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. What Form Of IBD Do I Have?
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The two main forms of IBD are ulcerative colitis
and Crohn's disease
. They are collectively known as IBD because they have similar symptoms, but they are quite different. In rare cases, there may be difficulties in determining which form of IBD you have. Knowing which form of IBD you have is important, because treatments differ depending on which form of IBD is present. When possible, it's therefore ideal to get a clear diagnosis from your gastroenterologist
2. What Part Of My Digestive System Is Affected?
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The answer to this question will help direct treatment decisions. Just as there are different kinds of ulcerative colitis and Crohn's disease, there are also different subtypes of each of these forms of IBD. The part of the digestive system affected will help your physician form a treatment plan. If surgery is going to be included as part of the treatment plan, you'll want to understand where exactly the doctor will operate. It may be helpful to familiarize yourself with the parts of the digestive system
and how it works.
3. What Will Be My Treatment Plan?
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Treatment for IBD is highly individualized. This is in part because the disease affects different parts of the digestive system. Ulcerative colitis affects the large intestine, and Crohn's disease can affect any part of the digestive tract between the mouth and the anus. Also, other conditions
, such as anemia
, may be present and need to be addressed as part of the treatment plan. Before you leave your doctor's office, be sure that you fully understand all the parts of your treatment plan.
4. When Should I Expect To Feel Better?
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may take time before they affect symptoms, and other medications may take effect immediately. If you have had surgery, it will take time to recover and to get back to your normal activity level. Find out when you should start to see improvements in your symptoms, and what the next step will be if you do not start to feel better.
5. Are There Any Side Effects Should I Watch For?
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Medications carry the risk of side effects
. Some side effects are merely bothersome, and nothing to be worried about. However, other effects may be serious enough that you should call your doctor for instructions. Find out how your doctor would like you to proceed when minor or major side effects occur.
6. Should I Change My Diet Or Take Vitamin Supplements?
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In some cases, a change in diet
may be prescribed, often for a specified period of time. Your doctor may provide a list of instructions on what foods you should avoid. Because IBD affects everyone differently, a vitamin or dietary supplement may be helpful for some people, but not for others. Certain forms of IBD, such as Crohn's disease in the small intestine, can prevent vitamins from being absorbed from food. If you are concerned or confused about your diet, request a referral to a dietitian or a nutritionist who has experience in treating people with IBD.
7. What Symptoms Should I Call You About? Which Are An Emergency?
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Ulcerative colitis and Crohn's disease are chronic disorders, meaning that there are periods of active disease and periods of remission. 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 new symptoms appear. Although rare, emergencies can happen with IBD, and it is best to discuss with your doctor what you should do in the event of an emergency.
8. Do I Need Any Specialists, And How Will You Communicate With Them?
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In some cases, meeting with a nutritionist, psychologist, rheumatologist, 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. Often, physicians will have worked together before, and may even have a communication system in place. Your gastroenterologist should be the one to lead this discussion, as he or she is the physician you are likely to see most often.
9. Should I Make Any Other Changes In My Life?
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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 for a time. Ask your physician which changes would be best to help you to recover and to prevent future flare-ups.
10. How Often Do I Need Follow-Up Appointments?
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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.