We shine our spotlight on Crohn’s disease, one of the two most prevalent inflammatory bowel diseases (IBDs). The other is Ulcerative Colitis. These diseases, like the rarer IBDs, are autoinflammatory conditions in which a dysregulated innate immune system damages the intestinal wall. Although Crohn’s disease affects some 780,000 Americans, most of us aren’t aware of the disease. So, this spotlight hopes to raise Crohn’s disease awareness by offering basic education and 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.

“I have been struggling with psoriasis for 36 years, and my daughter was recently diagnosed with Crohn’s. I would love to see cures for both in my lifetime”.

A patient shared the quote above back in 2015 from our survey of autoimmune patients for Stanford Medicine X. Survey participants shared their stories to help raise awareness for this invisible epidemic. Here we are, chugging along in 2020, and a cure that so many patients hope for is still a work in progress. As Your Autoimmunity Connection, part of our mission is to reshape research, diagnosis, and treatment of all autoimmune diseases. While waiting for cures, we are raising awareness for autoimmune diseases.

We strongly believe that there is strength in numbers and in raising awareness as an initial step towards action. Read on to become connected with statistics, research initiatives, support communities, and more. And check out our Facebook page and forum for more Crohn’s-related updates!

What is Crohn’s disease?

Crohn’s disease and Ulcerative Colitis are both Inflammatory Bowel Diseases (IBD). These are autoimmune conditions in which a dysregulated immune system reacts to environmental triggers (food, stress, microbiome imbalances, etc.) causing damage to the intestinal wall. Initially, such damage produces unpleasant intestinal symptoms like abnormal stools and pain. Then, if the disease persists, patients experience systemic effects like weight loss and fatigue. However, IBD symptoms overlap with those in other gut diseases, including Irritable Bowel Syndrome (IBS) and celiac disease. This makes diagnosis difficult and treatment challenging.

Crohn’s can affect any part of the gut, from the small intestine to the large colon, although the likeliest hot spots are in the far end of the small bowel and the near end of the large bowel. As with all autoimmune disease, symptoms wax and wane symptoms that include abdominal pain, bloody stools, severe diarrhea, reduced appetite, unintended weight loss, fever and fatigue. Unlike Ulcerative Colitis, Crohn’s patients have sections of normal intestinal wall interrupted by discontinuous patches of inflammation and damage. There is possibility of more serious complications (bowel obstruction, chronic malnutrition, dehydration, fistulas, ulcers and megacolon), but early diagnosis and careful management of the underlying disease can often minimize these more extreme symptoms.

How many people have Crohn’s disease?

As of 2015, North American prevalence of Crohn’s disease was 319:100,000. This is more than 3 million people. Prevalence is slightly higher in Europe and lower in the rest of the world. Moreover, studies have shown incidence and therefore prevalence increasing in both children and adults since the 1990s. This adds up to a lot of suffering, considering that chronic inflammation of the gut is very unpleasant.

Current available statistics on Crohn’s disease estimate that…

  • About 1.6 million Americans have IBD diagnoses, including roughly 780,000 patients with Crohn’s disease.
  • The peak age of onset appears to be between 10-20 years of age, with a smaller peak around age 50.
  • Between 5-20% of patients with an IBD have a first-degree relative with one as well.
  • Environmental risk factors include smoking, use of NSAIDs, living in northern climates and industrialized countries (although these may rather be genetic influences).

Researchers estimate that 6-15 new cases of Crohn’s disease are diagnosed per 100,000 each year. What’s more, this autoimmune disease appears to be becoming more common in both adults and children, based on data from the United States. Most cost estimates for IBD were made back in 2003-2004. Although the total cost of Crohn’s disease in the US is predicted to be about $3.6 billion each year, it may be even higher.

How is Crohn’s diagnosed?

Waxing and waning symptoms, and that similar GI symptoms occur in other disease make CD hard to diagnose. However, fecal occult blood tests positive for certain biomarkers are suggestive. Nevertheless, endoscopic examination of the bowel is generally needed to confirm IBD.

How is Crohn’s treated?

Today’s treatment regimens include medications: anti-inflammatories, immunosuppressants, antibiotics and antidiarrheals. furthermore, supplements, have moved from fringe to mainstream. The intestinal damage in IBD can make it difficult to absorb enough micronutrients from food alone. Therefore, your provider may advise supplemental calcium, folic acid, zinc, as well as Vitamins A, D., E and K. Recently, the importance of diet for managing IBD’s has moved from functional medicine to a core tenet of disease management. Alternative or functional approaches including lifestyle changes, diet, supplements, and exercise, may help moderate symptoms, reduce flares, and complement or replace the need for pharmaceutical treatments.

Connecting you with available resources

Spotlight on the basics of Crohn’s disease

If you’ve reached this Spotlight and read this far, you may already have some background knowledge about Crohn’s disease. But it can’t hurt to brush up on the basics. For one, Crohn’s is often confused with ulcerative colitis, a similar IBD that only affects the large intestine. Therefore, reading up on the basics can help. The following pages provide a comprehensive overview of Crohn’s:

Beyond the basics – diving in deeper

For anyone affected – find your support community

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:

What is one thing everyone should know about Crohn’s disease?

When looking at the big picture, we must remember that Crohn’s disease 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.1

We hope that shining the spotlight on Crohn’s disease 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 statistics that hide 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 Crohn’s disease incidence, prevalence, and more. Some of these “fast facts” you may be familiar with, but others may surprise you.

Autoimmune disease is an “invisible epidemic.” Despite affecting roughly 16% of the US population (as many as cancer), autoimmune and other chronic inflammatory diseases remain under-recognized, under-researched and under-served. In order to raise awareness and connect patients, families and caregivers with useful resources, we at Your Autoimmunity Connection publish this series of “spotlights” on autoimmune diseases.

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.

More from Your Autoimmunity Connection

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[1] Cojocaru, M, Inimioara Mihaela Cojocaru, and Isabela Silosi. “Multiple Autoimmune Syndrome.” Mædica 5.2 (2010): 132–134. Print.

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