WEBVTT 00:00:04.900 --> 00:00:08.179 I would say IBD has definitely made me a more 00:00:08.179 --> 00:00:10.660 strong, resilient person, and it's helped me 00:00:10.660 --> 00:00:14.500 have more empathy for others. I have learned 00:00:14.500 --> 00:00:17.539 that I can do hard things. I tell myself that 00:00:17.539 --> 00:00:20.320 all the time. That's kind of my mantra. If I 00:00:20.320 --> 00:00:22.739 tell myself I can do hard things and then I do 00:00:22.739 --> 00:00:24.920 whatever it is I need to get done, it gives me 00:00:24.920 --> 00:00:26.719 more of a sense of accomplishment. So that has 00:00:26.719 --> 00:00:30.359 been very helpful for me. But it has helped me 00:00:30.359 --> 00:00:33.320 learn how to advocate for myself and advocate 00:00:33.320 --> 00:00:38.020 for others as well. This is Kinsey, who got diagnosed 00:00:38.020 --> 00:00:41.399 with ulcerative colitis at age 15 in Saratoga 00:00:41.399 --> 00:00:44.840 Springs, Utah. It took a little over a year for 00:00:44.840 --> 00:00:47.240 Kinsey to get clarity about the war that was 00:00:47.240 --> 00:00:50.500 raging inside her gut. And just a few years later, 00:00:50.600 --> 00:00:54.500 she lost her colon to surgery. Today, she tells 00:00:54.500 --> 00:00:57.659 us all about her IBD journey, from living with 00:00:57.659 --> 00:01:00.899 a J -pouch, to using sarcasm as a means to raise 00:01:00.899 --> 00:01:04.359 awareness. This is Talking S***, presented by 00:01:04.359 --> 00:01:07.040 Colitis Unfiltered. My name is Frank Tabering, 00:01:07.060 --> 00:01:10.500 and Kinsey, welcome to the show. Thank you for 00:01:10.500 --> 00:01:12.659 having me. Well, it's a pleasure to talk to you 00:01:12.659 --> 00:01:15.439 today. And what I usually like to do is start 00:01:15.439 --> 00:01:17.980 off by setting the context of your IBD journey. 00:01:18.239 --> 00:01:20.900 So in a few sentences, if you don't mind just 00:01:20.900 --> 00:01:24.640 telling us... where you got diagnosed, when you 00:01:24.640 --> 00:01:27.280 got diagnosed, and also how your IBD journey 00:01:27.280 --> 00:01:31.439 involved until today. Yeah, of course. So when 00:01:31.439 --> 00:01:36.620 I was 14, my mom did a big move. So we moved 00:01:36.620 --> 00:01:38.640 about an hour away from where I had grown up 00:01:38.640 --> 00:01:41.340 for most of my life. And around that same time, 00:01:41.340 --> 00:01:45.340 I started experiencing like stomach pain, fatigue, 00:01:45.540 --> 00:01:49.340 weight loss, bloody stool, that kind of stuff. 00:01:50.060 --> 00:01:54.459 And I have always been an anxious kid, so they 00:01:54.459 --> 00:01:58.359 kind of assumed it was anxiety. So between when 00:01:58.359 --> 00:02:01.859 I first started having symptoms to my actual 00:02:01.859 --> 00:02:05.260 diagnosis was about a year. When I was 15 years 00:02:05.260 --> 00:02:09.900 old, they did a colonoscopy, and they saw the 00:02:09.900 --> 00:02:13.560 colitis, and that is when I got diagnosed. And 00:02:13.560 --> 00:02:16.039 so when you saw a doctor for the first time, 00:02:16.240 --> 00:02:20.389 did they not inquire any further? They said like 00:02:20.389 --> 00:02:23.310 they just said it was anxiety and nobody was 00:02:23.310 --> 00:02:25.150 sort of like interested in figuring out exactly 00:02:25.150 --> 00:02:28.030 why you had, let's say, you know, the diarrhea 00:02:28.030 --> 00:02:31.289 and the typical symptoms of colitis. Yeah. So 00:02:31.289 --> 00:02:35.530 I saw like a primary care pediatrician and they 00:02:35.530 --> 00:02:39.569 saw with my history of anxiety and with the big 00:02:39.569 --> 00:02:43.849 life changes, they assumed it was that. And the 00:02:43.849 --> 00:02:46.250 actual bloody stool didn't start happening towards 00:02:46.250 --> 00:02:50.150 the end of that year mark. And so when you got 00:02:50.150 --> 00:02:55.550 diagnosed with colitis, had you ever heard of 00:02:55.550 --> 00:02:58.210 the term before? Was it completely new? Did your 00:02:58.210 --> 00:03:01.789 doctor explain what it was and what went through 00:03:01.789 --> 00:03:05.830 your mind at that stage? So I have a family history. 