>> Sharon: Hello, welcome everyone.
I'm Sharon Dudley-Brown.
I'm an assistant professor here at Johns Hopkins University,
specifically I see patients
in our Inflammatory Bowel Disease Center.
And so in creating my talk for today,
which is really to present to patients and their families,
I tried to think of the things
and the questions that I get from patients.
And what are some of the things
that I spend a lot of time with
when I'm in my office with the patient,
talking about IBD.
So I put them into "15 Things People with IBD Should Know".
So these are in a little bit of an order
in terms of my sort of perceived importance,
but I also had to make it flow a little bit.
So number one is really, no one knows what causes IBD.
Patients still ask all the time, but nobody really knows.
So there's a tiny amount of genetic risk.
So if you have a parent or a first degree relative
you are more likely as a child to develop the disease,
however, keep in mind that 85% of patients
who get a diagnosis of IBD have no family history.
In addition we have learned over time
that there's a environmental affect.
So IBD is an autoimmune disease
and so if you know anything about autoimmune disease,
a lot of this has been impacted by the environment.
So we know that the rates of IBD increases
when that area or country becomes more westernized
or if that person moves to the United States.
And we also know that IBD has some changes in the intestines
that can be initiated by certain things.
So on my slide I have aspirin, ibuprofen,
as well as GI infections.
Many times the trigger,
when people first get their diagnosis of IBD and get sick,
sometimes it's triggered by an actual infection.
The infection goes away, but the body perceives
the inflammation or that there is something there,
that's that autoimmune notion
and so it keeps creating the inflammation in the area.
So medications are good.
So in general, I like patients to think
that medications are a good thing.
Patients frequently perceive medications to be bad things,
but most IBD patients need to be on a regular medication,
whether it's a daily pill, a weekly or biweekly injection,
an infusion, but most patients need
to be on regular medications, meaning they take it
around the 12 months of the year, year after year.
The only medication that's an acception is steroids,
'cause they're only a bridge to another medication.
I'm gonna talk more about that in a few minutes.
So really, the risk of not treating the IBD
is worse than the treatment of the IBD.
Treating earlier, we know, improves outcomes
so this is especially in Crohn's disease,
that the earlier the treatment, the better outcomes,
meaning less surgeries, which my colleague
is going to talk about in a few minutes.
The goal is really remission.
In addition to remission, so the patient feels better
and doesn't have symptoms,
our goal is also eliminating the inflammation
that's causing the symptoms in the first place.
Medications may be, the patient may be required
to take multiple medications in order
to achieve this improvement in the inflammation.
And the other tip is that we always
continue medications in pregnancy.
This slide just shows the impact of stopping medications,
so being good about taking your medication,
again whether it's prescribed daily
and the patient takes it daily or however it's prescribed,
is really important.
So this slide basically says that over time,
stopping taking the medication, you can see,
that the risk of a flareup
or not being in remission really increases,
so adherence patients,
89% chance of remaining in remission after two years
if they take their medication regularly.
Those that stop, you can see, have a flareup.
So we know that adherence is really the key.
So this is a slide that was done from a study
from the Crohn's and Colitis Foundation of America
and they asked patients directly,
why do you not take medication
and the number one, as you can see on this slide,
it says too many times per day,
but there's also, it's inconvenient, too many pills,
or I don't have symptoms.
So right, people feel better,
they stop taking their medication,
but we know this is problematic.
So number four is that this notion
of steroids are really a bridge,
but you have to know where you're going
as you start to cross that bridge.
So this slide phrases it more as a,
if you start a rescue therapy, for example,
with steroids, you need an exit strategy,
so where are you going to go.
And that's whey frequently we start patients
on medications in the glass of biologics.
Number five are the issues around narcotics.
Many patients with both Crohn's or ulcerative colitis
have abdominal pain, however, narcotics,
for many reasons nowadays, are not the best medications.
Here on this slide I outline why in the GI area,
narcotics are really not helpful.
