Chronic, painful, and often life-altering, IBD affects millions of children and adults in the United States. Due to the complicated factors influencing each person’s IBD, the often unpredictable and debilitating course of disease, and resulting physical, emotional, psychosocial, and financial impact, IBD patients and their loved ones have unique concerns and needs. No other Texas based organization serves these needs through groundbreaking programs in research, education, support, advocacy, and awareness – designed to cure IBD and improve the lives of patients.
Our Needs
IBD can be unpredictable and debilitating, leading to a decreased quality of life for patients. It is not uncommon for patients with IBD to have two dozen bowel movements per day or to take as many as 20 pills per day to manage these diseases. Symptoms of IBD can lead to reliance on medications not recommended for long-term use and hospitalizations. Over time, patients may develop complications from surgeries or ongoing and uncontrollable inflammation that create new and compounded difficulties. 70% of Crohn's patients, and up to a third of patients who have had colitis for 30 years or longer, will require surgery which may involve removal of sections of the intestinal tract, complete removal of the colon, and the creation of temporary or permanent ostomies. 18% of patients may develop colorectal cancer by the time they have had IBD for 30 years. As IBD is commonly diagnosed earlier in life, these complications are likely to occur within a patient's lifetime.
Treatment options are limited. Medications may work for one patient but may not work for another exhibiting similar symptoms. Medications may also stop working and lead to flares of disease activity, leading to surgeries to remove the inflamed parts of the small intestine or colon. Currently, anti-TNF therapy is considered first-line treatment for moderate to severe disease, but up to 80% of patients do not respond or lose response to these therapies.
Many patients suffer in silence, feeling isolated and alone. According to a large-scale study funded by the Foundation, 42.6% of patients had at least one mental health diagnosis, with common diagnoses being depression, anxiety, adjustment disorders, substance use disorders, and bipolar and related disorders.
Foundation-funded research has determined that factors in the gut microbiome, genes, and the environment interacting with the immune system influence the onset, course, and severity of each individual's disease. The complexity of IBD, the increasing number of patients, and the accompanying physical, psychosocial, emotional, and financial burdens demand the exploration of every potential therapeutic opportunity.