Co-authored with Stephanie Hughes
Dec. 1 marked the start of Crohn's and Colitis Awareness Week, a week dedicated to educating the public about Crohn's disease, ulcerative colitis and indeterminate colitis and how these diseases affect patients and the loved ones that support them.
Approximately 1.4 million Americans live with inflammatory bowel diseases. According to the Mayo Clinic:
IBD involves chronic inflammation of all or part of your digestive tract. IBD primarily includes ulcerative colitis and Crohn's disease. IBD can be painful and debilitating, and sometimes leads to life-threatening complications.
These diseases have been known primarily as "pooping diseases" because many patients frequent the bathroom as a result of the cramping and abdominal pain caused by IBD. However, there are many aspects of the disease that are far worse than spending time in the bathroom.
Here are 10 things you didn't know about IBD:
IBD patients often take many medications with powerful side effects.
Patients with IBD often depend on medication to control the inflammation and pain caused by their disease. Medications commonly used include antibiotics, anti-inflammatories, steroids and immunosuppressants.
While beneficial, these medications can cause side effects including nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.
IBD causes extraintestinal issues.
Crohn's disease and ulcerative colitis can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.
IBD can have significant impact on the mental health of patients.
According to Oak Park Behavioral Medicine, about 25 percent of people with IBD will experience depression even when in remission, and that number rises to 60 percent during a flare. Outside of depression, the Crohn's and Colitis Foundation of America reports that patients with IBD often experience anxiety, denial, dependence, stress and poor self-image.
Having IBD is exorbitantly expensive.
The annual direct cost of Crohn's disease and ulcerative colitis in the United States is estimated to be $6.1 billion. A recent study showed that the mean annual cost for a patient with Crohn's was $8,265 and for ulcerative colitis was $5,066. Each patient's situation differs, but the most common costs of IBD include diagnostic tests, hospitalizations, surgery and medications, some of which can cost as much as $10,000 per dose.
Many IBD patients have made a trip to the emergency room or been hospitalized.
Emergency room visits and hospitalizations are common for patients with Crohn's disease and ulcerative colitis. These hospital visits can range in severity depending on the problem. Common reasons for hospital trips are dehydration, fevers, blockages, abscesses and fistulas.
Ironically, while these trips are necessary, hospitals can be dangerous places for patients with IBD, who are often immunosuppressed, and can put them at risk of contracting infections.
Patients with IBD often require surgery to treat the disease.
CCFA estimates that about 23 to 45 percent of people with ulcerative colitis and up to 75 percent of people with Crohn's disease eventually require surgery to treat the disease. For patients with mild and moderate forms of IBD, bowel resections and strictureplasties can be used to remove scar tissue and strictures.
For patients with more severe cases of IBD who are unable to control symptoms with medication, the removal of the colon, in part or entirely, may be necessary. The result is usually a colostomy or ileostomy where the small or large intestine is connected to a spot on the patient's stomach (the stoma) and waste is removed from the body into an ostomy bag. Patients with ulcerative colitis may have the option of reconnecting the small intestine with the rectum to form an internal j-pouch.
IBD patients have significant diet problems.
Diet can have a significant effect on IBD patients. Many patients will find certain foods can "trigger" symptoms and pain. Avoiding these foods may ease the symptoms, but won't heal the underlying inflammation. Some patients find relief in avoiding high fiber, high residue foods that are more difficult to digest.
At this point, there is no medical proof that diet can cure these diseases, but some patients have found they can control their symptoms through a careful and restrictive diet. For other patients, however, diet change may have no effect on their symptoms.
IBD patients often live with pain throughout their lives, both internal and external.
The inflammation along the digestive tract is often a major source of pain for IBD patients. As digested food moves past the inflammation, it will often irritate the intestinal lining and cause bleeding and pain. Even gas moving through the intestines can cause severe pain. Ulcers or open sores can appear anywhere throughout the digestive tract, from the mouth to the anus. Additional sources of pain can come from the extraintestinal issues that are associated with IBD, like arthritis and skin rashes and ulcerations.
There is no cure for IBD.
There is currently no cure for Crohn's disease. Patients may experience periods of remission where the disease isn't active but once diagnosed, they will live with the disease for their entire life.
Patients with ulcerative colitis can be cured by surgery. According to Dr. Deborah Proctor, medical director of Yale University School of Medicine's Inflammatory Bowel Disease Program, surgery will remove the inflammation caused by the disease, but it will not change the underlying inflammatory disorder and patients can suffer from other complications throughout their life.
Some IBD complications can be fatal.
Crohn's disease and ulcerative colitis are rarely fatal in and of themselves, but there are many complications from these diseases that can be fatal. Potentially fatal complications include colorectal cancer, chronic obstructive pulmonary disease, bowel perforation, sepsis, toxic megacolon, diseases of the genital and urinary tracts, malabsorption, malnutrition and surgical complications.
Crohn's and Colitis Awareness Week runs from December 1-7, 2013. Help raise awareness by posting on Facebook and Twitter using #IBDAwarenessWeek.