Crohn’s and Ulcerative Colitis: Know the Difference

ARUN SWAMINATH: Hi, everyone.

I'm Dr. Arun Swaminath.

I'm the Chief

of Gastroenterology

and the director

of the Inflammatory Bowel

Disease Program

at Lenox Hill Hospital,

Northwell Health.

I'm here today to answer some

of the internet's most commonly

asked questions

about ulcerative colitis.

Let's get started.

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Does anyone else feel

like nothing is working?

I've been on mesalamine

for months, added steroids,

and I'm still flaring.

Does anything actually

work long-term?

So I do see this sometimes,

and I think it really depends

on what you are comfortable with

and what your doctor is

comfortable with.

There are so

many excellent therapies

for ulcerative colitis,

but they do not work

for everyone.

What I see in this question

is someone who has only been

on the first-line therapies,

and they're worried that nothing

is working.

So I think the key here

is communication.

If you are having symptoms

after being started

on a therapy, the first question

before you leave the office is

to say, how long do you think

it's going to take me to feel

the benefit of this?

And how long do we take

to decide if this therapy is

getting me under control?

And how long do we decide it's

not working

and we're going to go to plan B?

So I like to give a roadmap

to my patients when I see them,

because I think it's fair to

set expectations

and it's good to understand.

What's the deal with biologics?

What should I expect?

I'm nervous about side effects.

This is one of the most

common questions I get

with my patients.

I actually keep it

fairly simple.

I say that no matter what it

is you're

taking, if you open the bottle

and that little piece of paper

that falls out that you ignore

and throw away, if you were

to open it up and look at it,

it would tell you all

of the different things that

could happen with Tylenol.

You don't think about it.

You're saying, I have some pain,

I got to take Tylenol.

I know it's going to work.

I'm going to feel better.

It may not be that

different with biologic drugs.

These are all-- there are things

that can happen to people

as side effects.

And most of them can be managed,

monitored, or changed depending

on what's happening

with the specific drug.

But if these medications are

being recommended to you,

it is because the disease is

getting into a place

where we describe it as moderate

to severe, as opposed to mild.

And patients who have

moderate to severe disease

are much, much, much, much more

likely to benefit from therapy

than to be harmed by therapy.

So that's the thing to remember.

All right.

Next question.

Is remission actually possible?

I feel like I just bounced

from one flare to the next.

Does it ever calm down for real?

The answer is yes it can calm

down for real.

But what I hear

in this patient's question

is someone who may have been

exposed to multiple therapies,

and none of them

have ever got them into a place.

That's two different places--

one is clinical remission,

meaning that they feel fine

and they don't have symptoms.

The next level of remission

is endoscopic remission, which

is once I start a therapy,

typically four to six months

after starting,

we do a colonoscopy to prove

these areas are back to normal.

So that's the final endpoint

for most patients.

Now, if a patient is having

a flare after a flare

after a flare,

you got to go back and

figure out--

are the flares what we think

they are?

Meaning are there other symptoms

or other reasons patients aren't

doing well?

And secondly, if a patient is

having a flare on therapy,

it may not be a failure

of therapy.

People are allowed to have

flares and you have to

manage them.

But it's probably not

normal to have flare after flare

after flare on a therapy.

The way that we decide

if a medication is efficacious--

is it working?-- is we have

a before and after.

So we have

a baseline colonoscopy.

We know what that inflammation

looks like.

Ideally, after

starting treatment

and we do a colonoscopy,

that next one should

look pristine.

And that's called

endoscopic remission.

So people

in endoscopic remission

tend to do really well

over the next year

and rarely have flares,

although it's possible.

And people who don't get

into endoscopic remission

have more frequent flares.

So the idea to ask the doctor

then say, well,

am I an endoscopic

remission or not?

And if I'm not, what else can

we do to get me there?

Is surgery a must for treating

ulcerative colitis, or are there

other options?

I'm starting to think

about getting my colon removed.

What complications should I

be on the lookout

for with ulcerative colitis?

What do I need to know?

Now, this is a big scary moment

and most patients are not

excited about surgery.

And it's a fair feeling.

And it's a real fear.

And what I would say

is, if this conversation is

happening in your head,

you should

be open

with your gastroenterologist

because something is not

working well.

And oftentimes, there are teams

across the city.

