INFLAMMATORY BOWEL DISEASE 101: From Hurdling New Diagnosis to Optimizing Treatments

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1 INFLAMMATORY BOWEL DISEASE 101: From Hurdling New Diagnosis to Optimizing Treatments Phillip Minar, MD Pediatric Gastroenterologist Cincinnati Children s Hospital Medical Center

2 Objectives of Session What is IBD Crohn s disease vs. ulcerative colitis Treatment options Living with IBD Diets, supplements and school Research, outreach Optimize treatment response Adherence Drug monitoring Ask your questions, please interrupt!

3 I may have IBD, but IBD doesn t stop me from Mike McCready Pearl Jam Kathleen Baker Silver & Gold Medal 2016 Pete Davidson SNL Cast Larry Nance Jr NBA Player

4 How common is IBD? 1.6 million people with IBD in US ~80,000 <18 years old children diagnosed each year with IBD at Cincinnati Children s >800 IBD patients at Cincinnati Children s Genetics 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 Prevalence: /100,000 (total living with IBD) Incidence: 3-14/100,000 (new diagnosis each year) Seating capacity ~65,000

5 What is IBD? Inflammatory bowel disease (IBD) 25% 70% ~5% Ulcerative Colitis Mixed features: Indeterminate colitis Crohn s disease

6 Cause of IBD >200 Genes Loss of : 1. Protective barrier function of lining 2. Bacterial killing 3. Immune regulation Environment (Microbiome) IBD Improper Immune response Immune system attacks healthy cells of the gut, causing inflammation 1. Increase in Aggressive bacteria 2. Decrease in Protective bacteria 3. What allow this to occur? Infections viral or bacterial, smoking, antibiotics

7 IBD Analogy

8 Common IBD Symptoms Symptoms/Signs Crohn s disease Ulcerative colitis Rectal bleeding Abdominal pain Diarrhea Weight loss Growth failure Perianal disease ++ Mouth ulcer ++ + Skin rashes + + Fevers ++ + Low red blood cells Joint pains/swelling + +

9 Matching GI symptoms to anatomy 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, Vitamin B12, folate, Vitamin D)

10 Goals of Therapy Induce remission Maintain remission Improve quality of life (go to school, work, practice, activities with friends) Minimize side effects of medications Flare #2 Flare #1 Remission Remission

11 Treatment options Diet* Medications Oral Topical (enema, suppository) IV (infusions) IM (injections) Surgery Complementary (acupuncture, diet combo) Probiotics

12 Selection of Medications Severity is dependent on: 1. Endoscopy findings (large ulcers) 2. Extent of disease (how much of intestines) 3. Presence of complications Poor growth Infection (C. diff, abscess) Fistula Stricture Severe: Infusions, injections, surgery Moderate- oral, topical, infusions, injections Mild- oral and topical

13 Types of Medications & Delivery Biologics: Remicade: infusion at hospital or home (4-8 weeks) Humira: at home injection (1-2 weeks) Cimzia: at home injection (monthly) Simponi: at home injection (monthly) Entyvio: infusion at hospital (4-8 weeks) Stelara: 1 st infusion, then injections (4-8 weeks) Immunemodulators: Methotrexate: injection or oral 6-MP, Imuran (azathioprine): oral (daily) 5-ASA Oral: Pentasa, Lialda, Asacol, Colazal, Apriso Per rectum: Canasa, Rowasa Steroids Oral: prednisone, budesonide (Entocort, Uceris), prednisolone Per rectum: cortifoam, proctofoam, Uceris foam, hydrocortisone

14 Other Common IBD medicines Supplements Vitamin B12 Vitamin D Folate Iron Multivitamins Nutritional Supplements Boost, Pediasure, Ensure Probiotics healthy bacteria VSL#3, Florastor

15 A little more on Enteral Therapy Liquid formula (shakes) to treat Crohn s disease 50-75% effective in children/adults Exclusive enteral nutrition (EEN) Similar remission rates as steroids Intestinal healing Induction 4-12 weeks to induce remission Maintenance Sole source of all nutrition (100% vs. 80%) Repeat 4 week cycle every 3-4 months Addition of Crohn s medication (5-ASA, 6MP, Methotrexate)

