March 22, 2023 • 25 mins
Advanced Practice Nurses and leaders in the field of ostomy care Janice Colwell, APRN, CWOCN, FAAN, and Marita Kametas, MSN, APN, FNP-BC, CMSRN, COCN offer need-to-know information about post-surgical life with an ostomy for IBD patients.
Jan Colwell speaks from over 40 years of experience as a wound, ostomy, and continence specialist, and is the director of the Ostomy Care Clinic at the University of Chicago Medicine; and Marita Kametas specializes in ostomy care for IBD patients at the University of Chicago IBD Center.
During this conversation, Jan and Marita employ their expertise to address the most common questions (and misconceptions) of patients regarding life with an ostomy.
The GI Research Foundation was able to produce this podcast with a sponsorship from Takeda.
Written and produced by Anna Gomberg. Edited and mixed by Mike Collins-Dowden. To learn more or to make a gift to support medical research, visit giresearchfoundation.org.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
The GI Research Foundation was able to produce this podcast with a sponsorship from Takeda.
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I had one lady share with me recently. She was just sobbing with joy in her preschool parking
lab because she was finally able to bring her children to preschool. And that's because
she had a colectomy and had an iliostomy place.
Thank you for joining us today on this episode of this role, a podcast from the GI Research Foundation.
(00:31):
Today with me, I have Merida Kamaitas and Janice Caldwell, who are both APNs who specialize in
ostomy care. And welcome, Jan and Merida. I'm so excited to talk with you today about
ostomy care, particularly for our IBD patients. So Jan, if you could introduce yourself a little bit,
I would say that we have worked together for 10 years. So I know you pretty well.
(00:57):
But whenever I mentioned that I work with you among nurses or APNs, it is like working with a rock star.
So Jan's background, I know she hates it when I say this, but Jan's background and her reputation
really are probably among the best in the world for this kind of work. So Jan?
(01:17):
Wow, Annie. Okay, thank you. Well, you made me smile and I appreciate it. I consider myself quite a
lucky advanced practice nurse because I have been in the field of ostomy care for more than 40 years.
And when I say it, I always blink a few times and go, really, it's gone so fast. But I've been very
(01:38):
lucky to spend my entire career at the University of Chicago with a group of wonderful clinicians
who all believe as I do that anyone with an ostomy deserves that one-on-one ongoing care
to make that adjustment and initially to make the decision to have an ostomy and then to learn how
to manage it and then be there to support people for a long time. So I am very lucky that I've been
(02:02):
doing something that I love. I've also been able to contribute to the field. I am the past president
of the Wound Ostomy and Continents Nurses Society. So I was able to contribute to that field as well.
And I continue to be on the board of directors of a charity group. It's called Friends of Ostomates
Worldwide USA. And our mission is to supply ostomy supplies to those people around the world who
(02:27):
don't have access to supplies. And it's another area I'm very proud to participate in.
And it's so important. More than 40 years. It's unbelievable what expertise you have amassed
in that time and just how what a leader you are in this field. And we're so grateful that you work
with us. And Merida is a rising star in the field of ostomy care. Merida, could you introduce yourself?
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Absolutely. So my name is Merida Camitas. I am a nurse practitioner. I function in a dual role,
which is very exciting for me in the inflammatory bowel disease clinic, as well as caring for
patients with stomas. And it is a massive honor for me to be here in such illustrious company with
Jan. And thank you very much for having me. I agree very much with Jan that it's our priority to
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make sure that patients get the care that they deserve when they have a stoma. And for me, the
really integral and rewarding part of this job is helping patients get back to the quality of life
that they desire and helping them get back to being able to do preschool pickups and to do
their jobs and their hobbies and things like that with a stoma and teaching them how they can be
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successful with that. And before we could even, I think, talk about that, can we just clarify
what a stoma is and what an ostomy is just in case this is new information for the listeners of this
podcast. Sure. So an ostomy is an open, just means opening. And it usually, especially for
our IBD patients, would be an opening into the GI tract. So that means either the small intestine
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and that opening is called an ileostomy or in the large intestine, and that's called a colostomy.
And what that means is a piece of the intestine is brought to the skin and stool is discharged at
that point. And I think the important thing for people to remember is when the stool is discharged
out of the body at that place, the person who has an ostomy has no sensation or control over that.
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And in order to manage it, they wear an odor-proof pouching system over the area to collect stool.
So stoma, another word, means ostomy as well, actually means the actual opening,
as opposed ostomy is a little more general. And why would someone have a stoma and an ostomy?
Yeah. So patients can undergo stoma creation for a litany of reasons. Often in the lens of
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inflammatory bowel disease, that can be because of disease that's refractory to medical therapy,
so disease severity that's persisting despite our best efforts with the medications that we have to
offer. It can also be for patients with profound perianal disease. So often in Crohn's disease,
patients can have tracks develop from their rectum to the skin. That can be very painful and can
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cause a significant health burden. And so sometimes we will have an ileostomy, as Jan explained,
an opening to the ileum or small bowel to help divert stool away from that area. And often we
also have stoma creation in patients that can develop dysplasia or pre-cancerous cells within
the colon. And those are probably the chief reasons in inflammatory bowel disease for stoma creation.
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When patients are told that they need to undergo this surgery in order to have a stoma or an
ostomy, what is the first thing they usually think of? Or what is their first reaction usually?
