IBD resource center

MyKidsChart is the best way to communicate with us for routine questions or requests. Continue to call your pediatrician for any care unrelated to IBD symptoms, like colds, ear infections, immunizations, sports physicals, etc. For IBD calls, please see the guide below.
routine calls to the office:

• Lab and X-ray results (may also be in MyKidsChart)
• Prescription refills
• Medical forms or excused absence note
  for school and work

urgent calls to the office:

• New rash
• Swollen joints
• Any signs of a flare or change in symptoms (like worsening pain or diarrhea)
• Ongoing temperature greater than 100.4 degrees
• New appearance of blood in stool
• Feeling extra tired
• Mental health changes (coping issues, anxiety, depression, etc.)
• Weight loss of more than five pounds in a few days
• Exposure to someone with tuberculosis or chicken pox

go to the emergency room if you have:

• Sudden or serious change in your condition
• Sudden high fever
• Severe abdominal (belly) pain that lasts for more than an hour
• Persistent vomiting

contact information:

• During normal business hours: 937-641-3090
• For emergency calls after hours or on weekends: 937-641-3000 and ask for the GI doctor on-call

Use these helpful tracking sheets to make notes on your IBD treatments and how you're feeling throughout your treatments. These are included in your binder too, but you can print off these PDFs as often as you need to.

• Medication history
• Discontinued medications
• Weekly medication/therapies tracking chart
• Height/weight log
• Tracking your stool
• Tracking your pain
• Office visit planner
• Preparing for your next appointment
• Schedule for infusions/injections

Below is an overview of information about IBD, its symptoms and flares. Read more in the about IBD section of the guide.

what is IBD?
Inflammatory bowel disease (IBD) is an autoimmune disease. This means that your immune system mistakes part of your body as foreign. IBD is a chronic condition that causes parts of the intestine (bowel) to get red and swollen. This is called inflammation. Chronic means that you will have IBD your whole life. But, your symptoms may come and go. Symptoms can include diarrhea, abdominal pain, low energy, problems around the anus, and more. While IBD is chronic, it is treatable. You can have a normal, happy productive life!

what are the types of IBD?
The two classified types of IBD are Crohn's disease and ulcerative colitis. There is also IBD unclassified, when it is not clear if inflammation is due to Crohn's or ulcerative colitis.

• Crohn's disease causes redness, sores and swelling or inflammation in the lining of your digestive tract. The inflammation often affects the entire thickness of the bowel wall. It can affect any part of the gastrointestinal trat from the mouth to the anus. 
• Ulcerative colitis most affects the large intestine (or colon). It causes sores called ulcers that affective the surface of the colon. 

what are flares/flare-ups?
Since IBD is a chronic disease, there can be times after remission when you have symptoms again. These times when symptoms reappear are called flares, or flare-ups. Symptoms may include abdominal pain, cramping, blood in bowel movements and diarrhea/increased bowel movements. Report your symptoms early so that your doctor can provide the best advice for you. Avoiding a flare is better than treating one. Taking your medications as recommended can help prevent a flare.

routine appointments and annual visit
You will have routine visits with your IBD provider at least twice a year. You can also see a dietitian, psychologist or other member of your care team at these visits too. Once a year at your annual visit you will meet with a nurse practitioner (NP) to check in on how you are doing physically and mentally. The goal of this 45-minute appointment is to improve your health and the quality of care we provide. You'll discuss your medicitions and adherence, social needs and school plan, emotional needs, and transition to adult GI care as you get older.

diagnostic testing and labs
Another regular part of IBD care is diagnostic testing and labs. Testing is important so we can see what parts of your body are affected and how we can treat you. We also test to see if you are having a flare, and to watch for side effects of any medicines you're taking. You'll get these results in MyKidsChart, or you may get a phone call with the results and your provider's recommendations. View specific examples of tests/labs you may have here.

