WEBVTT 00:00:02.779 --> 00:00:04.719 I think for me it's been going back to a bit 00:00:04.719 --> 00:00:07.240 of what's controllable and what's not controllable. 00:00:07.919 --> 00:00:13.099 And so the fact that in the future I could need 00:00:13.099 --> 00:00:16.879 surgery outside of my control. The fact that 00:00:16.879 --> 00:00:20.059 things could get worse in the future partially 00:00:20.059 --> 00:00:24.780 in my control. And so that fear I think I've 00:00:24.780 --> 00:00:27.699 channeled into a more positive way of living 00:00:27.699 --> 00:00:31.660 my life. in terms of really holding myself accountable 00:00:31.660 --> 00:00:36.840 to sleep, stress, diet, making sure I take my 00:00:36.840 --> 00:00:38.979 meds, making sure I'm going to all my doctor's 00:00:38.979 --> 00:00:42.560 appointments, getting my labs done, etc. On today's 00:00:42.560 --> 00:00:45.539 episode of Colitis Unfiltered, I am thrilled 00:00:45.539 --> 00:00:48.859 to talk to Kyle, who got diagnosed with Crohn's 00:00:48.859 --> 00:00:52.539 disease at age nine in Atlanta, Georgia. So Kyle, 00:00:52.700 --> 00:00:54.200 it's a pleasure to have you on the show today. 00:00:54.719 --> 00:00:56.520 Yeah, thank you so much, Frank. Really excited 00:00:56.520 --> 00:01:00.909 to talk. So let's go way back to the beginning 00:01:00.909 --> 00:01:05.150 of your IBD journey, age nine. So I'm assuming 00:01:05.150 --> 00:01:07.790 you still have at least some memories of how 00:01:07.790 --> 00:01:09.629 this all happened. And my first question I'd 00:01:09.629 --> 00:01:12.150 like to ask is really how it all came to be. 00:01:12.269 --> 00:01:14.870 And that means sort of first symptoms or like 00:01:14.870 --> 00:01:17.950 the moment where either you or your parents or 00:01:17.950 --> 00:01:20.930 all of you realized that something was wrong. 00:01:21.069 --> 00:01:23.109 Can you take me a little bit about through how 00:01:23.109 --> 00:01:27.109 this IBD started to manifest with you specifically? 00:01:28.199 --> 00:01:31.659 Yeah, it's actually funny. About, I think, three 00:01:31.659 --> 00:01:33.560 months before I started exhibiting symptoms, 00:01:33.920 --> 00:01:37.599 I remember I was walking maybe like in a park 00:01:37.599 --> 00:01:41.099 with my dad. And I think I just learned about 00:01:41.099 --> 00:01:44.480 tapeworms. So we were talking about like what 00:01:44.480 --> 00:01:47.459 the experience of a tapeworm would feel like. 00:01:47.640 --> 00:01:50.319 And I remember at the time I was just as a typical 00:01:50.319 --> 00:01:52.859 kid eating a ton of food and just always so hungry. 00:01:53.480 --> 00:01:58.939 And so three months later. And granted, this 00:01:58.939 --> 00:02:01.099 was almost two decades ago. So I think a lot 00:02:01.099 --> 00:02:03.780 of the details have slipped, but the symptoms 00:02:03.780 --> 00:02:06.700 started hitting. And I remember for me specifically, 00:02:06.879 --> 00:02:10.580 I was throwing up. I was having really, really 00:02:10.580 --> 00:02:14.039 intense stomach pain. And then the very typical 00:02:14.039 --> 00:02:17.879 Crohn's symptoms of diarrhea, going to the bathroom 00:02:17.879 --> 00:02:20.819 a ton. There was probably blood in my stools 00:02:20.819 --> 00:02:27.139 as well, feeling very tired. I remember my mom 00:02:27.139 --> 00:02:30.120 taking me to the pediatrician and they were testing 00:02:30.120 --> 00:02:32.379 me for stomach flu and thought maybe it's just 00:02:32.379 --> 00:02:35.199 some type of stomach bug. I think as a kid, it 00:02:35.199 --> 00:02:37.819 was there's a bit of I just feel really sick 00:02:37.819 --> 00:02:40.780 and we're trying to figure out what it is. And 00:02:40.780 --> 00:02:42.680 I'm shuttling in and out of so many different 00:02:42.680 --> 00:02:46.740 doctors and they're not really telling me. They're 00:02:46.740 --> 00:02:48.740 more talking to my parents than talking to me 00:02:48.740 --> 00:02:51.740 on like what's happening, what they're testing 00:02:51.740 --> 00:02:54.879 for, et cetera. And so as a kid, I just remember. 00:02:55.479 --> 00:02:58.539 I'd go into the doctor, I'd get pricked in the 00:02:58.539 --> 00:03:00.939 arm and they'd take blood or they want to do 00:03:00.939 --> 00:03:04.060 certain tests or eventually, you know, after 00:03:04.060 --> 00:03:05.860 multiple months of all these different tests, 00:03:05.979 --> 00:03:09.759 they want me to go have a colonoscopy. And my 00:03:09.759 --> 00:03:13.259 parents, I think they made it a bit easier on 00:03:13.259 --> 00:03:19.879 me. They they gave me like incentives to to like 00:03:19.879 --> 00:03:22.400 look forward to some of these things. And so. 00:03:22.960 --> 00:03:24.900 When I started a Remicade a few years later, 00:03:24.960 --> 00:03:27.139 we had like this contract where like I would 00:03:27.139 --> 00:03:29.939 eat like X amount of fruits per week. And like 00:03:29.939 --> 00:03:32.680 every single time I got Remicade, we would go 00:03:32.680 --> 00:03:35.319 get Chick -fil -A right before we got Remicade. 00:03:35.379 --> 00:03:37.560 And that was my treat. And so it made it so that 00:03:37.560 --> 00:03:39.259 like I look forward to some of these milestones. 