00:03:06.050 --> 00:03:10.129 My aunt had ulcerative colitis and then my dad 00:03:10.129 --> 00:03:13.150 has at least two cousins with Crohn's that he 00:03:13.150 --> 00:03:16.569 knows of. So I did have a pretty good understanding 00:03:16.569 --> 00:03:20.810 of what it was. My aunt actually, when I first 00:03:20.810 --> 00:03:22.530 started getting sick, she was like, I think it 00:03:22.530 --> 00:03:25.210 might be colitis, but it did take a while to 00:03:25.210 --> 00:03:28.090 get the diagnosis. And then I remember, I think 00:03:28.090 --> 00:03:31.330 my doctor gave me like a pamphlet or something 00:03:31.330 --> 00:03:35.030 of like, this is what it is. I don't remember 00:03:35.030 --> 00:03:37.069 that much of him like actually explaining what 00:03:37.069 --> 00:03:39.590 it is, but I also was still like coming out of 00:03:39.590 --> 00:03:43.050 anesthesia. So I'm not sure. And so having a 00:03:43.050 --> 00:03:47.430 family history of IBD, did it scare you? to be 00:03:47.430 --> 00:03:49.870 diagnosed with colitis as well? Or did you feel 00:03:49.870 --> 00:03:53.050 like you were potentially better prepared for 00:03:53.050 --> 00:03:57.349 life with the disease? I did feel a little scared 00:03:57.349 --> 00:03:59.990 to be diagnosed with it because I had a very 00:03:59.990 --> 00:04:03.840 basic oh I think it's where people just use the 00:04:03.840 --> 00:04:05.960 bathroom a lot I didn't really understand what 00:04:05.960 --> 00:04:09.560 all it entailed I remember that like my parents 00:04:09.560 --> 00:04:12.659 and my aunt were actually more upset about it 00:04:12.659 --> 00:04:15.199 than I was and I think that's just because they 00:04:15.199 --> 00:04:18.019 kind of knew more about what it was once I figured 00:04:18.019 --> 00:04:20.500 out what it was I definitely had like a morning 00:04:20.500 --> 00:04:24.339 period where I was a little bit like bummed about 00:04:24.339 --> 00:04:27.220 it And so from the moment that you were diagnosed 00:04:27.220 --> 00:04:31.519 to today, how did your journey with colitis evolve? 00:04:31.800 --> 00:04:34.680 Take us a little bit about what happened, you 00:04:34.680 --> 00:04:38.579 know, since diagnosis to today. Yeah, so they 00:04:38.579 --> 00:04:42.019 pretty quickly started me on Remicator and Fleximab. 00:04:42.180 --> 00:04:45.740 And I was on that for about a year and a half. 00:04:45.879 --> 00:04:48.180 And then I started having like breakthrough flare 00:04:48.180 --> 00:04:51.920 -ups and the efficacy of the drug started working 00:04:51.920 --> 00:04:55.500 less and less. And towards the end of the Remicade, 00:04:55.560 --> 00:04:57.860 I ended up getting admitted for a couple of days 00:04:57.860 --> 00:05:01.819 for a flare up. And they did a scope and they 00:05:01.819 --> 00:05:04.259 saw that I had a lot of active disease. So they 00:05:04.259 --> 00:05:07.740 decided it wasn't working anymore. And so at 00:05:07.740 --> 00:05:10.579 that point, they decided to switch me to Stelara. 00:05:11.199 --> 00:05:14.139 So I was on Stelara for a little bit, and then 00:05:14.139 --> 00:05:16.980 after the Stelara, I went through a phase where 00:05:16.980 --> 00:05:19.540 I would try medication for a couple of months, 00:05:19.560 --> 00:05:23.660 and then it would stop working. So I was on Stelara, 00:05:23.800 --> 00:05:28.060 and then I was on Intivio, and then I did Renvoque, 00:05:28.180 --> 00:05:31.740 and then I did Valsipedi, and by then I had already 00:05:31.740 --> 00:05:35.480 filled like five or six drugs within three years. 00:05:36.199 --> 00:05:39.120 And I still had active inflammation even being 00:05:39.120 --> 00:05:42.860 on prednisone and biologics. So they decided 00:05:42.860 --> 00:05:47.180 that it was time to do a total colectomy and 00:05:47.180 --> 00:05:51.279 get a J -pouch. So I had that done in August 00:05:51.279 --> 00:05:55.220 of last year, which was originally the three 00:05:55.220 --> 00:05:58.259 -part surgery, which was supposed to take place 00:05:58.259 --> 00:06:01.500 over the course of about nine months. But due 00:06:01.500 --> 00:06:03.660 to being on long -term prednisone, I didn't heal 00:06:03.660 --> 00:06:08.009 well from the surgeries. I had all three parts 00:06:08.009 --> 00:06:11.689 of my surgery in three months. And then I had 00:06:11.689 --> 00:06:14.810 two additional surgeries where I got a JP drain 00:06:14.810 --> 00:06:17.730 placed and that got infected. So then I got a 00:06:17.730 --> 00:06:21.310 wound vac placed. And then it took me a while 00:06:21.310 --> 00:06:24.810 to kind of heal from that. And then now I am 00:06:24.810 --> 00:06:30.410 on Zeldjantz to treat. I have cuffitis, so I'm 00:06:30.410 --> 00:06:33.550 trying to treat that. But I haven't had any major 00:06:33.550 --> 00:06:37.100 surgeries for a while. That's kind of where I'm 00:06:37.100 --> 00:06:40.000 at now. Right. Yeah, that's quite the journey. 