How the IBD Community Changed My Life

I don’t remember a whole lot about when I was first diagnosed with Crohn’s disease. I was 13-years-old and it was all very overwhelming, and most of the decisions went through my parents. I remember being really sick; I remember spending a month in the hospital; I remember trying to fit back in with my friends while feeling that nobody could understand. I don’t know exactly what kind of resources we were given for understanding and adapting to life with IBD, but I do know there was no overt encouragement to talk with somebody else who had been through the same thing that I was going through. And if there were opportunities for getting involved in the IBD community, it was most likely written on a pamphlet somewhere, buried in a mountain of information and medical history.

Reaching out to others in the IBD community

It would be 13 years of living with Crohn’s disease before I finally started reaching out. When faced with surgery, I started blogging my story at The Stolen Colon as a way to help process what I was going through and as a way to feel less alone. I had become used to dealing with IBD alone, but once a major change like surgery came up, I felt the loneliness again. Blogging was my first major step in becoming a part of the community that’s out there, and since then, I have realized the true value of knowing that I am not alone and being a part of something bigger than just me.

It truly changed my world once I got involved in the IBD community. I met others who had been on a similar journey. I saw people with very different stories, and realized how many ways these diseases can impact people. I have felt the catharsis of sharing the struggles I have been through with people who can relate. I have received advice from people who’ve been through it before. I have learned new ways of coping with everything these diseases bring. And one of the greatest parts of these relationships is the bond that’s formed because it’s different than most other relationships. There’s something deeper there, a sort of understanding that’s rare.

We live in an incredible time where we connect with almost anybody. We don’t have to find somebody who lives in a 20-mile radius of us. In an instant, we can connect with people from all over the world and all different walks of life. At no other time in history would the communities we have formed been possible.

The impact of the IBD community when newly diagnosed

And now, I believe that getting involved in this community is one of the most important things that you can do after you’ve been diagnosed with IBD. When I look back on those 13 years that I went through this all alone, I wonder how different it would have been to have somebody else there to walk alongside. I am so thankful for the people in my life now, both physically and online, to whom I can go when issues arise or to vent about a symptom or to tell a story that only they will appreciate. The journey may still be hard, but their company helps me keep going.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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