Episode Transcript
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This role is a production of the GI Research Foundation.
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The GI Research Foundation was able to produce this podcast
with the sponsorship from Metro Infusion Center.
So right now we do have many more options than we used to have,
and it seems to be much more relatable towards the provider
and the patients now coming together and having a great collaboration
as to what may be best for the patient.
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Hello. Welcome to Visceral, the new podcast from the Gastrointestinal
Research Foundation's Gut Instincts, where we explore the ins and outs
of digestive health science with leaders in the field
and those who have been impacted by living with digestive diseases.
My name is Anna Gomberg, and I work at the University of Chicago
Digestive Diseases Center at the University of Chicago Medicine.
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Today we have with us Mary Ayers, who is a registered nurse
and our nurse manager at the IBD Center at the University of Chicago.
Mary has a career that spans over 40 years in GI
and has been working at the University of Chicago for 17 years,
in large part with Dr. Russell Cohen, which is where I met Mary
when I started 10 years ago, actually 10 years ago today.
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And I cannot say enough about Mary's expertise in understanding
the ins and outs of nursing and IBD.
Inflammatory bowel disease is a really complicated diagnosis for patients
and requires a lot of oversight by the entire interdisciplinary team
at the University of Chicago and elsewhere.
And Mary is really key to helping to coordinate that care
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and to help us understand the importance of nursing
and expert nursing care for those patients.
And we also have with us Dr. Benjamin Levy,
Benjamin Levy III, I understand.
And Dr. Levy is one of our faculty as well, who is working, again,
primarily in the IBD space, but also sees patients with many
gastrointestinal conditions, including GERD, and including something
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called IBS or irritable bowel syndrome.
And Dr. Levy, welcome so much.
We are so very grateful to have you with us.
Dr. Levy, you've come to the University of Chicago recently,
but prior to that, you were at Emory University for some of your training
and in Arizona as well.
And we just couldn't be more thrilled to have you with us.
So I wanted to open up this to you to talk to us a little bit about IBD
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and IBS, because these are two different sets of symptoms
that patients have, and one is inflammatory bowel disease
and one is irritable bowel syndrome.
And we have patients, I have patients that talk to me
in support group all the time and use them sort of interchangeably.
And I want to clarify whether or not they are, in fact, interchangeable
and whether or if these are completely different things
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and we should think about them differently.
Dr. Levy, do you want to start off?
So I practice general gastrology at the University of Chicago
and I take care of both IBD patients and IBS patients.
And the main thing to keep in mind when we're taking care of these patients
and trying to figure out what's going on with them
when they present to us in clinic is,
is there are structural changes that are going on.
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So patients with ulcerative colitis and Crohn's disease,
they will have visible structural changes from inflammation.
IBD, ulcerative colitis and Crohn's disease
is an autoimmune disease process where the body is attacking the colon
and other parts of the GI tract.
And IBS is more of a symptom-based diagnosis.
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They're very similar.
It's understandable why patients would be confused between the two names of it
because they sound very similar.
So inflammatory bowel disease is ulcerative colitis and Crohn's disease,
it's kind of like an umbrella term, and IBS is irritable bowel syndrome.
So we listen to the patient's description of what's going on.
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In IBS, patients frequently will have abdominal pain
that's related to their bowel movements.
Some patients will have constipation,
some patients will have loose bowel movements,
and a lot of patients actually will fluctuate between the two extremes
and they'll have what we call IBS mixed, where they go back and forth.
But we predominantly see IBS constipation.
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As opposed to ulcerative colitis and Crohn's disease patients,
they will frequently have diarrhea sometimes at night,
and that's one of the differentiating items between the two disease processes,
is that people with IBS don't wake up in the middle of the night
having to go to the bathroom.
But patients with ulcerative colitis and Crohn's disease might.
Another big difference is the rectal bleeding that they can see.
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You can get mucus in both, so that's not really differentiating.
And frequently, it's the frequency and the volume of the diarrhea.
So patients with ulcerative colitis and Crohn's disease
typically have larger volume diarrhea as opposed to IBS.
And we can get into a lot more of the details, but big picture,
those are some of the differences between the two.
Again, they sound very similar.
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Inflammatory bowel disease is structural and IBS is symptoms.
And we can go over to the details of how we actually determine
whether someone has IBS or not.
Mary, do you have anything to add?