I think most people have little knowledge of what an ostomy is. And if they have knowledge,
it usually isn't particularly positive because they probably have heard about people having
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problems. Because quite frankly, people with ostomies who don't have problems, there's nothing
to talk about, they're just back into their lives. So many people will say, oh no, that's that bag
thing. How do people live with it? I think our role really is important, especially during the
decision making part, to help people understand that people live very easily with an ostomy bag
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once they make that adjustment. And I never underestimate the fact that it's an adjustment
for our patients to learn how to live with an ostomy. But we know at University of Chicago
that we are going to be there to support them through that journey. So we spend, Maria and I
spent a lot of time talking to our patients about living with an ostomy. And we always say, usually,
(06:48):
at least I start my conversation by asking them, so what did you think when you heard that word
ostomy? Because if you don't hit their fears right away or their major concerns, they'll hear
nothing else that we're going to say. It's really important because it is, it seems like such a life
changing or at least it could be a very life changing, any surgery, of course, is going to
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have a huge impact on someone because it is something that they are going to undergo and
is a major surgery. But then to be coming out of it and to be changing the way that one eliminates
would seem like that would be, of course, something that people would have questions about.
Marina, is there anything you would add to what Jan said?
Yeah, I think what Jan said is absolutely perfect. I would say here at University of Chicago,
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we really highlight the importance of the interdisciplinary care model. And one of the
unique parts of my role, which is nice, is I often see patients with IVD when they're well,
and we'll sometimes see patients with refractory disease and can kind of
shepherd them through that process to getting to the stoma from having very, very severe disease to
getting to the stoma. And so it's a unique opportunity to be able to address, as Jan said,
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what are the fears? What are the concerns? And then looking at what are the potential benefits
and what are the things that you can get back to doing? What are the quality of life metrics
that we can shoot for here that will give objective improvement and the patient can
feel subjectively that they've made the right choice? Because that's, I think, one of the hardest
parts for patients is, you know, we've got a lot of options for therapy these days. It's a really
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dynamic treatment landscape right now. And looking at, well, should I wait for just one more drug
to come out? Should I wait for just one more thing? What's the right decision? They don't
want to make this permanent decision that isn't the right one for them. So as Jan mentioned,
giving a huge support to them and really making sure that they are aware of all the resources
available to them and really walking them through what's a day in the life with a stoma look like
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for them. And what could they expect in terms of pouch function, in terms of how often they're
emptying, how often they need to change the pouching system, all of those things, and getting
down to the real nitty-gritty of the day to day, I often find is really fear alleviating for patients
for the most part and also offers the opportunity to then address, you know, some more specific
(09:05):
concerns that may come up as the education is being provided. What does the day in the life of
an ostomy patient who has taken this leave, what does it look like? Well, so we talked about that
they wear a pouching system and that pouching system fits around the ostomy opening. Keep that in
place 24 hours a day. And they usually change it, meaning take it off and put a new one on about
(09:29):
every three days. So they plan, you know, a scheduled change time is what we pretty much call it.
So that they put it on one day, they take it off the next day, they don't have any issues
with the seal or the pouch in between. But during the day, they need to check the pouch
occasionally because at the bottom of the pouch is a closure. And the closure allows the patient
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to open up the end and to drain the stool into the toilet. And for most of our early ostomy
patients, they're emptying the pouch into the toilet four to maybe six times a day. You know,
when I talk to people about it, and they go, whoa, six times a day. But when you think about it,
they empty it before they go to bed, they empty it when they get up and then several more times
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during the day, depending on what they're eating or drinking. In terms of activity,
there's no limitations to activities on a daily basis. People worry that perhaps they can't go
swimming in the pouch adhesive is waterproof. So absolutely, they can of course take a shower
and a bath as well. Or the person who might be in construction says, well, can I really go back
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to work if I wear a pouch? It might be a problem. And again, the answer is yes, there may be some
accommodations, you know, certain types of protection over a pouching system for people,
or maybe certain clothes to keep it nice and flat so that the person can wear their bathing suit or
a slinky dress or type blue jeans. But those are the kind of things that we gradually go over people
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with people. And one of the things I probably should point out is our IBD section and our
colorectal section have some really nice videos that we've put together that talk about things
like this. So for instance, we have a video on how to conceal an ostomy pouch, because I think of
all the questions or issues that I hear from people, it's won't everyone know I have it? Won't
(11:18):
people be able to see it underneath my clothes? And I understand that it sounds like it would,
but being able to see an actual person in their blue jeans or in a dress or doing normal activities
is fabulous. So we usually try to use those videos that we have on our website to help people
understand kind of what it looks like in the big terms clothes and activities.
(11:42):
Yeah, those videos are an incredible resource. I'm so glad that we have those because I feel
like seeing is really believing. And there is, you know, fortunately with, I think our media
landscape, there is just a lot more information about ostomy and people living with ostomies and
how that how everything works than there used to be. But I think it's really nice that we have
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what I consider to be the gold standard of those resources available right here on our website.
Merida, is there anything else you would add to like what it's like to the patients have told you
what it's like to live with an ostomy? One thing that patients will often say is, well,
will everyone know, as Jan mentioned, and it's one of those things I try to tell them, like,
if you don't tell them, they don't know, that's the advantage of our pouching systems that we have
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being odor proof and having a really, you know, dynamic shared decision making process with your
ostomy care team to make sure that you have a pouching system that is free of leakage, free
of failure and able to provide that predictable seal because predictability is power as I tell them.