00:06:40.139 --> 00:06:42.779 And so when you had the surgery, you were how 00:06:42.779 --> 00:06:48.399 old? 18. 18. So between diagnosis and surgery, 00:06:48.420 --> 00:06:52.040 basically three years elapsed, right? Yeah. Tell 00:06:52.040 --> 00:06:55.939 me a little bit about living with colitis for 00:06:55.939 --> 00:06:59.120 three years, especially during an age that is 00:06:59.120 --> 00:07:00.620 kind of crucial, right? I mean, you were young. 00:07:01.339 --> 00:07:03.579 And as young people during those teenage years, 00:07:03.860 --> 00:07:07.180 we're used to doing different things than suffering 00:07:07.180 --> 00:07:09.220 typically, right? So I'm interested to hear how 00:07:09.220 --> 00:07:12.259 you navigated that, especially also being around 00:07:12.259 --> 00:07:14.839 other kids that most likely didn't really understand 00:07:14.839 --> 00:07:19.220 what you're going through, right? Yeah. So that 00:07:19.220 --> 00:07:22.779 was basically throughout high school, that time 00:07:22.779 --> 00:07:25.779 frame. I would have good times and bad times, 00:07:25.800 --> 00:07:28.060 like times where my medication had it somewhat 00:07:28.060 --> 00:07:32.019 controlled. fully gotten to remission but and 00:07:32.019 --> 00:07:35.759 then I'd have like flare times I did have a 504 00:07:35.759 --> 00:07:40.899 plan in place that helps teachers and staff kind 00:07:40.899 --> 00:07:44.959 of understand what was going on and I'm a pretty 00:07:44.959 --> 00:07:48.899 open book so all my close friends did know about 00:07:48.899 --> 00:07:52.100 my disease and they were also pretty understanding 00:07:52.100 --> 00:07:56.290 they didn't like understand in depth what the 00:07:56.290 --> 00:07:59.029 disease was, but they did understand that I might 00:07:59.029 --> 00:08:01.189 be a little bit more tired than other teenagers 00:08:01.189 --> 00:08:04.470 my age. I may need to stay close to a bathroom, 00:08:04.589 --> 00:08:07.389 that kind of stuff. So I think I had a pretty 00:08:07.389 --> 00:08:09.709 good support system, which really helped me get 00:08:09.709 --> 00:08:13.050 through it. And so now that you've had the surgeries, 00:08:13.209 --> 00:08:18.610 how are you feeling today? I have my good days 00:08:18.610 --> 00:08:23.490 and my bad days for sure. I'd say with the chronic 00:08:23.490 --> 00:08:26.750 coughitis, That has been a little bit of a struggle 00:08:26.750 --> 00:08:30.269 to get that figured out. I was on Intivio for 00:08:30.269 --> 00:08:34.169 a couple months earlier this year, and that didn't, 00:08:34.169 --> 00:08:37.250 that stopped working. So I'm still in the phase 00:08:37.250 --> 00:08:41.370 of Zell Jantz where we're waiting to see if it 00:08:41.370 --> 00:08:44.450 will work or not. I just started it not too long 00:08:44.450 --> 00:08:50.889 ago. So I do struggle with a lot of chronic fatigue. 00:08:51.029 --> 00:08:54.320 I definitely am a napper. That has been a little 00:08:54.320 --> 00:08:57.399 bit difficult to navigate just because I am a 00:08:57.399 --> 00:08:59.639 college student and I work as well. So I was 00:08:59.639 --> 00:09:05.340 just struggling to get that. But I'd say I feel 00:09:05.340 --> 00:09:08.500 well enough to get through the day. Typically, 00:09:08.799 --> 00:09:11.799 when I speak to IBD patients who've had surgeries, 00:09:12.139 --> 00:09:16.000 the consensus is that surgery has really given 00:09:16.000 --> 00:09:19.740 them their life back. And even though the struggles 00:09:19.740 --> 00:09:21.659 continue with IBD because it's not necessarily 00:09:21.659 --> 00:09:24.860 a cure either, They do feel better. They do get 00:09:24.860 --> 00:09:28.200 to enjoy life more. Does the same thing apply 00:09:28.200 --> 00:09:33.139 to you? I would say I have ups and downs when 00:09:33.139 --> 00:09:36.799 I can get my cathitis under control. I definitely 00:09:36.799 --> 00:09:40.139 do have, I do feel like it did give me my life 00:09:40.139 --> 00:09:43.379 back. But when I'm dealing with like active flares 00:09:43.379 --> 00:09:46.639 of cathitis, I do struggle a little bit more. 00:09:46.779 --> 00:09:49.519 I would say I don't struggle as badly as I did 00:09:49.519 --> 00:09:52.970 before having the surgery. So in a sense. Yes, 00:09:52.970 --> 00:09:56.610 it was helpful for me. And my goal is to eventually 00:09:56.610 --> 00:09:59.649 get to that point where I'm like, it fully gave 00:09:59.649 --> 00:10:04.169 me my life back. But you're not there yet. Not 00:10:04.169 --> 00:10:07.649 quite, but I'll get there. Yeah, you'll absolutely 00:10:07.649 --> 00:10:12.389 get there, 100%. Now, throughout your journey, 00:10:14.279 --> 00:10:17.679 Did you have like one specialist, one gastroenterologist 00:10:17.679 --> 00:10:20.740 that you've worked with over the years? Or did 00:10:20.740 --> 00:10:23.000 you have several? Because I always think that 00:10:23.000 --> 00:10:25.820 it's quite important for people with IBD to have 00:10:25.820 --> 00:10:27.740 a strong relationship with their doctors, right? 00:10:27.879 --> 00:10:32.120 How was that for you navigating to treatments, 00:10:32.539 --> 00:10:35.440 failing treatments, surgery? Did you have that 00:10:35.440 --> 00:10:38.639 kind of a specialist? And what is your relationship 00:10:38.639 --> 00:10:42.070 with your doctor today? Yeah. So when I first 00:10:42.070 --> 00:10:46.450 got diagnosed, I saw a pediatric gastroenterologist 00:10:46.450 --> 00:10:51.870 and I saw him for about two years. And once I 00:10:51.870 --> 00:10:54.929 failed Remicade, well, let me rephrase, when 00:10:54.929 --> 00:10:56.850 Remicade failed me, because IBD patients, we 00:10:56.850 --> 00:11:01.509 don't fail our meds, they fail us. But once Remicade 00:11:01.509 --> 00:11:04.980 stopped working, he was like, well. I can either 00:11:04.980 --> 00:11:07.620 do surgery or we can refer you to somebody else. 00:11:07.679 --> 00:11:10.820 I'm not sure what to do with you anymore. So 00:11:10.820 --> 00:11:15.580 I got, yeah, I got referred to a complex IBD 00:11:15.580 --> 00:11:19.120 center, which I still go to. It's still pediatric, 00:11:19.120 --> 00:11:22.940 but now I have a full team that helps me. I have 00:11:22.940 --> 00:11:26.740 my gastroenterologist. I have a colorectal NP, 00:11:27.019 --> 00:11:30.700 a colorectal surgeon, dietitian, social worker, 00:11:30.840 --> 00:11:35.519 and IBD nurses. So I have a very well -rounded 00:11:35.519 --> 00:11:37.519 team and I have a very good relationship with 00:11:37.519 --> 00:11:41.320 my team. And in what ways is your team supporting 00:11:41.320 --> 00:11:45.000 you as someone who has had surgery, right? Because 00:11:45.000 --> 00:11:48.200 yes, you're dealing with fatigue, IBD is not 00:11:48.200 --> 00:11:52.240 over, but not having a colon has its challenges 00:11:52.240 --> 00:11:55.419 by itself. In what way are they supporting you, 00:11:55.500 --> 00:11:58.519 educating you, helping you along in that aspect 00:11:58.519 --> 00:12:02.149 of your condition right now? Um, they're very 00:12:02.149 --> 00:12:04.549 good about getting back to me quickly, which 00:12:04.549 --> 00:12:09.309 I appreciate. And they're good at letting me 00:12:09.309 --> 00:12:11.549 know, like, what could be causing some of my, 00:12:11.610 --> 00:12:14.490 like, symptoms that I have going on. And I feel 00:12:14.490 --> 00:12:17.470 like they always are there for me to answer questions, 00:12:17.570 --> 00:12:19.789 even if I think, like, oh, my God, I don't know 00:12:19.789 --> 00:12:21.190 if I want to ask that. That's kind of a silly 00:12:21.190 --> 00:12:23.769 question. They always answer and don't make me 00:12:23.769 --> 00:12:27.190 feel like it's a dumb question. So they've been 00:12:27.190 --> 00:12:30.450 very supportive in that sense. I have a good 00:12:30.450 --> 00:12:32.809 relationship with my team. I feel like they care 00:12:32.809 --> 00:12:35.110 about me as a person and not just a patient. 00:12:35.649 --> 00:12:39.970 And they care more than just my IBD. They care 00:12:39.970 --> 00:12:44.750 about every aspect of my life. And I've really 00:12:44.750 --> 00:12:48.230 appreciated that from them. Yeah, that's great 00:12:48.230 --> 00:12:51.110 to have. So we talked about this already. You 00:12:51.110 --> 00:12:53.009 were quite young when you were diagnosed. You're 00:12:53.009 --> 00:12:56.909 still young, but... You've been on this journey 00:12:56.909 --> 00:13:02.330 for enough years to at least see your life change. 