WEBVTT 00:00:02.140 --> 00:00:04.599 When your body talks, listen, and that's what 00:00:04.599 --> 00:00:07.620 I didn't do for the first 22, 23 years of my 00:00:07.620 --> 00:00:10.919 life. I was just on go, go, go, go, disregard 00:00:10.919 --> 00:00:13.259 everything. I'm a, you know, I need to just stay 00:00:13.259 --> 00:00:16.160 focused. But now it's like, if I feel that flare 00:00:16.160 --> 00:00:19.739 coming on, I'ma just sit back and I'ma just let 00:00:19.739 --> 00:00:22.760 whatever needs to happen, happen without trying 00:00:22.760 --> 00:00:26.140 to push through it. This is Lewis, who got diagnosed 00:00:26.140 --> 00:00:28.890 with ulcerative colitis at age 23. in Doncaster, 00:00:29.089 --> 00:00:32.490 UK. Louis quickly found a treatment that would 00:00:32.490 --> 00:00:35.250 keep most of his IBD symptoms in check, but the 00:00:35.250 --> 00:00:37.810 impact of chronic illness forced him to re -evaluate 00:00:37.810 --> 00:00:41.030 how he treats his body and mind. He would eventually 00:00:41.030 --> 00:00:44.270 be re -diagnosed with Crohn's, and today on the 00:00:44.270 --> 00:00:46.890 Colitis Unfiltered podcast, he shares how he 00:00:46.890 --> 00:00:49.810 manages flares, his good days, and his passion 00:00:49.810 --> 00:00:52.829 for awareness. My name is Frank Tabering, and 00:00:52.829 --> 00:00:55.869 Louis, welcome to the show. Hi, nice to meet 00:00:55.869 --> 00:00:58.619 you. Let's start at the very beginning. Tell 00:00:58.619 --> 00:01:01.960 me a little bit about when you noticed that something 00:01:01.960 --> 00:01:04.680 was wrong, right? Like those first symptoms that 00:01:04.680 --> 00:01:08.620 crept up for you. How did it all start? It's 00:01:08.620 --> 00:01:11.260 quite weird, actually. It was like September 00:01:11.260 --> 00:01:15.599 time of, I think it was 2024. I literally woke 00:01:15.599 --> 00:01:20.280 up one day and I kid you not, I could not stop 00:01:20.280 --> 00:01:22.879 going to the toilet. And I was like, okay, this 00:01:22.879 --> 00:01:26.019 is a little bit weird. And it wasn't... I don't 00:01:26.019 --> 00:01:27.579 know how graphic we can get on here, but it wasn't 00:01:27.579 --> 00:01:30.719 like solid poop either. It was like just yellow, 00:01:30.819 --> 00:01:33.459 green water. And I was like, I don't know what 00:01:33.459 --> 00:01:35.319 I ate last night, but I ain't eating that again. 00:01:35.620 --> 00:01:38.739 And it went into like a week and I thought, okay. 00:01:38.799 --> 00:01:40.400 And that's when I started searching. I was like 00:01:40.400 --> 00:01:44.019 on Google, I was like, how long is diarrhea normal 00:01:44.019 --> 00:01:46.099 for? And it was like, you know, like a couple 00:01:46.099 --> 00:01:48.340 of days up to a week is fine. Anything after 00:01:48.340 --> 00:01:50.280 that, you probably should worry a little bit. 00:01:50.299 --> 00:01:52.159 So I was like, oh, I'm fine. Then it got to like 00:01:52.159 --> 00:01:55.109 the two week mark. I was like. Okay, this is 00:01:55.109 --> 00:01:57.250 like 20 times a day. And this is when I started 00:01:57.250 --> 00:01:59.269 bleeding a lot as well. Like I've always been 00:01:59.269 --> 00:02:00.950 like a bleeder. I don't know why, but I just 00:02:00.950 --> 00:02:03.450 bleed a lot. So for like two weeks, it was like 00:02:03.450 --> 00:02:07.010 just blood, mucus, horrible diarrhea. And I was 00:02:07.010 --> 00:02:09.969 like, yeah, I think there's a problem. So then 00:02:09.969 --> 00:02:12.569 I called the doctors up. I went in and she went, 00:02:12.629 --> 00:02:14.550 oh, let's do a stool sample. You know, because 00:02:14.550 --> 00:02:16.530 I had no other symptoms. It was just