Latest / Crohn's & Colitis Unfiltered / Flares, denial and acceptance: Jaime’s J-Pouch journey

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Flares, denial and acceptance: Jaime’s J-Pouch journey · Crohn's & Colitis Unfiltered

0:02
It made me see how strong and capable I was in
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certain ways. I did find it eventually to become
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empowering. It definitely taught me the importance
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of listening to your body, to your intuition.
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You know, even when you have doctors telling
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you certain things, advocate for yourself. I
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cannot stress that enough. Advocate for yourself.
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Welcome back to Colitis Unfiltered. My name is
0:32
Frank Tabering, and today I have the pleasure
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of speaking with Jamie, who got diagnosed with
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ulcerative colitis at age 25 in Chicago, Illinois.
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Jamie, it's a pleasure to have you on the show
0:42
today. Thank you for having me. So let's dive
0:46
right into it. We're going to talk about colitis
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today, and colitis, well, mostly starts with
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symptoms. Going back for you, at age 25, what
0:57
were the first symptoms that showed up? What
1:00
indicated to you that there was something wrong?
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Well, it's actually kind of a funny story. I
1:06
had every symptom by the book, you know, the
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abdominal pain, diarrhea, just you name it, the
1:15
bloating. If it was on WebMD, I had it. And I
1:20
actually, eight months prior to getting diagnosed,
1:24
I diagnosed myself on my lunch break at work
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and I called my mom and I said, oh, my gosh,
1:29
I think I have ulcerative colitis. And she was
1:32
like, oh, Jamie, like she thought I was being
1:34
dramatic. Right. And and she was like, if you
1:38
actually think that you need to go to the doctor
1:40
and get that looked at. And I was like, yeah,
1:43
no, I'm probably not going to do that because
1:45
what if something's wrong? And then I. Ended
1:51
up getting a really bad reaction on my legs.
1:54
And so they gave me a dose of prednisone where
1:57
it's like, you know, the 5, 4, 3, 2, 1 pack.
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And when I got down to the one, the rash flared
2:04
up again. So they gave me another pack. And then
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I was really good. Like I felt good for months
2:11
after that. And so I never went. I never went
2:16
to the doctor. I later found out that prednisone
2:19
was one of the only medications that worked really
2:22
well for me. So I had a really interesting start
2:26
to what I was feeling and then in a lot of denial
2:31
about. So you're probably the first person that
2:35
I heard who actually self -diagnosed. you know,
2:38
colitis, especially it's a complex disease. At
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least when I was diagnosed, that was the first
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time that I've ever heard of it. And I'm sure
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it was the same for you, but you picked up your
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knowledge from the internet, right? Well, yeah,
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I had never heard of it. I just like typed in
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my symptoms in Google and that came up. I had
2:56
never heard of ulcerative colitis. I had heard
2:57
of Crohn's, but I had never heard of ulcerative
3:00
colitis prior to my WebMD search. And then when
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I actually got diagnosed with it was the first
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time that I really was like, oh, OK. And then,
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you know, started hearing about other people
3:12
having it and learning more about it. But it
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was completely foreign to me initially. And I
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didn't even go to the doctor then. Like I said,
3:21
I. When I took that prednisone, I mean, I felt
3:24
like I was on top of the world again. It was
3:26
just the kick I needed to mask the symptoms at
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the time. And so I had gone to my hometown for
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this little festival, this like Halloween festival
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they have every year. And I was 25 and I just
3:46
turned 25 and hanging out with my friends and
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having fun on Friday night. And felt totally
3:52
fine. And then the next morning, I woke up. And
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I didn't think that I had had that much to drink.
3:58
But I definitely was, you know, cutting up and
4:01
letting loose a little bit. So I thought, oh,
4:03
maybe I did overdo it a little bit. And thought
4:06
I was hungover. And as the day went on, I felt
4:08
worse and worse and worse. And tried to eat.
