Latest / Crohn's & Colitis Unfiltered / From high school to the hospital: Kinsey's life with a J-pouch

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From high school to the hospital: Kinsey's life with a J-pouch · Crohn's & Colitis Unfiltered

• 0:04
  I would say IBD has definitely made me a more
• 0:08
  strong, resilient person, and it's helped me
• 0:10
  have more empathy for others. I have learned
• 0:14
  that I can do hard things. I tell myself that
• 0:17
  all the time. That's kind of my mantra. If I
• 0:20
  tell myself I can do hard things and then I do
• 0:22
  whatever it is I need to get done, it gives me
• 0:24
  more of a sense of accomplishment. So that has
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  been very helpful for me. But it has helped me
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  learn how to advocate for myself and advocate
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  for others as well. This is Kinsey, who got diagnosed
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  with ulcerative colitis at age 15 in Saratoga
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  Springs, Utah. It took a little over a year for
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  Kinsey to get clarity about the war that was
• 0:47
  raging inside her gut. And just a few years later,
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  she lost her colon to surgery. Today, she tells
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  us all about her IBD journey, from living with
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  a J -pouch, to using sarcasm as a means to raise
• 1:00
  awareness. This is Talking S***, presented by
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  Colitis Unfiltered. My name is Frank Tabering,
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  and Kinsey, welcome to the show. Thank you for
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  having me. Well, it's a pleasure to talk to you
• 1:12
  today. And what I usually like to do is start
• 1:15
  off by setting the context of your IBD journey.
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  So in a few sentences, if you don't mind just
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  telling us... where you got diagnosed, when you
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  got diagnosed, and also how your IBD journey
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  involved until today. Yeah, of course. So when
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  I was 14, my mom did a big move. So we moved
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  about an hour away from where I had grown up
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  for most of my life. And around that same time,
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  I started experiencing like stomach pain, fatigue,
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  weight loss, bloody stool, that kind of stuff.
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  And I have always been an anxious kid, so they
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  kind of assumed it was anxiety. So between when
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  I first started having symptoms to my actual
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  diagnosis was about a year. When I was 15 years
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  old, they did a colonoscopy, and they saw the
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  colitis, and that is when I got diagnosed. And
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  so when you saw a doctor for the first time,
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  did they not inquire any further? They said like
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  they just said it was anxiety and nobody was
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  sort of like interested in figuring out exactly
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  why you had, let's say, you know, the diarrhea
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  and the typical symptoms of colitis. Yeah. So
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  I saw like a primary care pediatrician and they
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  saw with my history of anxiety and with the big
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  life changes, they assumed it was that. And the
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  actual bloody stool didn't start happening towards
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  the end of that year mark. And so when you got
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  diagnosed with colitis, had you ever heard of
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  the term before? Was it completely new? Did your
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  doctor explain what it was and what went through
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  your mind at that stage? So I have a family history.
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  My aunt had ulcerative colitis and then my dad
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  has at least two cousins with Crohn's that he
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  knows of. So I did have a pretty good understanding
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  of what it was. My aunt actually, when I first
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  started getting sick, she was like, I think it
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  might be colitis, but it did take a while to
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  get the diagnosis. And then I remember, I think
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  my doctor gave me like a pamphlet or something
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  of like, this is what it is. I don't remember
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  that much of him like actually explaining what
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  it is, but I also was still like coming out of
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  anesthesia. So I'm not sure. And so having a
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  family history of IBD, did it scare you? to be
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  diagnosed with colitis as well? Or did you feel
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  like you were potentially better prepared for
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  life with the disease? I did feel a little scared
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  to be diagnosed with it because I had a very
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  basic oh I think it's where people just use the
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  bathroom a lot I didn't really understand what
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  all it entailed I remember that like my parents
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  and my aunt were actually more upset about it
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  than I was and I think that's just because they
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  kind of knew more about what it was once I figured
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  out what it was I definitely had like a morning
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  period where I was a little bit like bummed about
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  it And so from the moment that you were diagnosed
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  to today, how did your journey with colitis evolve?
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  Take us a little bit about what happened, you
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  know, since diagnosis to today. Yeah, so they
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  pretty quickly started me on Remicator and Fleximab.
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  And I was on that for about a year and a half.
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  And then I started having like breakthrough flare
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  -ups and the efficacy of the drug started working
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  less and less. And towards the end of the Remicade,
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  I ended up getting admitted for a couple of days
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  for a flare up. And they did a scope and they
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  saw that I had a lot of active disease. So they
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  decided it wasn't working anymore. And so at
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  that point, they decided to switch me to Stelara.