that I was 00:02:16.530 --> 00:02:20.110 like, oh, I should be fine. But then I did the 00:02:20.110 --> 00:02:22.030 stool sample and they got back to me like straight 00:02:22.030 --> 00:02:24.520 away. And it was like. something is wrong i was 00:02:24.520 --> 00:02:26.379 like well i could have kind of told you that 00:02:26.379 --> 00:02:28.500 i am pooing a lot and she was like yeah your 00:02:28.500 --> 00:02:31.460 inflammation is off the charts um it's not the 00:02:31.460 --> 00:02:33.979 highest it can be i was like okay she said come 00:02:33.979 --> 00:02:36.180 in i was like fine she's like pressing on my 00:02:36.180 --> 00:02:38.240 stomach and she's like are you having any pain 00:02:38.240 --> 00:02:40.860 i was like no like i generally feel fine besides 00:02:40.860 --> 00:02:43.780 diarrhea a lot i feel great and she was like 00:02:43.780 --> 00:02:45.699 um you should be like jumping off the bed in 00:02:45.699 --> 00:02:48.439 pain i was like i'm not so that's when it it 00:02:48.439 --> 00:02:51.139 went into like the realm of like what is going 00:02:51.139 --> 00:02:52.879 on because like i didn't really have any of these 00:02:52.879 --> 00:02:55.580 symptoms or anything else like any of the markers 00:02:55.580 --> 00:02:58.659 for Crohn's colitis anything like that but the 00:02:58.659 --> 00:03:00.699 inflammation was that high she was like no like 00:03:00.699 --> 00:03:04.080 something is wrong so yeah that's kind of how 00:03:04.080 --> 00:03:07.099 it started so yeah that's crazy by the way you 00:03:07.099 --> 00:03:08.900 asked you know how graphic you can be here this 00:03:08.900 --> 00:03:10.740 is called talking shit for a reason so you can 00:03:10.740 --> 00:03:14.860 just speak your heart's content you know so i 00:03:14.860 --> 00:03:17.280 was like yeah i was just shitting for sure yeah 00:03:17.280 --> 00:03:19.419 cool yeah exactly no no no worries about that 00:03:19.419 --> 00:03:21.900 so that's interesting that so you just you just 00:03:21.900 --> 00:03:24.060 said like it just started just like this so what 00:03:24.060 --> 00:03:26.020 was it literally i mean were you going through 00:03:26.020 --> 00:03:28.479 through any stress in your life anything in particular 00:03:28.479 --> 00:03:30.520 or it was just literally you would just complete 00:03:30.520 --> 00:03:33.479 normal day normal night you go to sleep you wake 00:03:33.479 --> 00:03:36.199 up and and and you have to go to the toilet yeah 00:03:36.199 --> 00:03:39.240 literally and that was the bizarre thing that's 00:03:39.240 --> 00:03:41.379 like some people can kind of pinpoint i was like 00:03:41.379 --> 00:03:43.419 oh i was kind of stressed at this point or they 00:03:43.419 --> 00:03:45.530 could maybe feel it coming on a little bit me 00:03:45.530 --> 00:03:47.569 i kid you not i was in the best shape of my life 00:03:47.569 --> 00:03:50.389 i was going to gym i eat good all the time anyway 00:03:50.389 --> 00:03:52.770 i don't drink i don't smoke nothing so i was 00:03:52.770 --> 00:03:56.189 like hmm like me no there can't be something 00:03:56.189 --> 00:03:59.669 wrong with me 23 fit but then it turns out i 00:03:59.669 --> 00:04:01.909 woke up that one day and i was just like it's 00:04:01.909 --> 00:04:04.810 crazy my life just went from like normal to just 00:04:04.810 --> 00:04:07.830 completely different and it was like nothing 00:04:07.830 --> 00:04:10.129 could have prepared me for that moment but yeah 00:04:10.129 --> 00:04:12.960 that's just how it how it happened i guess Yeah, 00:04:13.000 --> 00:04:16.160 that's definitely an unusual sort of start to 00:04:16.160 --> 00:04:17.980 a colitis journey, especially like when you mentioned 00:04:17.980 --> 00:04:19.779 that you were still feeling okay, right? Because 00:04:19.779 --> 00:04:22.779 for me, like with the first sort of bowel movements, 00:04:22.879 --> 00:04:24.480 then first diarrhea, especially when the blood 00:04:24.480 --> 00:04:26.540 showed up, like there was like some crippling 00:04:26.540 --> 00:04:29.279 abdominal pain that started right away, right? 