Mental and Emotional Well-Being

IBD can affect almost every part of your loved one’s life, from school and work, to sports and hobbies. This may sound like a lot, but there are many things you can do as a family to make their day-to-day easier to navigate. 

Here are some key things to remember:

  • Many people with IBD need to take medication for the rest of their lives, but they can still live fulfilling lives and accomplish their goals.

  • IBD is unpredictable, and their symptoms can change from mild to severe.

  • They will have periods of feeling well, and they will have times when they have flares with active symptoms.

  • Their healthcare team (gastroenterologist, dietitian, psychologist, social worker, etc.) will be available to guide you through these ups and downs.

Will they be able to go to school, hang out with their friends, or play sports?

They will be able to do many of the same activities they did before. However, they may need to take certain precautions when they are not feeling well or they are too tired.

What if they forget to take their medication?

It’s important that they take their medication as prescribed. You can help set them up for success by creating a medication journal, a calendar, or an app on their phone to remind them when they need to take medication.

Who should they tell about their IBD, and how much should they disclose?

The easy answer is that they should tell whoever they want and as much as they want. But that isn’t always easy for children to figure out. Some people will need to know all the details, like their school nurse. If they are away from home, maybe at college or summer camp, someone needs to be their healthcare point person that can help them when their doctor isn’t available. That point person will need to know your child’s history, symptoms, and the emergency care that works.

Other people, like their teachers and their boss, only need to know some details to understand how their IBD symptoms can affect their daily life.

How will my child’s IBD affect their education?

Whether it’s elementary, middle, high, or college, your loved one spends a lot of time at school. Because IBD is unpredictable, they will need a backup plan with someone who knows their medical situation and can help you if they have an emergency.

Their IBD and treatments might affect their school attendance or performance. They might have to miss school when they have medical appointments or if they’re not feeling well during a flare. It’s good to remind them that they are still responsible for learning the required subject matter. You can help by requesting a 504 plan which is a document that will give them certain accommodations or special services they may need. This could include extra time to take your tests if they have to go to the bathroom, or getting to take home some of their work during a flare.

Here are some tips that may help your child feel more comfortable in their daily life:

  • Help them prepare an emergency kit that can be stored discreetly in their backpack or the nurse's office. The kit should include toilet paper, wet wipes, powder, hand sanitizer, a small can of air freshener, disposable gloves to handle soiled clothes, bags for soiled clothes, clean underwear, and clean shorts, pants, or leggings.

  • Have them create a private signal with their teacher to indicate they need to use the bathroom.

  • Tell them to request a seat closest to the classroom exit for when they need to leave to use the bathroom.

  • Work with them to come up with a plan for getting notes if they miss a class or a test.

  • Encourage them to confide in a trusted friend that can be a source of support during the school day.

IBD and Mental Health

Your loved one will likely have a lot of feelings and emotions regarding not just their diagnosis and the impact on their life, but the medications, doctor appointments, and even surgeries it takes to manage their illness. It’s not uncommon for children to feel private or even embarrassed about their illness. Remind them that their mental health and emotional well-being are just as important as their physical health. Tell them to talk to you, their doctor, or another trusted adult if they are feeling anxious, sad, or depressed. Here are some things to keep in mind:

  • Keep the conversation about IBD going. Be available to listen to their fears, their hopes, and their dreams. Remember that patients with IBD often experience a rollercoaster of emotions.

  • Remember to check in with them about their friendships, schoolwork, sports, and hobbies.

  • Give them the space they may need. That could mean letting them talk to their doctor alone from time to time.

  • Enlist the help of mental health professionals if you feel they would benefit from therapy, medication, or other ways of coping emotionally with IBD.

  • Remind them (and yourself!) that they are more than their IBD. Help them accept their illness, so they can continue to do what they enjoy.

  • Encourage them to continue the activities they enjoyed before IBD and try something new! They can modify their activities if they have to so they can participate fully.

  • Encourage them to form friendships with people who understand and support them.

  • Talk to them about the importance of a regular exercise routine, with their doctor’s approval. Exercise can improve their overall health, reduce stress, and help to maintain and improve bone strength.

  • Talk to them about seeing a mental health specialist to discuss their day-to-day life, and becoming more accepting of living with a chronic illness. 

Positive Body Image with IBD 

How your loved one feels about their physical appearance and how their body functions can have both a positive and negative impact on their self-esteem, relationships, and mental health.

Body image is something many people struggle with, but living with a chronic illness can amplify negative feelings about your body. IBD can have an overwhelming impact on how you look and how you feel, both emotionally and physically, as you deal with medication side effects, disease symptoms, nutrition changes, and surgery.