acceptance,  coping with flares,  Crohn's,  living with IBD,  Ostomy,  Ulcerative Colitis

The Waiting Game

Does nail-biting anxiety wash over you as you await results after a colonoscopy, MRI, or CT scan? Or restlessness while waiting for your latest round of biologics to start kicking in? Yeah, me too. I sit here today twiddling my thumbs endlessly as I await my ileoscopy and upper endoscopy biopsies from last week.

This form of anxiety is all part of the waiting game. We patients live in constant agony while test results are pending, especially when a definitive diagnosis depends on those results. We worry as we take dose after dose of the latest round of immunosuppressants, earnestly hoping that this medication will be “it” — remission, finally.

(Courtesy of Tina Aswani Omprakash)

These feelings are normal in that we don’t in the least bit want to suffer anymore. Waiting for results can be nerve-wracking, as our minds swirl with all sorts of “what-if” scenarios: What if my disease is back? What if I need to change my medication? What if I need surgery? Oftentimes, inflammatory bowel disease (IBD) feels relentless; our intestines act on their own whims. And other times, going through the belaboring process of testing and trying medications evokes a deep trauma. When living through multiple flare-ups and an endless stream of diagnoses closing in on our world, it is natural to fear the worst and lose patience.

However, something we may not realize is that there is beauty in the waiting game as well. And that beauty lies in a greater good; one that teaches us that patience is really, truly, and painstakingly, a virtue. After all, waiting helps us find our poise in the midst of chaos. And that poise provides us with an inner strength to persevere. It’s a poise that can be harnessed and perfected over time with each biologic tried and every diagnosis accumulated.

Most importantly, however, waiting teaches us that we ultimately have no control over diseases even though we work endlessly to manage our well-being. In this sense, waiting ultimately breeds a kind of acceptance. It dawns on us that having chronic illnesses means keeping our head above water despite every attempt by disease to pull us under. And from that acceptance, waiting teaches us that we must try to live in the midst of the havoc our bodies keep creating if we want to stay afloat.

Look, I’ve been there: Day in, day out, not being able to shower or eat, not having the faintest desire to brush my hair or get out of my pajamas while playing the waiting game. There is nothing wrong with all that. But at some point, the days, weeks, and months go by and not doing the basics, let alone the things we enjoy, begins to take a toll on the psyche, personality, and ultimately, our entire being. That is disorienting, discomfiting, and can propel us further into this sick state of being, which can take over our minds and bodies.

When I’m stuck in a waiting rut (which is pretty often), I tell myself the following:

  1. This is temporary. Change is the only constant in life, so things are bound to get better at some point. I’ve bottomed out already, so how much worse can it get?
  2. Maybe the results won’t be as bad as expected? IBD symptoms can sometimes mimic other conditions. I remember one time I had what felt like a Crohn’s flare, but it actually turned out to be pelvic floor dysfunction. It involved similar pain, discomfort, and an inability to walk, but it was a completely different diagnosis. And as awful as the entire experience was, I was relieved it wasn’t Crohn’s.
  3. Scientists are unleashing an army of treatments against IBD. Waiting for medications to work is an arduous process, but the reality is that if one doesn’t work, another might. There are many new clinical trials and medical technology is advancing at lightning speed. In the last four years alone, three new biologics — Entyvio (vedolizumab), Stelara (ustekinumab), and Xeljanz (tofacitinib citrate) — have been approved for Crohn’s and/or colitis. And there are dozens more on the horizon, giving us more reason to allay our anxiety.

While IBD can be scary and evoke all sorts of traumas, it is important to give ourselves a blank slate. Worrying won’t change the outcome, but patience, perseverance, and positivity will help see us through. So, own your Crohn’s, own your IBD, and don’t let the waiting game permeate your being and prevent you from living your life between procedures and medication trials.

Tina stylin’ up her hospital gown as she waits to go into the operating room. (Courtesy of Linda Zitelli)

Follow my story at my blog, and on Facebook, Twitter, and Instagram — @ownyourcrohns.

***Originally published in IBD News Today on June 28, 2018.

Tina is a health advocate for patients living with chronic illnesses and disabilities. Via her writing, social media and public speaking engagements, she spearheads public health causes, including those creating awareness for inflammatory bowel disease (Crohn's & Colitis), life-saving ostomy surgery and initiatives supporting global women's and minorities' health. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance. She owns her chronic illnesses and disabilities and her goal is for you to as well!