A Day in the Life for Someone with Crohn's Disease or Colitis

3 years ago

Editor's Note: Today is World Crohn's and Colitis Day, so it's the perfect time to get yourself familiar with these two chronic diseases and better understand what those diagnosed with Crohn's or Colitis go through on a daily basis. --Mel

Crohn's disease is an illness that affects many people of various ages. There's a fairly good likelihood that you know someone who has Crohn's or, at the very least, know someone who knows someone. But what you may not know is what it really means to suffer from it.

I started to have symptoms of Crohn's at age 18, during my freshmen year of college.  Fatigue, painful bathroom trips, crippling stomach pain, and even an episode of passing out likely from the malnutrition clued me in that something was wrong. At my parents' insistence, I saw my family doctor when I was home for the summer and the quest for diagnosis began.

I suffered for the next three years, seeing numerous doctors, getting thinner and sicker. None of them wanted to really offer up a viable reason for my symptoms. Their go-to diagnosis was an ulcer and they handed me numerous scripts for ulcer medication, none of which worked, of course. One doctor, whose name and rude bedside manner I will never forget, told me it was all stress (after all, I was a full-time college student who was also working full-time), and "one day you're going to come to me begging me for Valium, and I'm not going to give it to you."

Gee, thanks, pal!

It was at the end of those three difficult years that I was given the incidental diagnosis of suspected Crohn's when I underwent a procedure for something else entirely. The surgeon could see a band of inflammation in my abdomen and was fairly certain what it was. Within a few days, I had undergone an upper and lower endoscopy with a definite diagnosis of Crohn's disease.

I was elated at the news because, finally, we could treat it because we knew what it was.

Image: TtoTheStreet via Flickr

Little did I know how difficult treatment was. The medications were pretty tough to take sometimes with ugly side effects. But also finding the exact right dosage is a delicate game. I spent the next few months reeling from symptoms and side effects, but I pressed on. My new doctor had given me the full Monty of symptoms, meaning he left no scary detail untold. He filled me in on every possible side effect and symptom, no matter how remote, and even told me potential employers wouldn't have to hire me because I had this disease. (Cue sad music.)

I was discouraged that year, which was the end of my junior year of college. I had to make the tough decision to postpone my education. This is still a bitter pill to swallow. I still want that degree.

I've had a few serious brushes with death as a result of Crohn's disease and daily challenges. It can be frightening. I'd like to share those at another time and concentrate a little on the day-to-day down and dirty details of living with Crohn's disease.

Because of the nature of the illness, that being a gastrointestinal assault, there are some pretty unsavory symptoms. It's not every day that you tell somebody you have chronic diarrhea and may need to bolt at a second's notice (or sometimes none at all) to the nearest bathroom. Nobody wants to have to admit that sometimes they have to do a 30 yard dash with their rear pinched together for all its worth and pray all the way there. But that's the reality of Crohn's. So is chronic pain, fatigue, headaches, joint pain, and for some, the list can go on. Each Crohnie is different.

What I know about myself and others I've met with an inflammatory bowel disease (IBD) is that we want you to be aware. It is easier for us if folks know what our issues are so that we don't feel we have to hide it. It causes us anxiety if we feel "trapped" as we're traveling with a group and worry that we'll inconvenience the whole group if we have to stop to use the bathroom. But sometimes the stress of that anxiety and worry itself kicks off our symptoms. Stress is unhealthy for everyone, but it's literally unhealthy and intolerable to many IBD patients. It ramps up the symptoms sometimes immediately upon onset of a stressful situation.

If you know someone with Crohn's or come across them, even as a casual acquaintance, please don't feel shy about asking for more information and embrace the opportunity to educate yourself. We're happy to share, and we'll probably keep our poop jokes to ourselves. (Not everybody enjoys that humor, but we do because sometimes you've just got to laugh.)  We want you to be comfortable with us so we can be comfortable. Please be aware, compassionate, and work for a cure. We need one.

This is an article written by one of the incredible members of the SheKnows Community. The SheKnows editorial team has not edited, vetted or endorsed the content of this post. Want to join our amazing community and share your own story? Sign up here.

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