And oftentimes as well, they think four to six times that's so many times to empty during the
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day. But when you think of patients with really complex and severe inflammatory bowel disease,
sometimes that can be upwards of 20 times a day that they're going to the bathroom and it's
unpredictable. It's times that they are rushing out of a meeting, hanging up the phone, you know,
not being able to bring their kids to school in the morning. And so you get predictability there
as well. So knowing as you mentioned, in the morning at night, and maybe after meals, you're
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going to be emptying your pouching system. Those things are helpful. Additionally, the nice part
I've seen in the last five years that I've been an inflammatory bowel disease is there's this huge
advent on social media of this body positivity movement. And that hasn't excluded our patients
with stomas, which is very exciting to see the Crohn's and Colitis Foundation, as well as some
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other social media outlets do a lot of body positivity work for patients with inflammatory
bowel disease and ostomates as well. What is what does body positivity that can you say a little
bit more about that? What what does that look like for our patients with ostomies and what you
know, what is what is positive about body positivity for them? Yeah, absolutely. So I think,
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you know, when you look at the general population, we see this, this modern ideal of beauty and this
modern ideal of what's socially acceptable for, you know, whatever stage of life that you're in.
And this movement is, you know, meant to be more inclusive and show that everyone is beautiful in
their own way. And oftentimes, our patients can struggle with this when they have large abdominal
scars, when they've undergone many surgeries, when they have, you know, certain types of
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fistulas and things like that, that can be really damaging to patients body image and can ultimately
lead to some anxiety and depression associated with their disease and their healthcare burden.
So using this as, you know, G.N. said, if you can see people like you, then it gives you this
feeling of solidarity. So a lot of these organizations have been showing there's one group,
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particularly that's run by a couple women with IBD, and they post pictures of them all on vacation,
and they're, they're out in their cute bathing suits, and they've made no adjustments to the
type of bathing suit that they want to have because they have a stoma. And you can see their
cute little pouching system out. They may have a cover on it that, you know, matches their swimsuit,
or just their, you know, plain pouching system as they would normally wear it. But it's really
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empowering, I think, especially when you think of, you know, Crohn's disease and all sort of
colitis often affects young people. And when you look at patients who are 16, 17, 18, 19, 20,
confidence can sometimes be an issue in yourself at that time period. You're learning who you are,
and then when you're going through that, whilst having a chronic disease, that can really be a
huge, you know, burden on them. So seeing people that look like them, that are young like them,
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and even older patients as well, is really empowering for patients to be able to say like,
yes, I've got a stoma, so what? You know, I'm going to go do what I want to do. And this is me
taking ownership, and it's not going to hold me back. It's going to help propel me into the
opportunities I want in the future, because my disease is under control.
Oh, that's so wonderful. What a wonderful change the last 10 years have brought for us with that,
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compared to, I can't imagine, you know, how, what the dark ages of feeling like this is
something that you can't be, you can't be open about, or that you feel some sort of
shamer embarrassment, which sounds like we're kind of on the way out.
I just have another comment, because I agree with you, there's been a huge change in talking about
ostomies. And I see that in my young patients in particular, telling me, oh, yeah, my roommate
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knows all about this, or my all my girlfriends have seen it, or I talk about it all the time,
where I think 20 years ago, it was, oh, no, we don't talk about it. I don't tell anyone.
My husband's the only one who knows. My children don't even know. And I think the more we can
talk about it, the more realistic it becomes for people to live with it, they understand that they
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can. Now I'm hearing a lot more people coming in, we're kind of sitting down and talking about
decision making, and they say, well, you know, my girlfriend's brother has one, and I talked to him,
or I talked to so many people before I came here, were before people knew nobody.
Not that they had met anyone with it, but that person didn't talk about it. And I think that
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opened that door is opened quite a bit in the last 10 years.
Oh my gosh, absolutely. My next question is, what do you wish people knew as, you know, patients
that are maybe about to take this step? What do you wish they knew about having an ostomy,
living with an ostomy? And I can start because I do talk to patients quite a bit.
And when I started working at the IBD Center, I knew no one with an ostomy, and then I met a few
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people, and now I know probably, you know, more than 100 people who live with an ostomy. And I
would just say all of them, I mean, 100% would say that their life is so much better, that they
are so grateful that they have this opportunity to get this surgery, to have this change in how
their body works, because now they can do all the things that they couldn't do before, and being
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miserable, living with Crohn's disease or ulcerative colitis is no life. It's not a life for
anybody. But what would you say to patients who, you know, come to you with the surgeon or their
doctor has said, this is something that is on the table for them? What do you wish they knew?
I think you hit the nail on the head. So many people come back and say, I wish I would have
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made this decision sooner. But they had to wait till they were ready for sure. And I think
control is probably the number one thing that we can provide to patients, especially some of our
very sick IBD patients, who tell me the stories about not being able to eat anything when they go
out with friends, because they're worried that they're going to have a bowel movement, or not
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being able to take long car rides because they know they're going to need the washroom in a
couple hours. That's not control. Control is I have a pouching system, I'll empty it whenever I get
to a bathroom. There's no rush. The pouch is going to stay on. It's odor proof. So helping people
understand that there's a big issue of control that we believe we'll be able to help them get back.