16 Is EEN (aka shake diet ) for me? Predictors of poor response to diet therapy Fistula (opening to skin surface or other organ) Strictures (narrowing of the intestine) Severe growth failure (malnourished) Inflammation along colon only Foodies Intolerance to volume of formula, NG placement

17 Indications for Surgery Failure of medical therapy Obstruction (vomiting, belly distention, fevers) Intestinal perforation Fistula or abscess (infection) Bleeding requiring blood transfusions

18 Lifetime Risk of Surgery Crohn s disease Ulcerative colitis 10-15% lifetime risk

19 Types of Surgery Crohn s disease Limited intestinal removal (no ostomy bag) Ileostomy or colostomy Strictureplasty Ulcerative colitis Remove colon Ileostomy (temp) Pouch

20 Living with IBD

21 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

22 504 Plan Highlights Go to the bathroom when you need to Private bathroom, i.e. nurse s office. College dorm (single room, close to restroom) 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

23 Websites for Teens and College Students

24 Vaccines Live vaccines (avoid when on 6MP, azathioprine, methotrexate, Remicade, Humira, Cimzia, Entyvio, Stelara or high dose prednisone) Intra-nasal influenza MMR, varicella (chicken pox), oral polio Safe vaccines in IBD Influenza shot Pneumococcal Hepatitis B Meningococcal HPV (men & women)

25 Travel with IBD Carry emergency kit Know where you can find clean bathrooms (Starbucks-Yes, Truck stop, Ummmmm ) Tell your doctor if traveling outside of US When to call, see local physician Antibiotics Flying with medications

26 Quality of Life 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

27 Is there a risk of cancer with IBD? Risk of lymphoma: 2/10,000 general population 4-6/10,000 with certain IBD medications Colon cancer Screening colonoscopy 8 yrs. after diagnosis Continue colonoscopy every 1-2 years

28 Diet Tips- during flares Eat smaller meals more often Reduce the amount of greasy or fried foods you eat Avoid trigger foods, especially during flares Limit 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 When having diarrhea (flare) Avoid caffeine in coffee, tea, soda Avoid dehydration by drinking extra fluids

29 Active Engagement Research Observational studies Stool, blood, tissue from biopsies Quality of life assessment Adherence Clinical Trials COMBINE Anti-TNF alone vs. Anti-TNF with methotrexate (currently enrolling) PROTECT (completed) Probiotic study (will be enrolling soon) Social Activism Facebook, Parent advisory, PAC (adolescents, young adults with IBD) Crohn s & Colitis Foundation Kick for Crohn s, Walk, Run, Cycle events Local fundraising for CCHMC

30 Optimizing Treatments Monitoring drug levels for: Infliximab (Remicade) Adalimumab (Humira) Vedolizumab (Entyvio) Azathioprine (Imuran) or 6-mercaptopurine

31 Medication level in body How the body processes medications Next dose Peak Treatment Goal Time (days) Zero trough

32 Infliximab (Remicade) Gut Healed! 5-10 mcg/ml 1. Increase the dose 2. More frequent infusions (every 4 or 6 weeks) Ulcers Ungar et al. Clin Gastro Hepatol 2016

33 Adalimumab (Humira) Standard dosing: 1 injection every 2 weeks #1 #2 #3 Induction Maintenance 5-12 mcg/ml 1. More frequent injections every 10 days or weekly 2. Increase the dose to 2 pens every week Ungar et al. Clin Gastro Hepatol 2016

34 Entyvio level Vedolizumab (Entyvio) >30 mcg/ml 6-8 mcg/ml 0 4 weeks 8 weeks Time (weeks)

35 Azathioprine (Imuran, 6MP) Dubinsky et al. Gastroenterology Too high, increased risk of low white blood cells Therapeutic Goal Too low, less chance of working *Your physician will test how your body will metabolize this drug prior to using

36 Speed bumps Taking medications vs. not taking Kane et al. Am J Med 2003

37 Questions? Reminders: Annual IBD Education Day (Feb-March each year) Camp Oasis each summer (Fenton, MI) Take Steps Cincinnati (June 16, 2018) Theodore M. Berry International Friendship Park