4:12
And that made me feel even more sick. And so
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I thought, oh, my gosh. must have the flu. I
4:20
was teaching second grade at the time and it
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was end of October. So, you know, we're starting
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to get into cold and flu season and a lot of
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my kids were sick. And so I thought, oh, I must
4:32
have what, you know, what's going around with
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my students. So by about Wednesday, I was like,
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I don't actually think this is the flu. I'm Every
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day I'm feeling worse instead of better. I better
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call the doctor. And so I did. And they did some
4:55
blood work. And of course, my white blood cell
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count was like outrageous. And my doctor said,
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I want you to go and see this GI. And so I had
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to wait almost another week. I finally get into
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the GI and he's an older gentleman and he tells
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me he asked me what my symptoms are and I kind
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of fibbed about them because I was raised very
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like girls don't talk about those things you
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don't share and he said you know your your symptoms
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don't seem real severe but you look like you
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don't feel that well. I think he kind of like
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knew I was embarrassed to be totally honest about
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what was really happening. And he said, you have
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to have a colonoscopy. And I started laughing.
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I was 25 years old. I started laughing. I said,
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no, cancer patients and old men have colonoscopies.
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Not me. I'm young. I'm healthy. And he said,
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well, cancer patients, old men, and you have
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colonoscopies now. I said, okay. So I called
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my parents and told them what was going on. Because
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of course, they're worried sick. They live like
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five hours away from me at the time. My mother's
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really worried. What's going on with you? So
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they came up because I needed a driver for my
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colonoscopy, my first of many colonoscopies.
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And I had a huge phobia of needles at the time,
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like a full -on panic attack getting my first
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IV, which is important too, a little later. And,
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you know, my dad's upset watching this all go
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down. He starts to get choked up. He has to leave.
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My mom like puts on the mother warrior face,
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you know, like you just have to do this. You
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have to get through this. We have to find out
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what's going on. So I have my colonoscopy and
6:47
my doctor, my GI comes out and he tells me, I
6:52
don't know how you've been living like this.
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You are the worst I have ever seen undiagnosed
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in my entire career. It is the the damage from
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the ulcerative colitis is all the way through
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your entire colon already. And he slid a Valium
7:09
script across the table to me. He said, get this
7:16
filled. You're going to need it because you have
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a lot more needles coming your way because you
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witnessed my IV meltdown. Now I can take a shot,
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get an IV with no problems. I've come a long
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way, but. You know, that was like my biggest
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medical fear at the time, which is just so hysterical
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to me now because I've been through so much and
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I've had so much trauma since that it's just
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like, you know, I look at myself like, oh, that
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poor girl, you know, she had no idea, no idea
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what was coming in the next year. But yeah, that's
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how it started. And it just got a little crazier
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from there. That's great. And we're going to
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get to that there. I got to tell you, it's been
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12 years now that I've been diagnosed. I was
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29. But still to this day, I can't with the needles.
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So I still load up on glucose every infusion
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I have for my biologics just to make sure my
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body doesn't trick me into want to faint. And
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so I can definitely relate to that part. Obviously,
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by the time you saw this GI and by the time you
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got officially diagnosed, at least you heard
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of colitis at that point. But hearing an unofficial
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diagnosis, hearing somebody say that the condition
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of your intestines is very dramatic, for the
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lack of a better word, what went through your
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mind when he said that? In one sense, I was relieved
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that I had a diagnosis and a care plan set in
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place. I'm very like results driven, but I was
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probably in a little bit of denial slash didn't
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fully understand what was coming or what that
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meant for me. I didn't fully understand how sick
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I was. I don't even know if I processed how truly
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sick I was until well after. I was, I would say
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like through it, like after my surgeries and
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stuff, you know, and, and I remember multiple
9:26
people telling me like, well, at least you don't
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have cancer. You know, it's like, well, yeah,
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I mean, you're comparing apples and oranges here
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a little bit, you know, it's like, that was always
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like a confusing reaction or response for me.
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And I never knew like, what to say to it, or
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you would get things like, um, oh, wow, I need
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to, you know, I need to get what you have so
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I can lose the last like baby weight or, you
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know, people, people just say these like really
10:01
wild things to you. And, and I think a lot because
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they don't know what to say, but you're trying
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to process what you're going through and understand
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it. And then you have people saying these ridiculous
10:12
things to you, even though they, they mean well.
