AND IBD - Robbie`s Rainbow

Transcription

Second Edition
AND IBD
An Educational IBD Magazine for
Children, Teens and Parents
What’s Inside
6
12
14
Educating children with IBD
Sexuality and the IBD teen
EEN therapy
B534 Abbvie_SUMMER15_English.indd 1
2015-12-15 8:50 AM
ABOUT US
Robbie’s Rainbow is a
registered Canadian
charity comprised of
patients, parents,
gastroenterologists
and members of the public. Our organization came
together to provide children with IBD access to
critical treatments, diagnostic testing, education,
mentorship and support. We recognized that
children were not able to access the most
impactful treatments for their disease due to lack
of private and public health coverage. We believe
research plays a vital role and look to researchers
to find a cure to this debilitating disease. Today,
we have a website that provides information to
the public on our goals and how to get involved.
It provides IBD families with valuable resources
and a parent support network. We also have an
ambassador program that brings IBD children
and their parents together, so we all have the
opportunity to build relationships with those who
fully understand living life with a chronic illness.
FOUNDING SPONSOR OF THIS PUBLICATION
MISSION
Robbie’s Rainbow is a registered children’s charity
dedicated to improving the health and quality of
life of children and families living with Crohn’s
disease and ulcerative colitis.
CONTACT US
Robbie’s Rainbow
478 Dundas Street West,
#30052, Oakville, Ontario L6H 7L8
905-599-1927
[email protected]
www.robbiesrainbow.ca
RobbiesRainbowCa
@RobbiesRainbow
ROBBIE’S RAINBOW AFFILIATES
The Canadian Digestive Health Foundation
www.CDHF.ca
Robbie’s Rainbow is tremendously grateful to AbbVie,
who is the founding sponsor of our magazine. Robbie’s
Rainbow is solely responsible for the content provided
in this publication.
IDEAS
www.weneedideas.ca
The Hospital for Sick Children
www.sickkids.ca
2015-12-15 8:50 AM
OUR STORY
Welcome to...
Here at Robbie’s Rainbow, we
have been thrilled to witness the
response to our first issue of You,
Me and IBD. Our magazine shares
inspirational stories that are not
AND IBD
only relatable to children and teens
with IBD but also to their parents,
allowing a small community to
form. The current issue provides
valuable educational information
and commemorates inspirational
youth within our IBD community.
In addition, we have a tremendous
amount of information to share as
work and dedication of those involved with our growing children’s
charity. It was an overwhelming
honour to see our passion, devotion
and hard work acknowledged and
rewarded.
Education, education, education
develops into a remarkable chil-
Moving forward, one of our numer-
dren’s charity that aims to help and
ous goals is to supply educational
support families.
resources to families. As a result,
In other news, our Barrie chapter
has been booming since the previous edition of You, Me and IBD and
group for parents and children who
we have launched a new video on
ous issue, countless remarkable
the process of preparing for an MRE
achievements have occurred.
(magnetic resonance enterography),
Primarily, and most excitingly, we
which can be seen at YouTube un-
have been honoured with the Small
der the title MRE Tour at SickKids.
Organization Award for Excellence
The video is a great resource for
in Fundraising from the Association
new patients with Crohn’s disease
of Fundraising Professionals, which
and colitis, and will ease any anxi-
recognizes the charitable work of
ety about having an MRE.
organizations and philanthropists
New groups
will be launching a new support
Robbie’s Rainbow expands and
Since publication of the previ-
inspiring others to do the same.
Another new educational re-
within the Halton region. This pres-
source is the Blackboards and Bath-
tigious award recognizes the hard
rooms guide, which provides teachers with information about Crohn’s
disease and suggestions on how to
create a positive environment for
children with the condition.
Still related to education, we
are thrilled to be sitting on the
board in the selection process
for the AbbVie IBD Scholarship Program of 2015. This
program provides scholarships for students
who are living with
Crohn’s disease or
are living with Crohn’s disease and
ulcerative colitis. This chapter has
several fundraising events planned
for the rest of this year and for 2016,
including a spaghetti dinner fundraiser, dress-down days, hockey
tournaments and much more. With
help from our young ambassadors
and parent volunteers, we are hoping to expand our children’s charity
to our other areas of the country.
The goal of the Robbie’s Rainbow
team is to share You, Me and IBD
with all of those who will benefit from the magazine and feel
inspired. We send many wishes
of happiness, love and health to
everyone. May your day be showered with joy and special moments
ulcerative colitis,
to remember.
helping individu-
Kate Murray, Editor
als to excel and
Kate and
Murray
You,
MeRobbie
and IBD
3
2015-12-15 8:50 AM
CONTENTS
TUMMY TIPS
Digestibles.............................................
5
Second Edition
EDITION
AND IBD
ISSN
2292-8596
LIFE LESSONS
Helping Educators
Teach Children with IBD..............
SECOND
6
What’s Inside
ROLE MODELS
Robbie’s Rainbow Ambassadors...............
HELPFUL HINTS
Managing Pain in IBD.................................
WISE ADVICE
“Mindfulness”.......................
8
9
10
11
GROWING UP
Sexuality and the IBD Teen....................................
12
NUTRITION
Exclusive Enteral Nutrition
(EEN) Therapy..........................
Educating children with IBD
Sexuality and the IBD teen
EEN therapy
2015-12-15 8:03 AM
You, Me and IBD and Toi, Moi
et les MII are published by
BCS Communications Ltd.
All rights reserved. ©2015.
Contents may not be reproduced
without written permission of
the publisher.
JUST FOR FUN
Healthy Homemade
Ice Cream...................
6
12
14
14
PLANNING AHEAD
Monitoring and Managing
Inflammation in IBD.................................
ASK THE EXPERTS
What’s Up Doc?.......................................
