Transitioning to Adult Care for Inflammatory Bowel Disease

Our Inflammatory Bowel Disease Transition Clinic is designed to support you as you move from child-centered health care for your inflammatory bowel disease (IBD) to adult care. As your parents become less involved, you will take on more responsibility for monitoring your IBD carefully, making connections with providers and pharmacies and understanding your treatment. Your parents will become less involved as you learn what you need to do to maintain your health and keep your IBD under control.

Moving toward more independence is exciting, but it can also be a little unsettling, causing anxiety. We’re here to help you avoid that. Taking the time to plan your transition to adult care is essential. In fact, several research studies from the peer-reviewed journal Gastroenterology & Hepatology and the Journal of Pediatric Gastroenterology and Nutrition have shown that a planned, informed transition from pediatric care to adult care is critical and has the potential to improve outcomes.

What to Expect When You Change From Pediatric to Adult IBD Care

As you near the age of 18, your pediatric IBD specialist will talk to you about transitioning to adult care. He or she will connect you with our IBD Transition Clinic. This team will explain everything you need to know as you move toward care in the adult Inflammatory Bowel Disease Program, which is housed within Gastroenterology at Froedtert Hospital. Your provider will make sure you have all the labs (blood test results), medications and refills you need. Your doctor will then make an appointment for you with the IBD Transition Clinic located at Children’s Wisconsin.

Meet Your IBD Transition Clinic Team

The IBD Transition Clinic team includes doctors, a physician’s assistant and a nurse coordinator, all of whom specialize in treating people like you who have IBD. All of your test results and medical history from your pediatric IBD care will be available to the adult IBD team at this visit so you don’t have to worry about transferring any of that information. IBD Transition Clinic will make sure you understand your care transition and future care plans. This is your chance to ask any questions you like. We’re here to help!

The transition starts with a one-hour appointment at Children’s Wisconsin during which the transition team will explain all aspects of adult IBD care and review your medical history and IBD treatment. They will ease any changes you’ll need to make with insurance. They will also provide you with information about new medications (such as biologics) and other drugs that could become available to you, and they will talk about your vitamin B12 intake.

The IBD transition team will explain how to connect to them and will introduce you to MyChart, a secure online connection to manage your health. With MyChart, you’ll be able to make and see your appointments, view your health history and get test results any time. You can even connect with one of your providers to tell them you’re having a flare-up and need help with your IBD.

The Adult IBD Team

The adult IBD team includes IBD-focused gastroenterologists to guide your treatment plan, including personalized therapies, new medications you may not have had access to in pediatric care and clinical trials that may help you. The adult IBD team also includes:

• Colorectal surgeons when patients need a surgical consultation
• GI nursing team, including your IBD transition nurse, all of whom are available to answer your questions and help coordinate transitional care
• IBD-focused physician assistants
• GI-focused pharmacists
• GI-focused dietician

Dealing With IBD in College, at Work or Out-of-Town

If you’re leaving your parents’ home to go get your own place, go to college or to move to another town, it’s an exciting time. It can also be stressful, and stress can cause IBD flare-ups and symptoms. Here is a checklist to get you prepared to manage your Crohn's disease or ulcerative colitis in college or anywhere away from home. It will make your life easier, keep you from experiencing too much stress and help us help you when you call us about a flare-up or symptoms. Keep information such as your medication list, your doctors, health clinics, hospitals and pharmacy on your smartphone if that’s the easiest way to be sure it is always available.

• Keep a current list of medications you take for your IBD with the dose for each and how often you take it. Note the name of your pharmacy with the address and phone number.
• If you change your insurance, be sure to tell us right away. Many IBD medications need insurance approval. Telling us about insurance changes is very important because insurance authorization for medications can take several weeks. If you can’t take your medications because you’re waiting for insurance authorization, you can have IBD flare-ups you could have avoided.
• Set yourself up with doctors near you. Make sure you can easily visit them by walking, driving or taking a bus.
  • Primary care doctor. If you have problems — even if they aren’t related to your IBD — you’ll have a doctor who knows you and understands your health needs. Be sure this doctor has practicing privileges at the clinic or hospital where you will go if you need tests, imaging or infusions. Your doctor will need to sign this order.
  • GI specialist. If you have a problem with your IBD and are too far away to come and see us, you’ll need a GI doctor who understands your IBD near you. This doesn’t mean you’re stopping care with us; you’re just making sure you have another option. We can help you find a GI doctor and give you a referral if you need one.
• Find a hospital or clinic near you for blood tests, imaging and IV medications.
  • If you are on IV medication infusions for your IBD, unless you plan to travel back home for treatment, find a hospital or clinic near you that can continue your treatment. Even if you don’t get these regularly, we may order iron infusions, IV electrolytes or other infusions if you need them. Tell us if you will go to a clinic or hospital that is not in the Froedtert & MCW health network. Tell us the name of the clinic or hospital and its main phone number.
  • When you’re having a flare-up, we will usually want you to have tests (blood work, imaging or both). Unless you plan to travel back home for treatment, find a hospital or clinic near you that can continue do these tests. If you will go to a clinic or hospital that is not in the Froedtert & MCW health network, be able to tell us the name of the clinic or hospital and its main phone number.
• If you’re in college or planning to go, these steps will help in dealing with IBD in college:
  • Connect with the Student Health Center at your school. These centers may offer some of the medical services you need while you’re at school. If they can’t, they can usually help you find doctors, clinics and hospitals nearby.
  • If you’re still in the college “shopping” phase, be sure to ask about a Student Health Center and make it part of your tour.
  • Let us know if you need letters for college accommodations for Crohn's disease or ulcerative colitis, such as for dietary or housing restrictions. We will also give you a letter that says you have a chronic condition that causes flare-ups and may require you to miss classes and to have access to a toilet at all times. We can give these letters to you or forward them to your school. If you want us to forward them, we’ll need the name of the school, a contact name, a mailing address, email address or fax number.

Tips to Make Your Transition as Smooth as Possible

Contact us right away if you’re having a flare-up.

• Don’t wait until your symptoms get worse! It’s easier to treat a small problem before it becomes serious. If you wait until it’s really bad, there will be less time to make it better.
• Contact us yourself, rather than having your parent(s) call for you. We’ll have questions your parents won’t be able to answer. Multiple phone calls mean delays in treating you.
• Contact us by calling or by using MyChart.

Know what having a flare-up means to you.

If you’re having a flare-up, you may experience any or all of the following:

• Abdominal pain
• Rectal pain
• Nausea with or without vomiting
• Diarrhea, sometimes with blood
• Constipation
• Problems tolerating food or feeling full very quickly when you eat

Know the answers to these questions. We’ll need this information to start treating you.

• When did your symptoms start?
• Are you having abdominal or rectal pain?
• Where is your abdominal pain located?
• Is there anything that makes it better?
• How many bowel movements are you having in a 24-hour period?
• Do you need to get up at night to have a bowel movement?
• Are you having problems with urgency — needing to have a bowel movement “right now?”
• Are you having incontinence — having a bowel movement “accident?”
• What are your stools like (loose, watery, formed, mushy, etc.)?
• Is there blood in your stool? Is it on the paper when you wipe or in the toilet?
• Are you nauseous or throwing up?
• Are you having trouble eating or do you feel full fast when you eat?