Finding out you have a long-term condition like Crohn's disease can cause a mix of emotions. You might be worried or sad. You could be in denial. Or you may feel like it’s your fault that you have Crohn’s (it’s not).
If you have a loved one with Crohn's, you can go through some of the same things. You may fear for their health or be upset because they can't do all the activities they used to.
Either way, there are things you can do to help handle the challenges of living with Crohn's.
Take Control
Crohn’s disease can change your life in many ways. That sometimes feels overwhelming. If you find ways to cope with this stress, you can improve your quality of life. Stress doesn’t cause Crohn’s disease, but it could make your symptoms worse.
Planning can help you feel more in control and reduce the stress of living with Crohn’s disease. Here are some steps you can take:
Give yourself structure. Every morning, create a plan for the day to come. Schedule time to recharge and to handle any medical needs. Each night, do some prep work for the next day. Lay out your clothes, write up a to-do list, or do whatever else you need to get ready.
Know your needs. As you prepare for upcoming days, think about how you'll deal with your physical symptoms. For example, figure out where the bathrooms are before going somewhere. You could use a smartphone app to do this. Bring back-up underwear, toilet paper, and wipes if you need to.
Let people know about any food and drink restrictions you have. Before going to a restaurant, visit their website to see the menu so you can avoid problem foods. Tell your friends or family if they can do anything to help you.
Talk to your doctor. Tell your doctor about diarrhea, gas, or pain you have while you're out in public. They can give you tips for managing these symptoms.
Also, tell them before you go on a long trip or travel far away so you can be sure you have enough medicine. Ask for your medicine's generic name in case you need more during your trip. And get the names of some doctors at your destination.
Take Care of Your Mental Health
No matter how well you plan and organize, sometimes you won't feel your best emotionally. These steps may help:
Evaluate work or school. Crohn’s disease shouldn't stop you from getting an education or having a career. But take precautions to protect your physical and mental health. You may need to make some changes if you have:
- Supervisors or teachers who don’t support you
- Projects or a schedule that your body can’t handle
- Lots of stress
- A schedule that’s not flexible enough
Add things you’re excited about to your calendar. In your daily plan, include activities that bring you joy. Just make sure they fit your energy level. They could be as simple as listening to an album you love or reading a magazine.
Put your best foot forward. Some people with Crohn's disease struggle with body image. You might feel bad about weight changes, surgery scars, or a colostomy bag. It helps to stay well-groomed and wear clothes that boost your confidence.
De-stress. When you feel tension building up, try strategies like these to release it:
- Deep breathing
- Progressive muscle relaxation (where you tense up, then relax, each area of your body)
- Exercise
- Meditation
Get Support
When you struggle emotionally, sharing your experiences can help.
You may find comfort in talking to friends and family. Others who have Crohn’s disease can also provide insights and support. Look for support groups that meet online or in person near you. Ask your doctor for recommendations, or check the websites of groups that focus on inflammatory bowel disease. The Crohn's & Colitis Foundation is a good place to start.
If you feel sad or stressed out for several weeks, call your doctor. They may recommend a psychologist or psychiatrist. Crohn's disease increases your chances of mental health issues like anxiety and depression. Symptoms to watch out for include:
- Nervousness
- A hard time concentrating
- Less enjoyment of life
- Feelings of hopelessness
If you decide to find a therapist on your own, look for one who has experience with issues related to inflammatory bowel disease.
Tell someone right away or go to the emergency room if you have thoughts about harming yourself. You can also call 800-SUICIDE or 911.
What Loved Ones Can Do
Here are some ways you can support someone you care about who has Crohn’s disease:
Respect their privacy. You may want to learn more about the disease to understand what they’re dealing with. But to some people, that could feel like you're invading their privacy. Talk to them before you do a lot of research. Or learn more about Crohn's together.
Listen. If they share what life is like for them, listen with an open mind. Avoid the temptation to offer advice if that’s not what they want. Instead, be empathetic.
Don’t judge. Your loved one may need to reschedule or cancel social events with little notice. Your understanding can ease the anxiety or disappointment they may feel. Keep your opinions about their food choices to yourself. And understand that they may not be able to handle the same physical tasks as other people.
Build their self-esteem. Crohn's or treatments for it might change your loved one’s appearance and make them self-conscious. Do what you can to boost their self-image.