INFLAMMATORY BOWEL DISEASE 101: Understanding Your Child s Diagnosis Phillip Minar, MD Pediatric Gastroenterologist Cincinnati Children s Hospital Medical Center
Questions and Answers
Outline for Todays Discussion IBD Causes Treatment options Living with IBD Ways to succeed Patient and Family Involvement (research, community) Resources Please interrupt, ask questions
Just a beginning
By the numbers 1,600,000 people with IBD in US 80,000-140,000 <18 years old 70-90 children diagnosed each year with IBD at Cincinnati Children s We care for ~700 IBD patients No cure for IBD Improved treatments have reduced the need for surgery and have drastically improved the quality of life of kids with IBD CCFA.org
The diagnosis IBD Ulcerative colitis 30% Crohn s Disease 60-65% Indeterminate colitis 5-10% Features of both Crohn s & UC that may take time to determine if Crohn s or UC
CD is 2-3 times more frequent than UC CD UC IC Very early onset UC=CD
Cause of IBD? webmd.com: IBD is a disease with an unknown cause. health.com: Inflammatory bowel diseases, which include Crohn s disease and ulcerative colitis, are a bit mysterious. wikipedia.org: IBD is a complex disease which arises as a result of the interaction of environmental and genetic factors.
Multifactorial causes of IBD Genes 163+ Loss of : 1. Barrier function 2. Bacterial killing 3. Immune regulation Environment (Microbiome) IBD Improper Immune response 1. Increase in Aggressive bacteria 2. Decrease in Protective bacteria Immune system attacks healthy cells of the gut, causing inflammation
Role of Microbiome Billions of bacteria in intestine Bacteria change with genes, food, antibiotics Bacteria are different in IBD patients, and are main activator of immune system Protective bacteria protective, harmful bacteria IL-1β TNFα TH 1 No immune activation No Colitis Immune activation Colitis 1. Farrell M. IBD Family Day 2009. 2. Lewis J. Breakthroughs in IBD Research webcast 2012.
IBD analogy
IBD Myth s caused by stress Same as IBS (irritable bowel syndrome) it was something I ate I will feel sick every day Everyone with IBD has diarrhea or blood in stool IBD only affects the gut Skin, joints, eyes, liver
IBD Facts Genetic (runs in families) 1 st degree relative (3-20x than general pop. to develop IBD) Identical twin Crohn s -1 in 2-3 lifetime risk UC 1 in 5 lifetime risk Both parents with IBD Child has 1 in 3 lifetime risk Russell et al. Does IBD run in families. 2008 Inflamm Bowel Dis
Common symptoms of IBD Symptoms/Signs Crohn s disease Ulcerative colitis Rectal bleeding ++ ++++ Abdominal pain ++++ +++ Diarrhea ++ ++++ Weight loss ++++ ++ Growth failure +++ + Perianal disease ++ Mouth ulcer ++ + Skin rashes + + Fevers ++ + Low blood count +++ +++ Joint pains/swelling + + Every patient is different, every flare of the disease is different
Location of inflammation Colon only Small intestine Vs. Inflammation in colon: more diarrhea and bloody stools Inflammation in rectum: more urgency, mucus, bloody stools Inflammation in small intestine: nausea/vomiting, constipation, weight loss, nutrient deficiencies (iron, B12, folate, Vit D)
Therapy goals Main goals in treating IBD: Induce remission Maintain remission Improve quality of life (go to school, work, practice, out with friends) Minimize side effects of medications
IBD Treatment Options Complementary medicine Surgery 1. Probiotics 2. Diets (specific carbohydrate diet) 3. Mind-body 1. Yoga 2. Prayer 3. Meditation 4. Manipulative 1. Massage 2. Acupuncture 6-MP Remicade/Humira Entyvio Methotrexate Prednisone Entocort Dietary Oral/rectal mesalamine Antibiotics
Phases of treatment Induction Therapies Prednisone Exclusive Enteral Nutrition (EEN) Entocort/Uceris Induction and/or Maintenance Medications Remicade Humira Entyvio Maintenance Medications 6-MP Methotrexate 5-ASA/antibiotics Diagnosis/flare Remission
Delivery of medications Humira: at home injection (1-2 weeks) Cimzia: at home injection (monthly) Simponi: at home injection (monthly) Methotrexate: injection or oral Remicade: infusion (4-8 weeks) Entyvio: infusion (4-8 weeks) Prednisone (severe flares) Methotrexate Prednisone 6-MP, azathioprine 5-ASA: Lialda, Pentasa
Other common IBD medications Vitamins/minerals Vitamin B12 Vitamin D Folate Iron Multivitamins Nutritional Supplements Boost, Pediasure, Ensure Probiotics healthy bacteria
Common side effects Prednisone: weight gain, increased appetite, poor sleep, irritability, moon facies, acne Remicade/Humira: pain by IV or injection site, allergic reactions (low risk) 6MP/Methotrexate: monitor liver and white blood cell numbers, folate supplementation Enteral therapy: none!