00:13:02.750 --> 00:13:05.789 If you look back at IBD specifically, the colitis, 00:13:05.870 --> 00:13:09.649 the surgeries, how has this changed you as a 00:13:09.649 --> 00:13:13.450 person, do you think? I would say IBD has definitely 00:13:13.450 --> 00:13:16.590 made me a more strong, resilient person, and 00:13:16.590 --> 00:13:18.470 it's helped me have more empathy for others. 00:13:19.070 --> 00:13:23.429 I have learned that I can do hard things. I tell 00:13:23.429 --> 00:13:25.919 myself that. All the time, that's kind of my 00:13:25.919 --> 00:13:28.679 mantra. If I tell myself I can do hard things 00:13:28.679 --> 00:13:30.759 and then I do whatever it is I need to get done, 00:13:30.860 --> 00:13:32.679 it gives me more of a sense of accomplishment. 00:13:32.740 --> 00:13:35.840 So that has been very helpful for me. But it 00:13:35.840 --> 00:13:38.899 has helped me learn how to advocate for myself 00:13:38.899 --> 00:13:43.179 and advocate for others as well. And so where 00:13:43.179 --> 00:13:46.440 do you take the courage from to sort of keep 00:13:46.440 --> 00:13:51.080 fighting? I would love to become an IBD nurse 00:13:51.080 --> 00:13:54.679 practitioner someday and be able to help other 00:13:54.679 --> 00:13:57.059 people who have dealt with similar things that 00:13:57.059 --> 00:14:00.419 I have dealt with. So remembering my why has 00:14:00.419 --> 00:14:03.059 been very helpful for me. Why do I want to get 00:14:03.059 --> 00:14:05.799 out of bed? Why am I going to work? Why am I 00:14:05.799 --> 00:14:09.679 showing up to school? If I remember my why, then 00:14:09.679 --> 00:14:13.539 that is what has helped me continue to show up 00:14:13.539 --> 00:14:16.480 every day for things. And you mentioned earlier 00:14:16.480 --> 00:14:18.419 that you were pretty open about your disease 00:14:18.419 --> 00:14:22.059 with your friends, right, with your family. And 00:14:22.059 --> 00:14:26.960 you and I, we connected on Instagram, and I think 00:14:26.960 --> 00:14:29.960 you're a pretty open person on there as well, 00:14:30.000 --> 00:14:34.399 on TikTok as well. So what would your message 00:14:34.399 --> 00:14:37.980 be to young people that are going through a similar 00:14:37.980 --> 00:14:40.399 journey than you have, especially sort of, you 00:14:40.399 --> 00:14:43.340 know, facing surgeries or just having surgeries, 00:14:43.600 --> 00:14:47.240 what would you tell them to, especially when 00:14:47.240 --> 00:14:51.080 they're afraid, right? Because when I speak to 00:14:51.080 --> 00:14:54.100 people and the word surgery pops up, fear is 00:14:54.100 --> 00:14:56.019 the first thing that pops into their minds, right? 00:14:56.139 --> 00:14:58.759 This uncertainty. So as somebody who's went through 00:14:58.759 --> 00:15:02.159 this, what's your message to those people? I 00:15:02.159 --> 00:15:05.220 would tell them that it's going to be okay. You 00:15:05.220 --> 00:15:07.620 are stronger than you think and give yourself 00:15:07.620 --> 00:15:11.419 credit for. We can't obviously choose to have 00:15:11.419 --> 00:15:13.860 the surgery, but we can choose how we respond 00:15:13.860 --> 00:15:16.799 to these situations that arise in our lives. 00:15:17.220 --> 00:15:20.840 We can either go through it with a negative, 00:15:21.340 --> 00:15:24.419 pessimistic attitude, which there is a time and 00:15:24.419 --> 00:15:26.659 place for that. I definitely am not positive 00:15:26.659 --> 00:15:30.019 all the time. I have my moments. But I feel like 00:15:30.019 --> 00:15:32.960 you can either be sick and negative or sick and 00:15:32.960 --> 00:15:35.720 positive, and one feels a lot better than the 00:15:35.720 --> 00:15:41.169 other. It's easy to be scared for getting surgeries 00:15:41.169 --> 00:15:43.610 and stuff like that, and that's totally understandable 00:15:43.610 --> 00:15:46.870 to feel that way. But if you think about it, 00:15:46.990 --> 00:15:49.309 nobody can predict what's going to happen in 00:15:49.309 --> 00:15:52.250 their lives. So kind of sitting around and thinking, 00:15:52.350 --> 00:15:54.490 when's my next flare, when's my next surgery, 00:15:54.590 --> 00:15:56.929 that kind of stuff, you can kind of scare yourself 00:15:56.929 --> 00:16:00.269 into a spiral. But if you just think about nobody 00:16:00.269 --> 00:16:02.789 knows what's happening and nobody knows what's 00:16:02.789 --> 00:16:04.710 going to happen in their future as well, it kind 00:16:04.710 --> 00:16:07.620 of helps. Looking at the content that you produce, 00:16:07.740 --> 00:16:11.419 most of it is tied to, we can say, a specific 00:16:11.419 --> 00:16:15.200 sense of humor, right? Is that something that 00:16:15.200 --> 00:16:17.059 you developed over the years, or have you always 00:16:17.059 --> 00:16:19.919 been the kind of person with a little bit more 00:16:19.919 --> 00:16:23.220 of a dry sense of humor? I would definitely say 00:16:23.220 --> 00:16:25.759 I've always kind of had a dry sense of humor. 00:16:26.360 --> 00:16:30.100 That's very much how my family is. We joke with 00:16:30.100 --> 00:16:32.539 each other all the time. We're sarcastic, that 00:16:32.539 --> 00:16:36.279 kind of stuff. And using humor to cope and like... 00:16:36.490 --> 00:16:39.690 tough situations has proven to be very helpful 00:16:39.690 --> 00:16:42.629 for myself and i hope that it can help other 00:16:42.629 --> 00:16:45.950 people relate to situations i try to post things 00:16:45.950 --> 00:16:49.350 that i hope one person will relate to and think 00:16:49.350 --> 00:16:51.070 oh at least i'm not the only one that feels like 00:16:51.070 --> 00:16:53.730 that so that's kind of my my goal with posting 00:16:53.730 --> 00:16:57.049 content sarcasm i can definitely relate to that 00:16:57.049 --> 00:16:58.870 so that's why that's why you know your content 00:16:58.870 --> 00:17:01.789 speaks to me pretty easily so you you say that 00:17:01.789 --> 00:17:05.380 this Sense of humor is present in your family 00:17:05.380 --> 00:17:10.099 as well. Because you went through this during 00:17:10.099 --> 00:17:12.200 a crucial period, the teenage years essentially, 00:17:12.400 --> 00:17:17.400 looking back, do you feel that your family and 00:17:17.400 --> 00:17:21.880 also with the history of IBD, did they baby you 00:17:21.880 --> 00:17:26.319 through this in a sense? Or what was the type 00:17:26.319 --> 00:17:31.170 of support like that they gave you? I would definitely 00:17:31.170 --> 00:17:35.789 say they did not baby me. We have a lot of family 00:17:35.789 --> 00:17:38.150 history of different autoimmune diseases and 00:17:38.150 --> 00:17:41.109 kind of think of it like everyone has their thing 00:17:41.109 --> 00:17:45.130 that they struggle with. They were there to support 00:17:45.130 --> 00:17:48.990 me, like going to appointments with me or... 00:17:49.549 --> 00:17:52.710 when I wanted like needed a down day like watching 00:17:52.710 --> 00:17:55.410 movies with me that kind of stuff they've been 00:17:55.410 --> 00:18:00.009 very supportive in that aspect and I'd say with 00:18:00.009 --> 00:18:03.210 talking about my symptoms and how I feel and 00:18:03.210 --> 00:18:07.650 stuff I ironically most of the time keep it to 00:18:07.650 --> 00:18:12.069 myself except for social media I also see a therapist 00:18:12.069 --> 00:18:16.130 as well which has been very helpful for me but 00:18:16.130 --> 00:18:20.190 I don't love to I don't know, like complain about 00:18:20.190 --> 00:18:24.150 the way that I'm feeling to my family all the 00:18:24.150 --> 00:18:26.789 time. Cause if I told them every time I didn't 00:18:26.789 --> 00:18:28.890 feel well, that would be all the time every day. 00:18:28.970 --> 00:18:32.410 So I just, I only tell them if it's something 00:18:32.410 --> 00:18:35.650 like pretty, pretty dramatic or big going on. 00:18:37.470 --> 00:18:39.109 And I imagine, so if you have family members 00:18:39.109 --> 00:18:41.730 that are suffering from the same or similar conditions, 00:18:41.930 --> 00:18:44.809 there's sometimes a risk that they, I don't know, 00:18:44.809 --> 00:18:46.390 may look at your symptoms or may look at your 00:18:46.390 --> 00:18:49.230 condition or mood and say, hey, you know, I went 00:18:49.230 --> 00:18:50.829 through this or your aunt went through this. 00:18:50.950 --> 00:18:54.289 So suck it up, right? Toughen up. Did you feel 00:18:54.289 --> 00:18:56.670 any of that as well? Or did they just really 00:18:56.670 --> 00:18:59.569 treat you and your colitis as you are your person 00:18:59.569 --> 00:19:01.190 with your own disease and you're going to go 00:19:01.190 --> 00:19:04.150 through it the way you're going through it? They 00:19:04.150 --> 00:19:07.440 definitely did the second option with that. They 00:19:07.440 --> 00:19:09.680 never told me like to tough it up and stuff. 