The only thing that I would just add is that there seems to be a lot of confusion
out in the community setting with the term,
probably because the initials are so close and saying IBD, IBS,
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or just the term colitis.
So I think just knowing the differentiating that IBS is definitely a syndrome
and IBD is a disease, a chronic disease.
Well, it's even more confusing because aren't there sort of subtypes of IBS
that are IBS-C and IBS-D?
So then you've just... it's even more complicated
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because the acronyms are not helpful.
We certainly hear that a lot when we talk to patients in different settings.
So there are different treatments that are available for each, for IBS and IBD.
Mary, what are some of the treatments that...
because Mary works primarily with IBD,
what are the treatments that we are looking at now
for patients with Crohn's disease and ulcerative colitis?
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Actually, it's a pretty exciting time on the medicine side of this
because we have so many new therapies coming out,
whereas years ago, we barely had any.
A lot of the therapies biologically based,
now we have oral ones, we have self-injectable ones,
and then we have IV infusible ones.
And the exciting thing about this is we can actually tailor more towards a patient's lifestyle.
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You know, for example, if we have a patient that self-admits,
you know, I can never remember to take my medicine every single day.
So an oral may not be something for them.
Maybe they may opt for an IV infusion
because that may be more appealing to them to say only have an infusion once a month
or once every two months and be done with that and not have to do something daily.
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We sometimes have to see patients that self-injections are a little scary for them.
We can't teach them to do that,
but sometimes they may opt either for the oral or an IV infusion.
So right now, we do have many more options than we used to have,
and it seems to be much more relatable towards the provider and the patients now coming together
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and having a great collaboration as to what may be best for the patient themselves.
You mentioned we have oral medications, which is a pill that you would take,
an injectable, which is something where you would give yourself a shot
every week or two weeks or month or at some interval at home,
and then an IV infusion, which is done at an infusion center either at a hospital or at a clinic off-site.
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Is that correct?
Yes, absolutely.
Yes, we've come a long way where biologics are now in oral form where we have not seen that before in the past.
So we can tailor to what patients actually feel might be best with them,
as long as the collaborating physician feels at the same time that this is a great option for them.
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And that's that shared decision-making that we are always advocating for because patients know themselves.
But, Dr. Levy, I don't think that those are the same medication and medical therapies
that are available for people with other forms of gastrointestinal diseases and disorders.
Is that correct?
Yeah, so again, this is a very, very exciting time period where we have the potential to treat patients
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with a lot more powerful medications than we've ever had before.
And we have so many options in different routes of administration.
The oral is really going to revolutionize how we treat because it's annoying for patients to have to come to an infusion center.
But when they come and we have medications available for them, they feel like they're getting their life back.
And that's our goal, really, like to try to figure out what the best medication is for the patient.
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But we're in a very, very exciting time period for ulcerative colitis and Crohn's disease, as well as for IBS, actually.
Say more about that, because I had talked to Dr. Hannon previously, who has recently retired, one of our leading experts in IBS.
And he walked me through a lot of the different options for IBS, which I was not as familiar with.
But it seems like you kind of have to take different tacks.
You're both addressing symptoms and there's some other underlying mechanisms that are being addressed.
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And it seems like it's really very interesting from a patient perspective.
I think of taking care of patients with IBS a little bit like cooking, where you have to experiment with different ingredients and see what works really well.
We have so many options.
And basically, when I have a patient that comes in, frequently I'm like the second or third or fourth physician that they've seen for this problem.
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Sometimes if they have got a great internist or family medicine doc, they'll very quickly get them to a gastroenterologist.
But frequently these patients have been suffering for a year or two and they're very frustrated.
Or they've tried to self-manage at home and then they've gotten frustrated after a year or two of not being able to have good quality of life,
constantly worrying about either trying to have a bowel movement or needing to find a bathroom very quickly, depending on which side of the IBS spectrum there are.
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And basically, just like physicians who treat IBD, we also want to get the quality of life back.
And we can do it in a variety of different ways.
So the typical patient that presents with IBS is someone that's having abdominal pain.
Frequently, it's in the left lower quadrant and it's relieved by having a bowel movement.
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And they're frequently constipated either in their two different definitions of constipation, they're frequently misunderstood.
So everyone knows that if you can't have a bowel movement and you're only going like once every four or five or six days, that's constipation.
