rollercoaster inside a person

Crohn's Disease: An Emotional Rollercoaster

I am blessed to say that I have been in remission with my Crohn’s disease since August 2016.  Since that time, I have gone from taking three biologics to one, gave birth to my daughter, and feel well on a daily basis. But despite that, I still fill up with worry every time I get blood work taken or have a colonoscopy out of fear that my disease will become active again.

This past week, I had my first colonoscopy in two years. The last two that I had back in 2018 showed no sign of active disease, no ulcers, and no inflammation. So, I was hopeful that this colonoscopy would have similar results and I would be on my way.

News of possible Crohn's recurrence

As I woke from my induced slumber, my GI was standing beside me with the news. I do not have active disease, I have no inflammation, however there were 5 superficial ulcers in my ileum (which is where my disease lies and what I had resected in 2014). She asked if I take ibuprofen regularly and I actually had taken it for 2 weeks straight prior to the colonoscopy due to a dental procedure so after informing her of that, she said it may be caused by that but let’s do further testing just to make sure there is no “recurrence."

Recurrence. My disease coming back in full form. Those words shook me to my core, especially after being (and feeling) so well for so long. I know that the additional lab work is out of precaution, but it is causing flashbacks to all of those years I suffered with no relief in sight.

Stress and worries around lab results

Since my colonoscopy, I have gotten blood work taken and provided a stool sample to test Faecal calprotectin which is a substance that your body releases when there is inflammation in your intestines and would indicate active disease.

My heart raced as I started reading the results from the blood work that fortunately came a day after it was taken. Everything looked normal. Phew! Some levels (like protein and iron) are even slightly higher than the last time I had blood work taken. Even better!

Fearing a recurrence of Crohn's when in remission

But, what about the faecal calprotectin? I would be lying if I said waiting to get these results back didn’t cause an abundance of nerves, and I check my email for the results on an hourly basis daily despite knowing it can take a few days for the results to come back.

Why am I back in this position again? Why am I fearing test results and worried that I have a “recurrence” when I have been in remission? This is not supposed to happen!

Crohn’s is fickle, my friends. One minute you are fine and in remission, and overnight you are suddenly crossing your fingers that everything is ok. This is such a wakeup call that although I am “in remission”, that can change on a dime.

Grateful for remission and being symptom-free

I cannot, and never will take my health for granted. I will always count my blessings that I am symptom-free and should I still be in remission, remain that way. Every day that goes by without active disease is worth celebrating, and I am grateful to have had the last four years in such good health, despite what the faecal calprotectin test shows.

So, fellow Warriors, know that this is a never-ending journey but one that we can find gratitude in during the good days, and soldier through the bad. Being in remission is not a guarantee and one that we should not take for granted. But we are strong, resilient patients, and maintaining hope is the best way to get through it all.

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