00:03:39.819 --> 00:03:41.439 It's like I remember when I was going into the 00:03:41.439 --> 00:03:44.099 doctor, you know, when I was first getting diagnosed, 00:03:44.199 --> 00:03:47.599 I think like one of the treats was it was like 00:03:47.599 --> 00:03:50.560 a Game Boy or something like that. And so I remember 00:03:50.560 --> 00:03:52.530 a lot of the time. When the doctor was talking, 00:03:52.650 --> 00:03:54.129 I think I was like not even really paying attention 00:03:54.129 --> 00:03:57.030 to what he was telling my parents. So you just 00:03:57.030 --> 00:03:58.710 said that you might not have been paying much 00:03:58.710 --> 00:04:01.729 attention, but in terms of diagnosis, like was 00:04:01.729 --> 00:04:03.830 it the doctor that tried to talk to you directly 00:04:03.830 --> 00:04:05.569 and explain to you a little bit about what you 00:04:05.569 --> 00:04:10.830 had? Or was it your parents who explained any 00:04:10.830 --> 00:04:14.490 aspects of Crohn's disease to you? How did you 00:04:14.490 --> 00:04:18.449 become familiar with what you actually were suffering 00:04:18.449 --> 00:04:21.800 from? Definitely partially. Probably a big part 00:04:21.800 --> 00:04:24.579 my fault, but also maybe a bit of a failure on 00:04:24.579 --> 00:04:27.319 the health care system. No one ever really explained 00:04:27.319 --> 00:04:30.800 to me what Crohn's was, what caused it, why it 00:04:30.800 --> 00:04:34.680 manifests. And it wasn't until I got to college, 00:04:34.680 --> 00:04:38.740 like over a decade later, that doctors started 00:04:38.740 --> 00:04:40.480 throwing around jargon and I started doing a 00:04:40.480 --> 00:04:42.899 tiny bit more research looking online. When I 00:04:42.899 --> 00:04:46.360 was first diagnosed, my doctor at the time said, 00:04:47.660 --> 00:04:49.959 You have Crohn's disease. That's why you're going 00:04:49.959 --> 00:04:51.399 to the bathroom so often. That's why you're having 00:04:51.399 --> 00:04:53.860 this really, really intense pain. We're going 00:04:53.860 --> 00:04:55.939 to put you on meds for it. In addition to the 00:04:55.939 --> 00:04:59.939 meds, you can eat popcorn, nuts, seeds, beans, 00:05:00.220 --> 00:05:03.939 like those four foods or like you'll have to 00:05:03.939 --> 00:05:06.959 get your intestines taken out. And so I spent 00:05:06.959 --> 00:05:10.279 the next decade plus of my life not really knowing 00:05:10.279 --> 00:05:11.920 what Crohn's is and then just being like, OK, 00:05:12.040 --> 00:05:14.860 if I have these specific foods, they're somehow 00:05:14.860 --> 00:05:16.660 just going to get stuck in my intestines or. 00:05:17.180 --> 00:05:19.480 rupture something and then i'm gonna have to 00:05:19.480 --> 00:05:23.120 have a major surgery and have uh like a colostomy 00:05:23.120 --> 00:05:27.800 bag for the rest of my life it was a very very 00:05:27.800 --> 00:05:30.040 long journey i think and it ended up being more 00:05:30.040 --> 00:05:31.860 self -directed until i found a clinician who 00:05:31.860 --> 00:05:35.639 could help yeah that's pretty uh pretty intense 00:05:35.639 --> 00:05:38.079 for somebody to say hey if you eat popcorn or 00:05:38.079 --> 00:05:40.079 beans you're gonna have your intestines taken 00:05:40.079 --> 00:05:42.259 out i mean that's uh i'm not sure that's sort 00:05:42.259 --> 00:05:46.040 of the norm or the typical protocol but uh it's 00:05:46.040 --> 00:05:48.439 definitely the first First I hear of a doctor 00:05:48.439 --> 00:05:50.680 saying that to somebody, especially a kid, you 00:05:50.680 --> 00:05:55.779 know, and so, okay. So long journey, age nine, 00:05:55.939 --> 00:05:59.180 it's a crucial age because you're not even in 00:05:59.180 --> 00:06:04.160 your teens yet and they are coming and you are 00:06:04.160 --> 00:06:07.279 entering that period of your life with a condition 00:06:07.279 --> 00:06:10.220 that nobody really explained to you exactly, 00:06:10.480 --> 00:06:12.060 but you know, obviously what your symptoms are. 00:06:13.199 --> 00:06:16.540 Before we kind of move to the treatments. How 00:06:16.540 --> 00:06:20.160 did you start navigating life as a young boy 00:06:20.160 --> 00:06:24.399 still with this newly diagnosed inflammatory 00:06:24.399 --> 00:06:28.439 bowel disease? I think I kind of, in a lot of 00:06:28.439 --> 00:06:33.100 ways, denied the existence of it. And I know 00:06:33.100 --> 00:06:34.680 we're going to get into treatment later, but 00:06:34.680 --> 00:06:36.060 I've never been in remission. I've always had 00:06:36.060 --> 00:06:37.779 active disease. I've always had active symptoms. 00:06:38.579 --> 00:06:42.199 And so I've just gotten, through that period 00:06:42.199 --> 00:06:44.060 of my life, I've gotten really good at hiding 00:06:44.060 --> 00:06:50.000 those symptoms. in an outward way. And so I think 00:06:50.000 --> 00:06:52.639 a lot of it was feeling embarrassed. I mean, 00:06:52.660 --> 00:06:57.980 when your main symptoms are the one that's maybe 00:06:57.980 --> 00:07:00.139 most frustrating at times is having to go to 00:07:00.139 --> 00:07:02.560 the bathroom a lot and having diarrhea and having 00:07:02.560 --> 00:07:04.920 stomach pain. It's embarrassing things to talk 00:07:04.920 --> 00:07:09.540 about, especially as a kid. And I think a big 00:07:09.540 --> 00:07:13.439 piece of me felt ashamed of having those symptoms. 00:07:14.569 --> 00:07:17.430 And so I didn't want to be defined by them. I 00:07:17.430 --> 00:07:23.129 would try to make it as unassuming, non -apparent 00:07:23.129 --> 00:07:28.029 as possible. And on top of that, and this also, 00:07:28.129 --> 00:07:31.149 I mean, this extended on until after college 00:07:31.149 --> 00:07:35.129 for me. And I think I did a lot of things in 00:07:35.129 --> 00:07:38.629 spite of having Crohn's and really tried to push 00:07:38.629 --> 00:07:41.750 myself beyond what my doctors told me I could 00:07:41.750 --> 00:07:44.439 or couldn't do. Maybe sort of unconsciously you 00:07:44.439 --> 00:07:47.699 try to compensate for something by trying to 00:07:47.699 --> 00:07:50.560 push your body, especially, you know, again, 00:07:50.660 --> 00:07:53.519 you know, dealing with something that is or can 00:07:53.519 --> 00:07:57.420 be so violent as someone of a young age that 00:07:57.420 --> 00:08:01.199 doesn't really understand how it works. So navigating 00:08:01.199 --> 00:08:05.470 this disease as a teenager. Were you ever angry 00:08:05.470 --> 00:08:08.170 at other people, jealous of other people, envious 00:08:08.170 --> 00:08:10.649 of other kids, friends, people that you went 00:08:10.649 --> 00:08:12.490 to school with around you because they seem to 00:08:12.490 --> 00:08:16.029 be living a quote -unquote normal life compared 00:08:16.029 --> 00:08:19.069 to yours? I think the hatred was more directed 00:08:19.069 --> 00:08:23.730 inwards. I really hated this feeling that my 00:08:23.730 --> 00:08:26.850 body was failing