When you're managing your Crohn's disease, a great relationship with your health care team is key. You'll have Crohn's for the rest of your life, so it's important that you feel comfortable reaching out whenever you have questions or need help.
To build that relationship with your Crohn’s doctor:
Be prepared. Before your appointment, write down any questions you have, so you don't forget to ask them. You may want to list them from most important to least important in case time with your doctor is limited. Write down the answers you get, so you remember them later. Ask follow-up questions if you don't understand what you're hearing.
Keep track of your symptoms, so you can share them with your doctor at your next appointment. Even if they don't seem related, jot them down. Note any new stresses or recent life changes, too.
Set treatment goals. Because there's no cure for Crohn's, you'll work with your doctor to come up with a treatment plan. The goal is to ease the inflammation that triggers your symptoms.
Your plan could include:
- Different medications
- Nutrition therapy
Your doctor may also suggest home remedies like:
- Diet changes
- Stress relief
Bring someone with you. It's a good idea to bring a family member or friend with you to your doctor’s visits. They can take notes to help you remember what you're told. They can also give you support and help you share your symptoms, or any concerns or questions you have.
Stay up to date.Clinical trials and new research happen all the time. Ask your doctor where you can get more information about breakthroughs and studies, and then do your homework. It may make it easier to ask your doctor about options that might work for you.
Advocate for yourself. Listen to what your care team has to say. Then, don't hesitate to speak up. Share fears or doubts you have, as well as your opinions and ideas. You are your best advocate. Getting as much information as you can will help you make the best decisions about your care.
Know when to ask for help. Always watch for changes in your symptoms. Know which ones need help right away and which ones can wait for you to talk with your medical team.
Call 911 (or have someone do it) if you:
- Pass out
- Have extreme belly pain or bleeding
Call your doctor right away if:
- You are dehydrated. (You have a dry mouth, sunken eyes, and your urine is very dark.)
- You have pain, swelling, blood, or pus draining from your anal area.
- You have a fever or chills that make you shake.
- Your belly feels bloated.
Let your health care team know if:
- Any new symptoms get worse.
- You have diarrhea that is severe or lasts for more than 2 weeks.
- Your pain is severe or doesn't get better.
- You have weight loss that you can't explain.
- You have fever or shaking chills.
- You have persistent vomiting.
The symptoms noted above could mean that you’re having a Crohn’s flare. During a flare, you might also have:
- Mouth sores
- Abdominal cramping
- Reduced appetite
If a flare happens, your doctor may recommend blood work and imaging tests, and consider whether you need additional or different treatments.