[MUSIC PLAYING]
TOMIYO WILLIAMS:
When my daughter was 14 years
old, she was originally
diagnosed
with ulcerative colitis,
and then ultimately she was
diagnosed with Crohn's disease.
[MUSIC PLAYING]
To get a diagnosis like that
involving your child,
it hits you like a ton
of bricks.
SKYE WILLIAMS: I was used
to living my life normally,
as a normal teenager.
And then I was diagnosed.
It was really hard to go
through.
TOMIYO WILLIAMS: As time
progressed, her overall quality
of life just diminished at one
point.
That's when it hit me,
I needed to make a difference.
And I said, you know, I'm
interested in supporting parents
in any way that I can,
as well as supporting
the patients.
Her GI group, they reached out
and asked both my daughter and I
if we would consider joining
the Patient Advisory Council.
So we would go to the hospital
to meet with parents
and patients.
On a one-on-one basis,
I primarily worked with parents
that had children that were more
critically ill,
like my daughter.
The peer-to-peer communication
means so much.
It's a lot different
than talking to a physician
or talking to someone that may
not be going through it
firsthand.
We try to be extremely
transparent
and discuss how certain things
make us feel,
because that's what they're
looking for.
One of my big projects
was working with the Crohn's
and Colitis Foundation
to pass a bill that would reform
step therapy slash
fail-first therapy.
For instance, a doctor could
recommend a specific course
of treatment for a patient.
However, some insurance
companies require
that the patient would fail
a few medications first,
and you run the risk
of the patient becoming more
ill.
By reforming it, the patient
could automatically
go to that drug
the doctor originally
prescribed.
We ended up going to the state
capitol.
My daughter and I were
able to meet
with our local representatives.
In March of 2019, my daughter,
she was admitted.
And when they were bringing
her out of surgery,
someone from the Crohn's
and Colitis Foundation called me
and told me that the bill had
been passed.
SKYE WILLIAMS: It's been a fun
experience seeing all
the different ways that we can
advocate,
so I'm very grateful that I have
my mom, my best friend,
by my side
during a time that's so hard.
TOMIYO WILLIAMS: Because I
always felt that there was such
a need for support,
I created a blog.
The name of my blog
is The Rainbow In My Skye.
My daughter, no matter what she
went through, she always
remained positive, and it helped
me.
I try to connect
with the parents.
I try to share my stories.
Also, one of my most
recent projects
has been speaking at women's
health events.
You know, what it's like to be
a mom with a child that has
Crohn's disease, because being
a caregiver to a chronically
ill or disabled child,
like, it just-- it changes
everything.
I didn't even realize that there
were other parents that could
relate to me.
That's been a key factor, making
sure I'm building
that connection.
SKYE WILLIAMS: She used
something that was hard for both
of us
and turned it into something
helpful for other people that
are also going
through the same thing
that we went through.
It's very inspiring,
and I look up to her for it.
TOMIYO WILLIAMS: We've done
a lot of research, you know,
but again, when it comes
to the patient, it's not just
the research.
It's working
with the medical team.
It's so important that you find
a doctor where the lines
of communication are open,
and that if you've got
questions,
they're going to be
willing to answer, no matter
how many questions that you
have.
I can't express that in words,
how important that is.
If you have Crohn’s disease, you may need to get checked more often for early signs of colon cancer. But most people with Crohn's don’t get colon cancer, and there are things you can do to lower your risk.
The two keys are to keep your Crohn’s under good control and to keep up with your colon cancer tests. Ask your gastroenterologist how often you should get a colonoscopy. The general recommendation is that people who've had Crohn's disease for at least 8 years should get this test every 1-2 years.
What the Research Shows
Findings on this are mixed. Some studies have found that people with Crohn's aren't more likely than anyone else to develop cancer. But other research has reached the opposite conclusion, showing a substantially higher risk.
Inflammation is one of the ways the two conditions may be linked. Crohn's causes high levels of inflammation in the intestines. That inflammation, in turn, may make it more likely that abnormal cells that could become cancerous could develop in the GI tract.
What Raises the Risk
How long you’ve had Crohn’s. Most experts agree that the danger goes up the longer you've had Crohn’s. One meta-analysis (in which researchers crunch data from several earlier studies) showed that about 3% of people who've been living with Crohn's for 10 years developed colon cancer. That number rose to about 8% for those who had Crohn's for 30 years.
In comparison, the odds of developing colon cancer at some point in your life -- what researchers call the average lifetime risk of colon cancer for the general population -- is about 4%.
Liver complication. People with inflammatory bowel disease (IBD), including Crohn's, almost certainly have an increased risk of colon cancer if they've developed an IBD liver complication called primary sclerosing cholangitis.
Colon cancer also seems to be more dangerous for people with Crohn's disease. One recently published study from Sweden found that people with Crohn's who get colon cancer are more likely than other colon cancer patients to die from it.
Lower Your Colon Cancer Risk
There are several ways to help protect yourself from colon cancer if you have Crohn’s disease.
Work closely with your gastroenterologist to manage your Crohn’s. You want it to be as well-controlled as possible. Seeing your doctor regularly and taking your medications as prescribed will help keep inflammation in your gut in check.
Keep up with your health screenings. Colon cancer is most treatable when it's caught early, and getting regular colonoscopies is the best way to do that. Doctors are often able to remove precancerous polyps during this procedure, which means that it's sometimes possible to stop this cancer before it even starts.
Getting regular colonoscopies may reduce your chances of getting colon cancer. A large study of nearly 7,000 people with IBD found that those who had a colonoscopy within the past 3 years were less likely to develop colorectal cancer. The same research found that frequent colonoscopies may save your life even if you do get cancer: People with IBD who had a colonoscopy within 6-36 months before being diagnosed with cancer were less likely to die from it.
Ask your gastroenterologist if you'd benefit from including chromoendoscopy in the procedure. This means that blue dye will be sprayed into your colon during the colonoscopy. The color helps your doctor spot flat, precancerous lesions that might otherwise be difficult to see.
Reduce other risks. Curb other risk factors as much as possible. For instance:
- Be physically active.
- Keep your weight in a healthy range.
- Include lots of vegetables, whole grains, and fruit in your diet -- and limit red meat and processed meats.
- Avoid alcohol or limit it to no more than one drink a day for women and up to two drinks a day for men.
- Don’t smoke.