me. It felt like no matter what 00:08:26.850 --> 00:08:28.910 I did, even if I listened to my doctor and took 00:08:28.910 --> 00:08:32.169 all my meds, I would still feel really, really 00:08:32.169 --> 00:08:39.230 sick. And I think this anger also fueled me in 00:08:39.230 --> 00:08:42.190 some ways where the symptoms were always there 00:08:42.190 --> 00:08:46.309 no matter what. And it would fluctuate a tiny 00:08:46.309 --> 00:08:48.889 bit. It would get a little worse or get a little 00:08:48.889 --> 00:08:51.389 better. And so I felt it didn't really matter 00:08:51.389 --> 00:08:57.409 what I did lifestyle wise or like taking time 00:08:57.409 --> 00:09:00.429 to rest or there'd be like other things doctors 00:09:00.429 --> 00:09:03.419 would tell me like. Take it easier. You don't 00:09:03.419 --> 00:09:05.379 need to be trying to do everything all at once. 00:09:05.799 --> 00:09:08.379 And my view was I'm going to have this for the 00:09:08.379 --> 00:09:10.659 rest of my life if I continue to listen to doctors 00:09:10.659 --> 00:09:13.340 and I continue to listen to what my parents are 00:09:13.340 --> 00:09:15.419 telling me, then I'm just not going to do anything 00:09:15.419 --> 00:09:18.159 in life. I'm just going to stay home. I'm going 00:09:18.159 --> 00:09:23.799 to feel really crappy all the time. And that's 00:09:23.799 --> 00:09:26.679 not the life that I wanted. And so it was this 00:09:26.679 --> 00:09:30.440 mixture of... Not wanting to feel constrained 00:09:30.440 --> 00:09:34.399 by the disease and a really strong deep -seated 00:09:34.399 --> 00:09:36.879 anger and a feeling that my body was failing 00:09:36.879 --> 00:09:39.879 me. But not directed really towards other people. 00:09:40.279 --> 00:09:44.259 We'll get back to this sort of, you know, feeling 00:09:44.259 --> 00:09:46.659 that your body betrayed you and anger towards 00:09:46.659 --> 00:09:48.539 your body. But before we get to you mentioned, 00:09:48.860 --> 00:09:50.919 you know, you've never really achieved remission. 00:09:52.960 --> 00:09:55.500 Talk us a little bit through the different treatments, 00:09:55.600 --> 00:09:58.340 medications that you were on. And I'm also curious 00:09:58.340 --> 00:10:00.960 to see, you know, how it has progressed over 00:10:00.960 --> 00:10:03.860 the years, because obviously you're no longer 00:10:03.860 --> 00:10:05.779 nine years old. There's a whole bunch of years 00:10:05.779 --> 00:10:09.139 in between. And yet you say you've never really 00:10:09.139 --> 00:10:12.460 achieved remission. How did Crohn's evolve from 00:10:12.460 --> 00:10:17.019 diagnosis to today, essentially? Yeah, yeah. 00:10:17.139 --> 00:10:21.980 So my inflammation. i think was probably more 00:10:21.980 --> 00:10:25.860 severe at certain points in my my patient journey 00:10:25.860 --> 00:10:28.879 when i say i've never been in remission i mean 00:10:28.879 --> 00:10:31.299 i've always had active inflammation and i've 00:10:31.299 --> 00:10:34.059 always had symptoms but i haven't always been 00:10:34.059 --> 00:10:36.460 in a flare when i was first diagnosed i don't 00:10:36.460 --> 00:10:39.460 remember i know that there's step therapy so 00:10:39.460 --> 00:10:41.419 you fail out of all these different meds the 00:10:41.419 --> 00:10:43.480 first med that i landed on that worked for a 00:10:43.480 --> 00:10:47.190 sustained period of time was remicade and As 00:10:47.190 --> 00:10:50.269 a kid, that meant I would go into an infusion 00:10:50.269 --> 00:10:53.830 clinic. Initially, it was every two months. Very 00:10:53.830 --> 00:10:56.309 quickly, it wasn't working, so I went down to 00:10:56.309 --> 00:10:58.289 one month. So every month, I'd go in and get 00:10:58.289 --> 00:11:02.429 a three -hour IV. On top of this, in college, 00:11:02.710 --> 00:11:05.610 maybe, or maybe towards the end of high school, 00:11:05.809 --> 00:11:09.429 they added methotrexate on top of that. And so 00:11:09.429 --> 00:11:11.529 then there was a ton of other pills that were 00:11:11.529 --> 00:11:14.610 put on top of that to deal with the side effects 00:11:14.610 --> 00:11:16.529 and then some of those other... Pills had other 00:11:16.529 --> 00:11:19.129 side effects. And so on the Remicade, I still 00:11:19.129 --> 00:11:21.909 had active symptoms. I was still having extreme 00:11:21.909 --> 00:11:24.730 abdominal pain. I would still have diarrhea, 00:11:24.970 --> 00:11:28.110 blood in my stools, fatigue. But the inflammation 00:11:28.110 --> 00:11:34.210 wasn't increasing. And I think my doctor felt 00:11:34.210 --> 00:11:36.889 with the medication available at the time and 00:11:36.889 --> 00:11:38.669 the risk of changing to a different medication, 00:11:38.870 --> 00:11:41.490 it was under control enough to reduce future 00:11:41.490 --> 00:11:45.620 surgery risk. When I was in college, I started 00:11:45.620 --> 00:11:48.740 developing antibodies to the Remicade. And so 00:11:48.740 --> 00:11:51.899 the medication was just no longer effective in 00:11:51.899 --> 00:11:55.960 general. This was also compounded by a C. diff 00:11:55.960 --> 00:12:00.539 infection that I got. And so as I was becoming 00:12:00.539 --> 00:12:02.519 immune to the Remicade, we started experimenting 00:12:02.519 --> 00:12:06.080 with different medicines. So I tried Antivio. 