But we also define constipation is when you are not able to have a complete bowel movement and you feel like you're not getting everything out.
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And we frequently see that as well.
So there are two great new drugs that are on the market for IBS constipation, Lins-S and Trulance are great constipation medications.
And these are very new medications that have come out in the past decade.
The advantage of these medications is in addition to relieving the constipation, it also has a pain modulating effect that we can take advantage of.
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And that's really why these medications were designed in order to relieve pain.
So again, the classic IBS constipation symptom is constipation and abdominal pain and the abdominal pain improves after having a bowel movement.
Now, in addition to that, a lot of patients just have bloating.
They feel like their abdomen is distended.
And I've had this three times today where they said that they felt like they were pregnant.
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They're not pregnant. And they're just every time they have a meal, they get bloated.
So for that, we put them on a low FODMAP diet.
As we digest our food, the bacteria in our gut break down the food and release the gas.
Everyone knows that when we eat beans, it releases a lot of gas.
But gastroenterologists and researchers have been doing a lot of studies over the past couple of years and try to determine which foods release a lot of gas.
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And so we're able to put them on a diet where they avoid the gas producing food.
So like they're very common things like garlic and onions.
And there's a whole list. You can look this up.
We actually have a very beautiful handout that we frequently give out to patients in the clinic of the University of Chicago to help them with this.
And that will prevent bloating.
Another frequent complaint that people have is cramping, abdominal cramping.
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And this can happen at any time.
It's frequently exacerbated by stress, actually.
And as med students, almost every med student has a period of IBS at some point in their medical career, right before a huge exam.
And frequently we have the diarrhea part of it.
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But stress frequently exacerbates these IBS symptoms.
Also, frequently people will have this abdominal cramping where they feel like they're having abdominal spasm.
There's a great medication that's been around, very inexpensive because it's been around so long, called Dicyclomete, or Dental is the brand name.
But it's an antispasmodic.
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And I advise patients, if they're having this abdominal cramping, to let me prescribe it and then to carry it around with them.
I have a couple of pills so that when they start having these cramps, they can just take one of those.
There's also been a lot of studies into different kinds of psychiatry medications that we use very low doses of for GI.
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Very, very, very low. So we're not trying to treat depression or anxiety.
If patients have depression or anxiety, we try to take care of the whole patient.
And sometimes the depression or anxiety, especially anxiety, is exacerbating their IBS.
It's not the cause. We're not trying to say anyone is just anxious and that's why they're having a Donald pain.
That's not the case at all.
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They have IBS, but their anxiety may be making it worse.
And so we work in conjunction with our colleagues in psychiatry and psychologists and counselors.
We have great programs here at the University of Chicago.
We actually have a GI psychologist here that we use very frequently.
She's amazing. I just had my last patient of the day in clinic, went to her and had such a great experience.
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And he was thanking me for making the referral.
And she specifically takes care of patients with depression and anxiety who are also having IBS.
And so basically we use frequently Elaville or amitriptyline, which is a very low dose TCA, tricyclic antidepressant.
But we use very, very, very tiny dosages and we use that to our advantage.
And we work together with our psychiatry colleagues.
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Some of those patients are already on medications and we try to work together with our colleagues to come up with a good medical regimen for our patients.
And so over several weeks or several months, we're able to get patient symptoms under control.
And it's fun. It's so wonderful to be able to help patients get their quality of life back and to let them be able to wake up in the morning and not worry about leaving their house.
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It's wonderful.
Yeah, it's pretty cool.
And I understand from talking to Dr. Badell, our GI psychologist, that sometimes the anxiety component of having IBS or having IBD can even become part of that cycle.
That like you are anxious because you are worried about your symptoms.
And so one of the things that even Dr. Dalal was mentioning, she says, you know, we have to get people right for their GI symptoms as well.
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Because that will help with the whole picture of the patient, because then they are less anxious about their GI symptoms.
And that relieves their overall anxiety. And that sort of cycle can be sort of short circuited by improving health.
It seems to really go in all directions. So that's really great. I'm so glad that we do that.
Mary, I have a question for you, because I think you probably get this all the time.
Do patients have IBS and IBD at the same time sometimes?
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Are there patients that have had IBD and then develop IBS or have IBS related symptoms?
Do you see that in your clinics?
Yes, actually, we do.