And in New York, where I work,

there are amazing combinations

of centers where we've

got gastroenterologist,

colorectal surgeons

with a specialty

in inflammatory bowel disease,

radiologists with a specialty

in inflammatory bowel disease,

pathologists who have

a specialty

in inflammatory bowel disease,

all coming together to discuss

really complicated patients.

So oftentimes I will see

these patients and we'll talk

about what's worked, what

hasn't worked,

what might be

a different pathway that they

haven't tried yet,

or what might even

be a clinical trial pathway.

These are drugs that are not

yet approved,

but coming on the market

eventually if they work.

So I will do a phase II

or a phase III clinical trial

where the patient gets access

to a different therapy.

Now, there are reasons to think

about surgery.

And it's patients often who are

very refractory to therapy.

Thankfully, that tends to be

a real minority of patients

these days because of all

of the different therapies

we have available to us.

However, there are

those patients and often we will

get together, often

in a combined visit

with the surgeon

and a gastroenterologist

to talk about surgery,

to talk about what it means,

to talk about what

the immediate recovery

looks like,

and to talk about what

the long-term recovery

looks like.

And these are

all complex conversations that

will take time.

What are the other times

to really be

considering surgery?

So a small fraction of patients,

thankfully much less than it

used to be,

can have

precancerous or cancerous

lesions of the colon.

And in that case, surgery will

become something that's

really important.

And this is where you want

to make sure

that the pathologist,

the gastroenterologist,

and the surgeon

agree that this is the next best

move for the patient's

long-term health.

And so these are

the common situations in which

we would discuss surgery

for a patient.

Now, has anyone else dealt

with hair loss or weird side

effects from medications?

I started biologics and suddenly

my hair is falling out.

I am the only one?

No, you're not the only one.

And yes, it is absolutely normal

to be freaked out that your hair

is falling out.

What's interesting about hair

is that the injury to the hair

has happened not at the time

you started the biologic,

but months before,

when you were horribly sick--

possibly malnutrition.

And that's the time that there's

injury to the hair.

But even though the injury

happened three to six months

ago, the way that hair works

is that the hair falls out

much later.

Oftentimes, by the time

you start an effective therapy

and so many people often

connect, starting the therapy

with their hair falling out,

when really, the reason the hair

is falling out

is because of what happened

before starting the therapy.

If this is happening to you,

I think it's very fair to say,

hey, can I see

your dermatologist

and double-check

that I'm not on any medicines

that is causing the hair loss.

Oftentimes, I tell patients,

even though it seems terrifying,

wait three to six months

and you're going to see hair

regrow and you're going to have

your health back,

and you're going to feel good.

I'm scared to eat anything.

What do you eat when everything

makes you feel worse?

Even plain rice messed me

up yesterday.

So this is a difficult question

because everyone thinks

that their diet is the reason

that they're good or bad.

It is normal to feel like what

goes into your body,

and especially is involving

your digestive tract,

has a direct correlation

to the amount of inflammation

you're experiencing

or to the symptoms

you're experiencing.

Well, it may feel true,

but it turns out it's probably

not true.

When you're inflamed,

almost anything can make you

feel bad.

This does not mean that the rice

is the reason you're feeling

bad, or you can never have

pizza again.

Or you can never drink again,

or never enjoy the things

that you enjoy.

So the most important thing

is to get the inflammation

under control.

After that, you can decide which

foods make you feel good or bad.

And I have an amazing dietician

and I think everyone should

figure out a way to say, hey,

I would like to talk

to somebody, because I'm trying

to figure out

if these specific foods are

good for me or bad for me,

and whether they're causing me

to feel the symptoms I feel.

So oftentimes, if the colitis is

under control,

there may be other reasons

that you're having urgency

or diarrhea

or cramping or bloating,

and all of those

can get investigated separately.

[VIDEO PLAYBACK]

- Good news is that there is

a natural way to heal your gut

at any stage that it's in.

When you're in a flare,

ingredients like curcumin,

Qing-Dai, Boswellia can all make

a difference to really bringing

down inflammation.

After a flare, your gut lining

needs to heal.

L-glutamine and butyrate are

amazing for that.

And for long-term support,

it's about probiotics--

but not all probiotics,

the right ones--

plus gentle fiber, vitamin D,

and continuous stress support.

[END PLAYBACK]

ARUN SWAMINATH: So there's a lot

of good information here.