Enteral Therapy Liquid formulas to treat Crohn s disease 50-75% effective in children/adults Exclusive enteral nutrition (EEN) Similar remission rates as steroids Intestinal healing with EEN Induction 4-12 weeks to induce remission Maintenance Sole source of all nutrition (100% vs. 80%) Repeat 4 week cycle every 3-4 months
Enteral Nutrition Is it for everyone? Predictors of poor outcomes with EEN Fistula Strictures or narrowing Severe growth failure Inflammation along colon and small intestine Age Male (cans/day) Female (cans/day) 3-5 4-5 pediatric 4-5 pediatric 1-2 6-9 5 pediatric 5 pediatric 2-3 10-13 4-5 adult 4-5 adult 3-4 14-17 6 adult 5 adult 3-4 18-21 6-7 adult 5 adult 3-4 Extra Water (cups/day)
Indications for Surgery Poor response to medical therapy Obstruction (vomiting, belly distention, fevers) Intestinal perforation Fistula or abscess (infection) Bleeding
Rates of Surgery Crohn s disease 20-30% lifetime risk previously Ulcerative colitis Vester-Andersen et al. Am J Gastroenterol, 2014
Types of IBD surgeries Crohn s disease Limited resection (no ostomy bag) Ileostomy/colostomy (temporary/permanent) Strictureplasty Ulcerative colitis Remove colon Ileostomy (temporary) Pouch
Tracking Your IBD Follow up visits Assess quality of life Exam Growth (height/weight) Medication side effects Labs (blood and poop) Radiology MRI, CT scans Endoscopy
Vaccines: when and when not Live vaccines (avoid when on 6MP, azathioprine, methotrexate, Remicade, Humira, Cimzia, Entyvio, high dose prednisone) Intra-nasal influenza MMR, varicella (chicken pox), oral polio Safe vaccines in IBD Influenza shot Penumococcus Hepatitis B Meningococcal HPV (men & women)
Interacting with other IBD kids http://www.justlikemeibd.org/
Helpful IBD tricks from other patients Carry emergency kit Know where you can find clean bathrooms (Starbucks-Yes, Truck stop-ummmmm ) School accommodations (leave classroom without raising hands, pushing back assignments when in hospital, during a flare) Find trusted friend (school nurse, IBD nurse, sibling, parent, teacher, coach)
QOL in IBD 25-30% of children with IBD have symptoms of depression and/or anxiety 10-30% meet criteria for clinical depression or an anxiety disorder Stressful life events (school, competitions, friends) Family dysfunction (doctors appointments, hospitalized, surgery, infusions) Steroid treatments (mood changes) These rates are similar to children with other chronic illnesses Mackner, et al. Inflamm Bowel Dis 2006
Coping with Stress Helpful techniques to avoid stress or better cope with unavoidable stress Guided imagery Cognitive therapy Discussions about coping mechanisms Role playing Breathing and relaxation methods Positive reinforcement Journal writing Social skills training Alternative therapy Massage therapy Acupuncture
School & IBD 504 Plan Rehabilitation Act of 1973 that prohibits discrimination based upon disability Talk to admissions counselors (college-age) Meal plan Dorm options (single room, close to bathroom) Scholarships
504 Plan Highlights The freedom to go to the bathroom whenever you need to Permission to use a private bathroom, like the one in the nurse s office A place to keep your emergency supplies Permission to take regularly scheduled and emergency medication at the nurse s office Permission to eat snacks and drink liquids throughout the day Get help with classwork that you missed and have quizzes, tests, and projects rescheduled Stop the clock during tests so you can use the bathroom and not lose any test-taking time Excused absences due to illness, medical appointments, and treatments Even if you are doing well and do not feel like you need a 504 Plan, it is always good to have it in place just in case
Transition to young adulthood Transition Readiness Start at age 14 Final transition at 18-22
Tough questions
What you or your child may be thinking (1) Medications to avoid NSAIDS (Ibuprofen, Motrin, Advil, Aleve) Live vaccines (if taking 6MP, Methotrexate, Remicade/Humira, high dose steroids) Smoking Lung cancer & heart disease IBD symptoms worse Higher incidence of surgery Trigger flares Alcohol or other drugs (narcotics) Interact with medications (Flagyl, methotrexate, 6MP) Dependency, masking potential harmful symptoms
What you or your child may be thinking (2) Risk of lymphoma: 2/10,000 general population 4-6/10,000 with certain IBD medications Colon cancer Screening colonoscopy 8 yrs. after diagnosis Continues every 1-2 years
Diet, during a flare General Tips Eat smaller meals more often Reduce the amount of greasy or fried foods you eat Avoid trigger foods Caffeine, ice cream Limit eating certain high-fiber foods such as seeds, nuts, popcorn, beans, green leafy vegetables, wheat bran, and raw fruits and vegetables Limit drinking milk or milk products if you are lactose intolerant During diarrhea Avoid caffeine in coffee, tea, soda Avoid dehydration by drinking extra fluids
Speed bumps with IBD Do I really need to take my meds? Self management/self-monitoring Decision making Kane et al. Am J Med 2003
Patient Engagement Research 30+ current studies at Cincinnati Children s Data collection Specimens (blood, stool, biopsy tissue) & imaging studies (MRI) Adherence to medications Medications (new and current therapies) Quality Improvement Initiatives (improve outcomes) Participation in Improve Care Now (ICN), an international collaborative of over 50 pediatric IBD centers
Increasing Remission Rates
Vitamin D & Remission
Community outreach Attend a Support Group, mentor a new patient Sign Up for Power of 2 Power of 2 is a peer-to-peer support program that connects individuals with Crohn's disease and ulcerative colitis by phone, email, and/or Skype. You can either request support through Power of 2 or volunteer to speak with others with IBD like yourself. Chat with a Specialist CCFA's information specialists are available to answer your Crohn's and ulcerative colitis questions Monday through Friday, 9 AM to 5 PM EST. Specialists are available by phone, email or chat. Camp Oasis
In summary Living with IBD making the best out of it!
Helpful Links http://www.ccfa.org/ http://www.justlikemeibd.org/ http://www.gikids.org/content/7/en/ibd http://kidshealth.org/en/kids/ibd.html http://www.ibdu.org/