15
16
Robbie’s Rainbow
478 Dundas Street West,
#30052, Oakville, Ontario
L6H 7L8
905-599-1927
[email protected]
www.robbiesrainbow.ca
Publication Management
BCS Group,
255 Duncan Mill Road,
Suite 803, Toronto, ON M3B 3H9
Tel: 1-416-421-7997
Fax: 1-416-421-8418
www.bcsgroup.com
Cover photo: Jonathan Marcello
and his mother Nancy Marcello.
Printed in Canada.
TREATMENT
Understanding Fecal Transplants.......
PERSONAL STORY
My Journey..............................
4
19
18
Check us out on Facebook:
RobbiesRainbowCa
Follow us on Twitter:
@RobbiesRainbow
You, Me and IBD
2015-12-15 8:50 AM
TUMMY TIPS
Digestibles
PROBLEMS TAKING
YOUR MEDS?
Forgetting to
thereby calm disease activity.
WHEN SUPPLEMENTS
Unfortunately, this appealing
ARE NEEDED
approach has not been
consistently verified in
take your
high-quality studies,
medications
which is probably related
or deliberately
to the fact that there is
avoiding them
because of side effects
can increase your risk of
having a flare. Talk to your
Healthy
Lifestyle
Choices
When you have IBD, a well-balanced
diet is important to ensure your
body has all it needs to grow and
still no clear understanding of what makes up
a healthy gut microbiome.
But there is hope! Some studies
gastroenterologist about
have shown that probiotics might
simplifying your dosing
help people with ulcerative colitis
schedule, or ask if there are
to maintain remission, and a mix
changes to your treatment that
of several probiotics has been
will reduce side effects.
shown to be beneficial in the
stay healthy. Most vitamins and
treatment of pouchitis.
minerals are absorbed in the upper
HOW “PRO” ARE
PROBIOTICS IN IBD?
Recent revelations regarding the
links between gut bacteria and IBD
Ask your IBD doctor if he or she
part of the small intestine, so nutri-
thinks probiotics might
tional supplements can be needed if
help you.
you are actively growing or recov-
Source: KidsDigHealth.org
have opened up an appealing
ering from being sick. In addition, it
is important to take calcium sup-
target to treat the
AVOID NSAIDS
plements if you have to cut down
condition.
Non-steroidal anti-inflammatory
on milk products. For some people,
drugs (e.g., ibuprofen, naproxen
folic acid, iron or vitamin (A, B12, D,
contain live
and aspirin) are effective pain
K) supplements might be needed to
bacteria of a
relievers, but have occasionally
prevent certain deficiencies.
specific bacterial
been known to precipitate an
Probiotics
strain or family,
IBD flare, probably because they
IBD
...............................................
which are assumed
increase the permeability (“leaki-
If you wish to contribute something
to aid gut health.
ness”) of the gastrointestinal tract.
for our experts, please send your
The idea behind taking
Talk to your doctor about alterna-
ideas to [email protected]
probiotics is to restore a “healthy”
tives for pain relief.
and we will be happy to pass
microbial composition in the gut and
them along.
You, Me and IBD
5
2015-12-15 8:50 AM
LIFE LESSONS
Helping
Educators
Teach Children
with
By Catherine Mulvale
W
IBD
e know that in-
and who we have the potential to
IBD. If a teacher is unprepared, it is
flammatory bowel
become. They provide us with skills
our children who will suffer most.
disease (IBD) can
to respond to challenges and crises.
be unpredictable,
They inspire us and are an integral
The Canadian Digestive Health
embarrassing,
part of who we are. And, they have
Foundation (CDHF) and Robbie’s
stressful and
daunting responsibility of shaping
Rainbow have collaborated to de-
even debilitating – especially for
velop Blackboards and Bathrooms
children. However, as parents of
– a comprehensive program to help
children living with IBD, we’ve
educators support students who are
learned to create an environ-
living with IBD. Blackboards and
ment of support, compassion
Bathrooms aims to help teachers
and encouragement. Most teach-
understand what IBD is and bring to
ers do not have our expertise
light how symptoms and treatment
nor our insights when it comes
can impact behaviour and academic
to dealing with IBD. They
performance. It also equips teachers
need our support -- and when it
with strategies and resources they
comes to our kids being in their
can employ at school.
classrooms – we definitely need
theirs!
The goals of the program are to:
4 foster an environment that
Teachers are some of the most
the minds and futures of dozens of
minimizes the negative impact
influential people in our lives.
children every single day. Some chil-
symptoms of IBD can have on a
They help us define who we are
dren will enter the classroom with
child’s educational experience
6
You, Me and IBD
2015-12-15 8:50 AM
and academic performance
4 help teachers communicate
program talks about the importance
of immediate bathroom access and
effectively with students, their
even includes a personal “All Access
caregivers and classmates and,
Pass” that empowers children who
4 provide teachers with easy-toaccess resources
need to leave the classroom, because
of persistent symptoms, to do so
without restriction or questions. It
Blackboards and Bathrooms pro-
addresses pain, the impact of various
vides educators with a high-level
therapy options, adapting expecta-
introduction to this chronic disease.
tions (when necessary) for participa-
More importantly, it explains how
tion in field trips and physical educa-
symptoms can vary dramatically over
tion, and social issues like bullying.
days, weeks and months and how
these variations can result in fluc-
Blackboards and Bathrooms launch-
tuations in energy, attention, focus,
es in the fall of 2015. It will be
participation and achievement. The
distributed to families through the
Canadian Digestive Health Foundation, Robbie’s Rainbow and paediat-
About the CDHF
The Canadian Digestive Health Foundation (CDHF) provides expert
advice and compassionate support to the millions of Canadians suffering from digestive disorders. We help patients living with IBD and other
gastrointestinal illnesses recognize symptoms, understand treatments
options, communicate with their health teams, and find effective ways
to successfully manage their disease so they can enjoy living life with
confidence and optimism. To learn more visit www.CDHF.ca/IBD
ric gastroenterologists. To request
your copy, email [email protected] with
My Child Needs Blackboards and
Bathrooms in the subject line.
IBD
............................................
Catherine Mulvale is the Executive
Director of the Canadian Digestive
Health Foundation.