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  So I was on Stelara for a little bit, and then
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  after the Stelara, I went through a phase where
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  I would try medication for a couple of months,
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  and then it would stop working. So I was on Stelara,
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  and then I was on Intivio, and then I did Renvoque,
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  and then I did Valsipedi, and by then I had already
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  filled like five or six drugs within three years.
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  And I still had active inflammation even being
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  on prednisone and biologics. So they decided
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  that it was time to do a total colectomy and
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  get a J -pouch. So I had that done in August
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  of last year, which was originally the three
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  -part surgery, which was supposed to take place
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  over the course of about nine months. But due
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  to being on long -term prednisone, I didn't heal
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  well from the surgeries. I had all three parts
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  of my surgery in three months. And then I had
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  two additional surgeries where I got a JP drain
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  placed and that got infected. So then I got a
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  wound vac placed. And then it took me a while
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  to kind of heal from that. And then now I am
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  on Zeldjantz to treat. I have cuffitis, so I'm
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  trying to treat that. But I haven't had any major
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  surgeries for a while. That's kind of where I'm
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  at now. Right. Yeah, that's quite the journey.
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  And so when you had the surgery, you were how
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  old? 18. 18. So between diagnosis and surgery,
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  basically three years elapsed, right? Yeah. Tell
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  me a little bit about living with colitis for
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  three years, especially during an age that is
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  kind of crucial, right? I mean, you were young.
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  And as young people during those teenage years,
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  we're used to doing different things than suffering
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  typically, right? So I'm interested to hear how
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  you navigated that, especially also being around
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  other kids that most likely didn't really understand
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  what you're going through, right? Yeah. So that
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  was basically throughout high school, that time
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  frame. I would have good times and bad times,
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  like times where my medication had it somewhat
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  controlled. fully gotten to remission but and
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  then I'd have like flare times I did have a 504
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  plan in place that helps teachers and staff kind
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  of understand what was going on and I'm a pretty
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  open book so all my close friends did know about
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  my disease and they were also pretty understanding
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  they didn't like understand in depth what the
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  disease was, but they did understand that I might
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  be a little bit more tired than other teenagers
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  my age. I may need to stay close to a bathroom,
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  that kind of stuff. So I think I had a pretty
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  good support system, which really helped me get
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  through it. And so now that you've had the surgeries,
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  how are you feeling today? I have my good days
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  and my bad days for sure. I'd say with the chronic
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  coughitis, That has been a little bit of a struggle
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  to get that figured out. I was on Intivio for
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  a couple months earlier this year, and that didn't,
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  that stopped working. So I'm still in the phase
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  of Zell Jantz where we're waiting to see if it
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  will work or not. I just started it not too long
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  ago. So I do struggle with a lot of chronic fatigue.
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  I definitely am a napper. That has been a little
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  bit difficult to navigate just because I am a
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  college student and I work as well. So I was
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  just struggling to get that. But I'd say I feel
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  well enough to get through the day. Typically,
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  when I speak to IBD patients who've had surgeries,
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  the consensus is that surgery has really given
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  them their life back. And even though the struggles
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  continue with IBD because it's not necessarily
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  a cure either, They do feel better. They do get
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  to enjoy life more. Does the same thing apply
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  to you? I would say I have ups and downs when
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  I can get my cathitis under control. I definitely
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  do have, I do feel like it did give me my life
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  back. But when I'm dealing with like active flares
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  of cathitis, I do struggle a little bit more.
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  I would say I don't struggle as badly as I did
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  before having the surgery. So in a sense. Yes,
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  it was helpful for me. And my goal is to eventually
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  get to that point where I'm like, it fully gave
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  me my life back. But you're not there yet. Not
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  quite, but I'll get there. Yeah, you'll absolutely
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  get there, 100%. Now, throughout your journey,
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  Did you have like one specialist, one gastroenterologist
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  that you've worked with over the years? Or did
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  you have several? Because I always think that
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  it's quite important for people with IBD to have
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  a strong relationship with their doctors, right?
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  How was that for you navigating to treatments,
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  failing treatments, surgery? Did you have that
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  kind of a specialist? And what is your relationship
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  with your doctor today? Yeah. So when I first
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  got diagnosed, I saw a pediatric gastroenterologist
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  and I saw him for about two years. And once I
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  failed Remicade, well, let me rephrase, when
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  Remicade failed me, because IBD patients, we
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  don't fail our meds, they fail us. But once Remicade
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  stopped working, he was like, well. I can either
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  do surgery or we can refer you to somebody else.