00:12:06.100 --> 00:12:09.639 I tried Stelara. Neither of those worked. Then 00:12:09.639 --> 00:12:14.480 I got put on prednisone, which... It's an effective 00:12:14.480 --> 00:12:19.179 medication for sure. That's the worst experience 00:12:19.179 --> 00:12:22.299 I've ever had in my life with a medication. There 00:12:22.299 --> 00:12:24.240 are periods where I'm still having like really, 00:12:24.299 --> 00:12:27.320 really intense abdominal pain. And so my doctor 00:12:27.320 --> 00:12:30.419 prescribes me tramadol. And so I have to make 00:12:30.419 --> 00:12:32.740 a choice when I'm going to class of, do I want 00:12:32.740 --> 00:12:35.259 to take my tramadol and be high on pain meds, 00:12:35.279 --> 00:12:37.840 struggling to pay attention? Or do I want to 00:12:37.840 --> 00:12:40.159 be in a ton of pain, still struggling to pay 00:12:40.159 --> 00:12:45.309 attention? Eventually, We found the C. diff and 00:12:45.309 --> 00:12:47.750 there was still active inflammation, but the 00:12:47.750 --> 00:12:50.590 prednisone tamped down the inflammation, getting 00:12:50.590 --> 00:12:52.710 rid of the C. diff, which was also a really arduous 00:12:52.710 --> 00:12:56.289 process with expensive medications. And eventually 00:12:56.289 --> 00:12:59.210 I had to get a fecal transplant, which is also 00:12:59.210 --> 00:13:00.970 something that I found super embarrassing and 00:13:00.970 --> 00:13:05.889 super gross. After the prednisone, we were pretty 00:13:05.889 --> 00:13:07.789 much out of medications. That's the way that 00:13:07.789 --> 00:13:10.200 my doctor pitched it to me. And so they wanted 00:13:10.200 --> 00:13:12.519 to put me on a clinical trial for a new medication 00:13:12.519 --> 00:13:19.039 that would do something to my sperm where I couldn't 00:13:19.039 --> 00:13:22.559 have kids. And so I'm a sophomore in college 00:13:22.559 --> 00:13:25.620 being told that my last opportunity is to take 00:13:25.620 --> 00:13:29.120 part in some experimental drug that will then 00:13:29.120 --> 00:13:31.100 make me not able to have kids in the future. 00:13:31.240 --> 00:13:33.860 And they're not even sure it'll work. I think 00:13:33.860 --> 00:13:37.500 the last step before that was, let's try Humira. 00:13:39.290 --> 00:13:41.889 because I hadn't done that one yet. But the doctor, 00:13:41.929 --> 00:13:43.409 I don't think, was super confident that was going 00:13:43.409 --> 00:13:48.190 to work. So I start the Humira and see some positive 00:13:48.190 --> 00:13:52.929 indications. Once again, I'm not having my inflammation 00:13:52.929 --> 00:13:54.870 go down to zero. I still have some active inflammation. 00:13:55.289 --> 00:13:58.090 I still have symptoms. I still have, when I'm 00:13:58.090 --> 00:14:00.509 walking to class, I'm throwing up in the mornings. 00:14:01.110 --> 00:14:05.490 I'm still having diarrhea. And also I'm in college 00:14:05.490 --> 00:14:07.669 doing a lot of things that are probably not healthy 00:14:07.669 --> 00:14:11.840 for my body. I remember one thing, which in retrospect 00:14:11.840 --> 00:14:14.120 seems so stupid, but when I would go to the gym, 00:14:14.279 --> 00:14:17.019 I would force myself to stay active and to go 00:14:17.019 --> 00:14:19.100 to the gym, but I would do pre -workout every 00:14:19.100 --> 00:14:21.460 morning, which has so much caffeine in it, which 00:14:21.460 --> 00:14:24.659 is so bad for the GI. But there's like six months 00:14:24.659 --> 00:14:26.279 where I was just doing pre -workout every morning, 00:14:26.320 --> 00:14:29.700 which is absolutely insane. But now I've been 00:14:29.700 --> 00:14:37.750 on Humira since around 2017, 2018. So seven, 00:14:37.830 --> 00:14:43.269 eight years. I have been on the Humeromethotrexate 00:14:43.269 --> 00:14:48.629 combo since then. And upon graduating college, 00:14:48.809 --> 00:14:51.750 entering the working world, still symptomatic. 00:14:51.929 --> 00:14:55.570 When I moved to Boston, new provider, she set 00:14:55.570 --> 00:14:59.769 me up with an IBD dietician. And so I learned 00:14:59.769 --> 00:15:02.669 a lot more about diet and the impact of diet. 00:15:02.730 --> 00:15:04.629 And over the years, I'd heard so much conflicting 00:15:04.629 --> 00:15:10.960 advice on that. At my university, I didn't really 00:15:10.960 --> 00:15:14.720 believe in diet. You go online to these Facebook 00:15:14.720 --> 00:15:17.299 groups or Reddit, and people promise all these 00:15:17.299 --> 00:15:19.779 miracle diets. My family had always been sending 00:15:19.779 --> 00:15:22.320 me these different miracle diets or telling me 00:15:22.320 --> 00:15:26.240 to try CBD or go try acupuncture or go try yoga 00:15:26.240 --> 00:15:29.740 or just other random, more holistic medicine 00:15:29.740 --> 00:15:32.879 alternative treatments, which some of them probably 00:15:32.879 --> 00:15:35.059 do help some people. They just hadn't worked 00:15:35.059 --> 00:15:37.179 for me. And I think I'd written off diet as one 00:15:37.179 --> 00:15:40.360 of those woo -woo treatments that don't actually 00:15:40.360 --> 00:15:42.960 work. Living in Boston with this new provider, 00:15:43.059 --> 00:15:45.580 the dietician, I think, gave me some of the initial 00:15:45.580 --> 00:15:49.779 building blocks. And over time, I still have 00:15:49.779 --> 00:15:51.519 active inflammation, but my symptoms have gone 00:15:51.519 --> 00:15:53.840 down a lot more. And this is the closest I've 00:15:53.840 --> 00:15:56.740 ever felt to remission at this point, where it's 00:15:56.740 --> 00:16:00.379 still humeromethotrexate and then being a lot 00:16:00.379 --> 00:16:03.299 cleaner in what I'm eating. And then the last 00:16:03.299 --> 00:16:08.019 update. is methotrexate's not great. There's 00:16:08.019 --> 00:16:12.519 risks for that and methotrexate toxicity. And 00:16:12.519 --> 00:16:15.580 so three months ago, I started Tremphia, which 00:16:15.580 --> 00:16:19.519 is a newer drug. And the hope is to wean me off 00:16:19.519 --> 00:16:21.559 of the methotrexate and replace that with the 00:16:21.559 --> 00:16:24.700 Tremphia, which could potentially be safer for 00:16:24.700 --> 00:16:27.720 my body. So I'm only a few months in. I'm feeling 00:16:27.720 --> 00:16:30.539 better, but it could be a bit placebo. I think 00:16:30.539 --> 00:16:33.299 it'll take time to... to really see and also 00:16:33.299 --> 00:16:36.120 probably need to do some more like fecal calprotectin 00:16:36.120 --> 00:16:38.500 inflammation testing to see if it's actually 00:16:38.500 --> 00:16:43.240 impacting the underlying disease. Yeah. So long 00:16:43.240 --> 00:16:48.320 journey to get closer to remission, but not quite 00:16:48.320 --> 00:16:53.899 there yet either. How do you keep hope alive 00:16:53.899 --> 00:16:57.200 when it feels like your own body is basically 00:16:57.200 --> 00:17:01.980 constantly working