How Inflammatory Bowel Disease Changed My Life

I am sitting here typing this, sipping on ginger ale to ease the nausea, thinking back on how Crohn’s disease has affected my life. It certainly has had its negative effects (note the current fear of moving because I think it will make me throw up). But it has also had its positives. Isn’t it strange to say such an awful disease has done so much good in my life?

When I was fifteen, my thoughts of the future included fashion design or early childhood education or home economics teaching or I don’t really know. I wasn’t sure where life would take me to be honest. I had many interests, but the only time I ever thought of being a nurse was when I was six, and in school we had to draw what we wanted to be when we grew up. The only reason I chose a nurse was because my mom was one, and it was the only job visible to my six-year-old eyes.

Forward ten years, sitting in my hospital room day after day, nurses who didn’t know me were taking care of me like I was their own child. Sure, they set up my IV medications or they changed my central line dressings. That all was fantastic. But it was the ones who French braided my hair and the ones who insisted I drink something a little more hydrating than iced tea that I remember. The nurse who made me an Indianapolis Colt’s poster during football season. The nurse who forced me to walk around the unit when I begged and begged her not to make me. The ones who held my dad’s hand as I was being wheeled off to emergency surgery are the ones I will never forget. They were the ones who gave me the courage to take hold of my life – the ones who made life seem possible with an ostomy. I can only hope they’d see this years later and know how they changed my life.

See, nurses are the ones who are not afraid when an ostomy bag explodes on their shoes and scrubs. They pretend they don’t care. They make it no big deal, and they force you to move on from these little setbacks. Nurses make you see the bigger picture, the one where you feel better and are living your life outside of the hospital.



These wonderful, wonderful people are the ones who made me a real person again, with a real goal in life. I realized very soon after my surgeries that I needed to show the world that life with an ostomy is not a death sentence. It breaks my heart to hear patient’s or their parents speak of ostomies in a negative light. I hear them talk of how awful the bag is and how they pray for it to be reversed. How looking at a stoma makes them sick.

During this week of awareness for Inflammatory Bowel Disease, I wanted to show the world that this disease (and its effects) can one hundred percent run your life. Not what you expected me to say, huh? When I say this, I mean it can run your life in a positive way, and not a negative. The nurses who made me feel real again were the ones who encouraged me to take my experiences as a patient, and bring them into the nursing world. I advocate and education for patients – both inside of the hospital and outside! If I had never had Crohn’s disease, I am not sure where I would be or what I would be doing right now. I am very grateful it has given me direction.

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One Comment

  1. Maggie,
    I just wanted to share some things I have learned since my husband came home from colon cancer surgery with an ileostomy.. I am sure that most ostomy patients already know these things but no one told us and we worked together to figure this out.
    First: When he started his chemotherapy and things became more liquid, we had a hard time controlling the output when we were trying to change the bag. A friend of mine that was a nurse said “Put a tampon in it.” That has made all the difference. It gives use time to clean around the area and make sure everything is dry. We just remove the tampon through the bag opening once the bag is attached. HIs are 2 piece bags.
    Second: When things are too liquid and sloshing occurs we cut up disposable baby diapers and insert them in the bag. This helps absorb the liquid and pulls it away from the stoma, reducing leaks. (Remember you can’t flush the diaper so
    you would have to put it in a bag a throw it away)
    Third: We also use a hair dryer (on low) to warm up the rings and paste so that they bond to each other better.
    and lastly: We have found a “deep convex” bag made by Coloplast that works very well with my husbands body type. (He is a big guy with a crease in his belly where the stoma sits.)
    I hope that someone can use some of this information.
    Have a merry and blessed Christmas season!
    Lisa

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