A New Diagnosis of Crohn's or UC: Advice From Others

Receiving the news of a digestive disorder can seem like, well, a punch in the gut. It can feel overwhelming to think about what comes next.

The good news is that you are not alone. Members of the Crohn’s and ulcerative colitis Facebook communities understand because they have been there too. They remember what day 1 of these diagnoses felt like and what they wish they would have known then.

To learn more about the wisdom our community members would like to share with others, we asked them: “What is a good piece of advice for someone newly diagnosed with Crohn’s disease or ulcerative colitis?”

Nearly 200 community members shared. Here is what was said.

Keeping a food log with IBD

“Keep a food log!”

One key piece of advice shared, again and again, was to take note of the foods you are eating, since this is the best way to know for sure which foods are causing your symptoms. Your food log can also help you provide accurate information to a nutritionist or dietitian if you are seeking their help. Do not forget that there are many different apps that let you log your food on your smartphone.

“Make a journal.”

“Keep a food log!”

“Getting into the habit of writing a food journal only gets harder the longer you wait. Keep track of what you were eating when you experience symptoms.”

Diet changes for improved symptoms

“Change your diet.”

Another popular suggestion was to change what you are eating. A few folks suggested eating smaller meals since less food means less substance that could possibly be triggering.

Problematic foods can vary from person to person, though it is common to have issues with high-fiber foods, such as kale and lentils. Dairy, spicy or greasy foods, raw fruits and veggies, nuts and seeds, and popcorn may also be culprits to keep an eye on.

A few people also suggested being more mindful about drinking plenty of water, especially since good hydration helps with digesting food and overall wellness.

“Eat clean.”

“Change your diet.”

Prepared with a change of clothes for emergencies

“Keep a change of clothes at work and in your car.”

It is not fun to think about, but something to consider preparing for. A couple of members mentioned having spare clothes stashed in convenient places, such as the car. Really, it cannot hurt to be ready, and doing so can give you peace of mind.

“Keep a change of clothes at work and in your car.”

Keep close to a bathroom

“Always know where the restrooms are when you are out in public.”

Many community members shared that they focus much more on bathrooms, both in their home and out in public. At home, it might be helpful to keep reading material and flushable wipes handy.

More importantly, several shared that knowing where the bathrooms are in grocery stores and other public places is key. That is because it is not a question of “if” but “when” in terms of having a bathroom emergency.

“Make sure you have a lot of reading material and Desitin. A bathroom is a new place you will be a lot.”

“Always know where the restrooms are when you are out in public. If there are multiple ones in a store, know all the locations. When out and about, know where you can stop to use a restroom if needed (not every business will let you use their restrooms).”

“Know where the bathrooms are at all times. Listen to your body. Good luck to you!”

Each person with inflammatory bowel disease is unique

“Remember, everyone is different.”

Everyone has their own path when it comes to Crohn’s, UC, or other digestion diagnoses. Your symptoms and challenges may be better or worse than others’, but they are part of your unique journey.

Wherever you are on your journey, it helps to have patience for yourself as you figure out how to move forward with what works best for you.

“Remember, everyone is different. Some have Crohn’s of the upper small intestine, and some only have it in the large intestine. Some have both.”

“There are different side effects on everyone who has it, and it may affect you differently than others.”

Thank you to everyone who shared their insights on this topic. We are so grateful for all of the practical advice that was given!