So I think the best studied

dietary supplements are

curcumin, which is a very

potent anti-inflammatory

and, in some studies,

is as good as mesalamine.

So there's nothing wrong

with taking

a high-quality

curcumin supplement.

And because supplements are

unregulated, you want to make

sure the stuff you're getting--

the stuff you're ingesting--

is the stuff you think you're

getting and ingesting.

That's the key point.

So curcumin and Qing-Dai--

there's a lot of good data

to support its use

in ulcerative colitis.

Now, when it comes to a lot

of the other supplements,

there are smaller studies that

are not as well controlled.

And the data is a little bit

soft, but I don't think there's

harm in getting

a high-quality supplement

and trying it and seeing

if that investment is paying off

in the symptoms

that you're experiencing.

Probiotics and prebiotics are

a little bit of a tougher nut

to crack.

As I mentioned before,

we know that just

replacing bacteria

doesn't change the underlying

problem, and I often think there

are cheap, easy ways to get

good bacteria.

And I recommend for my patients

things like yogurt

with probiotics or kefir,

or fermented foods, if that's

part of your natural diet,

are all ways to get

healthy bacteria back

into your gut.

Next question I feel like I live

in the bathroom.

I don't know how anyone can work

full-time with this condition.

Any tips for managing

work while flaring?

So this is a great question--

affects a lot of people.

And what I often

do with patients who have

symptoms that are not yet fully

under control,

or they've been fine

but now they have symptoms,

is to give them a work excuse

to say, either take the time off

until you're better,

or can you work from home.

And most patients, even

if they're having some symptoms,

they feel confident of being

able to do their work as long

as they can do it remotely,

as long as they have a bathroom

that they are close to

and they can still get

their work done.

So I think if you have some

of those options in front

of you,

these are manageable moments,

and you get better

and you get back to your life.

I keep hearing that stress can

trigger my ulcerative colitis.

Is there any truth to that?

Well, yes and no.

We do know that stress can

directly affect the gut

through the vagus nerve

and other systems,

including hormones.

And so stress can make the gut

feel bad.

So this is why

pretty much everybody,

if they're stressed,

they may go too slow,

they get constipated,

or if they're stressed,

they're running to the bathroom.

They might have diarrhea.

And what happens in a patient

with ulcerative colitis?

So they can have

those same symptoms like anyone

else with stress,

but a small fraction of patients

who have real stress--

major life stressors-- they've

lost a job,

they're going through divorce,

they are dealing with the death

of a close family member.

These are real stresses where I

have seen patients have

real flares.

And when I say flares,

this means that they're

bleeding, that they were

previously healthy, that then

they start having symptoms.

And so you're going to have

to treat that as a flare.

And it's impossible for me

to give a prescription to say,

no more stress in your life.

So I think you have to deal

with it as it comes.

And what we typically

do is we have patients who can

reach us and they say,

I think I'm having a flare--

what do I do?

And we try to get them

on a telemedicine appointment

the same day

or the next day to do testing

to make sure they don't have

any infections that are

confusing the picture,

and then to get them

on short-term treatment

to get them better,

and then reassess them

in a short while

to figure out if they're

on the right track.

Anyone else terrified to travel?

I want to take a trip,

but the idea of being stuck

on a plane without a bathroom

freaks me out.

How do you manage?

So this is the key.

So this person understands

that they're being freaked out.

And I would go back and ask

the question-- how long have you

felt well?

Well, if you've been feeling

well for two weeks,

and you feel anxious,

that's probably super normal

to feel anxious.

But if you've been feeling well

for six months or a year

and you're still too freaked

out, well, there's something

else that's going on,

and I call it a patient's

version of PTSD.

There was this really

severe diagnosis.

Even though you're completely

healthy, you don't yet have

trust in your body, and you feel

anxious when you don't

have control.

Completely expected and normal.

And what do we do?

Well, we got to stop having you

feel that way.

We got to get you control

of your life.

And oftentimes, what we

do is we pair our patients

with a clinical psychologist

or a clinical social worker

who's able to help them

through these emotions.

And oftentimes,

short-term cognitive behavioral

therapy can be really

useful to work

through these feelings

and to decrease that anxiety

level so that you can go live

your life.

That's the goal.

And that's it.

It's been a pleasure answering

your questions.

Thank you so much for watching.

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