Hi I'm Maddie and I have inflammatory
bowel disease. My doctors asked me if I
could help explain some things that you
should know about inflammatory bowel
disease or what we call IBD. Before we
talk about IBD there are a couple of
really important things that you need to
do first if you have IBD. It's not your
fault. You didn't do anything to make it
happen. It's just bad luck.
Second, some people feel sort of alone or
isolated when they are diagnosed with
IBD but it's really important to talk to
someone and it's important to understand
that you aren't alone. There are over 1.5
million people in the US with IBD
and over 150,000 of them are kids or
teens just like you. In order to take
care of yourself when you have IBD it's
important to understand what IBD is and
how it can affect you. IBD is really a
couple of different diseases. One is
called Crohn's disease and the other is
ulcerative colitis.
Sometimes it's not completely clear
which it is. Then they call it
indeterminate colitis. We don't know
exactly what causes IBD but in general
it is caused by immune dysregulation. That just means that the immune system
is overreacting.
Normally the immune system plays a very
important role in watching out for
infections. When it finds an infection it
turns itself up to fight off the
infection and then turns itself down
when the infection is gone. However in
IBD it's turned up even when it
shouldn't be. This can lead to soreness
and inflammation in the intestines and
sometimes other areas like the eyes,
liver, skin or joints. we treat IBD by
turning down the overactive immune
system. Even though both Crohn's and
ulcerative colitis are caused by immune
dysregulation there are some differences
between them. Ulcerative colitis is
limited to the inner lining or mucosa of
the large intestine which is also called
the colon.
However Crohn's disease can cause
inflammation anywhere between the lips
and the anus and through all the layers
of the intestine. Because the
inflammation can go through all the
layers of the intestine it can sometimes
cause scarring and narrowing in the
intestine which is called a stricture or
even a hole in the intestine.
A hole can cause an abscess which is a
pocket of infection outside of the
intestine or a fistula which is like a
tiny tunnel from the intestine to
another part of the body. Inflammation
from IBD can give you symptoms like
diarrhea, stomach pain, blood in your poop,
vomiting, fevers, joint pain, poor growth
and feeling really tired and not hungry.
Although we don't have a cure for IBD
yet there are a pretty good ways to
treat IBD which can make the
inflammation and symptoms go away. But
even with treatment a person with IBD
can have what we call a flare. That just
means the inflammation has come back and
when it does symptoms often come back to.
Avoiding a flare is better than treating
a flare so you should always take your
medicines exactly as they were
prescribed. This gives you the best
chance of staying well. However if you
have a flare particularly symptoms like
severe pain, bleeding, vomiting or high
fevers you should let your doctor know
right away. Okay just one more thing, even
though I have talked a lot about
symptoms most people with IBD are doing
well most of the time and can do their
normal activities like school and sports.
Well I've gotta go. I hope this is
helpful and I hope you understand a
little bit more about IBD. Good luck and
take care of yourself!
