IBD: Remission & Anxiety

I'm on a mission to remission.

If you’ve read parts of my story before, you’ll know that it took me more than 6 years to get diagnosed with Crohn’s disease after becoming symptomatic. During that chapter of my life, I begged, pleaded and prayed for some relief. But without a label, my hopes at returning to anything resembling normal felt desperate and unattainable.

In the weeks and months following my diagnosis, I kept coming back to the hashtag "On A Mission to Remission" across social media. These words resonated so deeply within my heart. This phrase gave me permission to name my purpose, to identify the specific thing I was fighting for, and to charge unapologetically ahead until I reached it.

During the 2 years of medication trials and tribulations between being diagnosed with Crohn’s disease and reaching the beginning of remission, all I could think about was keeping my eyes on the prize. I could no longer go back to the life I once lived. But I could in fact still have a life to live, one that was even filled with joy and love and more good days than bad.

Physical symptoms of IBD

I have thanked my lucky stars each day that the last 12 months have been ER visit and hospital admission free for me. This is the first time since I got sick almost a decade ago that I have not had a permanently packed hospital bag waiting by the door of my apartment. I decided that has deserved acknowledgment and celebration as often as I’m able.

I’ve been overwhelmingly grateful for the days that only contain a few bowel movements. Grateful for the ones where my pain is mostly ignorable. And grateful that my joints haven’t been swollen and that I’ve been able to choose the ways I spend my time, versus my body choosing for me.

I’d be lying, however, if I didn’t acknowledge that there have been some lingering thoughts. These have become pretty loud in my daily life, even while in remission.

Persisting thoughts of anxiety

As an IBD patient, I understand that there are certain things that have become automatic in my mind. Things like locating the nearest restroom whenever I leave my house. Things like always carrying extra medication even though I haven’t needed it in quite some time. Or being aware of where the closest doctor or hospital is at a minute's notice. Things I thought, or hoped rather, that would dissipate somewhat once Crohn’s disease didn’t rule every single day of mine... but haven’t.

Recently, I realized that some of my IBD-related anxieties have transferred over into my life in ways I didn’t quite expect. I am currently so blessed to be nearing the end of my second trimester of pregnancy. One of the joys of a baby inside your uterus is the ever-present need to pee. This alone has made me into much more of a homebody.

The constant stress of knowing not just where the restroom is, but how soon I can drop what I’m doing to reach it has felt so much like the days of IBD flares. The anxiety it causes is often enough for me to opt-out, choosing to not put myself in a public situation in the first place.

Also, like the days of active Crohn’s disease, many physical things that happen during pregnancy are unpredictable. When I do leave my house (whether for a few hours or a few days), I take extra precautions to be prepared. Packing water and snacks, medicine, changes of clothes, and more. I honestly believe had I not spent the last decade living with IBD, my approach to this would probably be much more relaxed.

I'm constantly worried that remission will be taken away from me

The other residual thought for me, every single day, is the feeling that at any moment, everything could be taken away from me. That the 12 months I’ve spent in remission could disappear in the blink of an eye. And that I could be back at ground zero in an instant. I could be back to living in and out of the hospital walls, relying on IV hydration and/or nutrition to survive. That although I’m currently carrying a healthy pregnancy, at any time my ability to complete it, or to do it again, may be compromised or even completely vanish.

These things terrify me, and at the same time, there is virtually nothing else I can do to prevent them. Autoimmune diseases are beasts of their own nature. Besides staying on my current medication regimen, taking care of my mind and body, staying diligent with follow-up labs and appointments, all I can do is remain hopeful for days like these.

If you’ve experienced periods of remission with your IBD, have you noticed any disease-related anxieties stay present in your mind? I’d love to hear about them below.