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Crohn's & Colitis Program, Patient Information Guide

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Crohn's & Colitis Program, Patient Information Guide Inflammatory Bowel Disease Program Patient Information Guide Page # Contents ..........................................................................................................................................1 Welcome! Welcome Letter ....................................................................................................................3 Important Things to Know Up Front ....................................................................................4 Meet Your Crohn’s & Colitis Team .....................................................................................6 How to Contact Us Crohn’s & Colitis Clinic Schedule .....................................................................................11 Physician and Nurse Contact Information..........................................................................12 Appointment Scheduling and Other Contact Information..................................................13 The Basics of Inflammatory Bowel Disease (IBD) Basic Information about Inflammatory Bowel Disease (IBD) ...........................................14 Frequently Asked Questions about Inflammatory Bowel Disease (IBD) ..........................18 Testing in IBD Colonoscopy and Flexible Sigmoidoscopy ........................................................................20 Upper Endoscopy ...............................................................................................................21 Capsule Endoscopy and Deep Enteroscopy .......................................................................22 Laboratory Tests ................................................................................................................23 Imaging Tests .....................................................................................................................25 Treatment Options in IBD Medicines 5-ASAs .........................................................................................................................28 Azathioprine/Mercaptopurine ......................................................................................32 Methotrexate ................................................................................................................36 Prednisone ....................................................................................................................41 Entocort®, Uceris® .......................................................................................................45 Anti–Tumor Necrosis Factor Antibodies (Anti-TNFs) ................................................48 Gut-Specific Anti-Adhesion Therapies (Entyvio® [Vedolizumab]) .............................53 Anti–Interleukin 23 Therapies (Stelara® [Ustekinumab]) ............................................58 Xeljanz® .......................................................................................................................63 Tysabri .........................................................................................................................67 Cyclosporine ................................................................................................................71 Tacrolimus ...................................................................................................................74 Mycophenolate .............................................................................................................77 Surgery for Inflammatory Bowel Disease .........................................................................81 Therapeutic Studies in Clinical Research ..........................................................................85 Original: September 30, 2009 Page 1 Revised: June 19, 2019 Inflammatory Bowel Disease Program Patient Information Guide Page # Maintaining My Health My Information ..................................................................................................................96 Friends and Family Form ...................................................................................................96 My Appointment Planner ...................................................................................................97 My Medicines ....................................................................................................................98 Planning for My Next Visit ................................................................................................99 Bathroom (Bowel Movements) Tracker ..........................................................................100 Prednisone Taper Schedule ..............................................................................................101 Characteristics of My Inflammatory Bowel Disease ........................................................102 Surgery on My Gastrointestinal (GI) Tract ......................................................................103 Monitoring My Laboratory Tests .....................................................................................104 Preventing Complications by Monitoring My IBD Medicines ........................................105 Preventing Infections with Vaccines ................................................................................105 Vaccines ...........................................................................................................................106 Smoking and Inflammatory Bowel Disease .....................................................................109 Tuberculosis (TB) and Hepatitis B Testing ......................................................................109 Preventing Skin Cancer ....................................................................................................109 Preventing Bone Loss ......................................................................................................110 Preventing Colon Cancer .................................................................................................114 Preventing Cervical Cancer (for Women) ........................................................................116 Sexual Health and Childbearing Issues in IBD Sexual Health ...................................................................................................................117 Fertility, Pregnancy, and Breast-feeding with IBD ............................................................ 117 Genetic Risk for IBD in Childbearing ..............................................................................120 Resources University of Michigan Crohn’s & Colitis Program Website ..........................................121 Crohn’s & Colitis Foundation of America .......................................................................122 Clinical Research at the University of Michigan .............................................................123 Recommended Books about Inflammatory Bowel Disease .............................................124 Useful Websites ...............................................................................................................127 Medical Records Place your test results and other documents here. Original: September 30, 2009 Page 2 Revised: June 19, 2019 Inflammatory Bowel Disease Program Patient Information Guide Welcome to the Crohn’s & Colitis Clinic Departments of Internal Medicine and Pediatrics Division of Gastroenterology Managing Editor: Kristen Boardman, PA-C Contributors: Leslie Aldrich, MD, Grace Elta, MD, John Del Valle, MD, Shail Govani, MD, Peter Higgins, MD, Terry Logan, RN, Beth Manoogian, MD, Swati Patel, MD, Michael Rice, MD, Ryan Stidham, MD, Lisa Sylvest, RN, Akbar Waljee, MD We are glad you have chosen us to help you manage your inflammatory bowel disease. This binder is a resource that will help you take an active role in your medical care. It will also help you understand inflammatory bowel disease and how it will impact your life. We have included our contact information, as well as pages to record your test results and current medicines. You will also find information about treatment options and other helpful resources. The quality of your care is our number one goal. We are a team of physicians, physician assistants, registered nurses, and medical assistants. We want to partner with you to make sure you have the best quality of life possible. To do this, we ask you to come to all of your visits and take your medicines as prescribed by your gastroenterologist. We need to see you at least once every 6 to 12 months and maybe more often, if necessary. Your well-being is our number one concern. If it is easier, you may have some blood tests done at a lab close to your home. Please ask the lab to fax us the results. If you are not able to attend your scheduled clinic visits or have lab tests done as needed, we are not able to care for you safely and your health can be affected. We look forward to getting to know you. We will work together toward your goals so that you can live your life to the fullest. Original: September 30, 2009 Page 3 Revised: June 19, 2019 Inflammatory Bowel Disease Program Patient Information Guide Important Things to Know Up Front If you are ill or are having side effects between 8:00 AM and 4:30 PM on a weekday call your nurse (see phone number on page 12). If you are thinking of going to the ER, call your nurse first because we will try to see you right away. If you cannot reach us and you are seriously ill, please do not wait until the next day; go to the ER right away. When you call the Crohn’s & Colitis Clinic be prepared
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