June 3, 2025 • 40 mins
Jonathan Stewart, co-founder of Evergreen Adventures, a nonprofit focused on connecting the chronic illness community with outdoor activities, shares his journey with type one diabetes, ulcerative colitis, and sarcoidosis. Jonathan emphasizes the importance of staying active despite health challenges, describes the need for planning outdoor adventures, and encourages everyone to find joy in nature, no matter the circumstances.
Concepts discussed on this episode:
- Personal experiences with chronic illnesses, including ulcerative colitis and type one diabetes.
- The journey of misdiagnosis and the challenges of managing chronic conditions.
- The emotional impact of surgical decisions, such as colectomy and living with an ileostomy.
- The importance of community support and advocacy for individuals with chronic illnesses.
- The significance of restroom access and related laws for those with inflammatory bowel disease (IBD).
- The role of outdoor activities in promoting physical and mental well-being for people with chronic conditions.
- The founding and mission of Evergreen Adventures to facilitate outdoor experiences for the chronic illness community.
- The complexities of living with multiple overlapping health conditions.
- The importance of self-advocacy and collaboration with healthcare providers.
- Encouragement to redefine personal adventures and find joy in small moments despite health challenges.
Information on Restroom Access Laws:
- Digital I Can't Wait Card via Bladder and Bowel Support Company
- I Can't Wait Card with membership via the Crohn’s & Colitis Foundation
- This Can’t Wait card via Guts UK Charity
- What is The Restroom Access Act? via United Ostomy Associations of America
- Help Pass a Local Restroom Access Law in Your Community via the Crohn’s & Colitis Foundation
Find Jonathan Stewart and EverGreen Adventures at:
- Web: https://www.egadv
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:05):
I'm Amber Tresca,and this is about IBD, the podcast
that knows that everybody poops.I'm a medical writer and patient
educator who lives with a Jpouch due to ulcerative colitis.
It's my mission to educate peopleliving with Crohn's disease or
ulcerative colitis about theirdisease, and to bring awareness
to the patient journey.Welcome to episode 176.
We know that getting outside andbeing in nature is an important
(00:27):
part of our emotional health,but the IBD can be a real
barrier to getting outdoors.My guest is Jonathan Stewart.
Jonathan and his family enjoybeing outside and they participate
in so many outdoor activities.This is remarkable because Jonathan
was diagnosed with type one diabetesas a child, and ulcerative colitis
and sarcoidosis as an adult.He had connectome surgery in 2022
(00:49):
and lives with an ileostomy.Most recently, he had a pacemaker
placed for cardiac issues.At various points in his life.
Jonathan was told to give up theactivities he loved, like running.
That wasn't an option for him.And these experiences showed him
the many barriers people withchronic illness face when trying
to enjoy outdoor activities.He responded by sounding
(01:09):
Evergreen Adventures,a nonprofit that organizes outdoor
programming and meetups for thechronic illness community.
Jonathan tells us how to shift ourthinking about getting outdoors and
enjoy ourselves outside, no matterwhere we are and our disease journey.
Jonathan, welcome to about IBD.Thanks so much for having me.
I really appreciate it.Oh, it's my pleasure.
(01:32):
So I want to begin with anintroduction.
So I wonder if you would take aminute to tell us a little bit
about yourself.Yeah, I'm Jonathan Stewart, I'm the
co-founder of Evergreen Adventures,a nonprofit based here in Montana.
I started out with my wife a coupleof years ago, and our main focus
is to facilitate connections andadventures for the chronic illness
(01:54):
community. Yeah, which is fantastic.I can't wait to dig into that
and find out more about it.But first off, there's there's a
reason why you started this company,and, uh, I, uh, I think you collect
different conditions. It's like.I. Uh. A connoisseur of sorts.
Only the best ones.Only the best ones for Jonathan.
(02:16):
Yeah. Uh, so.But I want to start with getting an
introduction to how you have foundyour way to forming this company.
Could you tell us more about yourdiagnosis of ulcerative colitis?
And then also what led tocollecting my surgery? Yeah.
So it really started back when Iwas 11, I was diagnosed with
(02:37):
type one diabetes.And so I kind of thought, well,
you're good, right.Like this is you're good on the
medical side.You've you've hit your your mark.
That's enough. That's enough. Yeah.Um, and this is back before, you
know, continuous glucose monitors,insulin pumps were Prescribed,
but not wildly.It was just a different time,
(02:58):
a different thought process overall.Even even to the care provided.
So it was it was difficult tosay the least.
Um, but I, you know,thanks to support from family,
um, and good friends,I was able to do a lot of great
things throughout my life,both personally and athletically,
across the board.However, in my early 20s,
(03:21):
that's where things started.Like so many of you know,
just running to the bathroom.And so, uh, it started as like a
week or two at a time, and itwould go away for maybe a month,
and then another week would start.But so I started doing the circuit,
like so many of us.Well, you're too high strung.
You're too stressed out.Oh, this is your doing.
You need to, uh.You're running too much.
(03:43):
That was another one. Mhm.Just stop running that much.
No, nobody should be running.And, uh,
I just for not only my mentalhealth but also for diabetes care.
Endurance sports were something Ireally enjoyed and really helped
me feel good, so I didn't makesense to me to slow it down.
So fast forward to my late 30s.And, you know, in colonoscopies
(04:07):
throughout my 20s and 30s were allnormal. Nothing really of note.
So it just continued of try Fodmapdiet, try eliminating, you know,
every grain, jump up and downthree times on Wednesdays and
only eat peanut butter.Whatever the the latest and
greatest ideas were, we tried them.And those couple days of running to
(04:32):
the bathroom then turned into a week,turned into two weeks, turned into
a month straight. Two months.So yeah, towards my late 30s,
that's where eventually I wasdiagnosed with colitis.
So all the previous colonoscopiesshowed nothing. Nothing. Just, uh.
Yeah, just Everything's well withinthe range. Nothing abnormal.
(04:55):
Nothing to really concernyourself with.
And that that sort of fueled the, uh.You're doing this to yourself,
which so many of us across the board,whether it's colitis or whether
it's another condition.Um, you're kind of met with.
Well, this is your fault.Uh, your, your you are in this
(05:16):
behavior, whether it be a healthybehavior or not, is causing this.
And so you should really stopthat healthy behavior.
You should, um, you know, stoppingrunning wasn't an option for me.
So it became I was an expert inevery construction site, uh,
public restroom, uh, anywhere.As construction companies started
(05:38):
locking porta potties, it was,please, please don't leave it for me.
I promise I'll take care of yourspace.
Um, so it, um,it really was frustrating because
There were no real answers. And.And we did, in our best faith, try to
manage overall stress and anxiety andother elements of just everyday life.
(06:03):
And nothing seemed to help untilthat that mark where not only did we
find colitis, but then eventually wefound by pure accident sarcoidosis on
top of that, which is typically adisease that just comes and goes.
For many people, it's it's acollection of white blood cells,
(06:23):
kind of as I this is my nondoctor summary.
Um, but my, my doctor andchronic illness um uh benign for
the most part uh, collection ofwhite blood cells kind of clumped
together and they can usuallytraditionally it starts in your
lungs and it impacts your breathing.And uh, for me, that wasn't the case.
(06:47):
I Well developed golf ball sizedlumps on my arms.
And I was consulting with MayoClinic in Rochester at the time
because my colitis was notresponding to any treatment.
We started from the very basicall the way through to infusions.
Um, and nothing was responding.Actually, things were getting worse.
(07:10):
And so a couple weeks in, like Isaid, months turned into I'm going to
the bathroom 20 to 30 times a day andnot obviously not feeling great.
And so finding thankfully, uh,a local provider was unwilling
to just accept, well,this is just how things are.
(07:31):
Uh, they did a biopsy of one ofthe growths and found that it
was sarcoidosis,which perplexed everyone.
It doesn't make a whole lot of sense.Um, it's not in your lungs. It's, um.
Little did we know,it was throughout my colon.
At one point in my heart. My liver.This was all to be found out later.
