Twenty-four-year-old Lauren began experiencing excruciating intestinal pain in June 2012. Two months later, as she was facing the removal of portions of her small and large intestines, Lauren was diagnosed with Crohn’s disease. Sitting by her side in the hospital and standing by her in the years that followed her diagnosis were her parents, grandfather, brother, sister, boyfriend, five best friends, gastroenterologist, surgeon, physician’s assistant, and nutritionist. These 15 individuals make up Lauren’s core support system — the people who, while they may not have the disease themselves (although some do), are affected by her incurable debilitating disease.
More than 1.6 million Americans live with Crohn’s disease and ulcerative colitis, the two chronic diseases that fall under the inflammatory bowel disease (IBD) umbrella. Crohn’s disease may attack anywhere along the digestive track, while ulcerative colitis is limited to the large intestine (colon) and rectum. Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, fever, weight loss and fatigue, and many patients require numerous hospitalizations and surgeries. These diseases impact every facet of a patient’s life — physical, emotional, and financial. Because of the nature of these incurable diseases, support systems, like Lauren’s, are critical in helping patients cope with living with these lifelong illnesses.
Merriam Webster defines a support system as “a network of people who provide an individual with practical or emotional support.” Support systems are individual to each patient, but may include family members, friends, colleagues, doctors, and nurses. The number of people in an IBD patient’s support system range — some may have only a few people while others may have upwards of 15 or more people. That means that, including patients, there may be between 10 and 20 million individuals in the United States affected by Crohn’s disease and ulcerative colitis — up to 6 percent of the U.S. population.
These numbers do not take into account that Crohn’s and colitis often have complications that occur outside of the digestive tract. In 25 to 40 percent of IBD patients, the classic signs and symptoms of IBD may be accompanied by symptoms in the eyes, joints, skin, bones, kidneys, and liver. In fact:
- As many as 30 percent of people with Crohn’s disease or ulcerative colitis will experience arthritis, causing swelling of the joints and a reduction in flexibility.
- An estimated 30 to 60 percent of IBD patients have lower-than-average bone density, in some cases leading to osteoporosis, osteopenia, or osteomalacia.
- Up to 20 percent of IBD patients develop skin disorders, including rashes, skin tags, ulcers, and lesions.
- Approximately 10 percent of patients with inflammatory bowel diseases experience eye problems, including inflammation of the uvea, episclera, retina, or optic nerve, and dry eyes.
When these complications occur, more individuals are added to a patient’s support network. Take Jaime — now 34 years old, she was diagnosed with Crohn’s disease 10 years ago but was sick for years prior to her diagnosis. When first asked who was in her support system, Jaime immediately included her parents, boyfriend, and friends, for a total of eight people. In reality, her network is much larger than that.
In addition to Crohn’s disease, Jaime lives with psoriasis, enteropathic arthritis, arrhythmia, chronic hives, Hashimoto’s disease, and lymphocyte clusters. To treat these conditions, Jaime sees a primary care physician, endocrinologist, cardiologist, rheumatologist, allergist, dermatologist, and otolaryngologist, in addition to her gastroenterologist. That brings her support system up to 16 people from all parts of her life who play a key role in providing her with the support she needs while living with a complex, incurable disease.
With the complicated nature of Crohn’s and colitis, and the potential for symptoms throughout the entire body, it is obvious why support systems play such a critical role in the lives of IBD patients.
Join us December 1-7 for Crohn’s & Colitis Awareness Week. During this week, we must shift the conversation toward understanding that IBD is a debilitating disease that affects not only patients, like Lauren and Jaime, but also all those who support and care for them. By doing this, we can end the stigma surrounding digestive diseases and become more #IBDAware and educated about Crohn’s disease and ulcerative colitis.
Are you #IBDAware? Help raise awareness of Crohn’s disease and ulcerative colitis by joining our Thunderclap or asking your legislator to join the Congressional Crohn’s & Colitis Caucus. For more information, visit www.ccfa.org or email info@ccfa.org.