PEER SUPPORT
THE PROBLEM
My mom gets worried when I’m sick. She insists that I stay home and not go over to my friend’s house. How can
I make sure that she doesn’t worry so much and let her know that being with my friends makes me feel better?
THE ANSWERS
Maybe you can bring a cell phone with you
and keep her updated to let her know you
are okay? That may help her feel better and
you can still have fun with your friends.
Eoin, 14 years
If you really want to hang out with your
friends, tell your mom how you feel. If your
IBD is under control, nothing should stop
you from doing all the things other kids do.
Samantha, 16 years
My mom was the same, I was diagnosed
when I was 7 years old. I tried telling her I
was fine, but she didn’t want me to get too
You, Me and IBD
tired. I talked to my GI about it and
she facilitated a talk with my mom.
John, 17 years
Have a friend come to your place
and suggest your mom discuss the
situation with you friend’s parents.
Jennifer, 13 years
I told my mom that being with my
friends makes me forget about my
Crohn’s and I feel like a normal kid.
Explain how it is important to you
and maybe she’ll understand.
Stephanie, 12 years
In the next issue…
My friends keep inviting
me for sleepovers, but I’m
embarrassed I might have
to use the washroom a lot.
What should I do?
Email your advice to
[email protected].
7
2015-12-15 8:50 AM
ROLE MODELS
Ambassadors
JONATHAN MARCELLO
wasn’t hard to agree to become an
advocate. I feel I can give back by
My name is Jonathan Marcello. In
being supportive and understanding
April 2010 I was diagnosed with a
of other young people’s needs.
debilitating illness called Crohn’s
Participating in fundraisers
disease, part of the group of
for Robbie’s Rainbow such as
conditions known as inflammatory
food drives, bowling and hockey
bowel disease (IBD). Canada has
tournaments is fun. In addition to
one of the highest rates of IBD
fundraising, part of my role is to
worldwide, with more than 200,000
help raise awareness of IBD in the
people suffering from the condition.
community. As a hockey goalie, I
While difficult at times, my life is
am particularly passionate about
still quite normal. Other than taking
my own Crohn’s and Colitis Hockey
medication on a daily basis, I am a
Tournament (CCHT). This event
regular kid. I’m keen to play hockey,
takes place in Barrie, Ontario, and
go biking and hang out with my
I am currently planning my sixth
friends and family. Next September,
annual tournament for 2016.
I will enter my first year at the
My friend Jamie helps with the
downs—but I would not say that
having Crohn’s disease is a down. It
University of Toronto majoring in
tournament to make it an ongoing
has shown me that there is more to
computer science. My goals are to
success. Jamie is a dedicated
this world than most people think.
learn how to develop successful
volunteer who has helped with the
websites and to study computer
CCHT for more than four years.
to be done to reduce the stigma
optimization.
There is, however, more work
Another influential person in my life
that surrounds IBD and provide
Days when I have flares are
is Mike, who I met when I attended
new educational resources. I
challenging, but these times make
the Canadian Goaltending Academy.
think Robbie’s Rainbow is a great
me a more determined individual.
As a mentor, Mike has played a
organization to do both of those
I actually feel as if I have it easier
pivotal role in encouraging my
things, and to help kids and their
than most—my good friend Trevor,
ambitions to become a goalie and to
families. My role as an ambassador
who also has Crohn’s disease, had
help others. With the commitment
will continue when I move onto
to have surgery. He has been a
of volunteers, donors and sponsors,
campus next year. And, one day,
major influence in my life because
the success of the CCHT continues
I hope to travel to Vancouver and
we share similar experiences.
to grow. For the past four years, the
ski on the mountain where the
I have been an ambassador
proceeds from the tournament have
Olympics took place. As I go, I’ll be
for Robbie’s Rainbow for the past
been donated to Robbie’s Rainbow
meeting and talking with others in
four years. After meeting Robbie
and Crohn’s Colitis Canada.
order to raise awareness of Crohn’s
and understanding his motivation
to help others living with IBD, it
8
Throughout my journey, I have
been through lots of ups and
disease across the country. I like
being able to inspire kids!
IBD
You, Me and IBD
2015-12-15 8:50 AM
HEADING
HELPFUL
HINTS
managing pain
in IBD
By Dr. Christine Chambers
P
ain is a common problem
to your doctor about whether there
among patients with IBD,
are medications that can help you.
whether it’s related to the
If you experience a lot of pain from
disease itself (e.g., abdom-
needles or procedures, for example,
inal pain) or to medical
you might find it helpful to use a
tests and treatments. Pain is no fun
topical anesthetic cream before the
for kids or their families, and can
procedure to help numb the area.
Parents play an important role in
often cause more fear and distress
helping children with IBD to man-
than the actual disease itself.
age their pain. Parents can help
Fortunately, there are lots of
make sure their child’s pain
things that children and
their parents can do to
is assessed regularly and
help manage any discom-
that poorly controlled pain
fort associated with IBD.
mind off things by thinking about
is followed up. Pain is not
or doing something more pleasant)
just a part of life with IBD. There is
ment, we often refer to the three Ps:
and positive self-talk (i.e., turning
almost always something more that
Physical, Psychological and Pharma-
negative thoughts into positive ones
can be done to help children with
cological strategies. We’ll give you
by repeating statements such as “I
IBD feel more comfortable.
some examples of each.
can deal with this pain”).
Physical
manage discomfort. This involves
make sure that evidence about
Physical strategies include position-
accepting the feelings, thoughts
children’s pain gets to families who
ing, massage and exercising. Yoga
and sensations that are occurring in
need and can use it. Check out our
is one example of a physical strate-
the moment, and not getting upset
#itdoesnthavetohurt social media
gy that can help with IBD-associat-
about them.
campaign and website (www.it-
When it comes to pain manage-
Mindfulness is another way to
ed pain.
Psychological
The Centre for Pediatric Pain
Research is dedicated to helping
doesnthavetohurt.ca) to learn more.