(07:53):
Mhm. Yeah.So first of all, uh, doctorate in
chronic illness is really valid.And yeah, you know, because you might
know more about well first of all,you know, more about your own body
than anybody else does, but you.And you've probably found this,
that sometimes you know more aboutthe conditions that you're living
(08:15):
with than some of the health careproviders that you're working with.
Absolutely. Absolutely valid.Well, it's in my view,
it's a collaboration.I never and I realized that this
is not the case for everyone.Um, I know, generationally speaking,
um, you know, some some peoplebelieve that the doctors wear the
jacket and they have the white coat.They know what they're doing.
(08:37):
They went to school,listened to everything they say.
But at the end of the day,it's their opinion.
It's it's their interpretationof of what is happening.
And so I gravitate toward providersthat are are collaborators with
me and will hear me out and willdeal with my questions and
manage those questions and helpme work through the treatment.
(08:58):
So if I have a heavy handed,if you will, however you want to
describe a provider that isunwilling or their potential ego
is not able to handle my thoughtprocess or my desire to feel well,
then I find another provider.I realize that's not the case
for everyone.You're you could be limited,
(09:18):
you know, in in Montana,obviously it's a rural setting.
So you have to be very selectivein your providers.
As far as you know, some places it'syou have one provider that will be
able to help treat your condition.Um, we were in a fortunate position
where we were willing to take on,unfortunately, massive amounts of
debt in order for me to travel toplaces like Rochester, uh, to see
(09:42):
the folks at Mayo and other places,but I recognize not everybody is
in that in that situation.So then it becomes what makes
the most sense for you.And I'm not somebody.
Even as a kid, I wasn't focusedon a cure for diabetes.
And I realized that rubs people.Sometimes it has rubbed people
the wrong way.Um, I've never been focused on a
(10:03):
cure. I don't keep track of cures.Progress.
Um, I did at one point, and I.And it kind of bit me mentally.
Um, I had a, I was maybe 13 and I hada provider that was very big on,
you know, as many diabetics havein five years, they'll be a cure.
In five years, we'll have a cure.So I counted down essentially
(10:23):
waiting and realized this is notnot going to happen.
And I'm more focused on how can Ilive a the best day that I can,
how can I get through today anddo what means something to me,
whether that's running,whether that's walking, whether
that's whatever your hobby is or andor your professional life, uh, how
(10:46):
you pay for all the medical goods.How can we live as decent day as
we can?And I'll I'll worry about the
cures another time.But I want to treat what's
happening now.And that was really the press on
eventually treating and managingSarcoid as well as all these
other conditions. Right.I appreciate that, uh, that
(11:10):
perspective. And I agree with it.We have to remember that we can
talk about curing diseases or evenfinding better management options.
You know, which I think youcould say for type one diabetes
has occurred for colitis, too.But at the same time,
(11:32):
we we are all living with theseright now and we have to find a
way to get through the day.So I think it's okay if we leave.
Finding a cure to other peoplewhile we're managing this.
There's only there's just somuch bandwidth that we have.
There's only so much.And so where do you where do you
(11:52):
want to apply it?And and that's really where my
focus is, is as a, as a father,as a spouse, as someone that is
eager to connect with others inthe chronic illness community.
That's where I want my energy going.And then what's left and that
that can go to other places.It's been a long road and it's
(12:16):
continues to be a long road.I'm about two weeks out right now
from having a pacemaker implantedbecause of cardiac ramifications,
most likely due to sarcoid.Um, yet again, I don't really
focus exclusively on the why?Um, but yet again,
I'm grateful that we have themedical devices that we do to help.
(12:41):
Like I said, we went from, uh,you know, roughly 30 times,
no exaggeration, of about 30 timesa day going to the bathroom,
not responding to drugs.And it came to the point of that
decision, Mark of, um, we believethat you're obviously you're colon
doing colonoscopies, looking ateverything is not in good shape.
This will most likely happen atsome point where you will need
(13:05):
either an emergency surgery or asurgery at this point, um,
if that's the route you want to go,if you want to maintain and continue
trying every new med that comes onthe market and give each one six
months to see if it does anything,that's completely up to you.
And I'm I'm grateful for theautonomy that I was given.
Um, I also had an opportunity toto meet with different surgeons.
(13:28):
And, you know, the first one Ijust didn't I didn't connect with.
And the second surgeon came inand he said, look,
I don't want to do the surgery.The last thing I want to do.
However, I believe that you will needthis surgery in a near term fashion.
And I can do this. I can do it.Well, this is what I do.
(13:49):
And here's what recovery looks likefor you. Because I can't dictate.
I can't tell you exactly how it'sgoing to go. But here's my hope.
And every body is different.And I'm going to treat your body
as it's yours.So we're going to be proactive
in our ability to get you backup and moving.
Um, so as soon as he left the room,I knew this this is my person.
(14:10):
Like, this is, this is who I need onmy side in order to, to do this.
So relatively speaking,once we had all the information.
And don't get me wrong, this wasmonths of the next infusion, months
of, okay, let's do these 14 tests.Um, you know, I was I was pooping in
(14:32):
every A box and nail, and we wererunning every test to make sure that
we weren't missing something very,I don't want to say basic, but
something that would be in front ofus and everything just came back to.
No, we don't understand this.We don't understand why.
And yet again, we didn't realize thatnot only was this colitis, but also
(14:53):
sarcoid lurking within my colon.
After the break, Jonathan describeshis struggle to connect with the
diagnosis of ulcerative colitis.
(15:21):
Getting outside with IBD isn'talways easy.
For some reason,our society likes to pretend that
people don't ever go to the bathroom.It is really frustrating when
you love to be outside,but parks and hiking trails
don't have public restrooms.For that reason, I want to make
you aware of restroom access laws.These are sometimes called
alleys law.Named for the teen with IBD who
(15:42):
spearheaded the first restroom accesslaw, which was passed in Illinois.
At the time of this recording in2025, 20 states have passed
restroom access laws.Each state is slightly different,
but in general, these laws meanthat businesses must allow bathroom
access to people who need it,such as those with IBD or other
digestive conditions.Many IBD nonprofits, and even pharma
(16:05):
companies have created small cardsthat explain IBD and the need
for immediate restroom access.These are often called can't
Wait carts.They're meant to be used in an
emergency when restroom accessis being denied.
Restroom access laws aren't wellunderstood or enforced.
I encourage you to research andunderstand the laws where you live
so that you know your rights.If your state doesn't have a
(16:27):
restroom access law, you can helpin getting one passed. past.
I will put more information on theRestroom Access Act and links to
printed and digital Cant Wait cardsin the show notes and on the episode
176 page on my website about IBD.Com. Now back to the show.
(16:50):
So you found the right surgeonfor you and you elected to.
Well,you didnt elect to have a collective.
It was kind of like, this isprobably going to happen one day.
Yeah, but you elected to have anostomy and not go for a J pouch.
(17:12):
Could you talk about that decision?Yeah.
And I'm grateful that we haveoptions. Right.
And it is elective. Right.This isn't this isn't an immediate
life or death by, you know,within the next eight hours.
So therefore, truly,it is an elective surgery.
I, I kind of chuckle with youthough on it of like to your point,
I think probably where you may belaughing as well of like, well,
(17:34):
I'm going to the bathroom 30 timesa day. So how elective is this?
Right. But outside.And also you went through so many
medications which, you know,you told me offline, I mean,
you you said it here too,but really you did go through
everything. So we did.There's no question that it was
the right decision. So yeah.But to to answer your question,
really,I'm grateful that we have options.
(17:55):
For me, I've never been phenomenal,shockingly at healing.
And again, I don't really carewhy some some tell me, well,
you're diabetic.That's that's why I, that's my body.
I don't recover easily fromsurgical procedures or from just
general injuries and illnesses.I'm just my body just takes a
(18:17):
little extra time.So when we looked at it, um,
on on paper and then talked withfolks that have had it, uh,
it just for me, it didn't make sense.It the J pouch surgery did not
make sense from a recovery and asustainment perspective just
because of my body.And little did we know that it
(18:39):
wouldn't have been an option anyway,based on the state of my overall
system and sarcoid.But I knew going into it.