So narcotics are associated with increased infections,
abscesses which are infections inside
and fistulae, which I'm going to talk about in a few minutes
and narcotics are associated with worse outcomes.
So when we at a hospital center,
the hospital looks at, right, who's sick and who dies.
And what's the number one is narcotics and steroids.
So narcotics can actually worsen inflammation
and they can also make the bowels slow down,
which isn't helpful when we're trying to treat the disease
and figure out the status of the GI tract.
So the bottom line is to avoid narcotics.
Number six is urgency.
And this really focuses on treating the location.
Urgency really comes from inflammation that's in the rectum.
Whether it's Crohn's disease or ulcerative colitis,
if the disease is in the rectum,
the patient is going to have urgency.
So a normal rectum can stretch to hold the stool.
If it gets inflamed, it doesn't stretch well
and if it's inflamed, it's hypersensitive.
So even a little bit of liquid makes it feel full,
so the patient feels like they have
to keep running to the bathroom,
hence that notion of urgency.
So this is really best treated with a topical therapy
or a local therapy, so some sort of therapy
that's put right on or into the rectum,
usually a suppository or an enema.
Number seven is about fistulae
and what a fistula is is an abnormal connection
between two areas.
In this case it's two organs that don't normally connect.
And fistulae occur when inflammation is present
and usually in the GI tract, it also occurs
when there is pressure present.
So the key is inflammation, right?
So if we can get rid of the inflammation
with taking mediations, then most likely
patients don't develop fistulae.
However, if there's a lot of inflammation in an area,
the patient can develop a fistula.
The picture here is actually of a buttocks cheek
and you can see a fistula on the top part,
because there is sort of this bypass area,
bypassing probably a rectum,
and that is coming to the outer wall.
It can be internal, so one part of the bowel
to the other part, or to the bladder, or to the vagina.
Number eight, how do we treat fistulae,
because these are not fun for patients to develop.
So the important thing to remember is we do have treatment,
however, we really want to try
to prevent them by really managing that inflammation,
but if they occur, we typically maximize our therapy,
again targeting the inflammation.
I would say 99.9% of patients need
to be on a class of medication of the biologics.
If they're already on it, we usually increase the doses
in order to drive that inflammation down.
Our surgeon is going to talk about setons,
I believe, that helps to wick and drain the area
to prevent developing an abscess
and then also, we need to remove any stricture,
that's a narrowing, if it's present,
either through surgery or by dilating it endoscopically.
Steroids work but, steroids increase the risk of infections,
increased risk of strictures,
diabetes, cataracts, obesity, weight gain,
and contribute to anxiety and depression.
The goal should be that you're
not on steroids more than once a year
and preferably never, if that's possible.
And my next slide is really to talk about osteoporosis.
So steroids can cause rapid bone loss
and it can occur in the first two months
if you're taking a daily steroid.
This is happening, but the problem
is the patient doesn't know it's happening.
This bone loss is difficult to reverse.
We do have some medications, but they're not perfect
in and of themselves either.
We usually recommend patients take calcium and vitamin D,
but sometimes there are prescription medications
that can be given to help prevent or reverse the bone loss
and this is all detected
through using a DEXA scan or a bone scan,
which is a radiology test.
Number 11, Crohn's is worsened a lot by smoking.
So for some reason, which we don't know the exact mechanism,
a patient who has Crohn's disease, who smokes,
has worse symptoms than the patient who is a nonsmoker.
We know that treatments are significantly less effective,
so we can give you five different medications
and be on high dose of those medications,
but they're just not as effective
as in the patient who is a nonsmoker.
In addition, if patients smoke,
those patients have more surgeries
than the equivalent nonsmoker
and stopping smoking is more effective
than changing therapy in many instances.
This is really always particular for Crohn's disease,
because the opposite seems
to be true for ulcerative colitis,
in that patients who have a flareup
of their ulcerative colitis,
if they were a smoker, if they do smoke,
the inflammation goes away.