against you? Going back to 00:17:01.980 --> 00:17:05.099 earlier in my journey where I really hated my 00:17:05.099 --> 00:17:08.380 body and fought against it. And then getting 00:17:08.380 --> 00:17:11.460 to a point where you just accept that's how your 00:17:11.460 --> 00:17:16.099 body functions. And giving it more grace when 00:17:16.099 --> 00:17:20.099 you have flare -like episodes. You're having 00:17:20.099 --> 00:17:24.460 more symptoms at a period of time. And moving 00:17:24.460 --> 00:17:27.200 past even just accepting it to having compassion 00:17:27.200 --> 00:17:30.829 for your body. I think... reframed my mindset 00:17:30.829 --> 00:17:39.609 and so when my disease is more active when I'm 00:17:39.609 --> 00:17:46.609 feeling more symptomatic I definitely feel more 00:17:46.609 --> 00:17:50.069 melancholy and maybe a bit more frustrated with 00:17:50.069 --> 00:17:54.250 with my body but the periods where I'm not feeling 00:17:54.250 --> 00:18:00.339 so sick that I can't leave home To me, my Crohn's 00:18:00.339 --> 00:18:04.140 diagnosis becomes something less central to who 00:18:04.140 --> 00:18:07.180 I am. Over the years, I think I've pushed past 00:18:07.180 --> 00:18:12.640 a lot of the barriers or guardrails that other 00:18:12.640 --> 00:18:16.559 people have put on me or constructed around me. 00:18:16.599 --> 00:18:21.299 And I know, I think, what I'm capable of. I guess, 00:18:21.299 --> 00:18:23.619 like, to be more concrete on this, when I was 00:18:23.619 --> 00:18:26.579 in college, I remember my doctor telling me, 00:18:26.619 --> 00:18:29.619 you can't drink. You shouldn't be going to all 00:18:29.619 --> 00:18:32.119 these parties. I really wanted to study abroad. 00:18:32.480 --> 00:18:34.680 You can't study abroad. You really shouldn't 00:18:34.680 --> 00:18:37.579 be traveling at all. My first job out of college, 00:18:37.859 --> 00:18:41.279 I was working a job that was 60 to 80 hours a 00:18:41.279 --> 00:18:44.880 week. My next job out of college after that was 00:18:44.880 --> 00:18:49.400 100 plus hours per week. So very intense. A lot 00:18:49.400 --> 00:18:51.039 of the time, still doctors saying you shouldn't 00:18:51.039 --> 00:18:54.779 be traveling. I love hiking. I love backpacking. 00:18:54.900 --> 00:18:57.640 Going on a seven -day... backpacking camping 00:18:57.640 --> 00:19:00.920 trip not something you should be doing and so 00:19:00.920 --> 00:19:05.700 i think i lumped all of this you shouldn't be 00:19:05.700 --> 00:19:09.440 doing these things into one and just felt like 00:19:09.440 --> 00:19:13.940 i was being constrained by these clinicians and 00:19:13.940 --> 00:19:17.519 by other people and it took a lot of time for 00:19:17.519 --> 00:19:20.339 me to start to parse out and to separate like 00:19:20.339 --> 00:19:22.039 yes there are certain things i shouldn't be doing 00:19:22.039 --> 00:19:26.519 as much of i should not be drinking heavily. 00:19:26.680 --> 00:19:30.019 I should really be conscientious that I'm getting 00:19:30.019 --> 00:19:32.299 eight hours of sleep and I'm getting adequate 00:19:32.299 --> 00:19:36.380 exercise per week. On the other hand, I can travel. 00:19:36.480 --> 00:19:38.819 I can go hike and camp. I'll have to take more 00:19:38.819 --> 00:19:41.859 precautions. I'll have to bring certain types 00:19:41.859 --> 00:19:44.279 of food with me. I'll pack a lot of Imodium. 00:19:44.539 --> 00:19:48.059 I'll pack electrolytes, my Zofran, my wet wipes, 00:19:48.279 --> 00:19:51.279 all of that. And so I think it's a bit of realizing 00:19:51.279 --> 00:19:53.779 there are some things outside of my control. 00:19:54.359 --> 00:19:56.319 That like if I drink alcohol, my body is going 00:19:56.319 --> 00:19:58.380 to react. But there's a lot of things in my control 00:19:58.380 --> 00:20:01.839 that I can learn to deal with. And so the hope 00:20:01.839 --> 00:20:05.819 is, where the hope springs for me is, I'm a lot 00:20:05.819 --> 00:20:10.160 stronger than I give myself credit for at times. 00:20:10.779 --> 00:20:15.000 And I think in general, I love my body and I 00:20:15.000 --> 00:20:22.480 trust my body to be able to do what it can do. 00:20:23.000 --> 00:20:25.680 And so I have... hope through this confidence 00:20:25.680 --> 00:20:29.119 in myself where, yes, there are the uncontrollables, 00:20:29.160 --> 00:20:30.880 but for the controllables, I can take care of 00:20:30.880 --> 00:20:33.299 those. And so I can make the best type of life 00:20:33.299 --> 00:20:35.640 that I can by focusing on those controllable 00:20:35.640 --> 00:20:39.619 factors. Yeah. I think that's a very positive 00:20:39.619 --> 00:20:44.000 approach, especially if you're still dealing 00:20:44.000 --> 00:20:49.180 with active disease. Now, how do you deal with 00:20:49.180 --> 00:20:54.259 fear? in terms of the future right when it comes 00:20:54.259 --> 00:20:56.440 to your Crohn's because you've burned through 00:20:56.440 --> 00:21:01.140 a lot of medications yes you found a GI or medical 00:21:01.140 --> 00:21:04.799 team now that supports you much better than maybe 00:21:04.799 --> 00:21:09.019 the doctors before but yeah how do you deal with 00:21:09.019 --> 00:21:11.440 this thinking which I'm sure you have because 00:21:11.440 --> 00:21:13.319 or at least you've thought of it right like hey 00:21:13.319 --> 00:21:17.549 there's not many many treatments left I still 00:21:17.549 --> 00:21:20.329 haven't really fully achieved remission. What 00:21:20.329 --> 00:21:23.150 is going to happen to me, you know, if my symptoms 00:21:23.150 --> 00:21:27.930 get worse? How do you navigate this sort of fear 00:21:27.930 --> 00:21:30.650 that most people with active IBD still have as 00:21:30.650 --> 00:21:34.049 they sort of, you know, move along in their journey? 00:21:34.829 --> 00:21:37.289 Yeah. I think for me, it's been going back to 00:21:37.289 --> 00:21:40.009 a bit of what's controllable and what's not controllable. 