Finding Little Wins Along Our Crohn's Journey
Last updated: February 2021
Being handed a lifetime sentence with a chronic illness is devastating. The uncertainty, panic, and endless questions wrapped up in a body that feels like it has been completely drained is more than enough for anyone to bear. Yet we as Crohn's patients do it day in and day out.
We never know from day to day how we will feel, whether our medication will fail us or become the miracle drug we've been seeking and if our bodies will allow us to enjoy a day uninterrupted by dozens of bathroom breaks.
Let's face it, living with Crohn's disease sucks, but the only way we can get through it is to find little wins throughout the way.
I have found through my 11-year journey with Crohn's that celebrating little wins is the only way I am going to get through it and keep my sanity, for if I only focus on the negative and the aspects beyond my control, my mental health will suffer greatly.
Here is how I have been able to celebrate small victories while living with Crohn's:
Celebrating a "normal" bloodwork panel
It wasn't until 2014 (5 years after being diagnosed) that I saw results that were, as my GI described, "the lower end of normal." I honestly felt like this statement was an accurate description of my life, and also accepted "the lower end of normal" as a step in the right direction. It was a win.
Now when I get blood work, I assume that my ranges will be within normal since I have been in remission for more than four years, but I still silently celebrate when I see my results fall in the "normal" range, and get a little pep in my step when my Vitamin B12 or Vitamin D is even just a tad higher than they were during my previous lab work. Little steps. Little wins.
Any improvement in inflammation levels
I had done this test 4 months ago and my results came back at 90 which is borderline. My GI and I decided to increase my Stelara to once every 4 weeks instead of 8 and see how things looked in November. Thanks to insurance, I was never approved for Stelara every 28 days (apparently "borderline" is not enough to demand more medication if I do not have symptoms) so I had to do the calprotectin test again after changing nothing.
Luckily (and miraculously) my results came back at 80--down 10 ug/g since August with no additional drug intervention. Phew! Another win! I will have the test repeated in 8 weeks to check it again, and pray to clock in at the magic number 50 which is "normal."
Grateful for days without major symptoms
On a less technical side, I love showing gratitude for the days that I was able to go wherever I had to go, eat whatever I pleased (within my own limits), and never had to urgently use the bathroom.
Despite being in remission for several years, I do have instances of urgency on occasion and thank my lucky stars on the days that I don't have to find a bathroom while in a public place or rush off a phone call to go to the bathroom. These are significant victories, folks.
Finding that silver lining through countless tests, labs, scopes, and sick days is essential in surviving this disease. Our physical health is so reliant on our mental health that just changing our outlook can do wonders for our body.
Are there any little wins you like to celebrate while fighting your disease?
What has been the most helpful for managing IBD symptoms?