When you're newly diagnosed with inflammatory bowel disease (IBD), so many thoughts are swirling around your mind that it can be difficult to focus and get the information you need from your doctor. Use these questions (you can print them here) to get the dialog started and learn what you need to know now to get your IBD under control.
1. Which form of IBD do I have?
The two main forms of IBD are ulcerative colitis (UC) and Crohn's disease (CD). They are collectively known as IBD because they have similar symptoms. In some cases, they are indistinguishable from one another. However, they need different forms of treatment and maintenance. So it is important, when possible, to get a clear diagnosis of UC or CD.2. What part of my digestive system is affected?
The answer to this question will help direct treatment decisions. Some drugs may work better for treating different parts of the digestive system. If surgery is part of the treatment plan, you'll want to understand where the doctor will operate. You may want to familiarize yourself with the
parts of the digestive system and how it works.
3. What treatment and/or medication is recommended?
Treatment for IBD is highly individualized. This is in part because the disease may affect different parts of the digestive system. UC affects the large intestine, and CD can affect any part of the digestive tract. Also, other conditions such as
anemia or
malnutrition may also be present and need to be addressed as part of the treatment plan.
4. When should I expect to feel better?
Some
medications may take time before they effect symptoms, and others may take effect immediately. Find out when you should start to see improvements and what the next step will be if you do not start to feel better.
5. What side effects should I watch for? Which ones should I call you about?
Some medications may cause
side effects. Some side effects are merely bothersome, and nothing to be worried about. However, other side effects may be reasons to call the doctor. Find out how your doctor would like you to proceed when side effects occur.
6. Should I change my diet? Should I take vitamin supplements?
In some cases, a change in
diet may be prescribed. Your doctor may provide a list of instructions on what foods you should avoid. Because IBD affects people differently, vitamin or dietary supplements may be helpful for some people, but not for others. If you are concerned or confused about diet, request a referral to a dietitian or a nutritionist.
7. If I have symptoms, when should I call you? What symptoms are an emergency?
UC and CD are chronic disorders, meaning that there are recurring symptoms such as diarrhea. Not all symptoms will require a special trip to the doctor's office; some can be discussed at the next regular appointment. However,
some symptoms will need immediate attention. Find out when your doctor would like you to come in for an appointment, such as if your symptoms change, or if certain new symptoms appear.
8. Do I need to see any specialists, and how will you communicate about me?
In some cases, a nutritionist, dietitian, psychologist, or other healthcare professional may be helpful. It is critical that your doctors talk to one another and help you formulate and follow your treatment plan. Your gastroenterologist should lead this discussion, as he is the primary caregiver, and the doctor you are likely to see most often.9. Should I make any other changes in my life?
Unfortunately, people with chronic illness may find that their energy levels are lower than they were before. It is important to get enough sleep, manage stress, get appropriate exercise,
stop smoking, and eat a proper diet. In some cases, certain foods and activities may need to be limited. Ask your physician which changes would be best to help you recover and prevent flare-ups.
10. How often do I need monitoring such as blood work and endoscopy tests?
IBD requires regular monitoring to assess the benefits of treatment and to watch for complications or related conditions. Find out how often you should be seeing your doctors and when you need tests, such as a colonoscopy or a blood test, to assess your condition.