We do see patients that do have Crohn's or ulcerative colitis.
And maybe subjectively, they are having a lot of symptoms.
But objectively, when we do a colonoscope and look inside and everything looks great.
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So from that objective perspective is that there's no inflammation there.
Everything looks great, but patients are having symptoms.
And maybe they are having some abdominal pain, diarrhea and so forth and that.
But after looking at maybe imaging and endoscopy and all of that.
So they can have underlying IBS at the same time that they do have IBD.
And then is it the same sort of treatment regimen that Dr. Levy mentioned, including the low FODMAP,
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which I know that people don't necessarily stay on a low FODMAP diet forever.
But there's different nutritional approaches that we can take.
But all of those medications are available as well, or are there comorbidities to be concerned about?
No, it's absolutely true.
The same type of therapies that Dr. Levy was talking about is something that would be an option for
patients that are in remission from their Crohn's or ulcerative colitis, but are still having these
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IBS symptoms.
We do have patients that are in combination of different therapies like that.
So yeah, that is true.
And diet, yes.
And not everyone is the same.
It's what triggers one person may not trigger the next person.
So what we kind of are looking at is for a patient to understand what foods may be the
trigger for them and what foods to avoid.
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So again, it can be very individualized, but we do look at those things that what could possibly
be your triggers.
I think that, again, even patients with IBD who know that they look at the picture of their colon
and they have so much inflammation, they have so much going on, they still really do see that
there are some differences that diet seems to make for them, even if that can be attributed to
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all of the other things that are going on.
So if you are a patient and you're having a lot of GI symptoms, at what point would you
recommend the patient see a GI specialist?
So I think when a patient actually is having constant chronic abdominal pain,
constant either constipation or diarrhea, if they are seeing blood, almost definitely right away.
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But it's really when you're looking at these type of symptoms, too many people somehow sort of,
and I don't want to say get used to it, but that's just the way it is.
This is just how my body reacts to everything.
But when it's never ending and it keeps cycling around, you definitely need to seek,
especially with the abdominal pain and rectal bleeding for sure.
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And often this is something that would be done through your primary care physician
or if your insurance permits, seek out a specialist of your choosing.
I certainly have met very many people who are suffering for a very long time before they can
get the appropriate care that they need.
So that's really good advice.
Thank you.
I would add to that, and that was a great summary of when patients should seek care.
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But if a patient is having a, if it's impacting their quality of life or their work,
that's like the huge tipping point where I think patients really need to take this seriously.
And it's not just for IBS or IBD.
If patients are having persistent rectal bleeding just in general,
it may be painless rectal bleeding.
You should seek care of a gastroenterologist to see what's going on.
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And not just assume that it's a hemorrhoid if it's really persistent, but anything,
you know, abdominal pain that's altering their quality of life.
And we've got great specialists out here and really, really nice physicians and nurses
and our whole staff and team waiting to take care of these patients.
So there's no advantage of delaying this up.
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In addition to that, I would also add if people are having unintentional weight loss
or they're unable to tolerate food, that would be another reason to seek medical care.
Dr. Levy, you work a lot in the colorectal cancer screening space, including,
do you want to tell us a little bit about Tune It Up?
Because I want to make sure that you have an opportunity because it's such a great program.
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I also want to mention right now that you're a cellist.
Is that correct?
Yes. I was a music major in college and really, really into music and volunteering
with the Chicago Symphony.
I'm actually going to see Yo-Yo Ma play with the Chicago Symphony tonight.
Oh, wow. Well, wonderful. But what is Tune It Up?
So three years ago, I was invited by the American College of Gastroenterology,
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which is one of the major GI organizations that advocate for gastroenterologists and patients
internationally. And I was asked to organize a virtual concert during the pandemic.
And our first concert was for colorectal cancer awareness month in March of 2021.
And we just finished putting together our third concert, which is still available and online.
If anyone wants to watch.
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We'll link to it.
Yeah. The website is gi.org backslash concert. Again, gi.org backslash concert.
The concert this year was 68 minutes and it's completely free. John Beteese from Stephen
Colbert's show, who's the band leader, as well as violinist Hilary Hahn, Cincinnati Pops,
Rufus Wainwright, who's a rock singer, a whole bunch of different artists.