00:21:40.670 --> 00:21:45.829 And so the fact that in the future, I could need 00:21:45.829 --> 00:21:49.630 surgery outside of my control. The fact that 00:21:49.630 --> 00:21:52.890 things could get worse in the future, partially 00:21:52.890 --> 00:21:57.529 in my control. And so that fear, I think I've 00:21:57.529 --> 00:22:00.450 channeled into a more positive way of living 00:22:00.450 --> 00:22:04.390 my life in terms of really holding myself accountable 00:22:04.390 --> 00:22:09.589 to sleep, stress, diet, making sure I take my 00:22:09.589 --> 00:22:11.750 meds, making sure I'm going to all my doctor's 00:22:11.750 --> 00:22:13.430 appointments, getting my labs done, et cetera. 00:22:14.059 --> 00:22:19.839 and staying on top of that. And there are periods 00:22:19.839 --> 00:22:22.559 where that fear spikes. And so when I'm having 00:22:22.559 --> 00:22:25.140 a conversation with my doctor and she's telling 00:22:25.140 --> 00:22:30.119 me, yeah, the inflammation has increased compared 00:22:30.119 --> 00:22:32.579 to your last appointment. If it keeps progressing, 00:22:32.779 --> 00:22:34.740 we'll have to explore a different medication. 00:22:35.200 --> 00:22:37.359 And if there's no other medications left, then 00:22:37.359 --> 00:22:40.099 like surgery and talking through that. I think 00:22:40.099 --> 00:22:42.980 those are, they're more temporal fears. based 00:22:42.980 --> 00:22:45.400 on the condition and how my disease is progressing. 00:22:45.880 --> 00:22:50.339 But I try not to make myself overly anxious or 00:22:50.339 --> 00:22:53.619 to focus on it too much when it's things that 00:22:53.619 --> 00:22:55.319 are outside of my control or things that may 00:22:55.319 --> 00:22:57.980 or may not happen. Yeah, it's a good approach. 00:22:58.160 --> 00:23:02.180 I think it's a very good approach. So you've 00:23:02.180 --> 00:23:06.180 been through a very long Crohn's journey. And 00:23:06.180 --> 00:23:10.000 like you mentioned earlier, you started off really 00:23:10.000 --> 00:23:12.880 not knowing too much about the disease. You went 00:23:12.880 --> 00:23:15.059 through phases of embarrassment, maybe a little 00:23:15.059 --> 00:23:17.200 bit of isolation as well. But then you sort of 00:23:17.200 --> 00:23:21.839 got older. You got wiser. You learned to live 00:23:21.839 --> 00:23:24.599 with the disease in a different way. You sort 00:23:24.599 --> 00:23:27.480 of realized that Crohn's started to change you 00:23:27.480 --> 00:23:32.920 as a person as well. And after speaking to you, 00:23:32.960 --> 00:23:36.970 before we started... the the episode here you 00:23:36.970 --> 00:23:39.130 know we talked about advocacy so i think you've 00:23:39.130 --> 00:23:41.150 also started coming out of your shell a little 00:23:41.150 --> 00:23:44.450 bit and started to share your own journey but 00:23:44.450 --> 00:23:48.750 you've You've gone a little bit beyond just advocating 00:23:48.750 --> 00:23:52.609 or raising awareness because you launched a project 00:23:52.609 --> 00:23:56.450 that's called TryTummy .com. And you can correct 00:23:56.450 --> 00:23:59.769 me if I'm wrong, but if I just sum it up, it's 00:23:59.769 --> 00:24:03.430 sort of an app providing some sort of IBD and 00:24:03.430 --> 00:24:07.210 IBS support. Talk to us a little bit about what 00:24:07.210 --> 00:24:11.890 this is, what it does, and then also what... 00:24:13.400 --> 00:24:17.160 trigger your experience in you to say, hey, let's 00:24:17.160 --> 00:24:19.099 take my experience and do something positive 00:24:19.099 --> 00:24:21.859 with it? I guess I'll start with what triggered 00:24:21.859 --> 00:24:24.140 me, and then I can get into what we're doing 00:24:24.140 --> 00:24:27.599 at Tummy. So my first job out of college, I mentioned 00:24:27.599 --> 00:24:32.559 it was a corporate job. It was an intense workplace 00:24:32.559 --> 00:24:36.779 environment. You're working very late hours every 00:24:36.779 --> 00:24:40.599 single day. And this was also COVID. I graduated 00:24:40.599 --> 00:24:43.539 2020, and so I started this job 2020. And so 00:24:43.539 --> 00:24:48.160 it was very isolating. And I remember my team, 00:24:48.180 --> 00:24:52.220 every night at 7 p .m., we would do like a checkout 00:24:52.220 --> 00:24:55.240 call where you would chat with the team and say 00:24:55.240 --> 00:24:56.480 like what you're going to work on for the rest 00:24:56.480 --> 00:25:00.619 of the night. And you'd also sometimes just chat. 00:25:00.880 --> 00:25:03.900 You would shoot the shit a little bit. And I 00:25:03.900 --> 00:25:06.720 remember one night we were all sharing different 00:25:06.720 --> 00:25:08.519 things about ourselves. And I mentioned some 00:25:08.519 --> 00:25:10.359 of my anxiety about how I was going to manage 00:25:10.359 --> 00:25:16.000 this really intense job. and my health. And so 00:25:16.000 --> 00:25:17.799 from this conversation, they told me that I should 00:25:17.799 --> 00:25:21.000 get involved with this disability support group 00:25:21.000 --> 00:25:27.500 that was at the company. And I think I had reached 00:25:27.500 --> 00:25:30.319 out and maybe didn't get a response or it just 00:25:30.319 --> 00:25:33.039 wasn't very active. And so I decided to start 00:25:33.039 --> 00:25:38.470 a support group within my own office. I was having 00:25:38.470 --> 00:25:40.170 all these conversations with people that also 00:25:40.170 --> 00:25:42.890 had chronic diseases, invisible disabilities, 00:25:42.990 --> 00:25:46.230 visible disabilities, and realizing how similar 00:25:46.230 --> 00:25:48.789 their experience was to mine. And I felt so much 00:25:48.789 --> 00:25:53.730 meaning and purpose in being able to relate and 00:25:53.730 --> 00:25:59.170 help these people. And so I, after that, moved 00:25:59.170 --> 00:26:03.329 to Boston for another job and started to feel 00:26:03.329 --> 00:26:06.119 a sense of ennui, really. settle in where I wasn't 00:26:06.119 --> 00:26:07.880 doing anything meaningful. I didn't feel like 00:26:07.880 --> 00:26:09.519 I was making a positive impact in the world. 