Living with Crohn's disease: 'Today I will fight again'

The humiliation factor is a major reason so many with Crohn's disease suffer in silence, Debbi Wynn says.

Story highlights

  • Crohn's disease is "horrible, it's overwheming and it's humiliating," Debbi Wynn says
  • Many with Crohn's suffer in silence, Wynn says
  • Even in remission, fear and anxiety linger, she says
  • Wynn says she's learned to be grateful for each day in remission
"Today I will fight again. This disease will not own me or define me."
These are the words I like to begin each day with, stating my intent out loud. Somehow it seems if I actually hear it, it's easier to live it and believe it.
I have Crohn's disease, for which there is no cure -- a disease that requires a daily personal battle with things most of us prefer not to discuss with others. And for those who must deal with it, one thing is certain. It's horrible, it's overwhelming, and it's humiliating.
The humiliation factor is a major reason so many suffer in silence -- the evidence of the disease and the treatments are things you just don't tell others about.
So you find yourself facing the challenges alone -- the pain that literally doubles you over without warning: nausea, life-threatening bowel obstructions, incontinence, dehydration, intravenous feeding, fatigue and depression.
There is also the ever-present threat of surgery, ostomies and permanent damage to my body. There are long days without any food or water, followed by multiple days of clear liquids only.
Each person suffering from the disease will have their own private hell made up of variations of these components, but all will share the guarantee of loss of normal life, and the knowledge that there is no cure. During my worst times it's been so tough that, exhausted from battling the pain, frustration and fear, I've cried myself to sleep on the bathroom floor.
There are many, many drugs and some forms of chemotherapy treatments that may bring about remission in Crohn's cases but no guarantees.
And even with remission, the fear and questions linger -- will it come back? Every healthy day is a blessing that carries a black cloud on the horizon.
There is relief as you realize you have a reprieve from the disease but a lingering sense of anxiety as you contemplate the "what if" that hangs just above your head, depriving you of real peace. It's a daily struggle to keep the fear and uncertainty at bay and enjoy the moments that feel "normal."
So I will focus just on today.
I rise early so I can exercise -- exercise helps battle the fatigue that, because of an inability to absorb nutrition from food, is the out-of-control demon affecting each day.
I dress for work, pack my small meals and snacks from the very short list of things that I can easily digest. Others will see the confinements