Talking to Friends

IBD Patients Weigh In: 'The Best Advice I Ever Got'

Jackie Zimmerman May 19th, 2016 (updated Jan 12th, 2017)
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Doctor and patient discussing medical record in the hospitalTalking with other IBD patients can be so beneficial when it comes to education, acceptance, and just living life! We asked IBD patients to share the best advice they’ve ever received about living with IBD. We hope that it helps you, too!

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“When in remission, eat what you love.”
“When in remission, eat what you love.”

IBD can be pretty hard on your insides, and often during a flare up we have to alter our diets. If you’re able to, when in remission, celebrate by eating things that make you happy and taste really good. Save the BRAT diet (Bananas, Rice, Applesauce, Toast) for your flares!

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“Don’t empty your ostomy bag in a short toilet, even if you bend down all the way. Trust me!”
“Don’t empty your ostomy bag in a short toilet, even if you bend down all the way. Trust me!”

Being an ostomate often comes with a learning curve. Find fellow ostomates and ask their advice about living with an ostomy, specific appliances, and other tricks that will make your life a whole lot easier!

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“Rest, rest, rest. Don’t feel like you have to push yourself all the time. It’s ok to take a break and, more importantly, listen to your body.”
“Rest, rest, rest. Don’t feel like you have to push yourself all the time. It’s ok to take a break and, more importantly, listen to your body.”

Having a chronic illness can be exhausting. Take the time you need to rest and be at your best. It can be terribly disappointing to have to stay in and/or cancel plans with your friends, but taking care of yourself really should be your number one priority.

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“Speak up! Advocate for yourself. Listen to your instincts. Trust your intuition. You know your body better than anyone else.”
“Speak up! Advocate for yourself. Listen to your instincts. Trust your intuition. You know your body better than anyone else.”

Being your own advocate is probably the most important thing you can do for yourself.  Make sure to talk to your doctors, ask questions, and tell them how you feel about the care that you are getting. Remember: It is always okay to tell your doctor “no,” or to get a second opinion.

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“Take medicine when you need to. There’s no shame in it, and trying to be a hero and tough it out could make the problem worse.”
“Take medicine when you need to. There’s no shame in it, and trying to be a hero and tough it out could make the problem worse.”

There are a lot of conflicting opinions about taking medication in the IBD community, but it is crucial that you do what is best for your body. For some people, medication works really well to control IBD symptoms, while for others it’s not as easy. It is essential that we support individuals' choices when it comes to medication.

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“Get support. IBD is trauma after trauma, and that affects your whole self. Therapy helps!”
“Get support. IBD is trauma after trauma, and that affects your whole self. Therapy helps!”

Living with IBD can affect your whole body, but remember that it can also affect your mental health, too. Living with a chronic illness can be stressful and difficult to manage alone, so it’s important to seek support and help when you need it. A healthy mind promotes a healthy body.

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“It’s not your fault. It’s not the food you eat, or something you did. It’s disease. Be kind to yourself.”
“It’s not your fault. It’s not the food you eat, or something you did. It’s disease. Be kind to yourself.”

You did not cause your IBD. Doctors are currently unaware of the root causes of IBD but it has been proven that it is not the food you ate last week, nor is it something you have chosen for your life. Free yourself of any guilt that may come along with your diagnosis.

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“Do your research.”
“Do your research.”

The research in IBD is moving rapidly. There are new tests, medications, and procedures being created all the time. Be sure to stay up-to-date on the latest happenings in the IBD world, and to find a doctor who is on the same page.

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You're not alone in this
You're not alone in this

An IBD diagnosis can be overwhelming, but just remember that there are millions of patients out there who are happy to help you with this journey. Never be afraid to ask for advice, and be generous with your own advice when anyone asks for it.