Introduction

You have probably found that your circle of healthcare providers has expanded since you were first diagnosed with inflammatory bowel disease (IBD). This newsletter will help you understand the role of each member of your healthcare team, find good healthcare providers and build good relationships with them, coordinate your care, and get a second opinion if you need one. By following just a few simple steps, you will become the captain of your healthcare team and ensure that you get the care you need and deserve.

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Who's on First?

As the number of different healthcare providers in your rolodex grows, it helps to have a clear understanding of everyone's role. Knowing who to call and when to call them will save you time, energy, and delays in care. Here is a list of key healthcare providers that may be involved in your care. Click on each name for more details.

· Primary Care Provider

Your primary care provider (PCP) – typically an internist or a family physician – is usually the doctor most familiar with your complete medical history and overall health. You probably see your PCP for annual exams and other health maintenance care. A PCP is in a position to coordinate your care and make referrals to specialists.

· Gastroenterologist

A gastroenterologist is a specialist who focuses on your entire digestive tract, from your esophagus to your anus, including the liver and pancreas. Some gastroenterologists further specialize to focus on treating just one gastrointestinal disease, like IBD, while others treat all of them.

· Colorectal Surgeon

Colorectal surgeons are surgical specialists who focus on the lower digestive tract. They become board certified only after four years of medical school, at least five years of surgical training, and about two more years of colorectal surgery specialty training. You might assume that colorectal surgeons spend the bulk of their time in the operating room, treating problems like colon cancer and fistulas. While that may be true to some extent, their practice is also likely to include minimally invasive outpatient diagnostic testing, like colonoscopies.

· Physician Assistant

A Physician Assistant (PA) is a licensed health care provider who practices medicine under the direct or indirect supervision of a licensed physician. The PA provides health care services that physicians traditionally perform.

· Nurse Practitioner

A Nurse Practitioner (NP) is a registered nurse who has completed advanced nursing education and training, and can provide a wide range of health care services. Each state has its own rules and regulations for a NP, and in some states a NP functions independently of physician supervision.

· Registered Dietitian

When your IBD flares and you don't feel like eating, a registered dietitian (RD) can help you avoid malnutrition and identify the foods that may improve or worsen your symptoms. RDs must be accredited by the American Dietetic Association after completing a four–year degree program and an internship. (Be aware that anyone can call themselves a "nutritionist," for which there is no accreditation process.) Your best bet is to find an RD who has experience helping people with IBD.

· Pharmacist

While your physician will typically be the one who prescribes your medications, a pharmacist is responsible for dispensing them. Because of their specialized training, pharmacists can tell you how to use a medication correctly and how it fits in with other drugs and supplements you may already be taking. Your pharmacist should always confirm that you have no known allergy to a medication and ask whether you're taking anything else that might interact with your prescription.

· Mental Health Professional

Like most folks with a chronic illness, you probably feel a bit "down" now and then. But if you can't shake off feelings of depression, anxiety, or stress, and they begin to affect other aspects of your life, you may want to seek the help of a licensed clinical social worker, psychologist, or psychiatrist. For more information, refer to the newsletter titled "Finding Support When You Have Inflammatory Bowel Disease," by Laura Strohmeyer, RN, CGRN.

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How do I find good healthcare providers?

When it's time for a new car or major appliance for your home, you probably spend time researching your options and comparing notes with friends and family. Finding a healthcare provider should be no different – after all, it's your health that's at stake! It's often easiest to start by getting recommendations from friends, coworkers, and family, as well as acquaintances who may also have IBD.

One very helpful source for information regarding health care services is your local chapter of the Crohn's and Colitis Foundation of America (CCFA) – the CCFA website has links to chapters by state. Professional organizations, like the American Medical Association (for all medical doctors), the Gastroenterological Association or the American College of Gastroenterology (for gastroenterologists), the American Board of Colon and Rectal Surgery (for surgeons), and the American Dietetic Association (for registered dietitians) can also be good sources for referrals. Keep in mind that, depending on your health insurance, your choices may be limited to healthcare providers who participate in your plan.