There are a variety of treatments for IBD in four major categories: medications, nutrition therapy, surgery, and supplements and natural interventions. Below is a high level overview of the different treatments, but you can read more detail in the treatment section of your binder.

medications
Medications are a common treatment for IBD. There are four major categories - biologics and biosimilars, immunomodulators/immunosuppressants, corticosteroids, and aminosalicylates (SASA). The medications have different purposes like decreasing inflammation or adjusting the activity of the immune system. You can read more about them here.

nutrition therapy and support
In general, a balanced diet is recommended for all children with IBD. The MyPlate method is a great way to ensure you are getting the nutrients your body needs. Sometimes, a more specific diet or nutrition therapy is needed. Enteral Nutrition Therapy involves getting a majority of your food intake through nutrition shakes with a small amount of regular foods. The shakes can be consumed through a tube, or just by drinking them. If you need additional nutrition support and calories, you may receive an IV or have a tube that delivers nutrients into your stomach or bloodstream. Our dietitians can help you determine the best diet for your needs.

You may find that eating certain types of foods can cause your symptoms to get worse. These are called trigger foods. It may be helpful to keep track of these by making a food symptom journal, and then try to avoid them if you're having a flare.

surgery
Each patient is different. Some patients may never need surgery, while others may need it right after diagnosis. This is a decision that you, your parent, and your provider should make together. This is called shared decision-making. Please talk to your provider if you have any questions about surgery.

supplements and natural interventions
Children with IBD sometimes take natural supplements or therapies to help with symptoms. These could include vitamins, supplements, essential oils and probiotics Before adding these to your care plan, talk to your doctor. Do not stop taking your prescribed medications.

Being diagnosed with IBD may make you feel afraid, sad, nervous or just "different." These feelings are completely normal. Learning to cope with IBD often gets easier with time, but it is very reasonable to need some help adjusting. Parents, close friends, psychologists or religious leaders can all be helpful as you adjust. Please know that whatever path(s) you choose, you deserve to feel like you can share about your IBD and feel supported.

We also encourage you to check out ImproveCareNow's toolkits, which share real experiences from IBD patients. Patients share everything from how their friends reacted to sharing about IBD, how to take care of your mental health, boosting your energy, and dealing with body image issues. 

stress and IBD

When the body is focused on dealing with stress, it can't devote as many resources to maintaining a healthy immune system or healing after a flare. This is significant for kids and teens with IBD because we want our body to stay healthy and recover when it gets sidelined by a flare. Here are some ways to manage your body's stress response. You can view more in the mental health and wellness section of your binder.

• Aim to keep a consistent sleep schedule, even on weekends.
• Eat a well-rounded diet that includes fruits, vegetables and lean protein. Avoid processed junk food.
• Aim for at least 60 minutes of heart-pumping activity per day.
• Try to keep a daily routine that includes pleasant activities and relaxation, especially when you're having a rough patch.

People with IBD can live happy, healthy lives. A little preparation and planning can help make you more comfortable at school, when you travel, and at work (if relevant). The everyday life with IBD section in your binder contains a high level overview of handling these situations. We encourage you to visit the links listed below for more information and resources.

• Section 504 plans for K-12: Used to help educate and inform your school of your symptoms and any accommodations you may need. 
• College: Planning and preparation can help the transition from home to college go more smoothly. This includes learning what questions to ask when choosing a college, to setting up meetings once you arrive. The Crohn's and Colitis Foundation has a great section on navigating college with IBD.
• Work: Just like college, being prepared and communicating about IBD can help you feel more comfortable at work. Once comfortable, share with your employer any needs you may have. For example, if your symptoms are worse in th emorning, let your boss know that you may be in late for that reason.
• Travel: Before you leave for any trip, make sure you're prepared to care for any symptoms while you're away. Bring enough medication to last through your trip, know where restrooms are, and always travel with your own toilet paper, soothing wipes, and a change of clothes. Read more tips on traveling internationally in your binder.