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It's really wonderful. Merita, what about you? Yeah, absolutely. I agree with that. And I think,
you know, as Jan mentioned, control is so huge when just your bodily function is out of your
locus of control. That's a really challenging experience for patients. And so I often, you
know, let them know, like, what are the biggest symptoms that you're experiencing now and how
would having a ostomy or a stoma change that experience? I have a lot of patients that come
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to see me. I'm a young mom. I have a lot of patients that have young children as well. And
they'll say, I have 10 bowel movements in the morning and I can never get my child off to
preschool. And they will just, I had one lady share with me recently, she was just sobbing with joy
in her preschool parking lot because she was finally able to bring her children to preschool.
And that's because she had a colectomy and had an ileostomy placed. So she now has this control
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back where she can be in charge of her daily schedule, but also be in charge of her daily
schedule to be able to thrive. You know, if you're just surviving, there's so much that you're missing
outside of, you know, the things that you can enjoy in life. If you're just going with your
friends to dinner, but you're sitting there watching everyone else eat because you're concerned
about urgency and frequency, then are you really enjoying yourself to the maximal potential? And
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if a stoma is right for you, depending on the unique situation that you're in, you know, it can
really give you so much more control, especially when you have a big team like we have at U
Chicago backing you up to make sure that you have all the tools in your toolkit to be as successful
as possible. So wonderful. That really like touches me so much as a mom myself. I'm a
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mom myself. I'm just like, I completely understand that I as a mom and a patient, I completely
understand that like the idea that being able to do the things that you need to do for other people,
not even just for yourself, but because you are, you have so many responsibilities throughout the
day. That's really great. Well, this has been wonderful. Is there anything that you guys would
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like to add or anything that we didn't discuss yet or any other, any other important like one
thing that you want everybody to know about ostomy, whether they have one or not, or whether
they're a patient or not? Is there anything that you guys would like to add? I think the only thing
I would add is to let people know that there are ostomy spet nurse specialists. I'm not sure people
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always understand that and we are lucky at U of C. We have a team of them both in the hospital and
in the outpatient setting and not just in the Hyde Park campus. So we really, I think it's
really important that people just as important as the surgeon because the surgeon knows how to make
the stoma. We know how to manage it and that whole team piece is important. Why is it nursing that
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is so critical for ostomy care? What is special about nurses? I'm asking two nurses. What is
special about nurses? But I think, I mean, why is it so important? Well, let me comment then maybe
Maria can add as well. I think as nurses, we are kind of head to toe kind of providers. We're putting
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all those pieces together. The great thing about U of C is we have many, many specialists and many
of the specialists have different areas that they help to manage. But as nurses, even though we're
nurse specialists, we tend to put the whole piece together. Maria and I worry about what our patients
eat, what gets eliminated, how they feel overall, what's their quality of life, as Marina mentioned
(22:10):
before. So I think as nurses, we tend to pull that whole piece together. We also tend to be that
long term provider as well. We are there for them at all times because we're well aware that as a
person ages or gets more active or changes their profession, they may have other needs that they
need to touch base with us. So being there for them through that entire time they have the
(22:34):
ask to me, I think is one thing that nurses bring to the picture.
Yeah, I think the core of nursing training is looking at the patient as a whole person,
not looking at them as their disease colon or their structured small bowel, but looking at them
as a whole person. You are a woman standing in front of me, you are a mom, you are a professional,
and you happen to have Crohn's disease, not Crohn's disease being the first part of that
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sentence. Using the first in person language, but also first in person approach is really
important. And looking really at the interdisciplinary care model. I think as nursing, we really look
at what's the surgical piece, what's the medical piece, what's what we call the nursing piece or
the stoma management piece, but then also looking at the other amazing resources we have here of,
we have a really robust dietitian team, nutrition team, as well as being lucky enough to have a
(23:24):
GI psychologist on staff who can help with a lot of the things that our patients go through and can
help support us in our quest to give them really comprehensive care. And oftentimes, I find us
as kind of like the quarterback. So we're looking at, we're seeing the patient every month, every
couple months for whatever reason, and then saying, I think it's time for you to go back and talk with
(23:46):
the surgeon, or I think it's time for you to go back and talk with your attending physician,
or perhaps this is a good time for us to plug into GI psychology. And kind of using that as
just the touch point for the patient. They've got enough to consider in their lives that they've
got one person as that touch point. It's helpful for their management. Absolutely. Definitely the
quarterbacks. That's what we should be calling you always, our advanced practice providers,
(24:09):
that is exactly what they are. That is so true. Oh, Marita, I'm so, we're so lucky to have both
of you. I am just, I'm thrilled. Thank you guys. I know you are both extremely busy, and I thank
you both for taking the time to talk with me today. And I look forward to sharing even more
with our audiences as we get more into this podcast. So thank you guys both so much,
(24:32):
Jan and Marita. Thank you for having us. Thank you for listening to the podcast,
Visceral, from the GI Research Foundation. This episode was written, produced and edited by me,
Anna Gomberg, and mixed by the incredible Mike Collins-Dowdy, who also composed our theme music.
We hope you'll join us next time and rate, like, or subscribe wherever you find your podcast.
