At first, I was going to title this post “Happy Crohn’s and Colitis Week.” But the reality is, living with Crohn’s disease or ulcerative colitis (collectively called inflammatory bowel disease or IBD) does not make one happy!
My aunt was diagnosed with ulcerative colitis (UC) at age 16. According to my grandparents, she was one of the first patients to be treated with high dose corticosteroids at a hospital in Chicago in 1958. Unfortunately, she died after a car accident at at age 17, so we do not know what would have happened to her UC long-term.
When I started having diarrhea at age 13, my pediatrician took my family history seriously and ordered a barium enema to rule out UC. My tests came back normal, so he diagnosed me with irritable bowel syndrome (IBS). At that time, IBS was a diagnosis of exclusion. Meaning they ruled out all the “bad things” such as UC, Crohn’s disease, cancer, etc before deciding it was “only IBS.”
I have several close friends with IBD. Over the years, I have met, treated, and counseled hundreds (maybe thousands) of patients suffering from active Crohn’s or colitis. While living with IBD is challenging, I am here to tell you it does not have to run or ruin your life. You can take back control. For the newly diagnosed, here are 7 lifestyle tips to managing IBD:
- Get a great gastroenterologist who is up on all the latest research and treatments for IBD.
- Get organized. Type out all of your medical history, including when and how your disease was diagnosed (i.e. CT scan, colonoscopy, etc.), what medications you have been on, if you have drug or food allergies, and any family history of IBD. Make sure all of your doctors have a copy. Keep an extra c0py in a safe place. You never know when you will need to go to a new doctor that does not know your history.
- Educate yourself. Read all your can about your disease. Ask your doctor lot of questions about which treatments are right for you.
- Ask medical people you know and trust for the name of a good surgeon. You may never need one, but it’s better to have a name in mind in case you do.
- Meet with a registered dietitian. I’m not just saying that because I’m a dietitian. I truly believe patients will have better long-term outcomes if they take control of their food, eating, and drinking habits from the beginning. We will discuss specific diet strategies in a separate blog post.
- Make sure you have a good support network. Find a local support group, or find one online. Emotional. physical, and psychological support can sometimes be received better if it’s not a family member or spouse providing it! A word of caution, however. Some of these groups can be a downer if you have someone who just wants to talk about all the bad things that can, have, or will happen. Steer clear of these “Debbie Downer” groups!
- Manage your stress. Now. I mean it. You will quickly discover the connection between stress and disease flare-ups. While running alone helps me relax and de-stress, you need to find what works best for you. It could be spending time with friends, attending sporting events or church (or both!), exercising, meditating, getting a massage, boating, or fishing. Whatever it is, schedule these stress-controllers into your life. They are as important as sleeping, eating, and taking medications.
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