Transitional Care for Pediatric IBD

Transitional Care for Pediatric IBD

Teen PSC Every Question is Fair Game-PSC Patient Q&A Jessica Philpott, MD, PhD Lori Mahajan, MD What would you like to talk about? Living with PSC Should I follow a specific diet? no special diet for PSC diet should be a healthy balance of

protein, carbs and fat many with PSC have related digestive issues (UC or Crohns) and may need to follow a specific diet for that Choose MyPlate 10 inch Plate for Adults & Teens 4 Pack; Healthy Food and Portion Control Price: $24.95

How Do I Eat Healthy if I have PSC and IBD? Cheat Digestion---good cheating chop/peel/blend/puree/cook Breaks down food fibers; does not destroy nutritional value More easy to absorb; less fermentation Result less fermentation = less bloating/pain

Bad Cheating Healthy eating with PSC and IBD: Eat more protein ! Benefits

increased fat burning better blood sugar regulation build muscle (need 30 gm) improved satiety improved bone density less fatigue Healthy eating with PSC and IBD: Eat more protein !

Safety Protein restrictions are rarely necessary Safely tolerate 1.0-1.5 gm/kg/day ~ 60 gm protein daily in middle school ~ 90 gm protein in high school-adulthood let your MD know if taking protein supplements/ powders for monitoring purposes Cirrhosis eat quality protein

ask gastroenterologist/hepatologist/dietitian if restricted Living with PSC Dietary considerations with severe jaundice: supplementation with medium-chain triglycerides (MCT), which do not require intestinal bile for absorption fat-soluble vitamins (A, D, E, and K), calcium and phosphorus. Minimize fatty foods, processed foods, and preservatives fluid build-up (ascites) Sodium/salt reduction helps reduce fluid You may also need to restrict your fluid intake

Carbohydrate metabolism also changes in liver disease can lead to high blood sugar learn how many calories you need to maintain your weight and how many you need to reach your goal, whether to gain or to lose weight. Seek dietary advice from hospital based nutrition specialist Living with PSC Avoid medications that may harm the liver Careful use of acetaminophen

Just because a supplement says it is organic or all natural, does not mean it is safe. Ask your gastroenterologist/hepatologist about all medications/supplements Avoid alcohol and recreational drugs School accommodation 504 accommodation plan http://www.crohnscolitisfoundation.org

/resources/template-section-504-plan.h tml Bathroom: access and location Test taking Medication or food/hydration schedule University Preparing Health insurance Medication Nutrition and diet Disability support services

Talking about it Friends/family/teachers/significant others Its up to you IF and HOW MUCH you want to share No right or wrong amount. Be honest; try not to scare them Reassure them You are going to be around for a very long time You may not look any different over time

May just be a little more tired/need breaks sometimes Need to visit the doctor a bit more Be ready for questions People may need their space to deal Dating If you are interested, at least 35 and parent says its ok, then you should date Important part of a normal life You are NOT broken inside-just maybe a little tired or itchy.but likely more

healthy and energetic than your doctor If exhausted/tired, just delay the date or suggest a breakfast/lunch/brunch date--unless you are just not that interested Group dates (not with parents along) can be great Drinking If youre asked out for drinks.. Legal drinking age = 21 yrs in Ohio Suggest a great coffee place you know GOAL: DONT GIVE UPGO OUT AND

HAVE FUN! If of age, be open and discuss drinking with your doctor as disease stage mattersalways Sip Cautiously Drinking NOT drinking can sometimes take courage Can just be open- I want to go out with you, but doctor says I cannot drink due to medications I am on/need to keep my liver healthy/not stress my liver Can hold a friends empty glass

Order a non-alcoholic version of a drink Get OJ and just call it a Sunshine Offer to be designated driver-everyone LOVES that person. Say you made a bet with someone you wont drink for a whole month or promised an addicted friend/loved one that you would avoid alcohol along with them PSC doesnt mean Skip Having Fun, it just means take extra care of your liver. Job Benefits

Working (or volunteering) helps you focus on something other than PSC Provides you with connections Benefits/insurance/$$$ If you feel well enough to work, then DO IT! Plan ahead FMLA paperwork Maybe you would be more effective at work if you worked a split shift or 3

days at the office/ 2 days at home Remember, you cannot be fired for being ill- against the law But if you are an unreliable employee and have not planned ahead, you can Things to discuss with boss information limitations (who gets to know what) Additional paperwork you need to file besides FMLA (notes from doctors, etc.) FMLA FMLA paperwork FMLA mandates unpaid, job-protected leave for up to 12 weeks a year

