We shine our spotlight on Ulcerative Colitis (UC), one of the two most prevalent inflammatory bowel diseases (IBD). The other is Crohn’s disease. These are both considered autoimmune conditions in which a dysregulated adaptive immune system damages the intestinal wall. Notably, of the 1.6 million Americans who have an inflammatory bowel disease, around 900,000 have Ulcerative Colitis. Consequently, this spotlight hopes to raise UC awareness by offering basic education and links to further resources. We intend this not only for autoimmune patients, their caretakers, families and friends, but also for benefits managers and entrepreneurs building companies to address GI diseases.
“My daughter was diagnosed with ulcerative colitis at age 5, now 6. I am a physiotherapist working in MSK, occasionally treating RA. In my previous ‘life’ I was a biochemist. My daughter’s diagnosis and subsequent reading made me re-think my view of health and disease. I have been mostly disappointed with her treatment.”
Anonymous patient via YAC Stanford Medicine X Survey 2015
What is ulcerative colitis?
Characterized by continuous inflammation, ulcerative colitis exclusively affects the large intestine. In contrast to Crohn’s disease, which can affect any section of the gut with inflamed patches of tissue. In the IBDs, the patient’s adaptive immune system reacts to unidentified antigens. These may be protein components of ingested food, commensal microbes or even self-cells of the intestinal lining. In any case the immune system sends in white blood cells that inflame the intestinal lining. If this inflammation continues chronically, it causes intestinal wall damage, sometimes so severe that it leads to surgical removal of part of the bowel.
Accordingly, symptoms tend to develop gradually and vary depending on where the bowel is inflamed and how severe it is. About half of patients with UC experience mild symptoms, the rest more serious. For example, typical symptoms include urgent bowel movements, diarrhea (sometimes with blood or pus), abdominal pain and cramping, weight loss, and fatigue.
In particulars, factors such as specific foods, lack of sleep and stress may trigger symptoms, which tend to come and go with flare-ups between periods of remission. Ulcerative colitis can be inherited from family members and exacerbated by stress and diet, but the ultimate cause is still unknown.
UC statistics and facts
- About 1.6 million Americans are diagnosed with inflammatory bowel disease (IBD), including roughly 900,000 patients with ulcerative colitis.
- The disease is most often diagnosed between the ages of 15-35. There is no sex difference, males and females are affected a roughly equal rates.
- North America and high-latitude countries with large anglophone populations have much higher prevalence.
- Ulcerative colitis is more common in whites, specifically those of Ashkenazi Jewish descent.
- Between 5-20% of patients with an IBD have a first-degree relative with one as well.
Most cost estimates for IBD were conducted back in 2003-2004, so the total cost of ulcerative colitis in the US, predicted to be about $2.7 billion each year, may likely be even higher. On average, yearly medical expenses are $7,948 per patient, mostly due to hospitalization.
Causes and factors influencing UC
With both genetic and environmental influences contributing to onset, pinpointing precise causes of this disease can be challenging. While the Crohn’s and Colitis Foundation, along with other leading organizations, work towards reevaluating the current state of ulcerative colitis, our team at Your Autoimmunity Connection is connecting patients with one another and with currently available resources.
How is ulcerative colitis diagnosed?
A health care provider uses multiple sources of information to diagnose ulcerative colitis, including medical and family history, physical exams focused on the abdomen, blood and stool tests, and endoscopies of the large intestine such as a colonoscopy or flexible sigmoidoscopy.
We strongly believe that there is strength in numbers, and strength in raising awareness as an initial step towards action. Read on to become connected with available statistics, research initiatives, supportive patient communities, and still more resources. Additionally, you can check out our Facebook page and forum for more ulcerative colitis-related updates!
The good news for those of you reading this – whether you are affected by ulcerative colitis, have a loved one who is affected, or are simply generally interested – is that the recent rise in understanding from alternative approaches includes that lifestyle changes, including diet, supplements, and exercise, may help moderate symptoms, reduce flares, and complement or replace the need for pharmaceutical treatments.
Connecting you with available resources
Brush up on the basics of ulcerative colitis
If you’ve reached this page and read this far along, chances are high that you already have at least some background knowledge about ulcerative colitis, but it can’t hurt to brush up on the basics. Since ulcerative colitis is a type of inflammatory bowel disease (IBD) it is often confused with Crohn’s, a similar IBD that affects any part of the gastrointestinal tract from the mouth to the anus rather than just the lining of the colon. As a result, reading up on the basics can help minimize such misconceptions. The following pages each provide a comprehensive overview of ulcerative colitis:
- Mayo Clinic: Ulcerative Colitis
- Delve beyond a general overview to learn about root causes, risk factors, potential complications, and more.