Yeah, I'm going to have a bagattached to me for the rest of
my life, and it's the bestdecision for us as a family.
It's the best decision for me to getback and enjoy a semblance of life.
(19:03):
And while the J pouch wasintriguing and I'm, I'm still
amazed by the the skill and thecapability of of the procedure,
it just didn't make sense for me.Mhm. Yeah. That. Yeah.
And it's so interesting too thatyou found out later about how
much of your colon was affected.Was that basically after the
(19:23):
surgery did they tell you? Wow.We found a whole bunch of stuff
in there. Yeah. Um, so. Yes.So I still, it's, um, like so many of
us, I don't know what people, uh,it's it's interesting what my brain,
uh, recalls what my brain hasretained from the experience.
(19:44):
Um, so I recall waking up andrecovery and seeing Tara,
my wife, kind of chatting,and then immediately looking
down and seeing the bag andrealizing that this is it.
Um, there's literally no going back.Um, and so, yeah, it was, uh,
a couple of days later before weended up leaving Rochester.
(20:07):
Uh, I mean, I was in the hospital,I had some recovery complications and
as, as kind of predicted from me,um, so we spent a fair amount of
time in the hospital.Um, but when the report came back,
it was, uh, I had my rectum removed.Um, so it was my rectum through
to my appendix.Uh, again, not the scientific,
(20:28):
but was riddled with, uh,granulomas as well as obviously the
colitis elements of it as well.So it was, uh,
it was not in good shape.I had several surgeons tell me
he did the right thing.This was, um, this was not, uh,
not ideal to be living, let alonetrying to then piece together,
(20:51):
you know, a J pouch, uh,connection. So it was it was.
I'm grateful to have the mentalitygoing into it, uh, of, you know,
this makes the most sense for me,um, that I wasn't, like, greatly
disappointed, if that makes sense,that, um, that it wasn't.
It also added a little bit ofvalidation to the decision of,
(21:14):
of the elective elected surgery.It was also a little bit
overwhelming of this is life now.This is what we're going to do.
And I've never been ashamed of it.I've never hid it.
Much to the dismay of our teenagedaughter, who, uh, you know,
it's like at a public pool.You know, people are staring.
(21:35):
People are staring at you likethey are. They are they?
That's always my I doubt it.I doubt my joke to her is it's
because I'm so ripped.They're they're looking at my
muscles.Um, and she just shakes her head and,
uh, goes away, but, uh, uh,deals with my jokes. Um, yeah.
Chances are, as I tell her,they're not looking.
(21:56):
And hey, if 1 or 2 are and 1 or2 realize, like, oh, wow,
this isn't, um, this isn't justlike a and I hate to this isn't
a nursing home situation. Yeah.Like that connotation of just
quote old people, um, that there'sa lot of folks, um, you know,
young folks that are ultimatelyhealthier There and or their lives
(22:20):
are saved because of the bag.Yeah, that's that's great.
If they see it on me and maybedo some research on their own,
that's wonderful.But I've never felt an
obligation to push people.I've never felt an obligation to
tell other Austinites.You should feel this way.
Uh, I think that's inappropriate.And I at least for me,
(22:43):
from my standpoint, to tell othershow they should or shouldn't feel.
I've met some estimates that areincredibly embarrassed by their bag.
And and I respect that as muchas the others that want to show
it to everybody. Yeah.Whatever your feelings are about it,
they're valid. Yeah.And we do have to respect one
another's decisions as well.Completely. So yeah.
(23:04):
Valid valid points.I want to ask you about something
that you said to me offline. Yeah.Because I found it so
interesting in the plant whilewe were planning this episode.
And you kind of put words tosomething that I also had,
just this vague swirling in my brain.And you said that you have
(23:26):
relationships with your diseases,but that you find it challenging to
connect with the ulcerative colitis.And I really identified with that.
And but I want you to tell me alittle bit more about what what that
means to you, what you mean by that.Yeah, I appreciate that.
It's so diabetes, right?Like I understood.
(23:50):
I know how it makes me feel whenmy blood sugars and range,
I know how I feel.Thankfully, if it's a little higher,
a little lower.It ebbs and flows based on sort of
my stress. My day to day, like, I.I get to know it.
I understand how it impacts mybody with the colitis.
It felt as though having, as I joke,the ultimate colon cleanse.
(24:12):
Um,it happened very fast in that it was.
And I'm trying to it was roughlytwo years. Three years?
Yeah, three years, I guess.Um, from diagnosis to collecting me.
Okay.Maybe a little less than I might be,
but it doesn't matter.The the fact was,
(24:33):
I got very sick very fast.And we were really trying to again,
try every drug.And it just felt as though, oh,
it's removed now, so it's gone.And obviously that's not the case.
And that's also something that I,I have a difficult time explaining
to people that this wasn't a cure.Um, yeah.
(24:54):
It's I, my body is still, um,I still have a great deal of
joint pain of other issues.Um, my output is incredibly watery.
So now we're going through yetmore work ups to try to figure
out what else is going on.GI tract wise, I have diversion
Colitis and the rectal stuffthat was put together when my,
(25:17):
uh, during surgery.So now it's a matter of, okay,
how long are we going to hang onto this rectal stump?
When is that going to be removed?If it needs to be.
It just never felt like I had atime to connect with colitis.
And even though I in hindsight,and after I mentioned that to you,
I kind of been doing a lot ofreflection on it.
(25:39):
It's it's in existence.It's there. It's here today.
So trying to just, uh,establish that relationship with
it and feel connected.It's it it's almost like I feel
like a frog and it's like, well,I'm not really part of the colitis,
you know, the, the IBD communitybecause I had my colon removed.
(26:02):
Um, and that's completely notthe case. Not true.
And the community as a whole is verywelcoming and very collaborative,
but it just it feels just different.Yeah.
I understand that having a Jpouch similar. Right.
You're part of the community,but you are also part of a slightly
(26:25):
different community as well.And so it is challenging.
And I gotta say,I don't know that I've ever
connected with ulcerative colitiswhen I think back on it. Yeah.
And even with the J pouch,it still seems like it maybe
because it's not visible.But when you see, for instance,
(26:47):
a photo of what a digestive systemis supposed to look like, and then
in your brain you're thinking, butmine doesn't look like that anymore.
Yeah, but it's very hard to putthat together in your brain.
Yeah, that's a good point. It's, um.Yeah, it's, uh,
it certainly is a small segmentof the population. Yeah.
(27:09):
Um, And for whatever reason,we we drew that card. Um. Yeah.
Uh, I don't know.Again, it's not it's obviously not a
cure, but it's right where you don'twant to be. Right. And it's not that.
It's not that it's awful.And it's not that it's terrible.
But ideally, if I could still havea colon, I wouldn't mind that.
(27:30):
Yeah. All right. Agree, agree.So I wonder how much of it to is is.
Yeah.People see it and they're like whoa.
You know that's that's not where Iwant to get to. Oh, of course not.
Yeah. Yeah. Um, and that's okay.I don't, I just, I don't again,
I don't judge, I don't.Um, I'm grateful I'm here.
(27:50):
I'm grateful that I, I have theopportunity to get outside and move.
I'm grateful that I have so manyexperiences that I wouldn't have
had with my colon.It just wasn't in the cards.
And, I mean,we we look back and Having.
We have three kids and dinnertime is important to us,
(28:12):
and it might only be five minuteslong before someone's crying or
someone's yelling at somebody else.Sibling wise. Whatever. It's a zoo.
Uh, however, every dinner I was,I would take a bite of food,
and then I would all of a sudden,my stomach would cramp, and I,
I, I missed a ton of dinners.I missed, like, if you just if I,
(28:33):
if I really think back about allthe things that I missed out on or
the pain and the suffering that Iwent through, this is phenomenal.
Like, this is this is so great.
Coming up, Jonathan tells us aboutEvergreen Adventures and gives advice
on how you can get outside today.
(29:04):
Jonathan, you founded a nonprofitcalled Evergreen Adventures.
