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Why My Choices Matter in Life With Crohn's Disease

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I’ve been a “Crohnie” for 31 years. In that time I’ve had ileostomy surgery, resections, ER visits for blockages, and flare-ups which are too many to count. Dealing with this disease isn’t “a walk in the park” as some may think. There’s abdominal pain that doesn’t go away as well as spasms, fatigue, sore joints, and side effects from medications that can affect certain organs.  Each patient has different symptoms and they respond differently to the treatments they receive. I’ve gotten to the point where I’ve put together a “survival plan” for myself whenever I’m not feeling well. It helps me get through the rough patches so I’m not constantly focusing on the downside of Crohn’s disease.

First, I always make sure my medications and hospitalizations list is always up-to-date, along with my list of physicians and drug allergies, so in case I have to see my doctor or go to the ER, the medical staff has the correct information. Then I make sure I have what I need from the pharmacy so if I have abdominal spasms or develop joint pain, I won’t have to wait for my husband to pick up prescriptions the next day and suffer throughout the evening before I go to sleep. I also like to keep myself busy if I’m ill and have to stay in bed or on my couch. I’ll get some items to entertain myself, such as a couple of coloring books with crayons, comedy DVDs, or a few games so I don’t have to focus continually on the pain that I am experiencing.

It’s not always easy to live with Crohn’s, especially when the disease is active. Just because Crohn’s can’t be seen physically doesn’t mean we are feeling well every day.  There are times where many have to manage on their bad days with abdominal discomfort or spasms because they have family responsibilities, are college students studying to earn their degrees, or are working themselves because they need the health insurance to pay for their medical bills.

The one thing I’ve learned over the years is that I’m the only person who can take responsibility for myself when I’m in need of medical care. I’m the only person who can be my own health advocate and speak up when I feel that I’m not getting the proper treatment in a hospital, and I’m the only person who knows when their illness is in a full-blown flare-up or remission. If I’m not feeling that great, I have to switch gears and concentrate on doing what’s best to get my symptoms under control.

I realize I have two choices in life — to either give up and give in to this disease, or to face each new day with hope and optimism.

Originally published: October 7, 2020
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