So we see this a lot in patients who quit smoking
in their 40s and 50s and within nine to 12 months,
those are the patients sometimes
are diagnosed with ulcerative colitis,
because smoking at that time was protective probably,
for a number of years and when they stopped smoking,
there's inflammation.
Again, we don't know the exact mechanism of all of that.
Number 12, is about an infection.
So Clostridium difficile, or what we call C. diff,
is a bacteria that infects and inflames the colon.
It causes a lot of watery diarrhea,
just like patients who have inflammatory bowel disease get.
It occurs more in people with decreased normal bacteria,
so patients who recently used an antibiotics
and it's much more common in people with IBD
than the average population.
So what we do is, we want to make sure
that any flareup is not a cause,
caused by C. diff infection,
before changing therapy or adding steroids.
And the picture on the right here
is a picture of a colon,
which is infected with the C. difficile bacteria.
13 is about, we have a couple ways
or sort of predicting the future.
So this is an area where there's
a lot of research being done right now.
We know for a number of years that there are biomarkers,
which may have been run
when you were first diagnosed with IBD,
or somebody was thinking about it,
so some people use them to help diagnose IBD,
but it's really the best to help predict
who may have more severe Crohn's or ulcerative colitis.
So those are the patients that we counsel
and tell them that, we think you're going
to have a fairly severe case of IBD,
therefore, trying to make sure
that we get rid of that inflammation
and that we really monitor
that inflammation quite often over time.
There are inflammatory markers that are in the blood,
so C reactive protein and sedimentation rate
are inexpensive blood tests.
They're not specific to Crohn's, colitis, or any IBD,
but they are markers of inflammation in the body,
so they can be helpful in saying
that a patient is in a flareup and having inflammation
and then it's a predictor in that
if the markers of inflammation are normal
and the patient, you know, is feeling well,
then there's really a less than 5% risk
of flare in the next year.
So that's how it's helping us, as a clinician,
predict how well a patient will do.
And we usually use all of that also
in combination with a colonoscopy.
And what's a little bit newer in the last few years
is a stool test or stool marker of inflammation,
which is a fecal calprotectin
and we can use those to help see
if the patient is in a flareup
and also monitor that
so it's sort of the poor man's colonoscopy,
that we can use, sort to on an urgent basis,
to look at inflammation in the colon.
Number 14, IBD outside the gut.
I find that patients really are never told about this
until they either have an episode
of extraintestinal manifestations,
or if they come to clinic with me and I talk about it
with every single patient at every visit.
So most of these extraintestinal manifestations
correlate with gut inflammation
and these can be seen in the liver,
the skin, joints or eyes.
And basically it shows how IBD's a very systemic disease,
so it's not just the gut that's involved.
Some of these other organs are involved as well.
We treat these with medications
that we use to control the gut inflammation,
so frequently it's the same mediations that we use
and sometimes we escalate the dosing on current medications
in order to manage these extraintestinal manifestations.
And then finally is the notion of health maintenance,
so I find that patients, many patients with IBD are young
and they don't have a primary care provider,
but they really need to have one,
because they need to have a access point
for not only if they do possibly get sick,
but they need for things like vaccines,
so they need to have a central home
and make sure they get regular checkups.
So vaccines are really important.
IBD patients who are on biologics can't have live vaccines,
but we actually don't have a lot of live vaccines
around the country today
and they definitely need to get a flu vaccine annually
to help prevent any flu.
Patients need to get cancer screenings,
either by their primary care provider
or going to a specialist,
so things like PAP smears in women,
certain medications can increase
the patient's risk for skin cancer,
so they need to see, those patients
would need to be referred to a dermatologist
on an annual basis.
And then behavioral health is really important.
Again, whether it's through
the primary care provider or referring
to a behavioral health specialist can be helpful.
Anxiety and depression is much more common in IBD patients
than it is in the general population,
whether it's a cause or effect,
looking certainly at the symptoms
are enough to cause increases in anxiety and depression
in these patients and the Canadian studies show
that the rates are about 30% for both anxiety and depression
in patients, higher in Crohn's patients
than in ulcerative colitis patients.