Until then, visit the GI Research Foundation at gurf.org, that's G-I-R-F.org, to learn more
(24:59):
about how to support the research that treats, cures, and prevents digestive diseases.
The GI Research Foundation was able to produce this podcast with a sponsorship from Takeda.
(00:07):
I had one lady share with me recently. She was just sobbing with joy in her preschool parking
lab because she was finally able to bring her children to preschool. And that's because
she had a colectomy and had an iliostomy place.
Thank you for joining us today on this episode of this role, a podcast from the GI Research Foundation.
(00:31):
Today with me, I have Merida Kamaitas and Janice Caldwell, who are both APNs who specialize in
ostomy care. And welcome, Jan and Merida. I'm so excited to talk with you today about
ostomy care, particularly for our IBD patients. So Jan, if you could introduce yourself a little bit,
I would say that we have worked together for 10 years. So I know you pretty well.
(00:57):
But whenever I mentioned that I work with you among nurses or APNs, it is like working with a rock star.
So Jan's background, I know she hates it when I say this, but Jan's background and her reputation
really are probably among the best in the world for this kind of work. So Jan?
(01:17):
Wow, Annie. Okay, thank you. Well, you made me smile and I appreciate it. I consider myself quite a
lucky advanced practice nurse because I have been in the field of ostomy care for more than 40 years.
And when I say it, I always blink a few times and go, really, it's gone so fast. But I've been very
(01:38):
lucky to spend my entire career at the University of Chicago with a group of wonderful clinicians
who all believe as I do that anyone with an ostomy deserves that one-on-one ongoing care
to make that adjustment and initially to make the decision to have an ostomy and then to learn how
to manage it and then be there to support people for a long time. So I am very lucky that I've been
(02:02):
doing something that I love. I've also been able to contribute to the field. I am the past president
of the Wound Ostomy and Continents Nurses Society. So I was able to contribute to that field as well.
And I continue to be on the board of directors of a charity group. It's called Friends of Ostomates
Worldwide USA. And our mission is to supply ostomy supplies to those people around the world who
(02:27):
don't have access to supplies. And it's another area I'm very proud to participate in.
And it's so important. More than 40 years. It's unbelievable what expertise you have amassed
in that time and just how what a leader you are in this field. And we're so grateful that you work
with us. And Merida is a rising star in the field of ostomy care. Merida, could you introduce yourself?
(02:54):
Absolutely. So my name is Merida Camitas. I am a nurse practitioner. I function in a dual role,
which is very exciting for me in the inflammatory bowel disease clinic, as well as caring for
patients with stomas. And it is a massive honor for me to be here in such illustrious company with
Jan. And thank you very much for having me. I agree very much with Jan that it's our priority to
(03:18):
make sure that patients get the care that they deserve when they have a stoma. And for me, the
really integral and rewarding part of this job is helping patients get back to the quality of life
that they desire and helping them get back to being able to do preschool pickups and to do
their jobs and their hobbies and things like that with a stoma and teaching them how they can be
(03:39):
successful with that. And before we could even, I think, talk about that, can we just clarify
what a stoma is and what an ostomy is just in case this is new information for the listeners of this
podcast. Sure. So an ostomy is an open, just means opening. And it usually, especially for
our IBD patients, would be an opening into the GI tract. So that means either the small intestine
(04:05):
and that opening is called an ileostomy or in the large intestine, and that's called a colostomy.
And what that means is a piece of the intestine is brought to the skin and stool is discharged at
that point. And I think the important thing for people to remember is when the stool is discharged
out of the body at that place, the person who has an ostomy has no sensation or control over that.
(04:31):
And in order to manage it, they wear an odor-proof pouching system over the area to collect stool.
So stoma, another word, means ostomy as well, actually means the actual opening,
as opposed ostomy is a little more general. And why would someone have a stoma and an ostomy?
Yeah. So patients can undergo stoma creation for a litany of reasons. Often in the lens of
(04:57):
inflammatory bowel disease, that can be because of disease that's refractory to medical therapy,
so disease severity that's persisting despite our best efforts with the medications that we have to
offer. It can also be for patients with profound perianal disease. So often in Crohn's disease,
patients can have tracks develop from their rectum to the skin. That can be very painful and can
(05:18):
cause a significant health burden. And so sometimes we will have an ileostomy, as Jan explained,
an opening to the ileum or small bowel to help divert stool away from that area. And often we
also have stoma creation in patients that can develop dysplasia or pre-cancerous cells within
the colon. And those are probably the chief reasons in inflammatory bowel disease for stoma creation.
(05:40):
When patients are told that they need to undergo this surgery in order to have a stoma or an
ostomy, what is the first thing they usually think of? Or what is their first reaction usually?
I think most people have little knowledge of what an ostomy is. And if they have knowledge,
it usually isn't particularly positive because they probably have heard about people having
(06:03):
problems. Because quite frankly, people with ostomies who don't have problems, there's nothing
to talk about, they're just back into their lives. So many people will say, oh no, that's that bag
thing. How do people live with it? I think our role really is important, especially during the
decision making part, to help people understand that people live very easily with an ostomy bag
(06:25):
once they make that adjustment. And I never underestimate the fact that it's an adjustment
for our patients to learn how to live with an ostomy. But we know at University of Chicago
that we are going to be there to support them through that journey. So we spend, Maria and I
spent a lot of time talking to our patients about living with an ostomy. And we always say, usually,
(06:48):
at least I start my conversation by asking them, so what did you think when you heard that word
ostomy? Because if you don't hit their fears right away or their major concerns, they'll hear
nothing else that we're going to say. It's really important because it is, it seems like such a life
changing or at least it could be a very life changing, any surgery, of course, is going to
(07:12):
have a huge impact on someone because it is something that they are going to undergo and
is a major surgery. But then to be coming out of it and to be changing the way that one eliminates
would seem like that would be, of course, something that people would have questions about.