00:26:09.559 --> 00:26:11.660 And I still really wanted to do something to 00:26:11.660 --> 00:26:14.359 help the chronic disease population or folks 00:26:14.359 --> 00:26:18.160 in similar situations to myself. And so I decided 00:26:18.160 --> 00:26:24.640 to go back to school in 2024 to pivot into entrepreneurship, 00:26:24.680 --> 00:26:27.259 to start something that would help chronic disease 00:26:27.259 --> 00:26:30.559 patients. And so I spent my first year exploring 00:26:30.559 --> 00:26:35.039 different ideas. Towards the second half of my 00:26:35.039 --> 00:26:39.180 first year, we had one class on operations where 00:26:39.180 --> 00:26:42.680 it was mapping out the process flow of a certain 00:26:42.680 --> 00:26:45.819 task and figuring out where the pain points are 00:26:45.819 --> 00:26:47.519 in that. And so I was like, why don't I just 00:26:47.519 --> 00:26:49.559 map out the process flow of what it's like to 00:26:49.559 --> 00:26:52.779 be a Crohn's patient? And so I mapped out from 00:26:52.779 --> 00:26:58.000 diagnosis to even pre -diagnosis to getting diagnosed 00:26:58.000 --> 00:27:00.500 to getting your treatment to managing flares 00:27:00.500 --> 00:27:02.750 to continuing on. What are all the different 00:27:02.750 --> 00:27:05.470 steps that a typical patient goes through? And 00:27:05.470 --> 00:27:09.329 I identified one point that had been really, 00:27:09.410 --> 00:27:11.970 really painful in my life, which was around diet. 00:27:12.529 --> 00:27:16.789 And that was in figuring out which foods are 00:27:16.789 --> 00:27:18.630 triggering my symptoms and which diet actually 00:27:18.630 --> 00:27:22.690 works for me to feel better. And as I had more 00:27:22.690 --> 00:27:25.529 and more conversations with patients, I realized 00:27:25.529 --> 00:27:27.390 that this wasn't just a me problem. This was 00:27:27.390 --> 00:27:29.799 a problem that a lot of people were having. And 00:27:29.799 --> 00:27:32.220 it inspired us to start building Tummy. And so 00:27:32.220 --> 00:27:35.559 the idea behind Tummy is that we provide personalized, 00:27:35.660 --> 00:27:39.160 actionable insights for what foods and other 00:27:39.160 --> 00:27:41.319 lifestyle factors are triggering people's symptoms. 00:27:41.779 --> 00:27:44.000 The long -term vision is to create something 00:27:44.000 --> 00:27:46.960 holistic so that end -to -end, a patient can 00:27:46.960 --> 00:27:51.799 come on, they can write down what their diagnosis 00:27:51.799 --> 00:27:55.500 is, age, other demographic factors that might 00:27:55.500 --> 00:27:58.779 be relevant, and then... Over time, as we learn 00:27:58.779 --> 00:28:00.779 more about them and their specific condition, 00:28:01.000 --> 00:28:03.519 their specific reactions, we're able to provide 00:28:03.519 --> 00:28:06.680 clearer patterns and insights into what foods 00:28:06.680 --> 00:28:10.660 are specifically triggering them. And as a patient 00:28:10.660 --> 00:28:12.799 myself, I've tried so many different diets. I 00:28:12.799 --> 00:28:15.200 saw a dietician and they give you this food journal 00:28:15.200 --> 00:28:17.380 where you're mainly writing everything down and 00:28:17.380 --> 00:28:18.920 then you're looking through it trying to figure 00:28:18.920 --> 00:28:21.920 out, okay. Was it because I had potatoes this 00:28:21.920 --> 00:28:24.519 one day or was it because I had something fried 00:28:24.519 --> 00:28:27.019 or is it some other ingredient that I'm not even 00:28:27.019 --> 00:28:29.940 realizing? And so really what we're trying to 00:28:29.940 --> 00:28:31.960 do is to simplify that process for the patient 00:28:31.960 --> 00:28:33.980 and to give them more control in their journey 00:28:33.980 --> 00:28:35.759 so that they don't have to worry. They don't 00:28:35.759 --> 00:28:38.019 have to spend as much time writing down, logging 00:28:38.019 --> 00:28:39.519 every single thing and then figuring out the 00:28:39.519 --> 00:28:41.779 patterns. Instead, you can just take out your 00:28:41.779 --> 00:28:43.240 phone, take a picture of what you're eating, 00:28:43.359 --> 00:28:45.819 log when you have symptoms, and then let us on 00:28:45.819 --> 00:28:48.599 the back end use machine learning to figure out 00:28:48.599 --> 00:28:51.440 like specific to you. what is causing your symptoms, 00:28:51.619 --> 00:28:54.200 and what can you change to feel better. That's 00:28:54.200 --> 00:28:58.039 a great initiative. And this is at trytommy .com. 00:28:58.200 --> 00:29:00.579 So people should definitely check that out, especially 00:29:00.579 --> 00:29:02.559 for people. And I really, I agree with you. I 00:29:02.559 --> 00:29:05.299 mean, you yourself sort of brought the aspect 00:29:05.299 --> 00:29:07.500 of nutrition into sort of your disease management, 00:29:07.559 --> 00:29:09.819 and it really seems to be going into that direction 00:29:09.819 --> 00:29:15.039 as well. So this is a really cool project. In 00:29:15.039 --> 00:29:18.500 the spirit of helping people, as we kind of get 00:29:18.500 --> 00:29:22.759 to the end here, Especially as someone who spent 00:29:22.759 --> 00:29:25.960 many, many years sort of looking for a mission 00:29:25.960 --> 00:29:29.079 without too much success, like we discussed, 00:29:29.339 --> 00:29:36.339 what would be your message to folks who are struggling 00:29:36.339 --> 00:29:40.299 with active Crohn's and who are potentially not 00:29:40.299 --> 00:29:43.119 really seeing an end in sight, right? People 00:29:43.119 --> 00:29:46.500 who are also going or jumping from one treatment. 00:29:46.970 --> 00:29:50.009 to another without too much improvement based 00:29:50.009 --> 00:29:52.250 on your own experience with the disease and how 00:29:52.250 --> 00:29:54.849 the disease has changed you. What would you tell 00:29:54.849 --> 00:29:58.309 those people? Number one is community. It is 00:29:58.309 --> 00:30:01.829 so important to have a support system around 00:30:01.829 --> 00:30:06.569 you because Crohn's, colitis, IBD in general 00:30:06.569 --> 00:30:10.190 can be so isolating and it's very easy to self 00:30:10.190 --> 00:30:15.069 -isolate as well. And so making sure that you 00:30:15.559 --> 00:30:17.279 You might not have a ton of energy. You might 00:30:17.279 --> 00:30:19.920 not be able to go out and see people all the 00:30:19.920 --> 00:30:23.240 time, but make some effort, I think, to sustain 00:30:23.240 --> 00:30:26.880 that community and also just be open. I was so 00:30:26.880 --> 00:30:30.359 worried about people seeing me as weaker or less 00:30:30.359 --> 00:30:34.519 capable or less able. But when I shared, hey, 00:30:34.619 --> 00:30:37.559 I'm feeling like really sick today, I'm having 00:30:37.559 --> 00:30:39.640 like these symptoms, people were very accommodating. 