Pharmacological
You will also find helpful videos,
Pharmacological strategies are those
including one for parents that gives
Psychological strategies include
that involve medication. If your pain
easy pain-management tips for
techniques such as relaxation,
is not well controlled, you should talk
shots and needles.
IBD
which can be achieved by taking
.............................................................................................
deep breaths, using your imagina-
Dr. Christine Chambers is a clinical psychologist and professor in the Depart-
tion to take you to a peaceful place
ments of Pediatrics and Psychology & Neuroscience at Dalhousie University
or gradually tensing and relaxing
in Halifax, Nova Scotia. She is based in the Centre for Pediatric Pain Research
muscles. Other effective psycholog-
at the IWK Health Centre. She is interested in helping children with chronic
ical strategies for pain management
illness and pain. You can follow her on Twitter at @drcchambers and using
include distraction (i.e., taking your
the hashtag #itdoesnthavetohurt.
You, Me and IBD
9
2015-12-15 8:50 AM
WISE ADVICE
“Mindfulness”
By Dr. Christine Chambers
M
“
indfulness” is a psychological approach that is growing in popularity with those
managing chronic diseases. It involves becoming more aware of our thoughts,
feelings and physical sensations at the very moment they occure, and not
reacting to them out of habit—rather, practitioners try to choose how to respond to those
experiences. Mindfulness almost always involves some form of quiet meditation or relaxation.
Kids can be taught to be mindful.
Keep it simple
There is a growing body of research
Keep it simple with your children.
that shows that mindfulness can
Mindfulness is a big concept for
help children pay attention, calm
kids to understand. However, mind-
down when they are upset and
fulness is really just awareness—
make better decisions. It can also
awareness of thoughts, feelings
help children to cope with the pain
and sensations; in fact, anything
that is happening around you right
now. Don’t force it. Not all kids are
interested in the concept. Some will
prefer to distract themselves rather
than to be aware, especially during
times of stress.
You can try lots of activities to
you are practicing mindfulness in
your day-to-day life and parenting.
introduce and encourage mind-
Mindfulness is a skill and, like
fulness with your children. For
any skill, it requires patience and
example, encourage your children
practise. But it can also provide a
to use their superhero powers
lot of opportunities for creativity
(e.g., their “Spidey-senses”) to
and self-discovery, for children and
pay attention to sights and sounds
parents alike.
and distress of having a medical
that they wouldn’t normally notice.
condition such as IBD.
Encourage your children to give
..............................................
IBD
you a personal “weather report” to
Dr. Christine Chambers is a clini-
practise. Find five to 10 minutes
help describe their feelings in the
cal psychologist and professor in
each day for you and your child to
moment—are they feeling sunny,
the Departments of Pediatrics and
start with some meditation. Try to
rainy or foggy? To help your chil-
Psychology & Neuroscience at Dal-
incorporate mindfulness into your
dren focus on deep breathing, have
housie University in Halifax, Nova
daily activities. For example, focus
them imagine that their tummy is a
Scotia. She is based in the Centre for
on the taste and texture when
beachball that they have to gradual-
Pediatric Pain Research at the IWK
eating a grape, instead of just
ly inflate and deflate.
Health Centre. She is interested in
Mindfulness needs regular
gobbling it up; or concentrate on
Remember, children model
helping children with chronic illness
the sights and sounds around you
what they see. So if you would
and pain. You can follow her on
when walking home, rather than
like to encourage mindfulness in
Twitter at @drcchambers and using
moving on autopilot.
your children, show them how
the hashtag #itdoesnthavetohurt.
10
You, Me and IBD
2015-12-15 8:50 AM
JUST FOR FUN
RECIPE
ice cream
Healthy homemade
Ingredients:
1 medium avocado, pitted, peeled,
and sliced
2 medium ripe frozen bananas,
peeled and sliced, do not thaw
Sandra Saville, RD
Tips:
•If bananas are not frozen, but used fresh,
the recipe will be a pudding consistency.
•If the green color of the Avocanana “ice
cream” is not a favorite, add 1 tbsp. (15
mL) of melted chocolate to mask the color.
•Keep bananas frozen and avocado at
room temperature.
•To ripen an avocado faster, place it in a
paper bag with the banana.
•The avocado will yield to a gentle press
Method:
•Peel the avocado, remove the pit
and slice.
•Place avocado slices into blender with the frozen sliced banana.
•Process on high until smooth.
•Serve immediately. Serves 2.
Avocado Nutrient highlights:
with the thumb when ripe.
Banana Nutrient highlights:
Per 1/2 medium avocado
Per 1 medium banana
Calories: 161
Calories: 105 Protein: 1.3
Protein: 2.0
Carbohydrate: 8.6 Fat: 14.7 Fibre: 6.7
Carbohydrate: 27.0 Fat: 0.4 Fibre: 2.1
Source: Canadian Nutrient File, 2010
Source: Canadian Nutrient File, 2010.
When planning snack and meal ideas for children, keep things simple. Sometimes combining
foods in different ways is all it takes to create new excitement about healthy foods! IBD
...................................................................................................................
Submitted by: Sandra Saville, RD, Sandra Saville Nutrition Consulting, Digestive Health Specialty,
Oakville, Ontario. [email protected] (905) 842-9967
Fun & GAMES
Word Search,
X’s and O’s,
and a Maze
STAR
WORD SEARCH ANSWERS
C AR
PUMP KIN
DISH
BAG
NEAP
CHIN
MAT
PIN
RANGE
EAR
2015-12-15 8:50 AM
GROWING UP
Sexuality
and
the
By Dr. Mary Zachos
IBD Teen
Q
A
Does IBD affect
puberty?
Active IBD can delay puberty
in the same way it can have ef-
fects on growth. In some people, the
main manifestation of disease activi-
Q
A
What are most IBD teens
afraid of when it comes to
their sexuality?