Once you have a list of options, ask questions:

• Do you accept my health insurance?
• At which hospital(s) do you have privileges?
• Where are you located?
• What are your office hours?
• How long does it usually take to get a routine appointment?

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How can I build a good relationship with my healthcare provider?

Having a good relationship with your healthcare provider is an important component of your healthcare, whether or not you have a chronic disease. Here are some tips to get you off on the right foot:

• Be honest – about your medical history and whether or not you are taking your medication as prescribed. You might be tempted to say what you think your healthcare provider wants to hear or that you're feeling better than you truly are. But the only way your healthcare provider can give you personalized treatment is if he or she has complete and accurate information about you and your condition
• Be informed – communication between you and your healthcare provider should be a two–way street. The more you know about IBD, the more you can play an active role on your healthcare team. To that end, you should be sure to read your medication labels and instructions, understand what your medications are for, and know when you will need to refill your prescriptions.
• Be prepared – the better prepared you are, the more you will be able to accomplish during each appointment with your healthcare provider. Try keeping a list of your questions, symptoms, and concerns, and bringing the list with you to your appointment. It often helps to bring a trusted family member or close friend along – someone who can help ask questions, take notes, and remember what was said. Be sure to know the names and dosages of all of your prescriptions and over–the–counter medications. You can use a Mind Your Meds chart to help you keep track.
• Ask questions – when it comes to your health, no question is a dumb question. While it's true that healthcare providers are often very busy and tend to be in a hurry, part of their job is to spend time with you in order to give you the information you need. Start with your most important questions first, in case you run out of time. Try to be specific, asking for clarification about anything you don't understand. It's often helpful to repeat the answers back in your own words, to make sure there are no misunderstandings. Click here for specific questions to ask about your medication, and click here for specific questions to ask about surgery. For more information about IBD medication, refer to the newsletter, "Mind Your Meds – An Updated Review," by Dr. Nisa Kubiliun and Dr. Jamie S. Barkin. For more information about surgery, refer to the newsletter, "IBD and Colorectal Surgery," by Dr. Steven Wexner and Dr. Yair Edden.
• Keep your appointments or call to cancel before the last minute – that's common courtesy. Doctors' offices are busy places and schedules are often booked up for several weeks, so it may be difficult to quickly get another appointment when you cancel. Plus, missing an appointment can convey the impression that your health is not a priority.
• Understand that sometimes a long wait in the waiting room may be inevitable – most healthcare professionals have very little control over their schedules. A clinic's appointment schedule often leaves little wiggle room for very complicated patients, computer problems, staff turnover, or other issues that are beyond your healthcare provider's control. The result is that, on occasion, your doctor may be running late.

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How can I make sure all of my healthcare providers are on the same page?

It's a good idea to keep your PCP's contact information handy. That way, whenever you see a specialist or undergo testing by another healthcare provider, you can ask that the results be sent to your PCP (you may need to sign a release form). You can also make sure your PCP has contact information for the specialists you have seen, along with the dates of each appointment and any tests that were performed.

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When should I think about getting a second opinion?

It's a good idea to get a second opinion if you receive a serious diagnosis or need surgery. Be sure to let your healthcare provider know your intent. Second opinions are standard practice, and a good doctor will not be offended. In fact, he or she should be able to give you the name of other reliable doctors with whom to consult. When you go for the second opinion, bring all relevant records and test results, and be up front about the fact that you are looking for a second opinion. Once you have a second opinion, compare similarities and differences in order to make the most educated decisions regarding your care. You may also want to discuss these similarities and differences with family/friends and other members of your health care team.

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Conclusion

Your healthcare team is a very important part of your life – one that is there to help you manage your IBD and keep your symptoms in check. When you become an active member of that team, you will be able to participate fully in all of the decisions related to your care. It's both your right and your responsibility!

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