00:19:10.359 --> 00:19:12.960 I'm the only one in my family who's had surgeries 00:19:12.960 --> 00:19:18.339 for my IBD. So I do talk to my aunt a lot about 00:19:18.339 --> 00:19:21.640 like we complain to each other and it's pretty 00:19:21.640 --> 00:19:23.779 great. And I think it's a good weight event. 00:19:25.400 --> 00:19:28.740 But they definitely don't tell me to like suck 00:19:28.740 --> 00:19:31.359 it up and stuff. They've been really good about 00:19:31.359 --> 00:19:33.619 that. In high school, I'd have days where I'd 00:19:33.619 --> 00:19:38.339 be like, I'm too tired to. go to school and stuff 00:19:38.339 --> 00:19:40.839 like that and they would be like uh we'll try 00:19:40.839 --> 00:19:43.259 to go and see if you can get feeling better so 00:19:43.259 --> 00:19:45.660 they definitely encouraged me to try to do things 00:19:45.660 --> 00:19:48.299 which i do appreciate because if they didn't 00:19:48.299 --> 00:19:49.660 do that i probably would have never gone to school 00:19:49.660 --> 00:19:54.640 so that was good there was like um good gentle 00:19:54.640 --> 00:19:58.119 nudging but never like suck it up energy i guess 00:19:58.119 --> 00:20:01.779 yeah so no no real comparisons but more lifting 00:20:02.720 --> 00:20:05.079 Lifting each other up, right? And facing similar 00:20:05.079 --> 00:20:11.319 challenges. And that's really great. So growing 00:20:11.319 --> 00:20:13.059 up in a family with a lot of autoimmune diseases, 00:20:13.380 --> 00:20:17.420 especially also IBD, according to you, what do 00:20:17.420 --> 00:20:20.740 you think are some major misconceptions about 00:20:20.740 --> 00:20:24.619 colitis or Crohn's out there? One of my biggest 00:20:24.619 --> 00:20:28.759 ones is like IBS and IBD are the same thing. 00:20:29.279 --> 00:20:31.700 They are definitely not the same thing. Another 00:20:31.700 --> 00:20:35.700 one that I have is that some people think Crohn's 00:20:35.700 --> 00:20:38.839 is worse than colitis. And I think that's too 00:20:38.839 --> 00:20:40.880 broad of a statement to make because I think 00:20:40.880 --> 00:20:44.359 IBD affects every individual person differently. 00:20:44.839 --> 00:20:48.019 And there's different severities of both diseases 00:20:48.019 --> 00:20:51.220 with different comorbidities of both diseases. 00:20:51.680 --> 00:20:55.059 So flat out saying one is worse than the other, 00:20:55.119 --> 00:20:57.359 I don't think is an accurate statement to make. 00:20:58.430 --> 00:21:01.130 Those are kind of my two main ones that I have. 00:21:01.950 --> 00:21:03.950 That's a really good one, actually. And then 00:21:03.950 --> 00:21:06.329 I think, if you don't mind me adding, the other 00:21:06.329 --> 00:21:09.869 one is that surgery definitely does not cure 00:21:09.869 --> 00:21:14.809 IBD, right? I mean, you're still resting it in 00:21:14.809 --> 00:21:18.069 a way, even though your life is improving, it's 00:21:18.069 --> 00:21:25.130 not over, the fight. Now, if you go back to being 00:21:25.130 --> 00:21:29.079 15 years old, And you're sitting in a doctor's 00:21:29.079 --> 00:21:33.460 office and he or she just told you that you have 00:21:33.460 --> 00:21:36.559 ulcerative colitis. If you could speak to yourself 00:21:36.559 --> 00:21:42.640 on that day, what would you say? I would just 00:21:42.640 --> 00:21:46.019 say everything's going to be okay and everything's 00:21:46.019 --> 00:21:48.779 going to happen the way it's meant to. Not to 00:21:48.779 --> 00:21:52.740 be too scared and life isn't over, it's just 00:21:52.740 --> 00:21:57.589 starting. And IBD isn't all negative that I got 00:21:57.589 --> 00:22:00.349 a lot of positive things out of IBD. I've gotten 00:22:00.349 --> 00:22:03.509 a lot of connections to other people. I've had 00:22:03.509 --> 00:22:06.529 a lot of personal self -growth. So it's not all 00:22:06.529 --> 00:22:09.950 terrible. I probably tell myself that. And that's 00:22:09.950 --> 00:22:11.670 a really good transition to my next question 00:22:11.670 --> 00:22:15.049 is where you are now, despite your struggles, 00:22:15.130 --> 00:22:19.099 I'm sure that IBD has brought you. these positive 00:22:19.099 --> 00:22:21.299 aspects. Aside from what you just mentioned, 00:22:21.420 --> 00:22:23.740 how else do you think that this disease has made 00:22:23.740 --> 00:22:26.279 you a better person and also has enriched your 00:22:26.279 --> 00:22:31.380 life in a way? It has definitely taught me empathy. 