10:15
It's an interesting place to sit at. Yeah, for
10:19
sure. For sure, for sure. So you kind of gave
10:22
it away. That diagnosis obviously was not the
10:26
end of your IBD journey. You mentioned surgeries.
10:29
That's eventually where you ended up. Can you
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basically take us through the timeline between
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your diagnosis and then where you are today?
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Did your GI start you off with just five ASAs,
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prednisone, biologics? Did he tell you, listen,
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the damage is so bad that we'll have to go to
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surgery right away? What was that path like from
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then to where you ended up surgery? So we're
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into November now. That was October. We're into
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November now. And he said, you know, there's
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this great drug. I'm going to put you on and
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it should work. And it was... azacol and i took
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it for about three days and i thought wow like
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i'm getting so much relief and when i got hospitalized
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it got way worse i was in the hospital for like
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four or five days getting back on my feet and
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feeling good again from the um iv antibiotics
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and um they released me and they put me on lealda
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and Same thing happened. I was on it for like
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three, four days and then got hospitalized again,
11:43
spent Thanksgiving in the hospital. And they
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realized that I probably had a mesalamine allergy
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and the drug wasn't going to work. And they just
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pumped up the prednisone. So the GI issues, actually
12:07
felt, I felt pretty good. And I went on a really
12:10
strict diet and, uh, you know, at one point I
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was up to like 70 milligrams a day or something
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like that of prednisone. It was a lot. So it's
12:18
like, my belly's feeling great, but you're getting
12:20
joint pain. You're not sleeping well. You know,
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my face, I was so thin from being sick, but my
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face looked like you put a pin in and I would
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just like pop like a balloon, you know? And,
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uh, Then I just kept having flares. Then it got
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to a point where the prednisone wasn't really
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working anymore. And my doctor was like, we can't
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put you on more prednisone. You're like maxing
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out at this point. So we started Remicade and
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it was working really well for a while or so
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I thought. And then it seemed like my symptoms
12:57
were starting to flare up again. So along with
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the Remicade, he went old school and prescribed
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me sulfur drugs. around June of that year. And
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I thought I was doing really well. And I had
13:09
gone back home to visit my parents again. And
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I woke up one morning and I called my mom at
13:15
work and I said, you've got to, you have to come
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home. Like something is severely wrong. And my
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parents live in Southern Illinois. So I was about
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five, six hours away from my doctor. So I called
13:27
my, cause there was no way I was going to be
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able to ride in the car for that long. And so
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I called my doctor. I said, you know, I'm six
13:34
hours away. What do I do? And he said, go to
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St. Louis. So we load up in the car. We go there.
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I stayed there for four or five nights. And I
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basically begged them to let me out and let me
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go home because I had been waiting to get into
13:56
this doctor. actually in chicago i was out in
14:00
the suburbs and i had an appointment that i'd
14:01
been calling to try to see this doctor and get
14:04
in and i said i have this appointment coming
14:08
up will you please let me go so that i can go
14:13
to this appointment and they released me from
14:15
the hospital and said yes that's actually a better
14:18
place for you to be if you can get in there that's
14:20
great And so they released me the next day and
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I went straight from the hospital to my doctor
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and told him what was going on. And I got a lovely
14:35
rush hour ambulance ride from my doctor out in
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the suburbs to the hospital in the city that
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I was wanting to, that I was trying to get into
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and was supposed to go to the following week.
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And they admitted me into the hospital. And I
14:56
got a lovely 31 -day stay after that. I got the
14:59
entire month of August and some of September
15:03
in this hospital where I was no longer eating.
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I was being fed by IV. I got my sixth colonoscopy
15:17
in one year. with a nice display you know it
15:21
was a teaching hospital also so I had like six
15:23
med students a fellow the doctor the you know
15:27
had a whole audience for that it was wonderful
15:30
and uh they I got a little bout of c -diff on
15:36
my hospital stay and had an accident getting
15:39
tangled up in my wires trying to get out of bed
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in front of like six people in my room and so
15:45
I had an MRI trying to figure out first make
15:49
sure it's not Crohn's, figure out what to do
15:52
with me. Um, I had during my MRI, they did like
15:56
a whole ink contrast thing and my IV blew out.
