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It All Looks Different

“It all looks different.
How we survive and
How we cling to hope.
 
How we acknowledge
Our own hearts
And their resilience.”
-alison malee

 

The very first thing I learned about the world of Inflammatory Bowel Disease (IBD) was far before I was diagnosed with Crohn’s disease. It was shortly after I became symptomatic, nearly a decade ago. I learned that every patient experiences the disease differently. Every patient’s symptom list may show discrepancies or place significant (even life-altering) emphasis on different things. Every patient’s road to testing, doctors, diagnosis, and treatment is vastly different, and I’d even wager to say they are incomparable. Every patient’s medication side effects, extra-intestinal manifestations, and co-morbid conditions vary too, making no two IBD patients journeys exactly alike.

This is challenging for everyone involved.

Doctors have to treat every patient with IBD differently

This makes GI doctors jobs harder. Each patient they see comes in with a new roadmap, and while things may look similar or sound familiar, diagnosing IBD requires more in-depth work than running one test or checking symptoms off of a list.

I spent years looking for answers to my symptoms

In my experience, this also makes patients jobs significantly harder – both physically, and emotionally. Let me explain. I spent 6.5 years trying to explain my symptoms, my challenges, and the impact they were having on my daily life to doctors of all kinds without ever getting to a conclusion of what was causing these changes or how to stop them. I was miserable, desperate for relief, and continued to hit blank walls, prescriptions with side effects but no benefits, and failed to really find a physician who believed me and dug deeper into my body and my “mystery.”

My journey to diagnosis

As I’ve shared in other posts and forums on the site, I was finally diagnosed with Crohn’s disease through the use of the Pill Cam or Smart Pill Test. One that enabled my doctor to view areas of my small bowel that were not caught on colonoscopy or endoscopy, but was significantly affected by the disease. During the years prior to my diagnosis, this was not a common test run by the GI department, and I had not previously even heard that there was another tool with a reach different than the standard dreaded colo/endo process that diagnosed most of my friends.

This exhausting chase of symptom relief, and ultimately a diagnosis and treatment plan, also wreaked significant havoc on my head and my heart. I was told over and over again that I must be making things up, exaggerating things, looking for attention, struggling with anxiety or battling an eating disorder. Anything to take the pressure off physicians and place it back on me, the patient, the one that couldn’t control her symptoms regardless of what she tried. This left me beaten down, closed off, and withdrawn. It left me afraid to share my story, afraid to ask for help, afraid to believe that life could get better for me.

Looking back, I don’t blame younger me for the ways in which I choose to survive. The ways in which I clung to hope and chose over and over to stay alive even though things felt bleak. But if I was put back in the same devastating and overwhelming situation today, I do hope that I would fare a bit better, a bit more graceful, even a bit more kind.

Sharing my story has been empowering

One thing I really choose to focus on now, more than 3 years after my diagnosis and almost a year into remission, is how I choose and have chosen to acknowledge my heart, and it’s resilience. My journey with IBD has been long and hard and has changed me in ways I’m still coming to learn, but sharing it has been empowering and reading all of your stories and questions and articles has shown me that our paths to the same destination truly have looked so different.

If you could, what is something you’re proud of? In the ways you survived, in the ways your life and your heart continued? I’d be honored if you shared it with me below.

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

Comments

  • GrandmaGail
    5 months ago

    I, too, was diagnosed with the pill camera after 4 years of great pain and being told that stress was my problem. I thank God for the pill camera! It proved my pain was not just in my head and made me angry at the doctors who were unwilling to go that extra step.

  • Amanda Osowski moderator author
    5 months ago

    @grandmagail & @thedancingcrohnie – I could not agree more. This test is relatively non-invasive in comparison to some of the others patients are put through, and it can provide invaluable information not seen elsewhere.

    I am so glad that you both have been steered towards the right direction because of it.

    Warmly,
    Amanda (team member)

  • thedancingcrohnie moderator
    5 months ago

    I was also given the pill cam test and was able to rule out inflammation in the small bowel. That test is so easy and it gives a ton of info. I think everyone should do it, if possible.

    So happy you had such success with it.

    I hope you are doing well these days.

    Always dancing,
    Elizabeth (team member)

  • thedancingcrohnie moderator
    5 months ago

    So well said.

    And to answer your question, something I’m proud of is my strength. I could have given up many times through this journey and I didn’t. I’ve never lost my fight and I will continue to remain positive. We are all warriors!

    Always dancing,
    Elizabeth (team member)

  • Amanda Osowski moderator author
    5 months ago

    Elizabeth,

    I love your response so much. Thank you for sharing!

    Amanda (team member)

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