Marina, is there anything you would add to what Jan said?
Yeah, I think what Jan said is absolutely perfect. I would say here at University of Chicago,
(07:34):
we really highlight the importance of the interdisciplinary care model. And one of the
unique parts of my role, which is nice, is I often see patients with IVD when they're well,
and we'll sometimes see patients with refractory disease and can kind of
shepherd them through that process to getting to the stoma from having very, very severe disease to
getting to the stoma. And so it's a unique opportunity to be able to address, as Jan said,
(07:57):
what are the fears? What are the concerns? And then looking at what are the potential benefits
and what are the things that you can get back to doing? What are the quality of life metrics
that we can shoot for here that will give objective improvement and the patient can
feel subjectively that they've made the right choice? Because that's, I think, one of the hardest
parts for patients is, you know, we've got a lot of options for therapy these days. It's a really
(08:20):
dynamic treatment landscape right now. And looking at, well, should I wait for just one more drug
to come out? Should I wait for just one more thing? What's the right decision? They don't
want to make this permanent decision that isn't the right one for them. So as Jan mentioned,
giving a huge support to them and really making sure that they are aware of all the resources
available to them and really walking them through what's a day in the life with a stoma look like
(08:43):
for them. And what could they expect in terms of pouch function, in terms of how often they're
emptying, how often they need to change the pouching system, all of those things, and getting
down to the real nitty-gritty of the day to day, I often find is really fear alleviating for patients
for the most part and also offers the opportunity to then address, you know, some more specific
(09:05):
concerns that may come up as the education is being provided. What does the day in the life of
an ostomy patient who has taken this leave, what does it look like? Well, so we talked about that
they wear a pouching system and that pouching system fits around the ostomy opening. Keep that in
place 24 hours a day. And they usually change it, meaning take it off and put a new one on about
(09:29):
every three days. So they plan, you know, a scheduled change time is what we pretty much call it.
So that they put it on one day, they take it off the next day, they don't have any issues
with the seal or the pouch in between. But during the day, they need to check the pouch
occasionally because at the bottom of the pouch is a closure. And the closure allows the patient
(09:52):
to open up the end and to drain the stool into the toilet. And for most of our early ostomy
patients, they're emptying the pouch into the toilet four to maybe six times a day. You know,
when I talk to people about it, and they go, whoa, six times a day. But when you think about it,
they empty it before they go to bed, they empty it when they get up and then several more times
(10:12):
during the day, depending on what they're eating or drinking. In terms of activity,
there's no limitations to activities on a daily basis. People worry that perhaps they can't go
swimming in the pouch adhesive is waterproof. So absolutely, they can of course take a shower
and a bath as well. Or the person who might be in construction says, well, can I really go back
(10:34):
to work if I wear a pouch? It might be a problem. And again, the answer is yes, there may be some
accommodations, you know, certain types of protection over a pouching system for people,
or maybe certain clothes to keep it nice and flat so that the person can wear their bathing suit or
a slinky dress or type blue jeans. But those are the kind of things that we gradually go over people
(10:56):
with people. And one of the things I probably should point out is our IBD section and our
colorectal section have some really nice videos that we've put together that talk about things
like this. So for instance, we have a video on how to conceal an ostomy pouch, because I think of
all the questions or issues that I hear from people, it's won't everyone know I have it? Won't
(11:18):
people be able to see it underneath my clothes? And I understand that it sounds like it would,
but being able to see an actual person in their blue jeans or in a dress or doing normal activities
is fabulous. So we usually try to use those videos that we have on our website to help people
understand kind of what it looks like in the big terms clothes and activities.
(11:42):
Yeah, those videos are an incredible resource. I'm so glad that we have those because I feel
like seeing is really believing. And there is, you know, fortunately with, I think our media
landscape, there is just a lot more information about ostomy and people living with ostomies and
how that how everything works than there used to be. But I think it's really nice that we have
(12:05):
what I consider to be the gold standard of those resources available right here on our website.
Merida, is there anything else you would add to like what it's like to the patients have told you
what it's like to live with an ostomy? One thing that patients will often say is, well,
will everyone know, as Jan mentioned, and it's one of those things I try to tell them, like,
if you don't tell them, they don't know, that's the advantage of our pouching systems that we have
(12:27):
being odor proof and having a really, you know, dynamic shared decision making process with your
ostomy care team to make sure that you have a pouching system that is free of leakage, free
of failure and able to provide that predictable seal because predictability is power as I tell them.