15:59
Ink went all over my face and my hair was in
16:02
the tube. Like it was just rough. Yeah. And,
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uh, so my doctor came and talked to me on a Friday
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and he said, These are your options. I'm going
16:19
to think about it over the weekend. One of them
16:23
being cyclosporine or surgery. My doctor said,
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I'm going to think about you over the weekend.
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Let's talk on Monday. So he comes back on Monday.
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He sits down on my bed and he's just the loveliest
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man. gentle, soft -spoken, extremely caring,
16:41
just excellent bedside manner. And he puts his
16:43
hand on my leg as I'm laying there withering
16:46
away. And he says, I've thought about you all
16:50
weekend, nonstop. I just, you know, and I think
16:55
the best option is surgery. And if you want to
16:58
try the other things, I can try to get you into
17:00
a case study. I can, you know, I'll do the cyclosporine
17:04
for you. But I really think that surgery is,
17:07
where we need to go. Sorry, I'm getting a little
17:09
emotional. That was my worst fear and my biggest
17:17
fear come true. Before I had gone to that doctor,
17:20
like when this all started, my sister had gone
17:22
to an appointment with me and with my original
17:25
GI. And we'd gone through like, what's the worst
17:27
case scenario? And of course, at that time, that
17:30
surgery was it. And my sister laughed, just kind
17:33
of. speaking in hyperbole and being silly, said
17:37
to me, oh my God, Jamie, if you end up with a
17:39
bag, you'll never get another date again. And
17:42
of course, we didn't fully understand what that
17:45
was. And she was just kind of being a silly big
17:49
sister or whatever. And we never thought it would
17:51
get to that either. But of course, now I'm laying
17:54
there in that bed and I'm 25 and single and I'm...
17:59
terrified and that's all I can hear is her voice
18:02
in my head and of course when she found out that
18:04
was what was happening she called me she said
18:06
I instantly thought of that and I'm so sorry
18:08
and I didn't mean it and it's not true and you
18:11
know that I think the guilt was pretty high for
18:14
her and Also, I knew the side effects of how
18:18
that could impact like fertility or ability to,
18:21
you know, conceive. And so that's racing through
18:24
my mind at the time. I had always really wanted
18:26
to be a mother. And so it's including all of
18:30
those fears. And my parents at that time were
18:33
taking turns staying in the hospital with me.
18:35
And so my dad was with me that day. After the
18:38
doctor left, he just sat down on my bed. on my
18:44
hospital bed and he said we'll just cry together
18:46
and that's what we did and uh I didn't know that
18:54
day that that was going to be the best thing
18:55
that ever happened to me but it really was it
18:58
it saved my life and it gave me my life back
19:01
um but it was really really scary in the moment
19:05
Yeah, I can imagine. And what a journey, by the
19:08
way. I mean, you basically covered a period of
19:11
one, one and a half years and going through so
19:14
much. It sounds like you were basically on the
19:18
edge nonstop, right? Between periods of feeling
19:20
okay, but then again, landing in the hospital.
19:22
So it was a back and forth. Now, after all of
19:26
this, today, how are you feeling? And, you know,
19:33
I... I think you have a J -pouch now, right?
19:35
So tell me, what is life like with that? And
19:41
how are you feeling? They did it in a three -step
19:44
process because I was so sick. And so in the
19:47
first surgery, they removed my colon and created
19:50
an ileostomy. And so I still had to be really
19:53
careful about what I was eating and letting that
19:55
heal and learning how to take care of my ostomy.
20:00
You know, it's shocking to see your stoma for
20:02
the first few times and all of that. So that
20:05
all happened in that August, September timeframe.
20:07
And then in the following April of 2010, they
20:11
removed the rectum, created a J pouch and a loop
20:15
ostomy. And again, I had to go back to the strict
20:18
diet and letting it heal. But during that time,
20:21
I wasn't taking any medication, just vitamins.