00:22:31.579 --> 00:22:33.920 And I think part of the empathy I've learned 00:22:33.920 --> 00:22:37.079 is also from working on the other side in the 00:22:37.079 --> 00:22:40.400 medical field, realizing a lot of people have 00:22:40.400 --> 00:22:42.599 hidden struggles that they don't talk about. 00:22:42.619 --> 00:22:44.579 And you don't know that they're going through, 00:22:44.619 --> 00:22:46.339 but they are going through it and they still 00:22:46.339 --> 00:22:50.869 show up every day. IBD is an invisible disease 00:22:50.869 --> 00:22:55.089 for the most part. So it can be hard sometimes 00:22:55.089 --> 00:22:59.309 to express the struggles. And I think that's 00:22:59.309 --> 00:23:03.089 part of why like being online is important, at 00:23:03.089 --> 00:23:05.789 least for me to advocate to make IBD a little 00:23:05.789 --> 00:23:08.809 bit more visible. So that would kind of be the 00:23:08.809 --> 00:23:12.150 main things. And that's kind of a hopeful statement. 00:23:12.269 --> 00:23:16.789 And I always like to end the show with a little 00:23:16.789 --> 00:23:19.549 bit of hope. And the question that I would like 00:23:19.549 --> 00:23:21.329 to ask, even though it might be difficult to 00:23:21.329 --> 00:23:23.210 answer, but I still think that everybody sort 00:23:23.210 --> 00:23:25.069 of has their own opinion or their own wishes. 00:23:25.109 --> 00:23:27.809 Do you think that we will see a cure to IBD in 00:23:27.809 --> 00:23:32.130 our lifetime? I definitely hope so. I know the 00:23:32.130 --> 00:23:34.329 Crohn's and Colitis Foundation is doing a lot 00:23:34.329 --> 00:23:38.009 to get towards that. They have a lot of different 00:23:38.009 --> 00:23:40.450 events. They have the Take Steps event, like 00:23:40.450 --> 00:23:43.890 different charities. And I know there's more 00:23:43.890 --> 00:23:47.509 research happening every day. And we're getting 00:23:47.509 --> 00:23:49.609 closer and they're coming out with more and more 00:23:49.609 --> 00:23:52.369 biologics that can put people into more of a 00:23:52.369 --> 00:23:56.329 remission state. So I am hopeful that we will 00:23:56.329 --> 00:24:00.190 see a cure in my lifetime, but I am not 100 % 00:24:00.190 --> 00:24:02.289 sure because there's a lot of other diseases 00:24:02.289 --> 00:24:05.009 that have been looking for cures for a long time 00:24:05.009 --> 00:24:09.079 as well. So I don't know, but I hope so. Yeah, 00:24:09.079 --> 00:24:11.480 science is important, but you mentioned it. I 00:24:11.480 --> 00:24:14.019 think community, community support is equally 00:24:14.019 --> 00:24:16.839 important, especially for the mental aspect of 00:24:16.839 --> 00:24:19.339 those suffering through Crohn's and colitis. 00:24:19.519 --> 00:24:23.160 So Kinsey, thank you so much. This has been a 00:24:23.160 --> 00:24:25.519 great conversation. And the only thing I can 00:24:25.519 --> 00:24:27.680 tell you is, you know, keep fighting and also 00:24:27.680 --> 00:24:30.019 keep bringing that sarcasm to your online content. 00:24:30.140 --> 00:24:31.779 I'm sure there's a lot of other people that just 00:24:31.779 --> 00:24:33.640 besides me out there who appreciate that as well. 00:24:33.940 --> 00:24:37.359 And I wish you nothing but the best on your continuing. 00:24:38.019 --> 00:24:42.460 IBD journey. Thank you. That's it for today's 00:24:42.460 --> 00:24:45.059 episode of Talking S*** presented by Colitis 00:24:45.059 --> 00:24:48.180 Unfiltered. I'm Frank Tabering and if this hit 00:24:48.180 --> 00:24:51.420 home or hit your gut, do us a favor, subscribe 00:24:51.420 --> 00:24:54.559 to the show and follow us at Colitis Unfiltered 00:24:54.559 --> 00:24:57.900 on YouTube, Substack, Instagram, Threads, TikTok 00:24:57.900 --> 00:25:00.740 and Reddit. We'll see you soon for more inspiring 00:25:00.740 --> 00:25:02.380 stories from the bathroom floor.