Teens are often concerned
about how their IBD might im-
pact their ability to attract a partner
ty is its effect on growth and puber-
and have an intimate relationship.
tal development, and gastrointestinal
Those who are in a relationship
symptoms are minimal. Therefore,
might find it difficult to talk about
in addition to reviewing symptoms
their disease. It can be very helpful
and having tests such as blood work,
to speak to your doctor about any
stool analysis, imaging and endos-
worries you have. Many concerns
copy/colonoscopy, an important part
can be alleviated by getting an-
of monitoring IBD is keeping a close
swers to the new and important
eye on pubertal development.
questions that arise during the
teenage years.
Q
A
Do IBD medications affect
body image?
Most of the medications we
currently use to treat IBD do not
change how a person looks. However,
corticosteroids are occasionally used
crease your energy levels—as can ac-
and can cause temporary side ef-
tive disease symptoms. Consequently,
fects, including weight gain, acne or
the desire for sex might be reduced.
increased hair growth. These effects
can be distressing for a teenager.
Q
A
Do certain medications
affect sex drive?
IBD medications do not directly
impact a person’s sex drive.
However, some medications can de-
12
Q
A
Does an ostomy impact body
image and sexual functioning?
Even healthy teens can lack
confidence in their looks, and
although an ostomy itself does not
impact sexual functioning, having
an ostomy or surgical scar can make
You, Me and IBD
2015-12-15 8:50 AM
a person feel even more insecure.
with the health-care team,
Your health-care team and ostomy
which might be inde-
nurse can offer good advice to help
pendent of their parents
you manage the ostomy apparatus
during adolescence, are
during intimacy.
totally confidential.
Q
A
Q
A
How should parents approach
the topic of sex?
Parents should aim to create
open lines of communica-
tion and approachability about all
aspects of life, including school,
Are there any
risks with respect
to sex and IBD?
All teens—whether they have IBD
or not—take on certain
relationships and behaviours. This
risks when they have
will make it easier to have the same
sex, including contracting a sexually
openness about sexuality. This com-
transmitted infection (STI), becoming pregnant or making
munication needs to begin
someone else preg-
in early childhood and
nant. However,
continue in a posi-
these can have
tive, non-judgemental and
greater con-
trustworthy
sequences
fashion, so
in people
your teen with
with IBD.
IBD will feel
For exam-
comfortable
ple, some
IBD medi-
approaching
cations affect
you, or a health-
the immune
care team member,
system and STIs
with questions about
can therefore be more
sex.
Q
A
When it comes to sexuality,
what key points should parents
stress to their IBD teen?
severe in people with IBD.
In addition, certain medications
are not safe for fetal development
and should be strictly avoided if
Sexual development is a
there is any risk of pregnancy.
normal and natural part of
Young women should also consider
a trusting, supportive relationship before taking the step of
having sex.
Q
A
Should I do anything special to
prepare for sex?
There is no special advice,
other than to have safe sex. Re-
member, you can always go to your
health-care team with any specific
questions.
Q
A
Can I have a normal sex life?
Absolutely. However, you
might just not feel well enough
to be interested in sex during flares.
Some types of IBD can affect the
area around the vagina or anal
canal with a fistula or abscess,
which can make sex uncomfortable
or even painful.
adolescence. The overriding point to
being vaccinated against HPV, a
stress relates to safe sexual prac-
sexually transmitted virus that can
tices and relationships. Using birth
increase the risk of cervical cancer.
talking about such things, it can be
Q
A
care team about any discomfort or
control and a condom is very important. There are certain medications
that should not be taken if there is
any risk of pregnancy. These will be
discussed in detail by the healthcare team, particularly with sexually
active teens.
It is also important for teens to
know that all of their interactions
You, Me and IBD
Should I talk to my partner
about my IBD before
having sex?
Although you might be awkward
very helpful to speak to your healthworries regarding sex.
IBD
............................................
If you are in an intimate rela-
Dr. Mary Zachos is a Pediatric
tionship and thinking about
Gastroenterologist in the
becoming sexually active, it’s a good
departments of Hepatology and
idea to talk to your partner about
Nutrition at McMaster Children’s
your disease. It’s important to have
Hospital in Hamilton, Ontario.
13
2015-12-15 8:50 AM
NUTRITION
s
i
t
a
Wh
E xclusive Enteral Nutrition
(EEN)
E
therapy?
nteral nutrition therapy is the
The goal of EEN is to help the body
By Dr. Nikhil Pai
•Q
uick reduction in gastrointesti-
use of a formula for the treat-
get into remission, which the doc-
nal (GI) symptoms during flare i.e.
ment of Crohn’s Disease (CD).
tor’s refer to as “induce remission.”
abdominal pain
Formulas can be given by mouth/
This will lessen the inflammation and
When the EEN therapy has fin-
orally (PO) or nasogastric tube (NG
ultimately heal the gut.
tube). But, all will provide you with
The research so far tells us that
ished, it advises to gradually reintroduce foods back into the diet. This
the carbohydrates, fats, protein, vita-
EEN is as good as steroids. Some
allows the GI tract time to adjust
mins and minerals you need to grow.
individuals could experience rhi-
to having solids in the diet again.
Considerations for which treatment
nosinusitis, which is inflammation
The dietitian will help to guide you
method include taste, daily volume
of the lining of the nose, which may
through this transition period.
required and duration of treatment.
happen if you use a nasogastric tube
If Exclusive Enteral Nutrition
The benefits of EEN therapy, espe-
(EEN) therapy is advised by your
Once EEN treatment is completed
your health care team may recom-
for treatment.
mend Maintenance Enteral Therapy
Gastroenterologist, it will be your
cially when compared to steroids are:
(MET). MET provides part of your
only source of nutrition for many
• Possible mucosal (tissue lining of
daily nutritional needs through
the gastrointestinal tract) healing
weeks. There is no food allowed ex-
formula and the rest from food to
cept clear fluids and some clear solid
• I mproved nutritional status
maintain remission and help prevent
options to suck and chew.
• Decrease in inflammatory markers
a flare. This should be discussed
• Bone protection
with your Gastroenterologist.