And oftentimes as well, they think four to six times that's so many times to empty during the
(12:47):
day. But when you think of patients with really complex and severe inflammatory bowel disease,
sometimes that can be upwards of 20 times a day that they're going to the bathroom and it's
unpredictable. It's times that they are rushing out of a meeting, hanging up the phone, you know,
not being able to bring their kids to school in the morning. And so you get predictability there
as well. So knowing as you mentioned, in the morning at night, and maybe after meals, you're
(13:09):
going to be emptying your pouching system. Those things are helpful. Additionally, the nice part
I've seen in the last five years that I've been an inflammatory bowel disease is there's this huge
advent on social media of this body positivity movement. And that hasn't excluded our patients
with stomas, which is very exciting to see the Crohn's and Colitis Foundation, as well as some
(13:29):
other social media outlets do a lot of body positivity work for patients with inflammatory
bowel disease and ostomates as well. What is what does body positivity that can you say a little
bit more about that? What what does that look like for our patients with ostomies and what you
know, what is what is positive about body positivity for them? Yeah, absolutely. So I think,
(13:50):
you know, when you look at the general population, we see this, this modern ideal of beauty and this
modern ideal of what's socially acceptable for, you know, whatever stage of life that you're in.
And this movement is, you know, meant to be more inclusive and show that everyone is beautiful in
their own way. And oftentimes, our patients can struggle with this when they have large abdominal
scars, when they've undergone many surgeries, when they have, you know, certain types of
(14:14):
fistulas and things like that, that can be really damaging to patients body image and can ultimately
lead to some anxiety and depression associated with their disease and their healthcare burden.
So using this as, you know, G.N. said, if you can see people like you, then it gives you this
feeling of solidarity. So a lot of these organizations have been showing there's one group,
(14:35):
particularly that's run by a couple women with IBD, and they post pictures of them all on vacation,
and they're, they're out in their cute bathing suits, and they've made no adjustments to the
type of bathing suit that they want to have because they have a stoma. And you can see their
cute little pouching system out. They may have a cover on it that, you know, matches their swimsuit,
or just their, you know, plain pouching system as they would normally wear it. But it's really
(14:56):
empowering, I think, especially when you think of, you know, Crohn's disease and all sort of
colitis often affects young people. And when you look at patients who are 16, 17, 18, 19, 20,
confidence can sometimes be an issue in yourself at that time period. You're learning who you are,
and then when you're going through that, whilst having a chronic disease, that can really be a
huge, you know, burden on them. So seeing people that look like them, that are young like them,
(15:20):
and even older patients as well, is really empowering for patients to be able to say like,
yes, I've got a stoma, so what? You know, I'm going to go do what I want to do. And this is me
taking ownership, and it's not going to hold me back. It's going to help propel me into the
opportunities I want in the future, because my disease is under control.
Oh, that's so wonderful. What a wonderful change the last 10 years have brought for us with that,
(15:44):
compared to, I can't imagine, you know, how, what the dark ages of feeling like this is
something that you can't be, you can't be open about, or that you feel some sort of
shamer embarrassment, which sounds like we're kind of on the way out.
I just have another comment, because I agree with you, there's been a huge change in talking about
ostomies. And I see that in my young patients in particular, telling me, oh, yeah, my roommate
(16:09):
knows all about this, or my all my girlfriends have seen it, or I talk about it all the time,
where I think 20 years ago, it was, oh, no, we don't talk about it. I don't tell anyone.
My husband's the only one who knows. My children don't even know. And I think the more we can
talk about it, the more realistic it becomes for people to live with it, they understand that they
(16:30):
can. Now I'm hearing a lot more people coming in, we're kind of sitting down and talking about
decision making, and they say, well, you know, my girlfriend's brother has one, and I talked to him,
or I talked to so many people before I came here, were before people knew nobody.
Not that they had met anyone with it, but that person didn't talk about it. And I think that
(16:51):
opened that door is opened quite a bit in the last 10 years.
Oh my gosh, absolutely. My next question is, what do you wish people knew as, you know, patients
that are maybe about to take this step? What do you wish they knew about having an ostomy,
living with an ostomy? And I can start because I do talk to patients quite a bit.
And when I started working at the IBD Center, I knew no one with an ostomy, and then I met a few
(17:13):
people, and now I know probably, you know, more than 100 people who live with an ostomy. And I
would just say all of them, I mean, 100% would say that their life is so much better, that they
are so grateful that they have this opportunity to get this surgery, to have this change in how
their body works, because now they can do all the things that they couldn't do before, and being
(17:36):
miserable, living with Crohn's disease or ulcerative colitis is no life. It's not a life for
anybody. But what would you say to patients who, you know, come to you with the surgeon or their
doctor has said, this is something that is on the table for them? What do you wish they knew?
I think you hit the nail on the head. So many people come back and say, I wish I would have
(17:57):
made this decision sooner. But they had to wait till they were ready for sure. And I think
control is probably the number one thing that we can provide to patients, especially some of our
very sick IBD patients, who tell me the stories about not being able to eat anything when they go
out with friends, because they're worried that they're going to have a bowel movement, or not
(18:18):
being able to take long car rides because they know they're going to need the washroom in a
couple hours. That's not control. Control is I have a pouching system, I'll empty it whenever I get
to a bathroom. There's no rush. The pouch is going to stay on. It's odor proof. So helping people
understand that there's a big issue of control that we believe we'll be able to help them get back.
