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Community Experience Submitted by Gali Member
Jun 29, 08:06 PM

Coping with the unique mental health challenges of IBD

By Sara - Gali Ambassador

It is not an uncommon phenomenon for patients living with Inflammatory Bowel Disease to struggle with mental health issues. When you lose out on life opportunities because of Crohn’s and Colitis, it can lead to unproductive mental health manifestations.

For me personally, I live with severe ulcerative colitis and a permanent ileostomy. I was diagnosed rapidly with UC at the age of 24 and was relatively healthy before then. It became quite apparent after diagnosis that the mental health and physical health worlds are two very separate entities. My gastroenterologists and other specialists involved in my care never seemed to ask me how I was doing. I understand that physical health doctors are not trained extensively in mental health, however, there is power in the question, “How are YOU doing?”

Living with any chronic illness will come with its obvious set of mental health challenges. No one wants to be sick. It’s not fun being sick. You miss out on so much social interaction when you have a chronic condition. However, I feel that the mental health impacts of IBD are very unique and specific when compared to other diseases.

When someone loses their job due to illness, mental health can decrease rapidly. However, when an IBD patient loses their job due to their disease or misses ample amounts of school because they are stuck in the bathroom…well, that really wears on a patient. To not be able to complete tasks because of frequent painful bowel movements controlling your life is something we must continue to talk about. I feel many are embarrassed to do so, which further exacerbates the mental health problems in our IBD community.

It all comes back to the stigma of talking about Crohn’s and Colitis and the “unpleasant nature” of our symptoms. Many IBD patients are embarrassed for obvious reasons— this disease comes with frequent bathroom trips, urgency and accidents out in public leading to social isolation/agoraphobia, rectal bleeding, ostomy bags, nausea and vomiting, inability to eat and drink foods than most can, debilitating pain and fatigue, and the list continues.

If we add this stigma of not talking about living with IBD to the challenges of how it manifests within us (such as losing your career position due to Crohn’s) then we only continue to fester poor mental health. Unfortunately, I do not know many patients with severe IBD that have stellar mental health, and I think we can do better as a community to talk about these complex issues and let others know they aren’t alone. There’s not much we can do to change our symptoms or the reality of being an IBD patient, but what we do have control over is being a support system to one another, and educating the public on what it’s like to live with these debilitating digestive autoimmune diseases.

It’s been hard being someone in their mid-to-late twenties relying on government assistance for health insurance and food benefits, continued unemployment due to the unpredictability of our disease, denials from disability because I’m “not sick enough”, losing friends, having accidents when I leave the house, and the list goes on. However, I have been able to manage these challenges by seeing awesome Crohnie’s my age on social media sharing their similar life struggles that manifest socially, psychologically, financially, and physically. There is power in numbers and relating to others can be a life-saving tool.

We are in this together, and if you are able to, share your IBD story. The more I’ve been open about my journey, the more people have responded positively. Even if individuals can not relate to your experience, you have now educated them about living with IBD, and that is the ultimate goal.

For more information and tips on living with inflammatory bowel disease from the medical and patient communities, download the Gali friend for IBD mobile app and she will create a personalized feed of articles just for you!

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