20:25
Just kind of letting my body, focusing on gaining
20:28
weight, letting my body heal and making sure
20:33
that I was strong enough for each step. And a
20:37
lot of doctor's appointments, a lot of tears
20:39
still. And then in July 2010, I had my ostomy
20:43
takedown. And since then, I haven't been on medication
20:48
other than, you know, I've had some. bouts of
20:51
pouchitis here and there and you take antibiotics
20:54
for it but I have really learned my body I've
20:58
learned how to take care of myself and how to
21:01
monitor a lot with diet and it just it's it I
21:08
just keep saying it but it saved my life it gave
21:11
me my life back I I mean I can even eat obviously
21:15
in moderation but salad nuts popcorn doesn't
21:19
bother me like I am just so incredibly lucky
21:24
to wake up most days and feel really good. You
21:30
know, you have to factor in dehydration. That's
21:33
an issue with a pouch. And so monitoring that,
21:37
I was able to have children. I had two. The first
21:41
one, I had to work with a fertility doctor and
21:45
we did four rounds of IUI to conceive him. hormones
21:50
from pregnancy and postpartum definitely have
21:53
had an impact. And I have kind of been in a state
21:56
of chronic inflammation since then with my pouch
22:00
that I'm still currently working through. I just
22:02
had another baby in January. She was a surprise,
22:07
but a wonderful blessing. We just didn't think
22:11
that was an option for us after everything we
22:14
had gone through to conceive our son. you know,
22:19
we're kind of back with the stress that puts
22:23
on your body and the hormone changes and everything
22:25
where, you know, I'm working with my current
22:28
GI on trying to figure out what the best plan
22:32
of action is to, to kind of reel that back in.
22:34
And for pouchitis, we, you know, it's Cipro used
22:39
to be my go -to and that's kind of run its course
22:41
where I started having more negative side effects
22:45
than the the benefits and so we've moved on to
22:49
other things like you know we've done the rectal
22:51
foams and the suppositories and all the other
22:54
fun things and medications that come with um
22:58
the trade -off you know um but we're we're figuring
23:02
it out and i also take a probiotic every day
23:06
um that i have found to be really helpful so
23:11
happy ending More or less, regardless, based
23:14
on what you want. And I want to, before we move
23:17
on, I want to very quickly go back. So a lot
23:19
of people or most people are familiar with ostomy,
23:21
but today you have a J pouch. You and I were
23:25
not doctors, but could you very briefly explain
23:27
to our audience this concept of a J pouch versus
23:32
an ostomy? Sure. So an ostomy is what most people
23:37
are familiar with. It's a bag on the outside
23:39
of your body that you use. for exit, I guess.
23:44
Is that the polite way to say it? And then...
23:49
A J -pouch is basically that internally. So you
23:54
don't have the medical devices and the actual
23:57
physical bag. They take the first part of your
24:00
small bowel and they create what they call a
24:03
J -pouch and essentially create a new rectum
24:08
or reservoir for you. They have to leave a small
24:11
cuff of your rectum because they need something
24:15
to stitch or staple to. then you just learn how
24:21
to reuse your body again, which can be an interesting
24:26
experience. You go traditionally the way you
24:32
would have before having the external bag, but
24:36
you have to change your expectations a bit. It's
24:41
not the way you remember it before you're...
24:45
before your colon is removed but you you know
24:49
a modium can can be your best friend helps and
24:54
just making sure that you're watching your diet
24:58
in different ways than you did with like with
25:01
a uc flare so i had to watch my diet to not um
25:04
irritate the ulcers now i watch my diet to make
25:08
sure that I'm not dehydrating myself and flushing
25:11
my system because you don't have all the things
25:15
in your colon you need to make it make your output
25:19
more formed and you're missing the key bacterias
25:23
and all the good things that are in the colon
25:26
and so it's a lot of carb loading it's a lot
25:31
of It helps to avoid foods that do create more
25:36
gas, drinking through a straw, even though I
25:38
personally choose to still use straws and do
25:42
some of those things, knowing the consequences
25:43
or knowing how to balance it. And a lot of it
25:46
is just learning your body after that. So for
25:50
me, I avoid caffeine because I know that's just
25:54
an unnecessary obstacle for me. Um, but then,
25:59
you know, like I said, I'll have salad or popcorn
26:02
knowing that I might have to balance that out
26:04
a little bit later with eating a sandwich or,
26:07
um, I can't even tell you the, I've probably
26:10
eaten my weight plus some pretzels over the last
26:13
15 years. That's just a really easy, quick go
26:16
-to food or snack for me when I know that I need
26:20
to thicken up output and get myself back on track.