I'd love for you to tell me moreabout this group in your vision.
Yeah.So we it was actually a on a run.
So six weeks after surgery,I was mountain biking again
after I collected me,as soon as I was off blood thinners,
(29:25):
I was I was riding again.And it's important movement for
me is is critical.And, uh, for so many others.
Movement becomes very difficultwhether you're regardless of
what you're treating.And so I was really looking for
ways to connect with others anddidn't really.
Didn't really find the rightflavor for me, per se.
(29:49):
Um, so I have a background in thisarea as well as communications
and a few other aspects.And so you'd think I'd I'd have a
plan and I'd do things correctly.And so I didn't. So I. Talked.
To my wife.I think we need to start our own
nonprofit.She's like, great, let's sit down.
We'll come up with a, you know,a five year plan, some fundraising,
(30:11):
and then I'm like, no, the paperworkis filed. We're we're getting going.
So it turns out when when you'rerelatively broke, um, securing
your 501 C3 is a little easier.Um, the powers that be are a
little bit more, uh,apt to approve you, but my wife.
(30:32):
Uh, so Tara came up with the name.Uh, so evergreen trees are very
popular to in in my world.I enjoy being around them,
just looking at them.I drive our kids insane because I.
I love taking photos of them.They're like, dad, how many
pictures of trees do you have?Like. Never enough.
So, uh, but Tara really came upwith the the evergreen,
(30:55):
sort of the capital G for,you know, we're always green.
We're always learning.We're always evolving.
Especially in the realm ofchronic illnesses.
But our push is also not only forthe chronic illness community
from a patient perspective,but also a caregiver.
I think a lot of times it's lostthe impact on people like Tara.
(31:16):
The fact that, um, you know, my myhealth really did cost quite a lot,
both financially and mentally.So how to manage that and
support that?So our vision is,
is to remove as many boundaries aspossible to help people get outside.
We have a a gear loan program wherewhen folks are coming out to visit,
(31:36):
you know, whether it be Yellowstoneor Glacier National Park, um,
they're able to rent, uh, borrowgear and for free and, you know,
packs and tents and other things.It's great to have that program.
We have a fly fishing, uh,element to us.
So we're able to tailor fly fishingexcursions based on people's health,
but we also do remote support aswell.
(31:59):
So we recently just had a an IBDrunning group that we launched,
so we'll have that on areoccurring basis.
Or for folks that are trying tomanage, you know,
enjoyment of running and and IBD.So that's really a passion.
It's something I love doing.I also meet locally with both nursing
(32:21):
students as well as med students tofor the nursing students I show them.
I do a bag change during class and Ishow them what a stoma looks like.
I talk about, you know, skin,how it looks, how it feels,
how to maintain it.And on the medical side,
it's talking to the providers tolet them know that we're not all
(32:42):
just clumped into the same,that we're all individuals.
We all have our own way of managingdiseases, and that I realize that
they're going to be stressed.I realize that they're going to
have very short timelinesallowed to meeting with us.
However, taking a different viewof us as a community and giving
them the perspective of not onlyare we managing the disease,
(33:06):
we're on the phone for hourswith health insurance,
with you name it, and trying toensure that we have what we need.
And so it's um, for many of us,it's a fight, a constant fight,
not only for health but for support.Um, so just giving them a
different perspective.And that's one of my favorite
parts is, is the outreach topatients and caregivers,
(33:27):
but also to the medical community.Jonathan, I think it's really common
for people with chronic illness tothink that they can't do outdoor
activities or they can't participatein sports, and that these things
are just not accessible to them.So I'm wondering if you have any
pointers or advice for peoplethat will help them get outside?
Yeah, I think for for anyone gettingoutside, uh, different adventures,
(33:50):
it requires planning.Now, for us within the chronic
illness community,it just requires a bit more.
Um, so for for me,if I'm going out for.
For a full day, uh, adventure oreven just a couple hours or a
couple of minutes, I usually havean emergency bag change with me.
I have insulin pump supplies.I have food a lot.
(34:13):
I've had several people laugh atme on the trail asking how many
weeks I'm going out for.Um, so I certainly pack, uh,
for the worst case scenario.However, I also recognize and it's
taking me time, but I recognizethe fact that, you know,
an adventure doesn't need to be,you know, a full day and adventure
(34:36):
doesn't need to be X amount of milesaccepting what my body will allow.
So everyone's in a differentposition, you know, place right now.
So if maybe a walk around the blockis the most that you can get to
and enjoy, that's completely fine.Or if it's a matter of just
going out on your patio or orjust sitting in the grass and
(34:59):
reading a book for a few minutesand getting some fresh air.
So I think it's one acceptingthe fact of planning.
And then to I'm still working on it.I'm getting there,
accepting the fact that, oh,it may not be what it once was.
And that's okay.Where we are today is is really
the most important.It's a lesson I'm working on.
(35:20):
I'm getting there.Like I said today, for me it may
be a run of a few miles tomorrow.It may be I can't run because my
body just. It's not in the cards.So I'm going to sit to and enjoy a
little time just relaxing outside.So I think that's the biggest
advice I have is,is find what adventure is to you.
(35:42):
Could be maybe going outside andknitting could be maybe just
going outside taking photos,whatever the the adventure is.
Find something that you enjoy doingand doesn't feel like one more thing
on our plate that we have to manage.And one more thing maybe to make
ourselves feel guilty about.I completely right.
That's such a good point of.It took me a while to realize that
(36:07):
I was I was so I was comparingwhere I was a decade ago.
I was comparing where I was eveneven more of where I used to run
X amount of miles a week.I used to be able to hike X
amount of miles, and it's unfair.It's just it's it's unfair and it's
and it's not it's not helpful either.So I'm really learning to enjoy
(36:33):
what I'm capable of doing andwhat my body's giving me,
and really trying to fight back onthe the constant comparisons of
where I was maybe even an hour ago,let alone ten years.
That's not easy to do.It really is a struggle. So. Yeah.
Um, but I love your outlook on it.And you're so right.
(36:53):
And you know, Jonathan, it's beensuch a pleasure speaking with you.
And also I'm enjoying yoursocial media, so I want to make
sure everybody can find you.Can you tell us where you hang out
on the on the Instagram. Yeah.So it's evergreen underscore
adventures underscore MT have somefun there and and are able to show
(37:15):
some adventures that were on uh,some some fun things.
I mean a lot of times it's just likeany other chronic illness person,
some,some times that aren't exactly fun.
Um, but, uh,it's great to connect with everyone.
It means a great deal to me.Yeah, yeah, I love it.
Um, I want to ask you one more thing.What do you love most about
(37:36):
living in Montana?Access is access to the outdoors.
We can be.We can be without cell service
very quickly.Um, we can, uh, be in the mountains
very again within 15 minutes drive,but also have the creature
(37:56):
comforts of stores and everything.Right? Right here.
Um,it's a it's a beautiful landscape.
And what I've learned, uh,we've been here, uh, going,
I guess six years now.And what I,
what I love are the people.The people are very much do your
thing and I'll do mine.It's a remarkable set of people
(38:22):
that really all, you know, in aworld in a time of disagreements,
it's a group of people that canreally come together on, on a
unifying platform of, of open spacesand connection to the outdoors.
So it's it's a lot of fun andjust just the access, you know,
being able to go for a mountainbike ride from my back door is,
(38:45):
um, I don't take it for granted.Yeah, it sounds fantastic.
Well, thank you so much for speakingwith me and for telling us all of
the different ways that we canthink about getting outdoors.
And I hope everybody takes youradvice to heart.
And even there are days when it's forme personally, it is literally just
(39:05):
going and sitting outside for a fewminutes and getting some sun and,
um, and trying to be okay with thatbecause I can't run like I used to,
and that's okay.It's completely okay. Right?
And just that fresh air alone.I mean, it's it's wonderful.
And I'm grateful to everythingthat you're doing to connect the
chronic illness community and,and provide different stories
(39:28):
and different perspectives.And because there's just no one
right answer.So thanks for everything that
you're doing to help us.Hey, super listener.