(18:40):
It's really wonderful. Merita, what about you? Yeah, absolutely. I agree with that. And I think,
you know, as Jan mentioned, control is so huge when just your bodily function is out of your
locus of control. That's a really challenging experience for patients. And so I often, you
know, let them know, like, what are the biggest symptoms that you're experiencing now and how
would having a ostomy or a stoma change that experience? I have a lot of patients that come
(19:05):
to see me. I'm a young mom. I have a lot of patients that have young children as well. And
they'll say, I have 10 bowel movements in the morning and I can never get my child off to
preschool. And they will just, I had one lady share with me recently, she was just sobbing with joy
in her preschool parking lot because she was finally able to bring her children to preschool.
And that's because she had a colectomy and had an ileostomy placed. So she now has this control
(19:31):
back where she can be in charge of her daily schedule, but also be in charge of her daily
schedule to be able to thrive. You know, if you're just surviving, there's so much that you're missing
outside of, you know, the things that you can enjoy in life. If you're just going with your
friends to dinner, but you're sitting there watching everyone else eat because you're concerned
about urgency and frequency, then are you really enjoying yourself to the maximal potential? And
(19:55):
if a stoma is right for you, depending on the unique situation that you're in, you know, it can
really give you so much more control, especially when you have a big team like we have at U
Chicago backing you up to make sure that you have all the tools in your toolkit to be as successful
as possible. So wonderful. That really like touches me so much as a mom myself. I'm a
(20:16):
mom myself. I'm just like, I completely understand that I as a mom and a patient, I completely
understand that like the idea that being able to do the things that you need to do for other people,
not even just for yourself, but because you are, you have so many responsibilities throughout the
day. That's really great. Well, this has been wonderful. Is there anything that you guys would
(20:39):
like to add or anything that we didn't discuss yet or any other, any other important like one
thing that you want everybody to know about ostomy, whether they have one or not, or whether
they're a patient or not? Is there anything that you guys would like to add? I think the only thing
I would add is to let people know that there are ostomy spet nurse specialists. I'm not sure people
(21:00):
always understand that and we are lucky at U of C. We have a team of them both in the hospital and
in the outpatient setting and not just in the Hyde Park campus. So we really, I think it's
really important that people just as important as the surgeon because the surgeon knows how to make
the stoma. We know how to manage it and that whole team piece is important. Why is it nursing that
(21:26):
is so critical for ostomy care? What is special about nurses? I'm asking two nurses. What is
special about nurses? But I think, I mean, why is it so important? Well, let me comment then maybe
Maria can add as well. I think as nurses, we are kind of head to toe kind of providers. We're putting
(21:47):
all those pieces together. The great thing about U of C is we have many, many specialists and many
of the specialists have different areas that they help to manage. But as nurses, even though we're
nurse specialists, we tend to put the whole piece together. Maria and I worry about what our patients
eat, what gets eliminated, how they feel overall, what's their quality of life, as Marina mentioned
(22:10):
before. So I think as nurses, we tend to pull that whole piece together. We also tend to be that
long term provider as well. We are there for them at all times because we're well aware that as a
person ages or gets more active or changes their profession, they may have other needs that they
need to touch base with us. So being there for them through that entire time they have the
(22:34):
ask to me, I think is one thing that nurses bring to the picture.
Yeah, I think the core of nursing training is looking at the patient as a whole person,
not looking at them as their disease colon or their structured small bowel, but looking at them
as a whole person. You are a woman standing in front of me, you are a mom, you are a professional,
and you happen to have Crohn's disease, not Crohn's disease being the first part of that
(22:58):
sentence. Using the first in person language, but also first in person approach is really
important. And looking really at the interdisciplinary care model. I think as nursing, we really look
at what's the surgical piece, what's the medical piece, what's what we call the nursing piece or
the stoma management piece, but then also looking at the other amazing resources we have here of,
we have a really robust dietitian team, nutrition team, as well as being lucky enough to have a
(23:24):
GI psychologist on staff who can help with a lot of the things that our patients go through and can
help support us in our quest to give them really comprehensive care. And oftentimes, I find us
as kind of like the quarterback. So we're looking at, we're seeing the patient every month, every
couple months for whatever reason, and then saying, I think it's time for you to go back and talk with
(23:46):
the surgeon, or I think it's time for you to go back and talk with your attending physician,
or perhaps this is a good time for us to plug into GI psychology. And kind of using that as
just the touch point for the patient. They've got enough to consider in their lives that they've
got one person as that touch point. It's helpful for their management. Absolutely. Definitely the
quarterbacks. That's what we should be calling you always, our advanced practice providers,
(24:09):
that is exactly what they are. That is so true. Oh, Marita, I'm so, we're so lucky to have both
of you. I am just, I'm thrilled. Thank you guys. I know you are both extremely busy, and I thank
you both for taking the time to talk with me today. And I look forward to sharing even more
with our audiences as we get more into this podcast. So thank you guys both so much,
(24:32):
Jan and Marita. Thank you for having us. Thank you for listening to the podcast,
Visceral, from the GI Research Foundation. This episode was written, produced and edited by me,
Anna Gomberg, and mixed by the incredible Mike Collins-Dowdy, who also composed our theme music.
We hope you'll join us next time and rate, like, or subscribe wherever you find your podcast.
Until then, visit the GI Research Foundation at gurf.org, that's G-I-R-F.org, to learn more
(24:59):
about how to support the research that treats, cures, and prevents digestive diseases.
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