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digestive system with missing puzzle pieces

When you feel better but your test results say otherwise

Friends, we all know that having Crohn’s Disease is quite the journey. Talk about ups and downs, right?

The ups and downs of Crohn’s

We all go through the endless zig-zagging trajectory of feeling great, then feeling not so great, and it can become tiring and heartbreaking.

Yes. Heartbreaking.

Am I in remission?

You have periods where you feel amazing! And you think to yourself, could I be in remission? You become excited about your next round of tests and feel empowered to meet your doctor for the follow-up appointment.

Colonoscopy? Bring it on. Blood work? Bring it! Fecal test? I can’t wait!

Confident that test results will be good

You’re almost on a high because you feel amazing. You have minimal symptoms and you know this is it! Your doctor is going to tell you that your gut is healed and you’re in remission.

Shattered hope

Then, like a punch to the stomach, your expectations are shattered.

“Your results show that you have a lot of inflammation and…” blah, blah, blah. That’s it. You tune out. You feel like a failure.

It’s at this moment that you truly feel out of control because it all becomes so real. How you feel and perceive your body is entirely wrong somehow.

But how? It’s your body. You’re quite literally inside of it. Feeling all of it. How can you be so wrong?

Well, I’m here to tell you, my dear, that in a way you aren’t.

If you feel like you are better, and you are experiencing improvement, then you are! Yes, my dear, you are!

There is so much more that goes on beyond what a test can tell you

Your body is extremely complex and a test or two cannot possibly capture the entire moving picture.

Here’s an analogy: Imagine your body with its Crohn’s diagnosis as a complex puzzle. The kind with over 200 pieces, that takes days to complete. Okay, now imagine that your digestive system is the complete picture once the puzzle is finished. And only when the puzzle is completely done, do your tests come back “normal.” Following me?

Well in order for you to get those “normal” results, you have to get to work on this hard puzzle and it’s going to take time. Perhaps you have figured out the bottom corner and it shows the left side of your colon. How exciting! You are getting the puzzle done but yes, you have more to go.

Oh, and now you have another section and can see your small intestine. Whoohoo! But of course, the entire picture is still not complete. Well, halfway into completing your puzzle you are due for a test. But your puzzle is not complete, therefore, your test results show up as undesirable.

But of course, it does! Your puzzle is not complete! It shouldn’t negate that you have two sections done and that you feel accomplished and feel improvement. Feeling my drift?

Keep moving forward

So, keep pushing forward, my friend. Keep working on the puzzle! Just because you got bad results does not mean you are not improving. It does not mean you will never get better.

So, don’t be so hard on yourself. What you are feeling is not fake, but rather entirely real. Improvement is an improvement.

Keep your head up, and keep working on your puzzle. You may be closer to finishing than you think!

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

  • Kelly C (#purpleproject) moderator
    4 months ago

    This is probably the most common thing I hear among the patient community. I’m glad it’s being talked about! So hard to be understood and quite honestly, believed, when there are no alarming characteristics in your labs, tests, etc.
    kelly

  • thedancingcrohnie moderator author
    4 months ago

    Thanks Kelly! Glad you can relate as well. It’s always comforting to know that you aren’t alone.

    Always dancing,
    Elizabeth (team member)

  • Julie Marie Palumbo moderator
    4 months ago

    Thank you for this, Elizabeth! I love the puzzle analogy, as it is so spot on!

    It is definitely a work in progress, and any improvement is worth celebrating. Thank you for this optimistic view 🙂

    –Julie (Team Member)

  • thedancingcrohnie moderator author
    4 months ago

    Thanks Julie. Glad you liked the puzzle analogy. And yes, any improvement is so worth celebrating! Just because it doesn’t show up in a lab test doesn’t mean it didn’t happen.

    Always dancing,
    Elizabeth (team member)

  • Julie Marie Palumbo moderator
    4 months ago

    You are ABSOLUTELY right!! It is so critical to celebrate little wins when living with a life-long illness or we will never be grateful.

    –Julie (Team Member)

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