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But over the past couple of years, we've been doing this program to encourage people to get
colorectal cancer screening. And we use it as a tool to try to spread the word that the new
colonoscopy screening guidelines have changed. And instead of being age 50 to start, now we
recommend that patients start at age 45 because we're seeing early onset colon cancer, particularly
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at age 49. And so the thought is to start screening patients at age 45 in order to remove polyps
before they can turn into cancer. So last year we did the concert with Ben Foles and a whole
bunch of different artists. Tim Reynolds, who's a guitarist in the Dave Matthews band, Lisa Lowe,
Ben Queller, lots of different artists. And it's been so much fun to put this project together with
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the PR committee at the American College of Gastrology, as well as there are a whole bunch
of amazing people who are actually employees at the American College of Gastrology who work on this
program with us. And now it's kind of a project for the University of Chicago, which has been a
lot of fun. And we got one of our fellows involved this year who recorded a PSA that was played during
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the concert. And it's great being able to make a national impact through a program like this.
I should also add, Katie Kirk has also contributed PSAs to each of our concerts.
Yeah, of course.
And she's a big colorectal cancer advocate because of her first husband who passed away
with colorectal cancer.
Many talents, Ben. I'm so impressed.
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Mary's so impressed she's going to take up the French horn, I think,
so the gin can be part of it. That's how impressed Mary is.
Actually, it's the tambourine.
Okay.
Oh, the tambourine. You know what? If you're going to play a tambourine,
nobody wants to hear a bad tambourine player, right?
Play it well.
That's great. Yeah, I think it's such a cool thing. And I think it's such a wonderful way
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to merge your many passions. So I'm very happy that this program exists and that it's so successful.
Thank you both. This was wonderful. Does anyone have any final thoughts or anything
else they'd like to add to this discussion? If there was any takeaway that you wanted patients
to have after listening to you, what would it be?
That we understand. We understand that getting diagnosed, first of all, with inflammatory
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bowel disease can be extremely scary. Learning that you have a chronic disease,
learning about all the different treatments and the plans, and it's really about finding
a physician or physician assistant, nursing, anybody that you can be on the same page with,
and you can have a heart-to-heart with, and you can be co-champions together and coming up with
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therapies together, and getting your family involved and having them know about what your disease
state is. And one other thing is, and I know, Annie, you're going to love this one, is I really
believe is getting into support groups, finding people that have your disease, and having them
be champions, having them that have gone through these courses, that you can talk to someone that
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you're nervous and you're scared about because these people really are truly amazing. And then
support groups that we have, and I just think that can ease so much anxiety in patients.
Absolutely. Patients know. Patients know what it's like to get an infusion or to take medication
or to have a surgery that is needed. So all of those things, it's so true, Mary. Thank you so
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much. Dr. Levy, anything from you?
That's perfect. I agree with all that. The thing that will add to it, there are a lot of patients,
there are a lot of patients, and I understand why, but there are a lot of patients that don't
want to talk about the rectum or anything going on down there. And we've got great physicians,
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we've got great nursing staff, and we're available to help people. And so people shouldn't feel
hesitant to go talk to their doctor. We are available to help get their lives back. So
come seek care. We will do our best to try to get your quality of life back and try to figure out
what's going on because it's not helpful to be at home wondering and looking stuff up on the
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internet about what potential diagnoses you have. Just come see us so that we can help you. So again,
anyone who's having persistent symptoms is interfering with our quality of life,
just come seek a great gastroenterologist and we'll help you. We'll help you get better.
That's so great. Thank you so much. I could talk to you guys all day. Also, like so many
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wonderful positive feelings coming through this call, I just feel like, oh, this is like we're
really doing it here. I feel great with knowing that you two are working so hard for all of us.
Thank you both so much. I really appreciate you taking the time to talk to us today.
And thank you for your support of the GI Research Foundation, the foundation that supports all of us.
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So thank you. Fantastic. Thank you so much. Thanks for having us. Thank you for listening to this
episode of the podcast, Visceral from the GI Research Foundation. This episode was written
and produced by me, Anna Gomberg, and edited and mixed by the incredible Mike Collins-Dowd,
who also composed our theme music. We hope you will join us next time. Until then,
to access other podcasts and to learn more about research, to treat, prevent, and cure
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digestive diseases, please visit the website at giresearchfoundation.org. That's giresearchfoundation.org.
Thank you to Metro Infusion Center for making this podcast possible.