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  I'm not sure what to do with you anymore. So
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  I got, yeah, I got referred to a complex IBD
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  center, which I still go to. It's still pediatric,
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  but now I have a full team that helps me. I have
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  my gastroenterologist. I have a colorectal NP,
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  a colorectal surgeon, dietitian, social worker,
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  and IBD nurses. So I have a very well -rounded
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  team and I have a very good relationship with
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  my team. And in what ways is your team supporting
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  you as someone who has had surgery, right? Because
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  yes, you're dealing with fatigue, IBD is not
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  over, but not having a colon has its challenges
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  by itself. In what way are they supporting you,
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  educating you, helping you along in that aspect
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  of your condition right now? Um, they're very
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  good about getting back to me quickly, which
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  I appreciate. And they're good at letting me
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  know, like, what could be causing some of my,
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  like, symptoms that I have going on. And I feel
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  like they always are there for me to answer questions,
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  even if I think, like, oh, my God, I don't know
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  if I want to ask that. That's kind of a silly
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  question. They always answer and don't make me
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  feel like it's a dumb question. So they've been
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  very supportive in that sense. I have a good
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  relationship with my team. I feel like they care
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  about me as a person and not just a patient.
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  And they care more than just my IBD. They care
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  about every aspect of my life. And I've really
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  appreciated that from them. Yeah, that's great
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  to have. So we talked about this already. You
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  were quite young when you were diagnosed. You're
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  still young, but... You've been on this journey
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  for enough years to at least see your life change.
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  If you look back at IBD specifically, the colitis,
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  the surgeries, how has this changed you as a
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  person, do you think? I would say IBD has definitely
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  made me a more strong, resilient person, and
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  it's helped me have more empathy for others.
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  I have learned that I can do hard things. I tell
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  myself that. All the time, that's kind of my
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  mantra. If I tell myself I can do hard things
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  and then I do whatever it is I need to get done,
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  it gives me more of a sense of accomplishment.
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  So that has been very helpful for me. But it
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  has helped me learn how to advocate for myself
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  and advocate for others as well. And so where
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  do you take the courage from to sort of keep
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  fighting? I would love to become an IBD nurse
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  practitioner someday and be able to help other
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  people who have dealt with similar things that
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  I have dealt with. So remembering my why has
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  been very helpful for me. Why do I want to get
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  out of bed? Why am I going to work? Why am I
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  showing up to school? If I remember my why, then
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  that is what has helped me continue to show up
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  every day for things. And you mentioned earlier
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  that you were pretty open about your disease
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  with your friends, right, with your family. And
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  you and I, we connected on Instagram, and I think
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  you're a pretty open person on there as well,
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  on TikTok as well. So what would your message
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  be to young people that are going through a similar
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  journey than you have, especially sort of, you
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  know, facing surgeries or just having surgeries,
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  what would you tell them to, especially when
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  they're afraid, right? Because when I speak to
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  people and the word surgery pops up, fear is
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  the first thing that pops into their minds, right?
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  This uncertainty. So as somebody who's went through
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  this, what's your message to those people? I
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  would tell them that it's going to be okay. You
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  are stronger than you think and give yourself
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  credit for. We can't obviously choose to have
• 15:11
  the surgery, but we can choose how we respond
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  to these situations that arise in our lives.
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  We can either go through it with a negative,
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  pessimistic attitude, which there is a time and
• 15:24
  place for that. I definitely am not positive
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  all the time. I have my moments. But I feel like
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  you can either be sick and negative or sick and
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  positive, and one feels a lot better than the
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  other. It's easy to be scared for getting surgeries
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  and stuff like that, and that's totally understandable
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  to feel that way. But if you think about it,
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  nobody can predict what's going to happen in
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  their lives. So kind of sitting around and thinking,
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  when's my next flare, when's my next surgery,
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  that kind of stuff, you can kind of scare yourself
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  into a spiral. But if you just think about nobody
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  knows what's happening and nobody knows what's
• 16:02
  going to happen in their future as well, it kind
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  of helps. Looking at the content that you produce,
• 16:07
  most of it is tied to, we can say, a specific
• 16:11
  sense of humor, right? Is that something that
• 16:15
  you developed over the years, or have you always
• 16:17
  been the kind of person with a little bit more
• 16:19
  of a dry sense of humor? I would definitely say
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  I've always kind of had a dry sense of humor.