Managing IBD care can be expensive and overwhelming. Thankfully, there are programs to help you cover the cost. Read more below and in the financial information section of your binder:

• CMH (formerly known as BCMH): A Health care program through the Ohio Department of Health that helps families of children with special health care needs obtain payment for the services their children need.
• Medicaid: Provides health care coverage for low-income residents.
• Assistance programs and rebates for medicines: Always check the pharmaceutical company's website for detailed information on specific medications. The Crohn's and Colitis Foundation also has great resources.
• FMLA (Family and Medical Leave Act of 1993): Allows eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons.
• Dayton Children's billing resources: Our billing representatives can offer financial assistance and payment plans.

Over time, you'll start to manage your care on your own. Learning all about your disease and health care needs is important when transitioning to an adult care provider. 

Know:

• Your disease
• Your medicines, including: Name, purpose, dosage, potential side effects and interactions
• Your tests and what the results mean for your ongoing care

Develop independence and assertiveness:

• Take personal responsibility for knowing your medication schedule and adhering to it
• Take responsibility for making your own appointments with the doctor
• Self-report your history to the physician rather than relying on parents and caregivers
• Plan for the future, including: How to manage your disease at school, the types of work you might pursue and all aspects of your health insurance

Health and lifestyle:

• Know the effects of drugs, alcohol and smoking on your disease
• Know the consequences of not following your medication regimen
• Understand the impact of your condition on sexual function and fertility

View the checklist in your IBD binder for a more detailed list of steps to prepare to transition to adult care.

There are many great organizations that are here to support you. From initial diagnosis, to flares and remission, these resources can help answer a lot of your questions about life with IBD. Of course, your Dayton Children’s IBD care team is always here to help, too. You can read more about these organizations and resources at their websites linked below, or in the resources section of your binder.

organizations and support groups

• Dayton Children's Hospital: We participate in multiple research and quality improvement projects for IBD. We are also partners with ImproveCareNow. By being part of this group, you can be assured that you are receiving world-class care. Finally, our parent advisory council is an opportunity for our patient families to share feedback to affect change on everything from patient family education to overall hospital experience.
• Crohn's and Colitis Foundation (CCF): A non-profit, volunteer-driven organization dedicated to finding the cures for Crohn's disease and ulcerative colitis, and to improving the quality of life in children and adults affected by these diseases.
• ImproveCareNow: A collaborative community where clinicians, researchers, parents and patients are empowered to learn and continuously improve. The goal is to bring reliable, proactive IBD care for healthier children and youth.
• Ostomy.org support group finder: Support groups for patients who have had an ostomy.
• Local medical legal assistance: Advocates for Basic Legal Equality (ABLE) is a local non-profit law firm that provides legal assistance.

websites

• MyMedSchedule.com: Daily medication tracking
• Crohn's and Colitis Foundation
  • Just Like Me IBD
  • Managing the cost of IBD
  • Diet and nutrition
  • Resources
• ​GI Kids - "Plowing through the Paperwork" guide under PDF downloads
• ImproveCareNow
  • ​Accommodations toolkit
  • Talking about IBD toolkit
  • Body image toolkit
  • Resources from parents and patients based on what they've learned
  • Mental health toolkit
  • IBD Decision Support Tool
    • Learn how to use the IBD Decision Support Tool
    • "Dear Ostomy" - An open letter from one teen to her ostomy
• ​​MyCrohnsandColitisTeam: The social network for people living with Crohn's and colitis to get insights, advice and emotional support from others.

phone apps

• My IBD Manager (Apple, Android): Track and store relevant information between clinician visits
• Doc4me: Helps adolescents and young adults search for adult IBD care doctors
• Medisafe: Add prescriptions and doses, set reminders to take your medicines and refill your medicines
• GI Monitor (Apple): Track your symptoms, such as pain, meals, weight, etc.
• Poop Tracker (Android only): Uses the Bristol scale to determine quality of your poop and track data over time
• Complete (Apple, Android): Resources for managing treatment on HUMIRA
• My Crohn's and Colitis Team: A social network and support group for those living with Crohn's or colitis
• Oshi: Track your symptoms and lifestyle factors, and get an overall wellness score to help you manage your IBD
• myColitis (Apple, Android): Record your bowel movements, symptoms, meals, medications, moods, medical procedures and more