- Crohn’s & Colitis Foundation: What is Ulcerative Colitis?
- Recognize the most common signs & symptoms.
- Crohn’s & Colitis: Understanding Ulcerative Colitis
- Differentiate between ulcerative colitis and Crohn’s disease, as well as between IBD versus IBS (irritable bowel disease versus syndrome).
- Cleveland Clinic: Disease Management – Ulcerative Colitis
- Understand the natural history, pathophysiology, and common treatments.
Beyond the basics – diving in deeper
- Everyday Health: An A-Z Guide to Ulcerative Colitis
- Learn about everything from medications, to diet, to how to prep for a colonoscopy.
- Cleveland Clinic: Ulcerative Colitis Resources
- Connect with related institutes, services, and health information
- Mayo Clinic: Departments & specialties
- See which departments are treating and researching this condition
- Milken Institute: IBD Guide
- Check out this comprehensive guide to IBD
For anyone affected – find your patient community
- Crohn’s & Colitis Foundation: Support groups & Peer-to-peer support
- Connect with people in your local community, or by email, phone, or Skype, or visit the Crohn’s & Colitis Foundation Help Center
- Facebook Support Groups
- Connect online with other patients to receive and offer helpful knowledge and support. A quick search will yield several options, but the patients in these forums seem to be particularly active and engaged:
Spotlight on Ulcerative Colitis research
We’ve picked out a few of our favorite research resources – get caught up on recent findings, informed of future directions, and tap into your potential for involvement as a patient:
- ScienceDaily: Ulcerative Colitis News
- Explore the latest ulcerative colitis-related headlines & research news.
- Mayo Clinic: IBD Blog
- Browse the latest advances in Crohn’s and ulcerative colitis.
- Nature: Latest Research and Reviews
- Check out another source for ulcerative colitis research.
- Crohn’s and Colitis Foundation: Explore Research
- Read about the foundation’s current research studies.
What is one thing everyone should know about ulcerative colitis?
When looking at the big picture, we must remember that ulcerative colitis falls within the larger category of IBDs and autoimmune diseases, of which there are over 100 individual diseases. The American Autoimmune Related Diseases Association (AARDA) estimates that 50 million Americans suffer from one or more autoimmune diseases. What’s more, a research study estimated that approximately 25% of patients with autoimmune diseases have a tendency to develop additional autoimmune diseases.
Generally, we hope that shining the spotlight on ulcerative colitis this month connects you with beneficial resources and information, but we would like to emphasize the need to take a holistic approach in tackling the autoimmune disease epidemic. By looking at all autoimmune diseases together, we can move away from the fragmented view that hides the magnitude of the problem and towards concerted action in reshaping research, diagnosis, and treatment. Additionally, our model is the revolution in cancer research and treatment that has come from viewing cancer as a group of diseases with common etiologies, thus garnering more resources than individual types of cancer.
Where did we get these data, and where can you find more?
The following pages present statistics surrounding ulcerative colitis incidence, prevalence, and more. Some of these “fast facts” you may be familiar with, but others may surprise you.
- Cleveland Clinic: Crohn’s and Ulcerative Colitis – By the Numbers
- Center for Disease Control and Prevention: Epidemiology of the IBD
- IBD.net: Ulcerative Colitis Statistics
Written by: Bonnie Feldman, DDS, MBA, Anna Simon, Ellen M. Martin
Get acquainted with Your Autoimmunity Connection
Chronic inflammatory disease, a category that includes autoimmune and autoinflammatory diseases, is an invisible epidemic. Despite affecting roughly 16% of the US population (more than the percentage of Americans who live with cancer), autoimmunity remains under-recognized, under-researched and under-served. At Your Autoimmunity Connection we work to raise general awareness as well as connect patients and their families with valuable resources. Consequently, we publish this series of “Spotlights” on autoimmune diseases.
All in all, chronic inflammatory diseases are high-beta, high-risk and high-cost to payers and providers, especially for employer-sponsored health care benefits programs. Therefore, our spotlights offer useful background for benefits managers and digital entrepreneurs building companies and products addressing these diseases.
- Check out our blog at www.drbonnie360.com for all things autoimmune – from updates in research to possible lifestyle modifications, patient stories, and more.
- Find us on Facebook here, or join our Facebook Forum to connect with patients across all autoimmune diseases.
- Read our patient guide on How to Achieve Your Optimal Wellbeing
- Read our Guide to Movement Therapy
- Check out our other spotlights here
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[1] Cojocaru, M, Inimioara Mihaela Cojocaru, and Isabela Silosi. “Multiple Autoimmune Syndrome.” Mædica 5.2 (2010): 132–134. Print.
