Sunday, February 13, 2011

F is for forever

The moment you are diagnosed with Crohn's, your life changes. All of a sudden you have to come to a realization that this disease will be forever. You've lived with it probably for years before your diagnosis. Yet, the official declaration does not make it easier.

I distinctly remember waking up after my colonoscopy and seeing the doctors pensive expression. He didn't want to perform the colonoscopy in the first place. His exact words to me were, "a little diarrhea is no reason for a colonoscopy." He proceeded to tell me he was sorry that I have Crohn's, especially when he saw the tears stream down my face. He said that most likely I had been living with the disease for three years, easily. Of course I was immediately upset. I had been going to gastro doctors for years trying to figure out what caused my stomach pain. Why was it that it took a nurse in the ER to recommend a colonoscopy? She was also the one who felt I had some kind of auto immune deficiency. I was wasting a significant amount of money going back and forth to the ER. A cat scan here, an endoscopy there - nothing. Even after the ER nurse requested an emergency colonoscopy, I had to argue with the doctors. The next day all the nurses in the gastro office were demanding to the doctors to perform the colonoscopy. A nurse named Judy said, "Look at her, she has a ton of canker sores in her mouth. She definitely has something going on in there." Judy went to each doctor personally trying to squeeze me in for the procedure. She was determined to find a solution to my daily obstacles. She handed me a free container of Movi-Prep. Off I went to my brothers to spend the night...on the toilet! My mom told me to make a bed near the bathroom. Instead I decided the living room was close enough. I lit some candles and dimmed the lights in the bathroom. If I was going to spend the entire night in there, I wanted to be somewhat comfortable. If only there was a toilet built into a recliner - now that would be amazing for Crohn's patients. The entire time I was drinking the Movi-Prep I was hoping it was worth it.

Days after my procedure I was still in shock. How do I live with this disease? What does this all mean for my future? Do I always have to be on medication? Then came every ones opinion's. The thing I had to remember is: people care. Everything they tell you is out of love. No one can truly understand what it's like to have this disease. People can read literature and experience someone close to them living with Crohn's. However, you're the only who has to live with it every day. Some days I feel great and have no symptoms at all. Other days I feel like I've swallowed shards of glass. People will see you feeling better for a moment. As soon as you're not well, they think, "Well, I thought you were doing better? You seemed ok the other day?" I'm exhausted, which makes me feel lazy. I barely have enough energy to cook (thank goodness for Antal), clean, shower and exercise. I have to tell myself that this is all NORMAL. I believe there are stages a person goes through after being diagnosed. I'm still lingering between the denial and anger stage.

It becomes difficult to stay positive. I wake up each morning unsure if it will be a good or bad day. I know that eventually I will get back to being the energetic, crazy Carly everyone knows. I've been known for joking about bowel movements. Well now I truly have a reason for this humor. If I don't laugh, I won't stay positive. This journey requires an ocean filled of humor. So here I go...let's laugh about poop, farts, stomach grumbles and belching! I'll end this note with a toot.


  1. I really love this post and feel ya. We were diagnosed within a month of each other, both young, pretty, active ladies. I meet more and more young people being diagnosed with autoimmune diseases.

    The diagnosis is the worst part I think, once you start researching how bad things can get and the fact that everyone you know thinks it's an incurable disease.

    I might be crazy but I refuse to believe there isn't a cure. Here's a toot for the cure! Nikki

  2. Good luck with everything - especially going into remission