26:27
So a lot of trade -offs. And I think the message
26:31
here is clear because there's a general misconception
26:33
around surgery or on ostomy. And I think also
26:37
Jay Pouch that, hey, they take the colon out
26:40
and I am cured, right? However, in a way, yes,
26:45
but in another way, no. So based on what I'm
26:49
hearing here. Yes, you feel much better. Yes,
26:52
you have had a lot more blessings coming your
26:54
way ever since you've had the surgeries. However,
26:56
your IBD journey does not end there, right? Yeah,
27:00
it's definitely a trade -off, but I would choose
27:03
this compared to how I was living or not living
27:08
prior to surgery every single time. And it's
27:13
just so much about educating yourself and understanding
27:16
your body. learning your cues, knowing how to
27:20
take care of yourself so that it doesn't get
27:23
away from you. And I've, I have personally found
27:25
it to be so much more manageable than what life
27:30
was like with active UC. Now that's not to say
27:33
that there was not a learning curve because there
27:37
definitely was. And it was not an easy transition
27:40
physically or emotionally going through having
27:43
the bag and even transitioning. um from not having
27:49
the external bag anymore and going to the jay
27:52
pouch and like i said learning how to use your
27:54
body again and like being paranoid about not
27:57
having an accident or when i had the bag i would
28:00
constantly ask my friends like i was so insecure
28:03
that i was worried like that you could smell
28:06
it or that you could see it or and also at that
28:11
time there was not the positivity around having
28:15
an ostomy or being open talking about these things
28:19
like there is now like I get on Instagram now
28:21
and I see these girls in their swimsuits and
28:23
these adorable outfits with their bag out and
28:25
I just think like it's so awesome it's so inspiring
28:30
and I just was not in that place and I didn't
28:34
have anyone to look to when I was in that place
28:40
in my journey to like inspire me In connection
28:44
to this, you mentioned that one of the good things
28:47
that came out of this entire ordeal that you
28:50
went through is that you learned a lot more about
28:52
your body, a lot more conscience about your health.
28:56
I always refer to it as a blessing and a curse,
28:59
right? There's bad when we are at our worst,
29:03
and then when we get better, either through surgery,
29:05
through remission, there's a lot of good that
29:08
comes from it. In your case, how do you relate
29:11
to that thought of it being a blessing and a
29:14
curse? And also your journey, how has it changed
29:17
you as a person fundamentally? As far as the
29:22
curse, that's pretty obvious. It's a rough journey.
29:25
So, you know, it's self -explanatory. The blessing,
29:29
though, I think it made me see how strong and
29:32
capable I was in certain ways. I did find it.
29:36
eventually to become empowering. It definitely
29:40
taught me the importance of listening to your
29:43
body, to your intuition. Even when you have doctors
29:48
telling you certain things, advocate for yourself.
29:50
I cannot stress that enough. advocate for yourself
29:55
if you feel something is wrong something is off
29:58
because i had my main doctors i had really incredible
30:01
care but i've met er doctors along the way when
30:04
i've been in you know when i've had a bump along
30:06
the way on a weekend or in the middle of the
30:09
night or whatever you know or an urgent care
30:11
doctor that you advocate for yourself and feel
30:16
strong in your voice and share your story Because
30:21
it's not something to be embarrassed of or feel
30:25
shame about. It's unfortunately a very common
30:29
issue for a lot more people than we realize.
30:33
And I think it's so important that we stick together
30:36
and we support each other. And there's just so
30:41
much healing in that. And I think that's some
30:43
of the blessing is the community that you can
30:47
find in it, that you don't have to suffer alone.
30:50
Absolutely. And you hit the nail on the head.
30:52
This is exactly my main point as well. I always
30:56
say, put your foot down, speak up for yourselves.
31:00
Not every doctor is equal. Not every doctor,
31:04
not even every GI is a colitis, Crohn's or IBD
31:07
specialist. You need somebody who is proactive.
