8 UC Patients Reveal the Best Advice They've Ever Receivedby Jackie Zimmerman Patient Advocate
“When in remission, eat what you love.”
UC can be pretty hard on your gut, and during a flare-up, you often have to alter your diet, perhaps sticking to BRAT (Bananas, Rice, Applesauce, Toast). So when in remission, celebrate by eating things that make you happy and just taste really good. Says Lucia Quadraruopolo: “Eat that ice cream if you’re craving it!”
Make rest a top priority
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!
“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.
“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 one of the most important things you can do for yourself as someone with a chronic condition like UC. Don’t be shy when talking to your doctors: Ask as many questions as you have, and tell them honestly how you feel about the care you’re getting. Remember: It’s OK to get a second opinion. As Emily Whitaker Cox reminds us, “Doctors don't have all the answers. You have to figure out some things on your own.” For example, certain treatments may not jive with your body and your lifestyle. And that's OK; you just have to speak up.
Check out these tips from veteran IBD-ers on how to advocate for yourself.
Have a sense of humor
Living with IBD can affect your whole body — and that includes your mental health, too. That’s why it’s extra important to find levity in your days… and that can include laughing at yourself. Embarrassing UC moment? Make it funny! Humor can be healing, not to mention that it disarms people, so you may finally open someone else’s eyes to what you’re going through and break down UC stigma a bit more. Take it from HealthCentral writer Mandy Morgan, who has UC — there was inherent humor in one situation she ended up in: speed dating on the same day as her colonoscopy.
“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.
“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.
Do your research
Here’s some advice from me: It’s important to get educated on UC. Science is ever-changing, and it’s no different in the IBD world. 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 find a doctor who is on the same page about your treatment goals.
You're not alone in this
A UC diagnosis can be overwhelming, but just remember that there are millions of patients out there (follow our favorite UC Instagrammers!) and numerous IBD organizations eager to help you on your journey. As someone who has lived with UC for years, take it from me: Never be afraid to ask for advice, and be generous with your own wisdom when anyone asks for it.