Thanks to Jonathan Stewart ofEvergreen Adventures for taking
the time to talk with me abouthis nonprofit and their mission
finds them on Instagram asEvergreen Adventures MT and on
(39:52):
the web at IG adventures.You'll also find Jonathan's blog
there, which goes into far moredetail about his experiences and
his thoughts on being a personwho is medically complex,
who also just wants to go for a run.As always,
links to a written transcript,everyone's social media handles,
and more information on the topicswe discussed is in the show notes
(40:13):
and on my episode 176 page on aboutibd.com. Thanks for listening.
And remember, until next time.I want you to know more about IBD.
About IBD is a production ofMail and Tell Enterprises.
It is edited, written, produced,and directed by me, Amber Tresca.
(40:33):
Mix and sound design is by MacCooney.
Theme music is from Cooney Studio.
I'm Amber Tresca,and this is about IBD, the podcast
that knows that everybody poops.I'm a medical writer and patient
educator who lives with a Jpouch due to ulcerative colitis.
It's my mission to educate peopleliving with Crohn's disease or
ulcerative colitis about theirdisease, and to bring awareness
to the patient journey.Welcome to episode 176.
We know that getting outside andbeing in nature is an important
(00:27):
part of our emotional health,but the IBD can be a real
barrier to getting outdoors.My guest is Jonathan Stewart.
Jonathan and his family enjoybeing outside and they participate
in so many outdoor activities.This is remarkable because Jonathan
was diagnosed with type one diabetesas a child, and ulcerative colitis
and sarcoidosis as an adult.He had connectome surgery in 2022
(00:49):
and lives with an ileostomy.Most recently, he had a pacemaker
placed for cardiac issues.At various points in his life.
Jonathan was told to give up theactivities he loved, like running.
That wasn't an option for him.And these experiences showed him
the many barriers people withchronic illness face when trying
to enjoy outdoor activities.He responded by sounding
(01:09):
Evergreen Adventures,a nonprofit that organizes outdoor
programming and meetups for thechronic illness community.
Jonathan tells us how to shift ourthinking about getting outdoors and
enjoy ourselves outside, no matterwhere we are and our disease journey.
Jonathan, welcome to about IBD.Thanks so much for having me.
I really appreciate it.Oh, it's my pleasure.
(01:32):
So I want to begin with anintroduction.
So I wonder if you would take aminute to tell us a little bit
about yourself.Yeah, I'm Jonathan Stewart, I'm the
co-founder of Evergreen Adventures,a nonprofit based here in Montana.
I started out with my wife a coupleof years ago, and our main focus
is to facilitate connections andadventures for the chronic illness
(01:54):
community. Yeah, which is fantastic.I can't wait to dig into that
and find out more about it.But first off, there's there's a
reason why you started this company,and, uh, I, uh, I think you collect
different conditions. It's like.I. Uh. A connoisseur of sorts.
Only the best ones.Only the best ones for Jonathan.
(02:16):
Yeah. Uh, so.But I want to start with getting an
introduction to how you have foundyour way to forming this company.
Could you tell us more about yourdiagnosis of ulcerative colitis?
And then also what led tocollecting my surgery? Yeah.
So it really started back when Iwas 11, I was diagnosed with
(02:37):
type one diabetes.And so I kind of thought, well,
you're good, right.Like this is you're good on the
medical side.You've you've hit your your mark.
That's enough. That's enough. Yeah.Um, and this is back before, you
know, continuous glucose monitors,insulin pumps were Prescribed,
but not wildly.It was just a different time,
(02:58):
a different thought process overall.Even even to the care provided.
So it was it was difficult tosay the least.
Um, but I, you know,thanks to support from family,
um, and good friends,I was able to do a lot of great
things throughout my life,both personally and athletically,
across the board.However, in my early 20s,
(03:21):
that's where things started.Like so many of you know,
just running to the bathroom.And so, uh, it started as like a
week or two at a time, and itwould go away for maybe a month,
and then another week would start.But so I started doing the circuit,
like so many of us.Well, you're too high strung.
You're too stressed out.Oh, this is your doing.
You need to, uh.You're running too much.
(03:43):
That was another one. Mhm.Just stop running that much.
No, nobody should be running.And, uh,
I just for not only my mentalhealth but also for diabetes care.
Endurance sports were something Ireally enjoyed and really helped
me feel good, so I didn't makesense to me to slow it down.
So fast forward to my late 30s.And, you know, in colonoscopies
(04:07):
throughout my 20s and 30s were allnormal. Nothing really of note.
So it just continued of try Fodmapdiet, try eliminating, you know,
every grain, jump up and downthree times on Wednesdays and
only eat peanut butter.Whatever the the latest and
greatest ideas were, we tried them.And those couple days of running to
(04:32):
the bathroom then turned into a week,turned into two weeks, turned into
a month straight. Two months.So yeah, towards my late 30s,
that's where eventually I wasdiagnosed with colitis.
So all the previous colonoscopiesshowed nothing. Nothing. Just, uh.
Yeah, just Everything's well withinthe range. Nothing abnormal.
(04:55):
Nothing to really concernyourself with.
And that that sort of fueled the, uh.You're doing this to yourself,
which so many of us across the board,whether it's colitis or whether
it's another condition.Um, you're kind of met with.
Well, this is your fault.Uh, your, your you are in this
(05:16):
behavior, whether it be a healthybehavior or not, is causing this.
And so you should really stopthat healthy behavior.
You should, um, you know, stoppingrunning wasn't an option for me.
So it became I was an expert inevery construction site, uh,
public restroom, uh, anywhere.As construction companies started
(05:38):
locking porta potties, it was,please, please don't leave it for me.
I promise I'll take care of yourspace.
Um, so it, um,it really was frustrating because
There were no real answers. And.And we did, in our best faith, try to
manage overall stress and anxiety andother elements of just everyday life.
(06:03):
And nothing seemed to help untilthat that mark where not only did we
find colitis, but then eventually wefound by pure accident sarcoidosis on
top of that, which is typically adisease that just comes and goes.
For many people, it's it's acollection of white blood cells,
(06:23):
kind of as I this is my nondoctor summary.
Um, but my, my doctor andchronic illness um uh benign for
the most part uh, collection ofwhite blood cells kind of clumped
together and they can usuallytraditionally it starts in your
lungs and it impacts your breathing.And uh, for me, that wasn't the case.
(06:47):
I Well developed golf ball sizedlumps on my arms.
And I was consulting with MayoClinic in Rochester at the time
because my colitis was notresponding to any treatment.
We started from the very basicall the way through to infusions.
Um, and nothing was responding.Actually, things were getting worse.
(07:10):
And so a couple weeks in, like Isaid, months turned into I'm going to
the bathroom 20 to 30 times a day andnot obviously not feeling great.
And so finding thankfully, uh,a local provider was unwilling
to just accept, well,this is just how things are.
(07:31):
Uh, they did a biopsy of one ofthe growths and found that it
was sarcoidosis,which perplexed everyone.
It doesn't make a whole lot of sense.Um, it's not in your lungs. It's, um.
Little did we know,it was throughout my colon.
At one point in my heart. My liver.This was all to be found out later.
(07:53):
Mhm. Yeah.So first of all, uh, doctorate in
chronic illness is really valid.And yeah, you know, because you might
know more about well first of all,you know, more about your own body
than anybody else does, but you.And you've probably found this,
that sometimes you know more aboutthe conditions that you're living
(08:15):
with than some of the health careproviders that you're working with.
Absolutely. Absolutely valid.Well, it's in my view,
it's a collaboration.I never and I realized that this
is not the case for everyone.Um, I know, generationally speaking,
um, you know, some some peoplebelieve that the doctors wear the
jacket and they have the white coat.They know what they're doing.
(08:37):
They went to school,listened to everything they say.
But at the end of the day,it's their opinion.
It's it's their interpretationof of what is happening.
And so I gravitate toward providersthat are are collaborators with
me and will hear me out and willdeal with my questions and
manage those questions and helpme work through the treatment.