31:10
And if you feel that they're not proactive enough,
31:12
just be relentless. Because somebody out there
31:17
will listen to you. And sometimes it takes a
31:19
little bit of time to sort of be paired or matched
31:21
with that person, that GI that really, you know,
31:24
works in your favor. But I think more commonly
31:29
what I'm seeing is Crohn's and colitis. This
31:31
is not something that you want to lose time over
31:34
because of a lack of productivity from a physician,
31:38
right? I mean, we just don't have that time to
31:41
waste sometimes. So, you know. To paraphrase
31:44
your words, speak up. Absolutely. I think this
31:47
is like one of the most crucial things. Absolutely.
31:49
So you've learned a lot during these turbulent
31:55
years. If you could go back now to when you first
32:00
diagnosed, what are some of the things that you
32:02
wish you had known back then that you've picked
32:05
up along your journey? It's bad or it's hard.
32:11
But it's not as awful or scary as I thought.
32:15
I think especially around the surgery piece.
32:19
To not hide away in my room or feel sorry for
32:25
myself or feel sad. I missed out on opportunities
32:29
with my friends. Maybe I should have gone ahead
32:32
and gone to dinner and just... not eaten or just,
32:37
you know, enjoyed the being with my friends aspect
32:39
of it instead of completely sitting at home alone
32:42
while they were all out making memories together.
32:44
Like don't stop living your life because of it.
32:47
Don't hide away at home. And, you know, sometimes
32:50
we have to hide away at home and we can't go
32:53
too far from the bathroom. And some days are
32:55
just like that and that's okay. But the days
32:58
that are not like that don't continue. to hide
33:01
away. If there's something you want to do, people
33:04
you want to see, memories you want to make, an
33:06
adventure you want to go on, do it. Don't let
33:10
it stop you. It's not a death sentence. You don't
33:15
have to hide away. I wish when I first started
33:21
feeling some of these things and instinctually
33:24
knew that something was off, that I would have
33:28
sought help then. And the journey still would
33:32
have been hard, but maybe it didn't have to be
33:35
as hard as mine was because I was so sick by
33:41
the time that I got diagnosed. Yeah, absolutely.
33:44
Absolutely. There's no shame in heading to the
33:47
doctor or the urgent care or emergency room right
33:50
away. So these are all very valuable tips. And
33:53
thank you for sharing that. One of the reasons
33:56
why I started this podcast is to, first of all,
33:59
raise awareness, but also sort of build out a
34:02
platform for people who have questions, who might
34:05
feel alone, who don't have all the answers, who
34:07
might be embarrassed to ask their doctor, friends
34:10
and family. And you are also doing your part.
34:14
And in your case, you told me you released a
34:18
journal and a guide titled Rooted and Resilient.
34:23
that could be beneficial to people who were recently
34:26
diagnosed. Can you tell us a little bit more
34:29
about Rooted and Resilient, where the idea come
34:31
from and what it is exactly and how it can benefit
34:34
people with IBD? Sure. I always had a goal of
34:39
writing a book. That was the original plan. I
34:42
wanted to write a book kind of like a memoir
34:45
of my journey because I was so lonely going through
34:49
my journey. And at that time, the only thing
34:52
I could find was medical journals, articles.
34:57
And there wasn't anything out there that was
35:00
just like, hey, this sucks. But like there's
35:02
a light at the end of the tunnel. You can do
35:04
this. You can get through this. You're not alone.
35:06
You're not the only one going through it. Just
35:09
that isolation that I felt. And so I did start
35:12
writing a book just kind of as my own therapy.
35:16
And then I decided. I didn't actually want to
35:20
share it because by the time I got to a point
35:22
where I felt like it was potentially ready or
35:26
could be shared, I wasn't that person anymore.
