Written by: Bonnie Feldman, DDS, MBA, Anna Simon, Ellen M. Martin
“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.”
A patient shared this quote with us back in 2015, when we surveyed autoimmune patients at Stanford Medicine X and shared some of their stories to help raise awareness for this “invisible” epidemic. Here we are, chugging along in 2018, and this cure that so many patients hope for is still a work in progress.
We have referred to autoimmune disease in the past as an “invisible epidemic” — despite affecting roughly 16% of the US population, autoimmunity remains largely underserved and under-researched. To combat this lack of awareness as well as connect patients and their families with valuable resources, our team at Your Autoimmunity Connection has developed a series of “spotlights” on individual autoimmune diseases. This time, ulcerative colitis takes the stage.
What is ulcerative colitis?
This month, we shine our spotlight on ulcerative colitis, an inflammatory bowel disease that is a manifestation of dysregulated immunity. The two most common inflammatory bowel diseases are Crohn’s disease and ulcerative colitis — of the 1.6 million Americans who have an inflammatory bowel disease, around 900,000 have ulcerative colitis.
Characterized by inflammation and ulcers in the colon, ulcerative colitis exclusively affects the large intestine, unlike Crohn’s, which can affect any section of the gut. Inflammation occurs because the immune system treats food and other materials as foreign invaders, sending white blood cells in to attack the intestinal lining. Symptoms tend to develop over time and vary depending on where the inflammation occurs and how severe it is. About half of patients with UC experience mild symptoms, the rest more serious: urgent bowel movements, diarrhea (sometimes with blood or pus), abdominal pain and cramping, weight loss, and fatigue. Factors such as diet and stress seem to aggravate 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.
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. And check out our Facebook page and forum for more ulcerative colitis-related updates!
What do the numbers show?
Current available statistics estimate that…
- 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.
- Between 5-20% of patients with an IBD have a first-degree relative with one as well.
- Ulcerative colitis is more common in whites, specifically those of Ashkenazi Jewish descent.
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.
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.
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. 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:
- Crohn’s & Colitis Foundation: Support groups & Peer-to-peer support
- Ulcerative Colitis Support Group
- Crohn’s & Ulcerative Colitis Life Support
What’s happening in 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.
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. 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 this 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
Get acquainted with Your Autoimmunity Connection
- 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
 Cojocaru, M, Inimioara Mihaela Cojocaru, and Isabela Silosi. “Multiple Autoimmune Syndrome.” Mædica 5.2 (2010): 132–134. Print.