), so I was used to having multiple bowel movements a day,” she recalls. “But it got to the point where I couldn’t finish a meal without having to run to the bathroom.” A year after the onset of symptoms, she landed in the hospital with high fever, extreme abdominal pain, and diarrhea. When she noticed blood in her stool, Sliwinski says she knew there was something more than IBS going on. Still, it wasn’t until 2013 that she finally got the answer: Crohn’s disease. While the effects of Crohn’s do vary from person to person, the Crohn’s & Colitis Foundation suggests keeping an eye out for the following Crohn’s symptoms:
- Persistent diarrhea
- Rectal bleeding
- Urgent need to move bowels
- Abdominal cramps and pain
- Sensation of incomplete evacuation (of your bowels)
- Constipation (can lead to bowel obstruction)
- Loss of appetite
- Weight loss
- Night sweats
- Loss of normal menstrual cycle
Although it’s typically diagnosed in one’s twenties or thirties, Crohn’s can show up in younger kids as well, and failure to grow is a major indicator, says Ashkan Farhadi, MD, a gastroenterologist at MemorialCare Orange Coast Medical Center and director of MemorialCare Medical Group’s Digestive Disease Project in Fountain Valley, California.
How is Crohn’s disease diagnosed?
Crohn’s can take months or even years to diagnose in part because it manifests itself differently from patient to patient. But it’s also a complex condition to diagnose, Farhadi says. Crohn’s disease is diagnosed based on a series of tests. First, Farhadi says, there are clinical findings—basically examination by a doctor and review of your medical history. Next a potential Crohn’s patient will undergo imaging, be it CT scan or MRI. Typically an endoscopy—a procedure in which the digestive tract is viewed via a miniscule camera inserted into the tract (or sometimes swallowed by a patient)—will be done to give doctors a look at what’s going on in the GI tract. Finally, biopsies may be taken, and the tissues will be reviewed to determine if there’s inflammation or other issues. In addition to the GI tract itself, a doctor may look at other parts of the body. That’s because Crohn’s disease is what Bewtra calls a full-body disease. “There are other parts of the body such as the eyes, liver, bones, etc. that can also be affected, sometimes even if the patient feels otherwise well,” she notes.
What happens if you’re diagnosed with Crohn’s disease?
A Crohn’s diagnosis is a major step to feeling better, but just how quickly you will get there depends on the severity of the disease. Typically the first step is medication, Farhadi says. Short-acting steroids may be used in order to get the inflammation of the GI tract to calm down, offering relief from pain. Other medications prescribed, called immuno-modulators, may be focused on getting the body’s immune system in check. “It’s an autoimmune disease; the immune system is acting against its own GI tract,” Farhadi explains. For some patients, diet and other lifestyle changes will be necessary to help the gut heal. Those changes could be temporary or long-term. Surgery is typically kept as a last resort, but it’s also on the table for some patients with Crohn’s disease. Sometimes that means taking out an inflamed section of the GI tract, Farhadi says. Other times it means going in to perform a stricturoplasty, a procedure that removes scar tissue in the intestinal tract that has built up due to chronic inflammation. Removing that tissue can help waste flow more smoothly through the bowels and reduce a patient’s pain. The most common surgery for Crohn’s disease is the treatment of a fistula, a tunnel created when inflammation works its way through the walls of the intestines. For Semenoff, treatment was long and extreme. “It took three years for me to get to functioning at all,” she recalls. “Hospitalizations, procedures, all kinds of crazy medications and weird diets, journaling, massage therapy, supplements, and many doctors. Some of it worked, but in some spaces it isn’t as obvious. My Crohn’s is now mostly in remission and controlled by avoiding my trigger foods, some fasting, and basic self-care.” Remission is exactly what doctors shoot for when they treat people with Crohn’s disease. “We don’t cure it,” Rajapaske says. “We control it.” It’s a disease that waxes and wanes, she adds. Weeks, months, or even years with no pain or intestinal issues can be followed by what’s called a flare-up, a sudden reactivation of symptoms. Sometimes patients can go for lengthy periods of times living medicine-free or eating what they want, but they’ll need to return to their doctor for treatment if Crohn’s rears its ugly head again. “Despite all of this—and it is scary and overwhelming—our primary goal in IBD care is to make sure that the patient can live the life they want to live.” —Meenakshi Bewtra
“Despite all of this—and it is scary and overwhelming—our primary goal in IBD care is to make sure that the patient can live the life they want to live.” —Meenakshi Bewtra
How can you get help with Crohn’s disease?
Diagnosis of Crohn’s disease is typically made by a gastroenterologist, so if you think you have Crohn’s disease symptoms, it’s best to talk to your general practitioner about a referral. Bewtra not only treats the disease but also battles Crohn’s herself, and she encourages her patients to be open and honest with their doctors. “Despite all of this—and it is scary and overwhelming—our primary goal in IBD care is to make sure that the patient can live the life they want to live,” she says. “I really try to emphasize that there may be times of greater challenge, times when goals may need to be put on hold, but every physician I know tries to emphasize that our goal is that they live the life they want, be it volunteering in a [developing] country, working in a hospital, teaching preschool, running a business, etc.” If you are diagnosed, the road ahead doesn’t have to be walked alone. The Crohn’s & Colitis Foundation offers online support groups as well as information on how to find in-person groups in your area. The foundation also runs a program called Team Challenge, a fundraising effort to not only help provide services to people with Crohn’s disease but also to fund research. “The program has become more than just a fundraising and advocacy effort for me, but an extended family for a shoulder to lean on when times get tough,” Slewinski says. “I’m sure anyone else who has found the organization would say the same thing.”