(08:58):
So if I have a heavy handed,if you will, however you want to
describe a provider that isunwilling or their potential ego
is not able to handle my thoughtprocess or my desire to feel well,
then I find another provider.I realize that's not the case
for everyone.You're you could be limited,
(09:18):
you know, in in Montana,obviously it's a rural setting.
So you have to be very selectivein your providers.
As far as you know, some places it'syou have one provider that will be
able to help treat your condition.Um, we were in a fortunate position
where we were willing to take on,unfortunately, massive amounts of
debt in order for me to travel toplaces like Rochester, uh, to see
(09:42):
the folks at Mayo and other places,but I recognize not everybody is
in that in that situation.So then it becomes what makes
the most sense for you.And I'm not somebody.
Even as a kid, I wasn't focusedon a cure for diabetes.
And I realized that rubs people.Sometimes it has rubbed people
the wrong way.Um, I've never been focused on a
(10:03):
cure. I don't keep track of cures.Progress.
Um, I did at one point, and I.And it kind of bit me mentally.
Um, I had a, I was maybe 13 and I hada provider that was very big on,
you know, as many diabetics havein five years, they'll be a cure.
In five years, we'll have a cure.So I counted down essentially
(10:23):
waiting and realized this is notnot going to happen.
And I'm more focused on how can Ilive a the best day that I can,
how can I get through today anddo what means something to me,
whether that's running,whether that's walking, whether
that's whatever your hobby is or andor your professional life, uh, how
(10:46):
you pay for all the medical goods.How can we live as decent day as
we can?And I'll I'll worry about the
cures another time.But I want to treat what's
happening now.And that was really the press on
eventually treating and managingSarcoid as well as all these
other conditions. Right.I appreciate that, uh, that
(11:10):
perspective. And I agree with it.We have to remember that we can
talk about curing diseases or evenfinding better management options.
You know, which I think youcould say for type one diabetes
has occurred for colitis, too.But at the same time,
(11:32):
we we are all living with theseright now and we have to find a
way to get through the day.So I think it's okay if we leave.
Finding a cure to other peoplewhile we're managing this.
There's only there's just somuch bandwidth that we have.
There's only so much.And so where do you where do you
(11:52):
want to apply it?And and that's really where my
focus is, is as a, as a father,as a spouse, as someone that is
eager to connect with others inthe chronic illness community.
That's where I want my energy going.And then what's left and that
that can go to other places.It's been a long road and it's
(12:16):
continues to be a long road.I'm about two weeks out right now
from having a pacemaker implantedbecause of cardiac ramifications,
most likely due to sarcoid.Um, yet again, I don't really
focus exclusively on the why?Um, but yet again,
I'm grateful that we have themedical devices that we do to help.
(12:41):
Like I said, we went from, uh,you know, roughly 30 times,
no exaggeration, of about 30 timesa day going to the bathroom,
not responding to drugs.And it came to the point of that
decision, Mark of, um, we believethat you're obviously you're colon
doing colonoscopies, looking ateverything is not in good shape.
This will most likely happen atsome point where you will need
(13:05):
either an emergency surgery or asurgery at this point, um,
if that's the route you want to go,if you want to maintain and continue
trying every new med that comes onthe market and give each one six
months to see if it does anything,that's completely up to you.
And I'm I'm grateful for theautonomy that I was given.
Um, I also had an opportunity toto meet with different surgeons.
(13:28):
And, you know, the first one Ijust didn't I didn't connect with.
And the second surgeon came inand he said, look,
I don't want to do the surgery.The last thing I want to do.
However, I believe that you will needthis surgery in a near term fashion.
And I can do this. I can do it.Well, this is what I do.
(13:49):
And here's what recovery looks likefor you. Because I can't dictate.
I can't tell you exactly how it'sgoing to go. But here's my hope.
And every body is different.And I'm going to treat your body
as it's yours.So we're going to be proactive
in our ability to get you backup and moving.
Um, so as soon as he left the room,I knew this this is my person.
(14:10):
Like, this is, this is who I need onmy side in order to, to do this.
So relatively speaking,once we had all the information.
And don't get me wrong, this wasmonths of the next infusion, months
of, okay, let's do these 14 tests.Um, you know, I was I was pooping in
(14:32):
every A box and nail, and we wererunning every test to make sure that
we weren't missing something very,I don't want to say basic, but
something that would be in front ofus and everything just came back to.
No, we don't understand this.We don't understand why.
And yet again, we didn't realize thatnot only was this colitis, but also
(14:53):
sarcoid lurking within my colon.
After the break, Jonathan describeshis struggle to connect with the
diagnosis of ulcerative colitis.
(15:21):
Getting outside with IBD isn'talways easy.
For some reason,our society likes to pretend that
people don't ever go to the bathroom.It is really frustrating when
you love to be outside,but parks and hiking trails
don't have public restrooms.For that reason, I want to make
you aware of restroom access laws.These are sometimes called
alleys law.Named for the teen with IBD who
(15:42):
spearheaded the first restroom accesslaw, which was passed in Illinois.
At the time of this recording in2025, 20 states have passed
restroom access laws.Each state is slightly different,
but in general, these laws meanthat businesses must allow bathroom
access to people who need it,such as those with IBD or other
digestive conditions.Many IBD nonprofits, and even pharma
(16:05):
companies have created small cardsthat explain IBD and the need
for immediate restroom access.These are often called can't
Wait carts.They're meant to be used in an
emergency when restroom accessis being denied.
Restroom access laws aren't wellunderstood or enforced.
I encourage you to research andunderstand the laws where you live
so that you know your rights.If your state doesn't have a
(16:27):
restroom access law, you can helpin getting one passed. past.
I will put more information on theRestroom Access Act and links to
printed and digital Cant Wait cardsin the show notes and on the episode
176 page on my website about IBD.Com. Now back to the show.
(16:50):
So you found the right surgeonfor you and you elected to.
Well,you didnt elect to have a collective.
It was kind of like, this isprobably going to happen one day.
Yeah, but you elected to have anostomy and not go for a J pouch.
(17:12):
Could you talk about that decision?Yeah.
And I'm grateful that we haveoptions. Right.
And it is elective. Right.This isn't this isn't an immediate
life or death by, you know,within the next eight hours.
So therefore, truly,it is an elective surgery.
I, I kind of chuckle with youthough on it of like to your point,
I think probably where you may belaughing as well of like, well,
(17:34):
I'm going to the bathroom 30 timesa day. So how elective is this?
Right. But outside.And also you went through so many
medications which, you know,you told me offline, I mean,
you you said it here too,but really you did go through
everything. So we did.There's no question that it was
the right decision. So yeah.But to to answer your question,
really,I'm grateful that we have options.
(17:55):
For me, I've never been phenomenal,shockingly at healing.
And again, I don't really carewhy some some tell me, well,
you're diabetic.That's that's why I, that's my body.
I don't recover easily fromsurgical procedures or from just
general injuries and illnesses.I'm just my body just takes a
(18:17):
little extra time.So when we looked at it, um,
on on paper and then talked withfolks that have had it, uh,
it just for me, it didn't make sense.It the J pouch surgery did not
make sense from a recovery and asustainment perspective just
because of my body.And little did we know that it
(18:39):
wouldn't have been an option anyway,based on the state of my overall
system and sarcoid.But I knew going into it.
Yeah, I'm going to have a bagattached to me for the rest of
my life, and it's the bestdecision for us as a family.
It's the best decision for me to getback and enjoy a semblance of life.
(19:03):
And while the J pouch wasintriguing and I'm, I'm still
amazed by the the skill and thecapability of of the procedure,
it just didn't make sense for me.Mhm. Yeah. That. Yeah.
And it's so interesting too thatyou found out later about how
much of your colon was affected.Was that basically after the
(19:23):
surgery did they tell you? Wow.We found a whole bunch of stuff
in there. Yeah. Um, so. Yes.So I still, it's, um, like so many of
us, I don't know what people, uh,it's it's interesting what my brain,
uh, recalls what my brain hasretained from the experience.
