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My 'Survival Plan' for Navigating Life With Crohn's Disease

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I’ve been a “Crohnie” for over 25 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 as easy as some may think. There’s abdominal pain that doesn’t go away as well as spasms, fatigue, sore joints and sometimes nausea and an upset stomach. When I am in remission, there still are other side effects to deal with such as joint pain, for example. Each patient is different with their 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  IBD.

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 physician 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, my  medications will be there. Another thing I like to do is to keep myself busy if I’m confined to my bed or 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 having an incurable illness.

Crohn’s is a very complex disease that affects patients differently. Some have to endure problems such as arthritis or constant pain that doesn’t go away. Even though it’s difficult at times to deal with this, many have to manage to get through each day 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 costs.

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 finding the right medication so I’m healthy, as well as telling myself that “this too shall pass.”

I realized that 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: November 19, 2018
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