Living with Crohn's Disease

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Living with Crohn's Disease


Crohn’s disease is an inflammatory bowel disease (IBD) that affects the gastrointestinal tract, most commonly and specifically the small bowel (ileum) and the beginning of the colon. The inflammation caused by Crohn's disease often spreads deep into the layers of affected bowel tissue and can be both painful and debilitating, sometimes leading to life-threatening complications if not treated in a timely manner.

While there's no known cure for Crohn's disease, therapies can greatly reduce its signs and symptoms and even bring about long-term remission. With proper treatment and support many people with Crohn's disease are able to function well and live relatively “normal lives”.

Jamie Schmalenberger, my beautiful and courageous sister-in-law who was happy to talk openly about her experiences, is one of approximately 700,000 Americans living with Crohn’s disease. She was diagnosed after spending three weeks bedridden and living on a diet of water, Gatorade, and Saltine crackers because that’s all her body could tolerate. Having been diagnosed with irritable bowel syndrome (IBS) seven years earlier, she thought it was just another flare up. But her symptoms would not go away and she eventually saw a doctor to see what was really going on.

Regarding her diagnosis, Jamie states, “In all honesty, I was relieved. I felt I had been misdiagnosed seven years prior and finding out that I had Crohn's disease made so much sense of many experiences I had throughout my entire life. I remember experiencing symptoms as young as elementary age, but my parents and teachers never believed me.”

Once properly diagnosed, the resulting treatment process took a lot of trial and error and Jamie worked with her gastroenterologist to develop a successful medication strategy. She has received Entyvio infusions every eight weeks for the past ten months and has followed a strict diet to reduce the likelihood of flare-ups. Still, set backs happen even when Jamie thinks she is doing everything right. “It’s frustrating and unpredictable,” she admits, “but if I don't embrace this disease with all of it's challenges, then I fall victim to it.”

Jamie went on to address the stigma of Crohn’s disease and how society largely views bowel movements as something embarrassing to discuss. This is unfortunate for those living with this chronic condition because of how important support from others is to get their life back on track. Additionally, Crohn’s isn’t a disease you can just take a pill everyday and forget about. As reinforced by Jamie, “My disease controls what I eat, when I eat, and environments that I feel comfortable in (ie: how quickly can I access a bathroom, will the bathroom be sanitary, will it cause a scene if I need to rush to the bathroom, etc.). I hate to admit it, but my disease often interferes with me being able to do the things I want to do - going out for dinner and/or drinks with friends, sitting through a play or a movie with my husband, attending an event for my child.” The hardest part for Jamie about her diagnosis is not always being able to be present and available for her children, husband, family, and friends.

However, even though Crohn’s disease is a major part of who Jamie is, she has learned to “embrace it to face it”. I know for fact that her friends and family are all proud of how she’s handled her diagnosis. It hasn’t been easy by any means, but she has the support and is able to find reasons to stay strong and positive through it all.

“My children are my biggest motivation for waking up every morning NOT playing the victim and conquering each day before my disease does. My children give me the strength to make light of my situation, joke about the "embarrassing" symptoms, and remain confident through a disease that easily causes a lot of insecurity. I truly care more about living the most fulfilling life I can and not letting this disease deter my dreams and goals. The more I own my disease, the less it owns me.”


For more information regarding syptoms, causes, and treatment for those that live with Crohn’s disease, please visit http://www.mayoclinic.org/diseases-conditions/crohns-disease/basics/definition/con-20032061


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