IBD
•S
ome improvement in growth
velocity
Tips for Succe ssful Treat ment
4 At breakfast, you will likely feel full from the treat-
4C
hange the flavour of soup broths! Homemade
ment that you received overnight. If you do not feel
broths are best – these are low in sodium and have
hungry, it is not necessary to eat when you first wake.
no preservatives. Best of all you can add any meat,
4 If you are not at home during the day, don’t forget to
fish and/or vegetable for flavour, as well as any
pack some drinks, soup broth and snack so that you
spice or herb for taste. Use a sieve/strainer that has
don’t feel too thirsty or hungry.
very tiny holes to strain the foods and spices so that
4 There are a variety of clear candies that can be
eaten in moderation while on treatment. Read the
ingredient list and check for any real fruit pieces or
fruit purees, which are not allowed.
4 Switch up the flavours of your Jello! Make it with
carbonated drinks for pop.
4 Freeze Gatorade and other beverages to make into
the broth is clear. No cream, pureed vegetable/fruit/
meat or oil in the soups.
4P
ay attention to stool output. Coloured fruit drinks,
and red Jello can sometimes make your stool red.
4S
ince you are mostly on all liquid diets, it is likely
that you will have “loose stool” 3-4 times daily.
This is not diarrhea.
a slushy. Drink with a straw!
14
You, Me and IBD
2015-12-15 8:50 AM
PLANNING AHEAD
MONITORING & MANAGING
inflammation in
IBD
O
By Annamarie Marcello
and Dr. Peter Church
ver the years, the science of
medicine has transformed
Therapeutic drug
monitoring
into a complex art. Not only
calprotectin.
Calprotectin is a protein
Different people metabolize
found in neutrophils,
do treatments play a significant
drugs differently, and it can be
a type of white blood
role in maintaining health, but so
difficult to find an appropriate
cell responsible for
do the diagnostic tests that monitor
dose that works for every sin-
responding to infection,
disease. Today, we have tests that
gle person—this is particularly
inflammation and bacteria
measure the quantity of specialized
tricky in young people, who
in the body. In IBD,
medications circulating through
are growing and developing. By
neutrophils accumulate
the bloodstream and, over the past
using TDM, which measures the
when inflammation is
decade, biologic therapies have
concentration of a drug in the
present in the intestine and
progressively become more effective
bloodstream, doctors are able to
in treating individuals with IBD.
learn about an individual’s re-
Crohn’s disease, one of two
calprotectin is released
into the feces. When
sponse to a drug in more detail.
forms of IBD, causes inflammation
This then allows doctors to adjust
throughout the digestive tract. The
the prescribed dose to ensure the
digestive tract is a complex system
medication is working as effectively
that is responsible for digesting
as possible, thereby optimizing treat-
food, absorbing nutrients and
ment and providing the best care.
the concentration of
calprotectin in stool is
high, so too is the level of
inflammation in the intestine.
A high level of fecal calprotectin
can indicate disease activity. As
TDM was created for individuals
calprotectin is a biomarker, this test
colitis, the second main form of IBD,
with IBD who are using biologic thera-
can be used to help physicians and
results in inflammation within the
pies, with the aim of better managing
patients adjust IBD treatment to
lining of the colon. Both Crohn’s
their disease and helping to prevent
best monitor and manage disease
disease and ulcerative colitis cause
it from progressing. Many drugs that
activity.
overproduction of a protein called
require TDM are typically taken in the
tumour necrosis factor (TNF)α, which
long term, as is the case with biolog-
drug monitoring with TDM and
itself causes inflammation within the
ics. Maintaining a steady concentra-
fecal calprotectin provide impactful
digestive tract.
tion of a biologic therapy can be tricky
and non-invasive ways of avoiding
providing fuel to thrive. Ulcerative
Ultimately, closer disease and
as individuals age or experience life
flares, and improving health and
diagnosed with IBD undergo
changes such as pregnancy, infection
quality of life.
continuous assessments to monitor
or surgery—all of these factors can
their level of inflammation and
change the amount of drug needed.
..............................................
response to prescribed medications.
TDM follows these changes, and can
Now, there are two newer ways to
identify when a person might need a
monitor disease activity: the first
higher or lower dose.
community events. She has a brother
(TDM), and the
Fecal calprotectin
Peter Church, MD, FRCPC, is a
second using fecal calprotectin
A second diagnostic test used to
gastroenterologist at SickKids,
testing.
monitor disease activity uses fecal
Toronto.
Individuals who have been
using therapeutic drug monitoring
You, Me and IBD
IBD
Annamarie Marcello is 16 years
old and is a regular volunteer at
who lives with IBD.
15
2015-12-15 8:50 AM
ASK HEADING
THE EXPERTS
What’s up
DOC
Ask Drs. Elkadri and Issenman
My son is 17 and has Crohn’s/
way through. Just as
start to see blood.
colitis. For no reason, he will
you have days where
This happens espe-
experience two or three days
you may feel tired,
cially if he forgets to
of blood stool then it just
and days where you
take his medication
disappears. Is this a sign of a
might feel great, your
for a few days in a
flare or is his treatment not
son’s IBD may have its
row. Finally, as every
working anymore?
own ups and downs
person and their
Seeing blood in your son’s stools is
as well. These may be
IBD are different, I
a concerning thing: Is he flaring? Is
due to things
would suggest your
he going to need more treatment?
such as a minor infec-
son inform his doctor
Does this mean the treatment he’s
tion or missing med-
if he is consistent-
on is not working? Blood in the
ication. So, though his treatment
ly noticing blood in his stools. He
stool results from breaks within
tries to restore things fully, some-
might need an adjustment in his
the blood vessels at the surface of
times there may be some inflamma-
treatment.
the gut (mucosa) as poop makes its
tion left over. This is when he might
Dr. Elkadri
I’m trying to find different ways to help my teenager manage her IBD symptoms.
Is it worth trying the paleo diet?