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  That's very much how my family is. We joke with
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  each other all the time. We're sarcastic, that
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  kind of stuff. And using humor to cope and like...
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  tough situations has proven to be very helpful
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  for myself and i hope that it can help other
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  people relate to situations i try to post things
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  that i hope one person will relate to and think
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  oh at least i'm not the only one that feels like
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  that so that's kind of my my goal with posting
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  content sarcasm i can definitely relate to that
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  so that's why that's why you know your content
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  speaks to me pretty easily so you you say that
• 17:01
  this Sense of humor is present in your family
• 17:05
  as well. Because you went through this during
• 17:10
  a crucial period, the teenage years essentially,
• 17:12
  looking back, do you feel that your family and
• 17:17
  also with the history of IBD, did they baby you
• 17:21
  through this in a sense? Or what was the type
• 17:26
  of support like that they gave you? I would definitely
• 17:31
  say they did not baby me. We have a lot of family
• 17:35
  history of different autoimmune diseases and
• 17:38
  kind of think of it like everyone has their thing
• 17:41
  that they struggle with. They were there to support
• 17:45
  me, like going to appointments with me or...
• 17:49
  when I wanted like needed a down day like watching
• 17:52
  movies with me that kind of stuff they've been
• 17:55
  very supportive in that aspect and I'd say with
• 18:00
  talking about my symptoms and how I feel and
• 18:03
  stuff I ironically most of the time keep it to
• 18:07
  myself except for social media I also see a therapist
• 18:12
  as well which has been very helpful for me but
• 18:16
  I don't love to I don't know, like complain about
• 18:20
  the way that I'm feeling to my family all the
• 18:24
  time. Cause if I told them every time I didn't
• 18:26
  feel well, that would be all the time every day.
• 18:28
  So I just, I only tell them if it's something
• 18:32
  like pretty, pretty dramatic or big going on.
• 18:37
  And I imagine, so if you have family members
• 18:39
  that are suffering from the same or similar conditions,
• 18:41
  there's sometimes a risk that they, I don't know,
• 18:44
  may look at your symptoms or may look at your
• 18:46
  condition or mood and say, hey, you know, I went
• 18:49
  through this or your aunt went through this.
• 18:50
  So suck it up, right? Toughen up. Did you feel
• 18:54
  any of that as well? Or did they just really
• 18:56
  treat you and your colitis as you are your person
• 18:59
  with your own disease and you're going to go
• 19:01
  through it the way you're going through it? They
• 19:04
  definitely did the second option with that. They
• 19:07
  never told me like to tough it up and stuff.
• 19:10
  I'm the only one in my family who's had surgeries
• 19:12
  for my IBD. So I do talk to my aunt a lot about
• 19:18
  like we complain to each other and it's pretty
• 19:21
  great. And I think it's a good weight event.
• 19:25
  But they definitely don't tell me to like suck
• 19:28
  it up and stuff. They've been really good about
• 19:31
  that. In high school, I'd have days where I'd
• 19:33
  be like, I'm too tired to. go to school and stuff
• 19:38
  like that and they would be like uh we'll try
• 19:40
  to go and see if you can get feeling better so
• 19:43
  they definitely encouraged me to try to do things
• 19:45
  which i do appreciate because if they didn't
• 19:48
  do that i probably would have never gone to school
• 19:49
  so that was good there was like um good gentle
• 19:54
  nudging but never like suck it up energy i guess
• 19:58
  yeah so no no real comparisons but more lifting
• 20:02
  Lifting each other up, right? And facing similar
• 20:05
  challenges. And that's really great. So growing
• 20:11
  up in a family with a lot of autoimmune diseases,
• 20:13
  especially also IBD, according to you, what do
• 20:17
  you think are some major misconceptions about
• 20:20
  colitis or Crohn's out there? One of my biggest
• 20:24
  ones is like IBS and IBD are the same thing.
• 20:29
  They are definitely not the same thing. Another
• 20:31
  one that I have is that some people think Crohn's
• 20:35
  is worse than colitis. And I think that's too
• 20:38
  broad of a statement to make because I think
• 20:40
  IBD affects every individual person differently.
• 20:44
  And there's different severities of both diseases
• 20:48
  with different comorbidities of both diseases.
