The Thing About Crohn's
There's always something
In May, I scheduled a colonoscopy & endoscopy to monitor my Crohn’s. Last time, the doctor found inflammation and scar tissue from ulcers. Yes, the ulcers were healing. Stelara was working magic in my body.
It wasn’t fully healed.
This time, I came out from under anesthesia to hear remarkable results. The ulcers had healed. The doctor couldn’t see any active inflammation. However, she’d taken a biopsy to double-check. All green flags minus some minor acid reflux.
I waited 3 months to hear back from the biopsy results.
I could, technically, look at the results from an online portal. But a large “NO” didn’t tell me much. There were no notes for context. Did it mean no inflammation or no, still inflammation? So the results stayed fuzzy until I went in for my 3-month check-up.
I received a vague “The test results looked good.” Not helpful. I asked if the biopsy showed inflammation. Before I got the answer, I was walked through the three stages of remission. Please note that she’d told me two during the prior visit.
The first stage is where a person can live fully despite symptoms.
The second is when there’s no inflammation you can see.
The third happens when there’s no inflammation beneath a microscope.
Then, she told me that no inflammation was present in the biopsy. Officially, I was in every type of remission. In a way, I already knew. My body had been relatively well. I’d been going out and doing much more than I’d done since my teens.
Yet I still had symptoms.
I’d still have loose stools, gas that could keep me awake, and sometimes rushed trips to the bathroom. None of these greatly hindered me in any way. But they were there.
That’s when the doctor said I may have IBS symptoms “like other people.” Once again, vague words. I assumed she meant others with Crohn’s. While I can’t say I’m surprised, I’m disappointed.
Plastered on magazine upon magazine was the symptomless remission.
No symptoms. No medications to take. And, most of all, it was like Crohn’s never happened. That’s how the writer spun it. Instead, I’m still taking medication.
I still have symptoms and scars from my time with Crohn’s.
I have had minor cataracts from taking Prednisone for too long. My hair has thinned. My skin is patchy, thin, and very prone to scarring. I’ve experience gum inflammation and an increased need for fluoride.
And none of it is gone.
Don’t get me wrong. I am incredibly thankful I can live as normally as possible. I’ve done things I never thought I could! However, I also feel misled. I’d been told through articles remission was 100% symptom-free. I hadn’t been warned I could also have IBS on top of this despite being diagnosed a decade ago.
Within the past three months, I took a day off due to a flare.
It’s not as over as I’d wish it could be. I’m happy and joyous and frustrated and disappointed all at once. On the one hand, I wish I could tell the younger me I’d finally reached remission. On the other, I don’t know if I would say it wasn’t what we expected.
Either way, I’m here. I’m learning.
Most importantly, I am celebrating.
Wishing you a remission of bad health in the week ahead,
Ada