The paleo diet, which actually is called the paleolithic diet, was first described in 1985. It consists of a diet
with high protein, low total fat, high essential fatty acids, low sodium and high fibre. It is thought to be more
in line with diets that our ancient ancestors used to eat (think cavemen/cavewomen). The thought is that
more recently, our diet has “outpaced our genetics.”
The paleo diet has unfortunately not been studied in IBD though parts of it have been looked at, including the impact of poly-unsaturated fatty acids (PUFAs). Omega-3 PUFA has not been shown to have any
clinical effect in IBD. Another part of the diet is the high fibre content that is consumed without eating
cereals. The research in IBD, however, shows that inclusion of cereals in the diet might actually be beneficial
due to the fermentation by bacteria within the gut that results.
So, the data we have isn’t very supportive of the paleo diet. Add to this the fact that the paleo diet is
usually low in Vitamin D, a vitamin that has been shown to be low in patients with IBD, and a vitamin, when
deficient, that is associated with more inflammation, and the paleo diet becomes decidedly less appealing.
Another issue is cost: the paleo diet has the potential to be pricey.
So, if somebody insists on trying another diet, I recommend that they
make sure it’s not deficient in any particular nutrient, vitamin, or
component necessary for proper health. As well, make sure to add
physical activity to your daily regiment.
Dr. Elkadri
16
You, Me and IBD
2015-12-15 8:50 AM
Will I be on medication for
Why does my child have so
the rest of my life?
much pain, even though
This is a hard question to answer.
colonoscopy results show no
Each person’s IBD is a bit different,
active disease? I’m confused.
so it is best that questions related
Patients often continue to experi-
to your particular case be addressed
ence abdominal pain after resolu-
with your physician. That being
tion of the acute disease process.
said, I like to focus with my patients
As the intestine recovers from the
on the goals behind why we need to
inflammation, the bowel remains
with advice to avoid seeds and nuts.
use medication in IBD.
“irritated.” Like other patients with
There isn’t a lot of science behind
“irritable bowel syndrome” patients
this advice but there is some com-
on track through puberty and to
may have belly cramps and urgency
mon sense. Patients with Crohn’s
keep you growing. You only get one
that come on with stress or after
disease may be prone to obstruction
opportunity to grow during your
eating certain foods. This is very
at narrow areas in the small bowel.
subjective. Many of our patients
If patients eat a large amount of
with these symptoms prefer a low
“hard to digest foods” at one time,
Uncontrolled IBD can
lactose diet and avoid the spicy and
these can get caught up in the nar-
delay puberty, which
acid-rich foods which seem to give
row spot. Kids rarely have trouble
leads to problems
them more symptoms.
with small seeds from strawberries
in growth and bone
Dr. Issenman
but get into trouble after eating a
Our treatments aim to keep you
lifetime, and this mainly
occurs during puberty.
large amount of treat foods such
health. These things,
Can I eat seeds and nuts
as popcorn or sunflower seeds. In
a long enough period of time, can
if I have Crohn’s disease?
practice, we suggest avoiding corn
lead to permanent growth problems.
What about the seeds in
products such as popcorn and taco
when left unchecked for
strawberries and cucumbers,
chips in Crohn’s disease. This isn’t
treatment is not only about the
are they okay?
an issue for kids with ulcerative
things happening right now, but
When recovering from an acute
colitis.
also about the things that might
flare, IBD patients are often coun-
Dr. Issenman
happen in the future. Uncontrolled
seled to follow a “low residue diet”
The other thing to note is that
disease with ongoing inflammation
can lead to scarring and stricturing, which ultimately can result
in you requiring surgery. As well,
ongoing inflammation can raise the
risk of colon cancer in the long run.
So, ongoing treatment to minimize
inflammation lowers the risk of all
these things.
Again, depending on your disease, treatment differs at different
times. In the end, the goal is to
minimize therapy while keeping the
long-term goals in mind.
Dr. Elkadri
Does stress really affect my IBD?
Most patients feel that stress contributes to
IBD symptoms. This really isn’t a surprise.
The intestine has a huge number of nerves
that are “hardwired” into your body’s nervous
system. It is common for healthy people to
experience “butterflies in the stomach” or urgency in
stressful situations. Many kids with IBD experience a stronger form
of this stress response. While it’s not clear that stress really causes
flare ups, it is a good idea to try to become “a stress master.” Stress
management techniques can be learned as part of relaxation exercises, yoga and many martial arts.
Dr. Issenman
Dr. Robert Issenman, is a professor at McMaster University and Chief of Pediatric Gastroenterology and
Nutrition, and Director for the Ambulatory Clinics and the Emergency Department at McMaster Children’s
Hospital in Hamilton, Ontario. He is also the past president of the Healthy Generations Foundation.
In the next issue...
Please send questions
for our experts to
[email protected].
Dr. Abdul Elkadri is a pediatric gastroenterology fellow at the Hospital for Sick Children in Toronto.
You, Me and IBD
17
2015-12-15 8:50 AM
NUTRITION
Understanding
Fecal Transplants
By Dr. Nikh il Pai
I
t’s an icky topic, but “poop
has since been reproduced in large,
oping diarrhea requiring antibiotic
transplants” have lately been
multicentre clinical trials around the
treatment. One of the largest fecal
getting a lot more attention. For
world and has been established as
microbial transplant studies was
decades, the bacteria living within
a definitive treatment for recurrent
recently completed at McMaster
our intestines have perplexed doctors
C. difficile colitis. Yet, scientists and
University on adults with ulcerative
and scientists. Consider: more than
doctors are still left wondering what
colitis. The results of this study were
90 per cent of the cells living within
exactly these bacteria are doing.
