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person holding up a colon while a stomach and small intestines flies towards them like a wrecking ball

The Pain of Re-Diagnosis

This is a topic I haven’t hit on a lot because I’m honestly still trying to navigate it and understand it myself. But I also realize the importance of it because I know so many people are facing this same situation and battling with the exact same feelings and emotions as I am.


I’m not even sure if this is the “technical” name for it, but it’s what I call it. Originally, at the end of 2009, I was diagnosed with ulcerative colitis. This was long after I began experiencing symptoms, but then they finally caught it. That was a huge struggle in itself. I always knew I was different. My naps were 10, sometimes 12 hours long. I was constantly tired. Always in pain. Always using the bathroom. Always seeing blood. I know I was different, but having a name for it was the shocker. You would think it’d be a stress reliever, but it actually wasn’t. It served as confirmation that I would never be “normal.” It was like a constant reminder that I’m sick and no matter how hard I tried, this would be another thing lingering over my head.

Accepting my UC diagnosis

But with time and much effort, I adjusted.

I became accustomed to my new normal. Although I didn’t like it, I understood how my body operated and adjusted my life accordingly. If that meant isolating myself to avoid embarrassment, then that is just what I had to do. Over the years, things changed, at times for the better, other times for the worst. I adjusted every time. After my surgeries, I felt like I had an entirely new body. As if I was living inside a body that was not my own. What did I do? Adjust. Every single time, I changed my life to fit my new normal. Every single time.

This was different.

A new diagnosis of Crohn’s disease

Before my original diagnosis of ulcerative colitis, I knew something was wrong. I could feel it. Although doctors would tell me otherwise, I knew my body was suffering. This was different. I knew my body was suffering, I knew something was wrong, but I always assumed it was ulcerative colitis * or as IBD specialists call it post-colectomy * “IBD in general.” I knew that my j-pouch was inflamed. I knew my body was unhealthy, but discovering I had Crohn’s disease was a complete shock. It’s hard to explain how I felt. It’s almost like a letdown, but in ways, like a smack in the face. It felt like I’d been living a lie almost, but discovering the truth hurt so much more.

Months post my new diagnosis and almost 10 years post my original, I can truly say, IBD is so unpredictable. You must adjust to the fact that you will never know it all. You will never know everything about your condition, nor will you ever know everything about your body. When I got my Crohn’s diagnosis, to say it came as a shock is an understatement. I thought I knew my body. Just when I thought I’d adjusted, IBD threw me another curveball.

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.


  • txgal58
    3 months ago

    I had a similar experience. I was diagnosed with UC in my early 30’s. It came on very slow, no pain, no hospitalizations. At 39 my colonoscopy showed the presence of pre-cancerous cells. So I had my colon removed and a J pouch created.
    Everything went pretty well for about 15 years and then I started having symptoms similar to UC. I saw three different GI doctor’s all of whom said it was not possible for me to have Crohn’s since I’d had UC. After three years of this I went to the Mayo Clinic in Rochester, MN to see what they had to say.
    After 5 days of testing the doctors there told me there was no question I had Crohn’s.
    I asked for a referral to a GI doctor in the Dallas area and had an appointment in two weeks. I’ve been with him now for almost 5 years.
    The Crohn’s is so much worse than the UC was. This year I have been hospitalized for dehydration or a bowel obstruction every single month. I had to take early retirement from my job because I was missing so much work. Some days I barely have the energy to get out of bed.
    My life is certainly not what I expected it would be.

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