Sad woman holding her stomach engulfed by speech bubble coming from a woman giving advice.

Advice for the Newly Diagnosed: How to Handle the Mental and Emotional Impact of Crohn’s and Ulcerative Colitis

Many times when someone first receives a Crohn’s or ulcerative colitis diagnosis, the focus is on what to eat and what not to eat. However, learning how to live with these diagnoses is about so much more.

If you are in touch with your emotions, you are going to feel sad and disappointed at different times in your journey – and that is normal.

To hear more about how you have handled the emotional impact of these diagnoses, we reached out to our community members and asked: “What is a good piece of advice for someone newly diagnosed with Crohn’s disease or ulcerative colitis?”

More than 200 people shared, and here is what was said.

The importance of self-care

“Do not feel bad when you just have to go back to bed.”

Self-care came up a lot. Many community members shared how much more important self-care becomes when you are living with Crohn’s or ulcerative colitis. You may have to go back to bed or say no to an event, and that is OK.

It is OK to give yourself permission to rest or feel however you want to feel. Only you know what is going on with you. Not everyone in your life is going to understand, and that is OK, too. The only person you have to answer to is yourself.

Sadness and depression are OK. You will go through a lot, but know you will have good days!”

“Do not feel bad when you just have to go back to bed.”

“Take time for you. Do not make excuses, and do not let others make you feel bad.”

“Do your best to de-stress.”

Don't blame yourself for a diagnosis of IBD

“Do not blame yourself.”

Several people shared how important it is to not be hard on yourself when your diagnosis is already hard on you. Nobody handles a diagnosis perfectly. You will have flare-ups, and when you do, you will feel much better in the long run if you can go easy on yourself.

“Do not blame yourself.”

“Do not beat yourself up when you get flare-ups. It is not your fault!”

Support and understanding from others

“Find a support group.”

Neither of these diagnoses is something to go through alone. You will need support. That might look like more conversations with loved ones. That might mean unloading online, taking advantage of support groups such as the Facebook pages for ulcerative colitis and Crohn’s disease.

It might also look like finding support groups available in your community, like those offered at local hospitals, universities, and other community-serving places.

Connecting with others who have the same diagnosis can be largely helpful for figuring out the ins and outs of the disease, as well as removing any shame or stigma you may be experiencing. Bringing anxieties into the light of conversation can bring immense connection and emotional healing.

“You are not alone!”

“Find a support group.”

“Ask for help when you need it! Family and friends are a real help.”

Be patient while navigating a new diagnosis

“Do not get frustrated. It takes time.”

Many community members stressed the importance of patience when it comes to adjusting to what your life looks like now. You will not figure this thing out overnight. Nobody does. Instead, it is a journey.

“Do not get frustrated. It takes time. When I realized most foods seem to hurt me (of course I was eating a lot of salads, thinking healthy would help), I decided just to not eat. Let me tell you, that is not the answer! Just keep your head up, and know others have gone through the same thing and are here to help.”

“Give it time. Find your triggers, and get to know the illness and how it works with your body. And do not let UC control you or change your dreams.”

Life can be enjoyable with Crohn's or UC

“You can have UC and live a normal life.”

As many community members shared, the good news is that many people living with these diagnoses can still enjoy careers, travel, and love lives. Yes, it takes some adjustment.

Many also said that before you can reach the acceptance stage – and then the thriving stage – you may need to take time to be sad and grieve the life you had before. It is normal to be upset because this is not what you pictured for yourself. However, these diagnoses absolutely do not mean that you have to give up on everything good in life.

“My daughter’s doctor told her to not let Crohn’s stop her from doing what she wants to do.”

“You can have UC and live a normal life. UC should never define who you are!”

Thank you to everyone who shared their experiences with this topic. We are especially grateful that so many members addressed the emotional, vulnerable side of these diagnoses.

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