Site: workplace with at least 50 employees, employee must have worked 12 months at that site Same health benefits as those provided to workers not on leave Stress and PSC Disease is stressful (itching, nausea, fatigue, bloating, discomfort, uncertainty about the future, financial and emotional issues) Stress can make disease feel worse Its not all in your head!!

cortisol and other hormones What can we do: Exercise Leaning on friends/family Mindfulness Cultivate spirituality (meditation, Yoga) Breathing Power poses Inform MD (additional support options, safe medications)

Power pose Carney et al, Assoc of Psychological Science 20 Carney et al, Assoc of Psychological Science 20 Deep breathing Breath in through the nose slowly, filling lower lungs and then upper, and using diaphragm Hold for 3 seconds

Exhale slowly through mouth, relaxing face, neck, chest Mindfulness Five facets: observation, describing, acting with awareness, non judgement of inner experience, nonreactivity to inner experience Studies show reduced depression, anxiety, and quality of life in IBD patients

Health care transition from pediatrics Move from child-centered care to adult-centered care Transfer of care to adult provider Transition of responsibility and decision making from care providers (such as parents) to patient Transition tasks Early teens Late childhood

-Names medications and disease Late teens/ Young adult Midteens -Understands indications/risk/benefit Of treatment and procedures -Knows risks of nonadherence and Drug/ETOH

-Participates in decision making -Responsible for tasks including scheduling visit and filling prescriptions Pediatric clinic -Introduce concept of transfer -Provides resources to assist with developing skills For health care independence

-Conducts portion of visit with patient alone -Ongoing screening for transition readiness Adult care provider -Meets with patient -Assumes care -Monitors

For young adult health and development issues Transfer of care When: usually 18-22 Who? Why? Access to additional treatments (trials) Adult providers see certain conditions more commonly Because you are not a child anymore and

have different needs from your health care provider Necessary for an effective transition Patient ready Identification of appropriate provider to assume care (well versed in PSC, IBD and young adult medicine) Effective transfer of information Elements that make

transfer more difficult Disease out of control at time of transfer Unaddressed conflict between patient and parents as to control of care Patient does not feel ready or willing to assume primary role in managing care Financial or insurance issues Timing such as infusions First visit with your new provider To ask before scheduling:

How long are visits Do they accept your insurance for both visits and procedures What hospital do they admit to What is the urgent visit policy Where are infusions done Bring medication bottles with you Make sure records transferred or bring them with you Procedures, imaging, pathology, surgery, vaccinations, dxa Bring list of questions

Legal Issues/Self Advocacy Hospitals at admission ask if you have taken care of legal matters setting up a health care power of attorney drafting medical directives deciding upon organ donation At age 18 years, you are an ADULT and responsible for these power of attorney: formal document allows someone else to act as your legal representative and to make binding decisions on your behalf Advanced medical directive: lets family and medical teams

know what treatments you want or dont want Five Wishes- popular living will; others on-line written in everyday language helps people express their wishes in areas that matter most (personal, spiritual, medical and legal) helps you describe what good care means to you and allows your caregiver to know exactly what you want Remember PSC is so incredibly individual... and SO ARE YOU! Do not scare yourself by reading too much on the internet

It is part of you, but dont let it rule over you If you need help (physical or emotional)-ask, ask again and again Embrace every moment of your life There are people with pediatric- and adult-onset PSC in all careers (medicine, law, business, engineering, professional athletes, entertainment). Aim high and be a fighter! Resources Chris Klug Foundation: http://www.chrisklugfoundation.org Olympic snowboard bronze medal winner and member of the PSC Partners board.

His foundation supports organ donation nationwide via Donor Dudes (and Dudettes) and is aimed at educating persons in high school and college about organ donation; has outreach to campuses and holds events in various locations that improve public awareness of donation. PSC medical literature:http://www.psc-literature.org/wwwres.htm CCFA: http://www.crohnscolitisfoundation.org/assets/pdfs/teenguide.pdf IBD U: www.ibdu.org Naspghanwww.naspghan.org /files/documents/pdfs/medical-resources/ibd/Checklist_PatientandHealth careProdiver_TransitionfromPedtoAdult.pdf Health care passport: www.sickkids.ca/myhealthpassport

Theres an app for that Teen life IBD: http://www.pedsibd.org/t eens/ index.html Gutcheck app (Centcor) MyCrohnsandColitis team Health care passport: www.sickkids.ca/myhealt

hpassport Resources Teen life IBD: http://www.pedsibd.o rg/teens/index.html Gutcheck app

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