(19:44):
Um, so I recall waking up andrecovery and seeing Tara,
my wife, kind of chatting,and then immediately looking
down and seeing the bag andrealizing that this is it.
Um, there's literally no going back.Um, and so, yeah, it was, uh,
a couple of days later before weended up leaving Rochester.
(20:07):
Uh, I mean, I was in the hospital,I had some recovery complications and
as, as kind of predicted from me,um, so we spent a fair amount of
time in the hospital.Um, but when the report came back,
it was, uh, I had my rectum removed.Um, so it was my rectum through
to my appendix.Uh, again, not the scientific,
(20:28):
but was riddled with, uh,granulomas as well as obviously the
colitis elements of it as well.So it was, uh,
it was not in good shape.I had several surgeons tell me
he did the right thing.This was, um, this was not, uh,
not ideal to be living, let alonetrying to then piece together,
(20:51):
you know, a J pouch, uh,connection. So it was it was.
I'm grateful to have the mentalitygoing into it, uh, of, you know,
this makes the most sense for me,um, that I wasn't, like, greatly
disappointed, if that makes sense,that, um, that it wasn't.
It also added a little bit ofvalidation to the decision of,
(21:14):
of the elective elected surgery.It was also a little bit
overwhelming of this is life now.This is what we're going to do.
And I've never been ashamed of it.I've never hid it.
Much to the dismay of our teenagedaughter, who, uh, you know,
it's like at a public pool.You know, people are staring.
(21:35):
People are staring at you likethey are. They are they?
That's always my I doubt it.I doubt my joke to her is it's
because I'm so ripped.They're they're looking at my
muscles.Um, and she just shakes her head and,
uh, goes away, but, uh, uh,deals with my jokes. Um, yeah.
Chances are, as I tell her,they're not looking.
(21:56):
And hey, if 1 or 2 are and 1 or2 realize, like, oh, wow,
this isn't, um, this isn't justlike a and I hate to this isn't
a nursing home situation. Yeah.Like that connotation of just
quote old people, um, that there'sa lot of folks, um, you know,
young folks that are ultimatelyhealthier There and or their lives
(22:20):
are saved because of the bag.Yeah, that's that's great.
If they see it on me and maybedo some research on their own,
that's wonderful.But I've never felt an
obligation to push people.I've never felt an obligation to
tell other Austinites.You should feel this way.
Uh, I think that's inappropriate.And I at least for me,
(22:43):
from my standpoint, to tell othershow they should or shouldn't feel.
I've met some estimates that areincredibly embarrassed by their bag.
And and I respect that as muchas the others that want to show
it to everybody. Yeah.Whatever your feelings are about it,
they're valid. Yeah.And we do have to respect one
another's decisions as well.Completely. So yeah.
(23:04):
Valid valid points.I want to ask you about something
that you said to me offline. Yeah.Because I found it so
interesting in the plant whilewe were planning this episode.
And you kind of put words tosomething that I also had,
just this vague swirling in my brain.And you said that you have
(23:26):
relationships with your diseases,but that you find it challenging to
connect with the ulcerative colitis.And I really identified with that.
And but I want you to tell me alittle bit more about what what that
means to you, what you mean by that.Yeah, I appreciate that.
It's so diabetes, right?Like I understood.
(23:50):
I know how it makes me feel whenmy blood sugars and range,
I know how I feel.Thankfully, if it's a little higher,
a little lower.It ebbs and flows based on sort of
my stress. My day to day, like, I.I get to know it.
I understand how it impacts mybody with the colitis.
It felt as though having, as I joke,the ultimate colon cleanse.
(24:12):
Um,it happened very fast in that it was.
And I'm trying to it was roughlytwo years. Three years?
Yeah, three years, I guess.Um, from diagnosis to collecting me.
Okay.Maybe a little less than I might be,
but it doesn't matter.The the fact was,
(24:33):
I got very sick very fast.And we were really trying to again,
try every drug.And it just felt as though, oh,
it's removed now, so it's gone.And obviously that's not the case.
And that's also something that I,I have a difficult time explaining
to people that this wasn't a cure.Um, yeah.
(24:54):
It's I, my body is still, um,I still have a great deal of
joint pain of other issues.Um, my output is incredibly watery.
So now we're going through yetmore work ups to try to figure
out what else is going on.GI tract wise, I have diversion
Colitis and the rectal stuffthat was put together when my,
(25:17):
uh, during surgery.So now it's a matter of, okay,
how long are we going to hang onto this rectal stump?
When is that going to be removed?If it needs to be.
It just never felt like I had atime to connect with colitis.
And even though I in hindsight,and after I mentioned that to you,
I kind of been doing a lot ofreflection on it.
(25:39):
It's it's in existence.It's there. It's here today.
So trying to just, uh,establish that relationship with
it and feel connected.It's it it's almost like I feel
like a frog and it's like, well,I'm not really part of the colitis,
you know, the, the IBD communitybecause I had my colon removed.
(26:02):
Um, and that's completely notthe case. Not true.
And the community as a whole is verywelcoming and very collaborative,
but it just it feels just different.Yeah.
I understand that having a Jpouch similar. Right.
You're part of the community,but you are also part of a slightly
(26:25):
different community as well.And so it is challenging.
And I gotta say,I don't know that I've ever
connected with ulcerative colitiswhen I think back on it. Yeah.
And even with the J pouch,it still seems like it maybe
because it's not visible.But when you see, for instance,
(26:47):
a photo of what a digestive systemis supposed to look like, and then
in your brain you're thinking, butmine doesn't look like that anymore.
Yeah, but it's very hard to putthat together in your brain.
Yeah, that's a good point. It's, um.Yeah, it's, uh,
it certainly is a small segmentof the population. Yeah.
(27:09):
Um, And for whatever reason,we we drew that card. Um. Yeah.
Uh, I don't know.Again, it's not it's obviously not a
cure, but it's right where you don'twant to be. Right. And it's not that.
It's not that it's awful.And it's not that it's terrible.
But ideally, if I could still havea colon, I wouldn't mind that.
(27:30):
Yeah. All right. Agree, agree.So I wonder how much of it to is is.
Yeah.People see it and they're like whoa.
You know that's that's not where Iwant to get to. Oh, of course not.
Yeah. Yeah. Um, and that's okay.I don't, I just, I don't again,
I don't judge, I don't.Um, I'm grateful I'm here.
(27:50):
I'm grateful that I, I have theopportunity to get outside and move.
I'm grateful that I have so manyexperiences that I wouldn't have
had with my colon.It just wasn't in the cards.
And, I mean,we we look back and Having.
We have three kids and dinnertime is important to us,
(28:12):
and it might only be five minuteslong before someone's crying or
someone's yelling at somebody else.Sibling wise. Whatever. It's a zoo.
Uh, however, every dinner I was,I would take a bite of food,
and then I would all of a sudden,my stomach would cramp, and I,
I, I missed a ton of dinners.I missed, like, if you just if I,
(28:33):
if I really think back about allthe things that I missed out on or
the pain and the suffering that Iwent through, this is phenomenal.
Like, this is this is so great.
Coming up, Jonathan tells us aboutEvergreen Adventures and gives advice
on how you can get outside today.
(29:04):
Jonathan, you founded a nonprofitcalled Evergreen Adventures.
I'd love for you to tell me moreabout this group in your vision.
Yeah.So we it was actually a on a run.
So six weeks after surgery,I was mountain biking again
after I collected me,as soon as I was off blood thinners,
(29:25):
I was I was riding again.And it's important movement for
me is is critical.And, uh, for so many others.
Movement becomes very difficultwhether you're regardless of
what you're treating.And so I was really looking for
ways to connect with others anddidn't really.
Didn't really find the rightflavor for me, per se.
(29:49):
Um, so I have a background in thisarea as well as communications
and a few other aspects.And so you'd think I'd I'd have a
plan and I'd do things correctly.And so I didn't. So I. Talked.
To my wife.I think we need to start our own
nonprofit.She's like, great, let's sit down.
We'll come up with a, you know,a five year plan, some fundraising,
(30:11):
and then I'm like, no, the paperworkis filed. We're we're getting going.