promising, with 39 per cent of
our bodies come from bacteria. That’s
The answer to that question has
transplant recipients showing im-
more than 100 trillion individual
broad implications for the develop-
bacterial cells, and 150 times more
ment of new therapies. One example
genetic material than is in the human
is in the treatment of inflammatory
there are currently many more ques-
genome. These bacterial cells act like
bowel disease (IBD). Stool studies
tions than answers. Yet there is rea-
little metabolic machines, breaking
have demonstrated that individuals
son for excitement in the Crohn’s and
down nutrients, releasing molecules
with Crohn’s disease or ulcerative
colitis community. Active research
through our intestines and constantly
colitis appear to have a different
means potential new therapies are on
interacting with their human host
microbiome to healthy people. Know-
the horizon. The Division of Pediatric
through millions of signalling mol-
ing that stool transplants (formally
Gastroenterology at McMaster Chil-
ecules. These bacteria, collectively
known as “fecal microbial trans-
dren’s Hospital is now studying the
known as the “microbiome,” inevi-
plants”) can treat C. difficile colitis,
effects of fecal microbial transplants
tably have some impact on human
researchers have been interested
in children with ulcerative colitis.
health and disease. The bigger ques-
in the effects of transferring stool
While fecal microbial trans-
tion is: what exactly is that impact?
from healthy donors to patients with
plantation may never become a
Human history has a loosely
Crohn’s disease or ulcerative colitis.
conversation piece at a dinner party,
documented record of using the
Early results have been mixed. Small
a treatment that works and is safe is
microbiome for medicinal purposes.
studies in children with IBD from
a newsworthy development. What
Ancient Chinese texts from nearly
Seattle, Boston and Atlanta have
are all those bacteria doing in our
1700 years ago report using stool as
shown that transfer of stool from
intestines? We might never know for
a treatment. German soldiers posted
healthy family members results in a
sure. But with continued research
in Africa during World War II de-
56–85 per cent rate of improvement.
and clinical trials, we might soon
scribe using fresh camel feces to cure
In the longest follow-up so far, 56
find out.
bacterial dysentery. In the late 1950s,
per cent of patients who underwent
..............................................
a group of physicians used stool
a single fecal microbial transplant
Dr. Nikhil Pai, MD, FRCPC, FAAP, is
from a healthy human donor to treat
continued to show improvements
an assistant professor in the Division
a patient with Clostridium difficile
(i.e., decreased medication needs,
of Pediatric Gastroenterology and
colitis, a potentially fatal bacterial in-
improvement in inflammation or
Nutrition at McMaster Children’s
fection of the intestines. This not only
in overall symptoms) for nearly 2.5
Hospital. He leads the Clinical Nutri-
helped the patient to recover, but also
years. Equally importantly, the rate
tion Program, and works with Mac
prevented him from being re-infect-
of side effects was low, with just
Kids Digestive Health Inflammatory
ed with the bacteria. The practice
seven per cent of patients devel-
Bowel Disease Clinic.
18
provements.
Like with any new treatment,
IBD
You, Me and IBD
2015-12-15 8:50 AM
PERSONAL STORY
As a young adult, volunteering
with others living with IBD and
sharing my story helped me to
y
e
n
r
u
o
J
My
By Ashley Anderson
become more confident. These
experiences pulled me out of my
comfort zone in the best way possible. The newfound freedom I felt
gave me more choices, and I truly
began to live.
Life today
My life today is full of action and
adventure, something my 16-year-
M
old self could never have imagined.
y battle with IBD began
time. The prospect of growing into
From trekking Machu Picchu (one of
when I was eight years
the strong, independent person that
the greatest accomplishments of my
old—but I didn’t know
I longed to be was a distant one un-
life) to completing the 200 km Ride
it back then, and unfortunately
til I found the right
to Conquer Cancer with my sister
neither did anyone else. I was told
treatment. The
I had everything from anorexia and
first few medica-
ultra-mar-
colitis to the simple stomach flu.
tion trials were
athon with
Nothing stuck.
disheartening,
my boy-
but when I finally
friend, I have
and a 125 km
found a therapy
persevered.
At 16 years of age I was officially di-
that worked, the
The barriers
agnosed with indeterminate colitis
world opened
that I created
up around me.
for myself
My journey
and finally, two years later, Crohn’s
disease. As a child I felt alone and
earlier in life
isolated, and I was constantly tired
Speaking up
are gone.
and uncomfortable. Intermittent
As time went
Sure, there
was a lot I had
illnesses, hospital stays and fre-
on I stopped
quent trips to the bathroom went
settling for
to find out and
unexplained to my friends for fear of
less, and
challenges to
ridicule.
instead was
deal with along
able to find
the way—but with
I struggled to stay in class and
ways to build
courage, and help
ing to head to the toilet. I worried
paths around the rough patches.
from my family, I
constantly about my grades and
Unlike in high school, where I had
found my voice. Now I’m a certified
questioned my ability to finish my
kept my struggles hidden as much
nutritionist and personal trainer,
studies.
as possible, in university I realized
and I’m helping others with IBD
that I could simply ask a teacher to
to live life to the fullest.
sit through exams without need-
I sought comfort in my mother,
who was a rock throughout it all.
let me write a test or exam in a sep-
My life is good!
arate room (closer to a washroom)
......................................
A learning experience
for medical reasons. Suddenly, I
Ashley Anderson is a nutritionist,
Life was challenging, to say the
learned that speaking up might well
personal trainer, yoga instructor and
least, because I was in pain all the
be a better way to go.
IBD advocate.
You, Me and IBD
19
2015-12-15 8:50 AM
We’re here to help you!
parent
parent2
mentoring
Robbie’s Rainbow believes
education and support are
key components to caring for
a child living with Inflammatory
Bowel Disease (IBD).
As the best support begins
at home, Robbie’s Rainbow
has created a program
specifically for parents
and caregivers, called
Parent2Parent mentoring.
Our mentoring group
brings parents together to
motivate and inspire. We are
creating a space where parents
can share their experiences
and have the opportunity to
learn about a variety of IBD
topics from guest speakers.
Please contact Nancy
Marcello the Director of
Community Development
at nancy@robbiesrainbow.
ca or visit our website at
robbiesrainbow.ca to learn
more and find out when
a Robbie’s Rainbow:
Parent2Parent Mentoring
group is coming to your area.
rainbow.ca
2015-12-15 8:50 AM

AND IBD - Robbie`s Rainbow

Transcription

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