35:29
I had come so far and I had healed so much that
35:33
when I read it, I felt really sorry for that
35:37
girl when I reread it because I had grown so
35:43
much and I had come so far in my journey and
35:47
I felt like she was just a little too sad to
35:52
release on the world, you know? And so I took
35:57
the important pieces of that and instead I shifted
36:00
it and tried to turn it into more of a guide
36:03
and a journal or resource that I wish I had on
36:08
my journey to make it easier. And so, you know,
36:13
there's... some food ideas in there and there's
36:18
a section on if you do end up with an ostomy
36:21
how to hide or dress for it if you're someone
36:24
who is in a place like i was that wasn't ready
36:27
to show it to the world yet and i think that's
36:30
super awesome for the people who do and and i
36:34
i wish that i had that inspiration when i was
36:38
going through it but i also know how i personally
36:41
felt about mine so for anyone who hasn't arrived
36:45
to that boldness and that empowerment yet here
36:49
a little like here's some tips and tricks that
36:52
I found to help me along the way as I was learning
36:55
to to love it and appreciate my ostomy and this
37:00
new version of myself so that's in there and
37:03
then a big chunk of it is the journal section,
37:07
which has a BM tracker on it, a place for you
37:11
to write down your meals and track your medications.
37:16
And I try to include a large mental health piece.
37:19
So a place to write an affirmation every day
37:22
and focus on like, what are you doing for yourself
37:25
to make yourself feel better? Whether that's
37:27
Physically, emotionally, spiritually, what is
37:30
something that triggered you today? Maybe emotionally
37:33
triggered you and caused stress, or maybe it
37:35
was a physical trigger symptom. And then a place
37:38
for what brought you joy today? Because I think
37:40
it's so important to have that gratitude and
37:45
highlight even when you are like, I need to go
37:47
to bed. I need this day to be over. This day
37:50
straight up just sucked. It's very important
37:54
to not get sucked into that. and find the the
37:59
small joys in the day even if it's just that
38:03
you got out of bed today if that is the only
38:07
thing that you were able to accomplish that day
38:11
that's worth celebrating. It's a big deal, you
38:14
know, or you left the house, you went on an errand
38:17
by yourself, depending on where you're at in
38:19
your journey. Or, you know, maybe you went to
38:21
a concert you really wanted to go to, whatever
38:23
it is, that's your joy or your accomplishment
38:27
for that day. I think it's really important to
38:29
highlight that and celebrate that. And that looks
38:32
different for everybody. And that's okay. So
38:34
that's the goal. And I told my friends and family
38:39
when i wrote it that you know if it only reaches
38:42
one person but it helps them then i'm i'm happy
38:45
with that that's exactly the attitude to have
38:48
and i gotta tell you which is which is great
38:52
and i hope it will continue to reach a lot of
38:54
people and i i now hearing you talk about i wish
38:58
I had something like that because when I go back,
39:00
this was in 2013, basically my journal consists
39:04
of just email exchanges between me and my medical
39:07
team and most of them are just very depressing.
39:09
So, you know, so basically my good moments or
39:13
the small wins, the small victories that you
39:15
touched on, I mean, they're luckily stored in
39:18
my memory as best as I can remember them. But
39:20
this is a great initiative. And where can people
39:22
find this, purchase this? It's on Amazon. Well,
39:27
the original and then there's, if you like the
39:29
journal pages, there's a companion guide that's
39:32
really just the journal. There's a little bit
39:35
of other stuff in it, but it's really focused
39:36
on just the journal pages. And it's three months
39:39
instead of one month. So that's not too overwhelming.
39:43
But yeah, they're both listed on there. And please
39:47
go free check them out. I hope that it, I hope
39:50
it helps someone. That's really the goal. Absolutely.
39:54
And we will put the link to both of those editions
39:57
in the show notes as well for ease of use. So
40:00
Jamie, I want to thank you so much for being
40:03
with us today and sharing your journey. I really
40:05
do admire your resilience, especially through
40:09
those years of... you know, hospital stays and
40:13
flares and uncertainty. I wish you nothing but
40:17
the best moving forward with your J -Pouch and
40:20
with your family and all the blessings that you've
40:23
sort of picked up during your journey. And I
40:25
want to just thank you again for being here with
40:29
us today. Thank you. Thank you for having me.
40:32
That's it for today's episode of Colitis Unfiltered.
40:35
I'm Frank Klebring. And if this hit home or hit
40:38
your gut, do us a favor. subscribe to the show
40:41
and follow us at colitis unfiltered on youtube
40:44
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40:48
we'll see you soon for more inspiring stories
40:51
from the bathroom floor