We Are Family: The Benefits of Community When Dealing with IBD

Living with Crohn’s disease or ulcerative colitis can make a person feel alone and trapped inside their own dysfunctional body. The emotional toll of my own colitis struggle overwhelmed me and made me wonder if others felt the same.

Back in 2020, I lived in a world of isolation. No, I wasn’t physically alone. My household consisted of three people in total. But even with a husband and son who saw my pain and constant time spent in the bathroom, I still felt isolated.

Searching for others with IBD

One day, during a COVID stay-at-home order, I did a little online search. I remember specifically typing in the search criteria “people who struggle with ulcerative colitis.” After scrolling through a few websites, I found one that said, “Share Your Story”. That’s when the idea was born to write about one of my gazillion embarrassing stories of living with colitis.

Since I’d been living with IBD for nearly 40 years, I knew I had plenty of stories to share. The good, the bad, and the downright ugly. Okay, maybe not so much “good,” but the good was on its way.

So, I began to clickety-clack on my keyboard and wrote out my first story. As a first writing attempt, it was roughly written. I wrote about when I was trying to shop at Christmas with my son when he was little. As most often happens, my colitis decided to kick in, and I ended up in a public restroom whose commode wouldn’t flush. It was a horrifying but also humorous account of life with a toddler at the time and the unexpected nature of ulcerative colitis.

Opening my secret colitis vault

But the benefit of typing out even my awkwardly written account did something. It made me feel a sense of…relief. As strange as it might sound, the act of writing out one horrific colitis flare brought a feeling of, “Wow! I feel better!” In short, I felt a momentary reprieve from the “slings and arrows" of outrageous ulcerative colitis.

At that time, I did my best to “edit” the story. I tried cutting it down. It was way too long. I also tried taming down the language. I was way too brash. Once I did my best to correct the story, I emailed it to the online community I had stumbled upon during my earlier research.

Then, I waited. During this waiting period, I still felt good. It felt good that I had openly taken a leap to share my story with others. Whether the story was published or not, that didn’t matter. I had opened my secret colitis vault, and I continued to write about more of my experiences.

What I was missing in my journey

As it turned out, the “Living with Colitis” forum messaged me about my story. They wondered if I would like to become a “patient leader.” Through writing, I had discovered that I was ready to open up and share my experiences with others. Becoming an advocate resonated with me because I had travelled many decades alone with this disease.

I realized that I wanted to become what was missing in my health journey: an advocate.

Even though medical care ranks as a priority, the emotional and social support of IBD stands as another important factor. Joining a community forum offers many benefits that I once had missing in my life. Here, I would like to share the benefits that can be gained in our community at InflammatoryBowelDisease.net:

1. Emotional support and understanding

In our community, you can share your current health status in the “How Are You Feeling" section. Just type in your status and let us know what is going on with you and your health. To avoid feeling isolated and alone like I once felt, you can reach out and share how your colitis or Crohn’s is doing. You can write as little or as much as you’d like. Someone who has walked a similar path will offer you relief and validation, for everyone in the community has “been there, done that”.

2. Access to trending health topics and current research

Many health leaders and community members offer up-to-date information about Crohn’s and colitis research, new medications, and health treatments. An editorial team shares the latest research articles and other members tell stories about their own health journey. You can hear from those taking the latest medications or from those who have stepped onto a path of alternative health therapies. Our community offers news and details that can become a valuable resource as you navigate your own medical journey.

3. Meet others with IBD

By clicking on “Meet Other Community Members”, you can read and follow other members who understand and live with IBD like you do. Creating a bond of shared understanding offers everyone an opportunity of mutual support. This bond is especially vital during the most challenging times. In short, you can create a support network that forms its own sort of “family”.

4. Share your story safely

In our forums, you can share your story and health concerns anonymously. We offer a safe space to write about mental health struggles, medication side effects, gastrointestinal symptoms, intimacy issues, or any other personal concerns IBD-related. I believe the ability to remain anonymous presents an avenue of open communication, which can help reduce any anxiety or fear of sharing personal information.

5. Find motivation and hope from shared experiences.

Because managing IBD is both physically and emotionally exhausting, a community forum like ours offers stories of hope and resilience. These stories can be especially important during the flare-ups and during times of uncertainty. Reading stories from others with shared experiences can be helpful, educational, and motivating.

While our journeys don’t replace a professional medical team’s advice, these articles can be useful in providing ideas that you can take to your healthcare team. We always remind everyone to consult with a physician before trying any new treatment or therapy. But being able to comment and ask questions to our members can provide you with motivation and hope as you navigate the ups and downs of IBD.

Impact on my quality of life

Four years later, I still love reading other community members’ stories and sharing my own successes and failures. The emotional and social support found in this community plays a crucial role in improving my personal quality of life. It can do the same for you, too. Joining a community forum offers so many benefits by connecting with those who also walk in your shoes. The sense of belonging, the practical advice, and, most importantly, the encouragement makes this community more than just another website. It offers a family of support and understanding.

Are you new to this community? If so, please share your comments about what motivated you to join our family of support.