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11 Ways That Crohn’s And Colitis Can Feel Like Invisible Diseases

Tired of hearing "But you don't look sick...?" Participate in Crohn's and Colitis Awareness Week and be #IBDvisible.

Crohn’s & Colitis Foundation
by Crohn’s & Colitis Foundation

Brand Publisher

More than 1.6 million Americans live with Crohn’s disease and ulcerative colitis. They may look healthy on the outside, but that doesn’t mean they aren’t in pain.

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These are what's known as invisible illnesses, and they present unique challenges to people who live with them.

1. In many ways, Crohn’s and colitis are invisible illnesses and present unique challenges to those living with them.

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When family, friends, or colleagues can’t see physical evidence of a disease, they sometimes question its legitimacy. People with Crohn’s and colitis are used to hearing “It must be in your head!” when they may be in debilitating pain.

2. These diseases can have a huge impact on a person’s mental health.

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Crohn’s and colitis patients have a higher rate of depression than those without it, and it may go undiagnosed and/or untreated. On top of that, patients might also experience feelings of guilt, uncertainty, anxiety, isolation, and general stress as a result of their disease.

3. Not to mention people with Crohn's and colitis may suffer from debilitating fatigue...

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For some patients, this is the worst of the invisible symptoms they could experience. On super-bad days, even walking from one room to another can be too much. Fatigue can be so harsh that studies have shown IBD patients consider it as problematic as their stomach troubles.

4. ...as well as crippling pain, both in and out of the gut.

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5. All of this makes living a normal life difficult — and it's especially hard to travel or break routine.

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Crohn’s and colitis patients often feel the impact of the diseases in all facets of their lives – relationships, employment, school, and more. Patients may take extra precautions before trying new things or leaving on trips, and that can be hard to explain in social settings.

6. Because people with these diseases can experience a variety of debilitating symptoms, including bowel urgency.

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Many patients deal with bouts of urgency — an immediate need to use the bathroom or risk having an accident — which can be a constant source of worry.

7. They’re also at a high risk for nutritional deficiencies.

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In people with Crohn’s and colitis, disease symptoms may interfere with the digestion and absorption of nutrients. This can result in malnutrition and a variety of other nutritional deficiencies, growth delays, and decreased bone density.

8. On top of all that, there’s the possibility of serious complications.

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Some patients with Crohn’s and colitis develop serious complications that may require urgent medical care. Between 25% and 40% of IBD patients experience disease manifestations in organs outside of the gut, most commonly in the eyes, joints, skin, and bones. Disease complications also arise within the GI tract, and may include abscesses, fistulas, fissures, colorectal cancer, and more.

9. As well as body image issues that many sufferers face.

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Weight gain associated with prolonged steroid use, weight loss, and surgical scars can all make it difficult for patients trying to feel comfortable in their own body.

10. Dealing with all of this can lead to increased stress...

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...which can have a major impact on every facet of life and may contribute to flare-ups of disease symptoms.

11. And part of that stress can come from feeling like the suffering is unseen.

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That's why it is so important to help raise awareness and understanding of the invisible nature of these incurable digestive diseases.

Join the movement and be #IBDvisible. Share your story during Crohn’s & Colitis Awareness Week.

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All facts from CCFA. This post is supported, in part, by sponsorships from AbbVie, Janssen Biotech, Inc., Pfizer Inc., Sigma-Tau Healthscience USA, Inc., Takeda Pharmaceuticals USA, Inc., and UCB, Inc. .