00:30:39.680 --> 00:30:41.900 Like people were not like, oh, you're weaker, 00:30:41.960 --> 00:30:43.480 you're less capable. People were like, oh, how 00:30:43.480 --> 00:30:47.339 can I help? What can I do? And so I think learning 00:30:47.339 --> 00:30:50.500 to be okay with relying on others, especially 00:30:50.500 --> 00:30:53.500 when you're an active disease, is so, so important. 00:30:53.799 --> 00:31:01.180 On top of that, there are some darker periods 00:31:01.180 --> 00:31:04.599 where it does feel hopeless. I think it's difficult 00:31:04.599 --> 00:31:07.880 to give generalizations or platitudes of, like, 00:31:07.920 --> 00:31:11.599 you will find a solution or... like you will 00:31:11.599 --> 00:31:13.700 find a cure the thing that works for you because 00:31:13.700 --> 00:31:15.539 it's it's so person to person you might end up 00:31:15.539 --> 00:31:20.059 having to get surgery but I think one thing that 00:31:20.059 --> 00:31:24.380 kept me going was knowing that even during the 00:31:24.380 --> 00:31:28.380 periods where my disease was super active and 00:31:28.380 --> 00:31:31.599 I would feel so so bad every day were the little 00:31:31.599 --> 00:31:33.640 moments of happiness or the little moments of 00:31:33.640 --> 00:31:36.079 beauty that I saw in the world and really savoring 00:31:36.079 --> 00:31:39.220 those things even when I was You know, at the 00:31:39.220 --> 00:31:42.099 deepest, darkest depths of my depression, just 00:31:42.099 --> 00:31:46.119 seeing snow fall. I went to school in Tennessee. 00:31:46.299 --> 00:31:49.039 It never snows there. And seeing, you know, just 00:31:49.039 --> 00:31:52.079 like a white blanket on the ground outside with 00:31:52.079 --> 00:31:55.119 all the snow out there. Or you have a friend 00:31:55.119 --> 00:31:57.180 who comes by and brings you food one day, even 00:31:57.180 --> 00:31:59.240 though you didn't ask, and you realize how kind 00:31:59.240 --> 00:32:02.240 and nice people are. I think just like really 00:32:02.240 --> 00:32:05.559 savoring those small, beautiful little moments 00:32:05.559 --> 00:32:08.519 in your life. um to to push through at least 00:32:08.519 --> 00:32:12.000 some of the darkness is that what you would tell 00:32:12.000 --> 00:32:15.480 your own self as a nine -year -old if you could 00:32:15.480 --> 00:32:18.200 go back in time and and talk to that nine -year 00:32:18.200 --> 00:32:20.960 -old kid yeah it's it's funny because i do a 00:32:20.960 --> 00:32:22.940 lot of advocacy work with the crones and colitis 00:32:22.940 --> 00:32:27.259 foundation as well um so i've spoken since a 00:32:27.259 --> 00:32:30.779 kid spoken at a few events and i do lunch and 00:32:30.779 --> 00:32:34.099 learns and i've helped on a lot of different 00:32:34.099 --> 00:32:36.960 events and last year i was the the mission speaker 00:32:36.960 --> 00:32:42.240 for one of their fundraising events. And I had 00:32:42.240 --> 00:32:45.380 like an ending line of like, what did I wish 00:32:45.380 --> 00:32:51.619 nine -year -old me knew at the time? And I think 00:32:51.619 --> 00:32:56.500 the biggest thing is it's okay to not feel okay. 00:32:57.079 --> 00:33:00.579 And it's okay to be open about that. And I think 00:33:00.579 --> 00:33:03.500 the more that you don't try to carry the burden 00:33:03.500 --> 00:33:06.599 of pain on your own, the easier it becomes to 00:33:06.599 --> 00:33:09.119 share that pain with others and to sustain onwards. 00:33:09.779 --> 00:33:13.940 Honestly, I think that is the perfect word and 00:33:13.940 --> 00:33:18.579 perfect phrasing to end it. I think you've said 00:33:18.579 --> 00:33:21.900 it all. And I want to thank you so much for sharing 00:33:21.900 --> 00:33:25.059 your story and also what you're doing. I hope 00:33:25.059 --> 00:33:28.920 for you that you'll find some peace and that 00:33:28.920 --> 00:33:31.519 at least, you know, even though you haven't... 00:33:31.789 --> 00:33:33.950 reached remission yet that you kind of stay where 00:33:33.950 --> 00:33:36.069 you are now with your combination of therapy 00:33:36.069 --> 00:33:39.170 and also nutrition and um keep advocating and 00:33:39.170 --> 00:33:41.690 and keep doing that that work you know in the 00:33:41.690 --> 00:33:44.890 name of advocacy and ibd awareness uh it's really 00:33:44.890 --> 00:33:47.569 great so thanks so much kyle and uh all the best 00:33:47.569 --> 00:33:49.789 to you yeah thank you so much frank and i really 00:33:49.789 --> 00:33:51.589 love what you're doing with this show and and 00:33:51.589 --> 00:33:53.890 all the other work in the space um i feel like 00:33:53.890 --> 00:33:56.849 visibility is so important and providing community 00:33:56.849 --> 00:33:59.980 and Just hearing other people's stories is so 00:33:59.980 --> 00:34:01.920 transformative. And so thank you so much for 00:34:01.920 --> 00:34:03.859 doing this. And we're going to both keep doing 00:34:03.859 --> 00:34:08.000 that. Great. Thank you, Kyle. That's it for today's 00:34:08.000 --> 00:34:11.139 episode of Colitis Unfiltered. I'm Frank Tabering. 00:34:11.239 --> 00:34:14.539 And if this hit home or hit your gut, do us a 00:34:14.539 --> 00:34:17.340 favor. Subscribe to the show and follow us at 00:34:17.340 --> 00:34:20.639 Colitis Unfiltered on YouTube, Substack, Instagram, 00:34:20.860 --> 00:34:23.940 Threads, TikTok, and Reddit. We'll see you soon 00:34:23.940 --> 00:34:26.099 for more inspiring stories from the bathroom 00:34:26.099 --> 00:34:26.380 floor.