Woman floating in deep water

Falling Back Into a Crohn’s Flare After Being in Remission

I’m a veteran IBD patient, having lived with Crohn’s disease now for more than a decade. I mostly understand how my body works, how I need to care for it, what medications currently keep me feeling well, and that there’s always the possibility that feeling well may abruptly come to an end.

But, I don’t think it's possible to ever really be prepared enough for the moment that it does.

Crohn's remission: letting my guard down

I’ll be the first to say how lucky I’ve been. For nearly 4 years, I’ve avoided the emergency room and the hospital for anything Crohn’s related. And for almost that same amount of time, I’ve experienced living in remission. For me, this meant that IBD was my second thought when I woke up in the morning, instead of my first.

It meant that I was able to carry a healthy pregnancy, deliver a healthy daughter, and transition into motherhood. It meant that I have been able to work full time, enjoy a social life, and focus on other challenges and obstacles in my life. It’s been a huge blessing.

And, it meant that I accidentally let my guard down. To be honest, I’m disappointed in myself for this, but I’m also incredibly grateful that this was even an option in my life.

Signs of a returning flare

So, in January, when my trips to the bathroom increased, when my behind started feeling like it was on fire, and I started taking my as-needed medications multiple times a day, my first thought was that the influx of personal stress and emotions I’d been experiencing was absolutely affecting me on a gut level. It wasn’t until 4 days later, when during the middle of a video meeting I had to get up from my desk, climb into my bed, and proceed to immediately pass out that I realized something was off.

When I woke up from said required nap, I felt a kind of pain in my gut that I hadn’t experienced in years. The kind that feels like broken glass made its way into my intestines. The kind that makes it hard to breathe. The kind of pain that makes my eyes well up with tears.

This is when I understood it wasn’t good.

Severe Crohn's flare during remission

Early the following morning, I found myself on the phone with the on-call GI, who said verbatim, "I don't typically recommend this, but it sounds like you need to go to the hospital, today." This was the moment when I realized I'd allowed myself to forget.

I'd blocked out the feelings of needing to frantically pack a bag for the hospital while clutching my stomach in agony. I'd forgotten the routine dance of presenting in the ER, giving a history, requesting testing, being admitted, adjusting to the hospital room, then the hourly visits from nurses and techs and doctors around the clock, the relief of pain medication, the waiting for results, the establishing a plan...

This scenario, one I've walked through so so many times before, felt both vaguely familiar and increasingly foreign as I navigated it for the first time in almost 4 years of remission.

Fears, questions, and emotions

For several days, my IV was my window back into the world – pumping fluids and pain medication and steroids and essential nutrients into my body after so much damage had made me crumble. All the while, I couldn't help myself from thinking about what this meant. About what caused this flare, about how long this flare was going to impair me, about if and when I'd ever see remission again. I found myself navigating all 5 stages of grieving at once, emotionally more consumed than I had been in quite some time.

If you've experienced a flare after living in remission, what helped you to cope? Did you struggle with the same emotions and experiences I described? Please share below.

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