• 20:51
  So flat out saying one is worse than the other,
• 20:55
  I don't think is an accurate statement to make.
• 20:58
  Those are kind of my two main ones that I have.
• 21:01
  That's a really good one, actually. And then
• 21:03
  I think, if you don't mind me adding, the other
• 21:06
  one is that surgery definitely does not cure
• 21:09
  IBD, right? I mean, you're still resting it in
• 21:14
  a way, even though your life is improving, it's
• 21:18
  not over, the fight. Now, if you go back to being
• 21:25
  15 years old, And you're sitting in a doctor's
• 21:29
  office and he or she just told you that you have
• 21:33
  ulcerative colitis. If you could speak to yourself
• 21:36
  on that day, what would you say? I would just
• 21:42
  say everything's going to be okay and everything's
• 21:46
  going to happen the way it's meant to. Not to
• 21:48
  be too scared and life isn't over, it's just
• 21:52
  starting. And IBD isn't all negative that I got
• 21:57
  a lot of positive things out of IBD. I've gotten
• 22:00
  a lot of connections to other people. I've had
• 22:03
  a lot of personal self -growth. So it's not all
• 22:06
  terrible. I probably tell myself that. And that's
• 22:09
  a really good transition to my next question
• 22:11
  is where you are now, despite your struggles,
• 22:15
  I'm sure that IBD has brought you. these positive
• 22:19
  aspects. Aside from what you just mentioned,
• 22:21
  how else do you think that this disease has made
• 22:23
  you a better person and also has enriched your
• 22:26
  life in a way? It has definitely taught me empathy.
• 22:31
  And I think part of the empathy I've learned
• 22:33
  is also from working on the other side in the
• 22:37
  medical field, realizing a lot of people have
• 22:40
  hidden struggles that they don't talk about.
• 22:42
  And you don't know that they're going through,
• 22:44
  but they are going through it and they still
• 22:46
  show up every day. IBD is an invisible disease
• 22:50
  for the most part. So it can be hard sometimes
• 22:55
  to express the struggles. And I think that's
• 22:59
  part of why like being online is important, at
• 23:03
  least for me to advocate to make IBD a little
• 23:05
  bit more visible. So that would kind of be the
• 23:08
  main things. And that's kind of a hopeful statement.
• 23:12
  And I always like to end the show with a little
• 23:16
  bit of hope. And the question that I would like
• 23:19
  to ask, even though it might be difficult to
• 23:21
  answer, but I still think that everybody sort
• 23:23
  of has their own opinion or their own wishes.
• 23:25
  Do you think that we will see a cure to IBD in
• 23:27
  our lifetime? I definitely hope so. I know the
• 23:32
  Crohn's and Colitis Foundation is doing a lot
• 23:34
  to get towards that. They have a lot of different
• 23:38
  events. They have the Take Steps event, like
• 23:40
  different charities. And I know there's more
• 23:43
  research happening every day. And we're getting
• 23:47
  closer and they're coming out with more and more
• 23:49
  biologics that can put people into more of a
• 23:52
  remission state. So I am hopeful that we will
• 23:56
  see a cure in my lifetime, but I am not 100 %
• 24:00
  sure because there's a lot of other diseases
• 24:02
  that have been looking for cures for a long time
• 24:05
  as well. So I don't know, but I hope so. Yeah,
• 24:09
  science is important, but you mentioned it. I
• 24:11
  think community, community support is equally
• 24:14
  important, especially for the mental aspect of
• 24:16
  those suffering through Crohn's and colitis.
• 24:19
  So Kinsey, thank you so much. This has been a
• 24:23
  great conversation. And the only thing I can
• 24:25
  tell you is, you know, keep fighting and also
• 24:27
  keep bringing that sarcasm to your online content.
• 24:30
  I'm sure there's a lot of other people that just
• 24:31
  besides me out there who appreciate that as well.
• 24:33
  And I wish you nothing but the best on your continuing.
• 24:38
  IBD journey. Thank you. That's it for today's
• 24:42
  episode of Talking S*** presented by Colitis
• 24:45
  Unfiltered. I'm Frank Tabering and if this hit
• 24:48
  home or hit your gut, do us a favor, subscribe
• 24:51
  to the show and follow us at Colitis Unfiltered
• 24:54
  on YouTube, Substack, Instagram, Threads, TikTok
• 24:57
  and Reddit. We'll see you soon for more inspiring
• 25:00
  stories from the bathroom floor.