So it turns out when when you'rerelatively broke, um, securing
your 501 C3 is a little easier.Um, the powers that be are a
little bit more, uh,apt to approve you, but my wife.
(30:32):
Uh, so Tara came up with the name.Uh, so evergreen trees are very
popular to in in my world.I enjoy being around them,
just looking at them.I drive our kids insane because I.
I love taking photos of them.They're like, dad, how many
pictures of trees do you have?Like. Never enough.
So, uh, but Tara really came upwith the the evergreen,
(30:55):
sort of the capital G for,you know, we're always green.
We're always learning.We're always evolving.
Especially in the realm ofchronic illnesses.
But our push is also not only forthe chronic illness community
from a patient perspective,but also a caregiver.
I think a lot of times it's lostthe impact on people like Tara.
(31:16):
The fact that, um, you know, my myhealth really did cost quite a lot,
both financially and mentally.So how to manage that and
support that?So our vision is,
is to remove as many boundaries aspossible to help people get outside.
We have a a gear loan program wherewhen folks are coming out to visit,
(31:36):
you know, whether it be Yellowstoneor Glacier National Park, um,
they're able to rent, uh, borrowgear and for free and, you know,
packs and tents and other things.It's great to have that program.
We have a fly fishing, uh,element to us.
So we're able to tailor fly fishingexcursions based on people's health,
but we also do remote support aswell.
(31:59):
So we recently just had a an IBDrunning group that we launched,
so we'll have that on areoccurring basis.
Or for folks that are trying tomanage, you know,
enjoyment of running and and IBD.So that's really a passion.
It's something I love doing.I also meet locally with both nursing
(32:21):
students as well as med students tofor the nursing students I show them.
I do a bag change during class and Ishow them what a stoma looks like.
I talk about, you know, skin,how it looks, how it feels,
how to maintain it.And on the medical side,
it's talking to the providers tolet them know that we're not all
(32:42):
just clumped into the same,that we're all individuals.
We all have our own way of managingdiseases, and that I realize that
they're going to be stressed.I realize that they're going to
have very short timelinesallowed to meeting with us.
However, taking a different viewof us as a community and giving
them the perspective of not onlyare we managing the disease,
(33:06):
we're on the phone for hourswith health insurance,
with you name it, and trying toensure that we have what we need.
And so it's um, for many of us,it's a fight, a constant fight,
not only for health but for support.Um, so just giving them a
different perspective.And that's one of my favorite
parts is, is the outreach topatients and caregivers,
(33:27):
but also to the medical community.Jonathan, I think it's really common
for people with chronic illness tothink that they can't do outdoor
activities or they can't participatein sports, and that these things
are just not accessible to them.So I'm wondering if you have any
pointers or advice for peoplethat will help them get outside?
Yeah, I think for for anyone gettingoutside, uh, different adventures,
(33:50):
it requires planning.Now, for us within the chronic
illness community,it just requires a bit more.
Um, so for for me,if I'm going out for.
For a full day, uh, adventure oreven just a couple hours or a
couple of minutes, I usually havean emergency bag change with me.
I have insulin pump supplies.I have food a lot.
(34:13):
I've had several people laugh atme on the trail asking how many
weeks I'm going out for.Um, so I certainly pack, uh,
for the worst case scenario.However, I also recognize and it's
taking me time, but I recognizethe fact that, you know,
an adventure doesn't need to be,you know, a full day and adventure
(34:36):
doesn't need to be X amount of milesaccepting what my body will allow.
So everyone's in a differentposition, you know, place right now.
So if maybe a walk around the blockis the most that you can get to
and enjoy, that's completely fine.Or if it's a matter of just
going out on your patio or orjust sitting in the grass and
(34:59):
reading a book for a few minutesand getting some fresh air.
So I think it's one acceptingthe fact of planning.
And then to I'm still working on it.I'm getting there,
accepting the fact that, oh,it may not be what it once was.
And that's okay.Where we are today is is really
the most important.It's a lesson I'm working on.
(35:20):
I'm getting there.Like I said today, for me it may
be a run of a few miles tomorrow.It may be I can't run because my
body just. It's not in the cards.So I'm going to sit to and enjoy a
little time just relaxing outside.So I think that's the biggest
advice I have is,is find what adventure is to you.
(35:42):
Could be maybe going outside andknitting could be maybe just
going outside taking photos,whatever the the adventure is.
Find something that you enjoy doingand doesn't feel like one more thing
on our plate that we have to manage.And one more thing maybe to make
ourselves feel guilty about.I completely right.
That's such a good point of.It took me a while to realize that
(36:07):
I was I was so I was comparingwhere I was a decade ago.
I was comparing where I was eveneven more of where I used to run
X amount of miles a week.I used to be able to hike X
amount of miles, and it's unfair.It's just it's it's unfair and it's
and it's not it's not helpful either.So I'm really learning to enjoy
(36:33):
what I'm capable of doing andwhat my body's giving me,
and really trying to fight back onthe the constant comparisons of
where I was maybe even an hour ago,let alone ten years.
That's not easy to do.It really is a struggle. So. Yeah.
Um, but I love your outlook on it.And you're so right.
(36:53):
And you know, Jonathan, it's beensuch a pleasure speaking with you.
And also I'm enjoying yoursocial media, so I want to make
sure everybody can find you.Can you tell us where you hang out
on the on the Instagram. Yeah.So it's evergreen underscore
adventures underscore MT have somefun there and and are able to show
(37:15):
some adventures that were on uh,some some fun things.
I mean a lot of times it's just likeany other chronic illness person,
some,some times that aren't exactly fun.
Um, but, uh,it's great to connect with everyone.
It means a great deal to me.Yeah, yeah, I love it.
Um, I want to ask you one more thing.What do you love most about
(37:36):
living in Montana?Access is access to the outdoors.
We can be.We can be without cell service
very quickly.Um, we can, uh, be in the mountains
very again within 15 minutes drive,but also have the creature
(37:56):
comforts of stores and everything.Right? Right here.
Um,it's a it's a beautiful landscape.
And what I've learned, uh,we've been here, uh, going,
I guess six years now.And what I,
what I love are the people.The people are very much do your
thing and I'll do mine.It's a remarkable set of people
(38:22):
that really all, you know, in aworld in a time of disagreements,
it's a group of people that canreally come together on, on a
unifying platform of, of open spacesand connection to the outdoors.
So it's it's a lot of fun andjust just the access, you know,
being able to go for a mountainbike ride from my back door is,
(38:45):
um, I don't take it for granted.Yeah, it sounds fantastic.
Well, thank you so much for speakingwith me and for telling us all of
the different ways that we canthink about getting outdoors.
And I hope everybody takes youradvice to heart.
And even there are days when it's forme personally, it is literally just
(39:05):
going and sitting outside for a fewminutes and getting some sun and,
um, and trying to be okay with thatbecause I can't run like I used to,
and that's okay.It's completely okay. Right?
And just that fresh air alone.I mean, it's it's wonderful.
And I'm grateful to everythingthat you're doing to connect the
chronic illness community and,and provide different stories
(39:28):
and different perspectives.And because there's just no one
right answer.So thanks for everything that
you're doing to help us.Hey, super listener.
Thanks to Jonathan Stewart ofEvergreen Adventures for taking
the time to talk with me abouthis nonprofit and their mission
finds them on Instagram asEvergreen Adventures MT and on
(39:52):
the web at IG adventures.You'll also find Jonathan's blog
there, which goes into far moredetail about his experiences and
his thoughts on being a personwho is medically complex,
who also just wants to go for a run.As always,
links to a written transcript,everyone's social media handles,
and more information on the topicswe discussed is in the show notes
(40:13):
and on my episode 176 page on aboutibd.com. Thanks for listening.
And remember, until next time.I want you to know more about IBD.
About IBD is a production ofMail and Tell Enterprises.
It is edited, written, produced,and directed by me, Amber Tresca.
(40:33):
Mix and sound design is by MacCooney.
Theme music is from Cooney Studio.
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