00:04:29.420 --> 00:04:31.740 And then it's just that mix of like diarrhea, 00:04:31.779 --> 00:04:34.860 but also pain at the same time. So quite unusual. 00:04:35.920 --> 00:04:38.980 So then talk a little bit about through diagnosis. 00:04:39.360 --> 00:04:42.620 So doctor said something is wrong. Did they pull 00:04:42.620 --> 00:04:45.839 you in for a colonoscopy and then gave you the 00:04:45.839 --> 00:04:50.000 official diagnosis, colitis? And if so, how did 00:04:50.000 --> 00:04:53.019 the doctor break the news to you? And had you 00:04:53.019 --> 00:04:55.100 heard of colitis before? Was it all completely 00:04:55.100 --> 00:04:58.579 new to you? It was September time I started having 00:04:58.579 --> 00:05:01.939 the diarrhea, the shits. And then obviously I 00:05:01.939 --> 00:05:03.639 was like, okay, something's wrong. Then he said, 00:05:03.899 --> 00:05:05.560 okay what we need to do is because they did a 00:05:05.560 --> 00:05:07.740 blood test my blood test came fine as well so 00:05:07.740 --> 00:05:09.139 i was like there's like what like what's going 00:05:09.139 --> 00:05:10.779 on with you so he said we're gonna have to do 00:05:10.779 --> 00:05:13.860 a colonoscopy and at first i was like again the 00:05:13.860 --> 00:05:16.199 first 23 years of my life i was healthy i never 00:05:16.199 --> 00:05:18.399 went the doctors never went to the hospital so 00:05:18.399 --> 00:05:20.639 i was like what is that and i was like essentially 00:05:20.639 --> 00:05:22.639 it's a camera up your back end i was like huh 00:05:22.639 --> 00:05:24.660 there was like i was like you're kidding right 00:05:24.660 --> 00:05:26.699 like no they'll go all inside and i was like 00:05:26.699 --> 00:05:30.279 i was so scared but then he went with the nhs 00:05:30.279 --> 00:05:32.000 it's quite overwhelmed at the minute it might 00:05:32.000 --> 00:05:34.879 take a while to get you know, the procedure done. 00:05:34.959 --> 00:05:36.980 So I was like, cool. So then it took all the 00:05:36.980 --> 00:05:39.620 way up till December. So from September to December, 00:05:39.899 --> 00:05:43.100 I was waiting that time, no medication because 00:05:43.100 --> 00:05:44.500 he didn't want to give me anything in case he 00:05:44.500 --> 00:05:46.819 didn't know what was wrong. So I was like, oh, 00:05:46.879 --> 00:05:49.240 damn, like, and then I only got in on December 00:05:49.240 --> 00:05:50.959 because it was like, we have a cancellation tomorrow. 00:05:51.199 --> 00:05:53.819 Can you come in? It was like, yeah, I guess. 00:05:54.060 --> 00:05:55.899 So if I didn't get that cancellation, I might 00:05:55.899 --> 00:05:58.839 have waited another two. I got my colonoscopy 00:05:58.839 --> 00:06:00.779 and it was like, looking around, it was like, 00:06:00.839 --> 00:06:02.620 oh, everything's looking fine. I was like. oh 00:06:02.620 --> 00:06:05.000 great then he got to one point he went would 00:06:05.000 --> 00:06:06.980 you look at their screen for me i was like i 00:06:06.980 --> 00:06:08.600 don't really want to look it's a bit gruesome 00:06:08.600 --> 00:06:10.819 but he said please look i said okay and i looked 00:06:10.819 --> 00:06:13.019 and i don't know if you know you know what tar 00:06:13.019 --> 00:06:16.319 is it's like black tar yeah and it looks like 00:06:16.319 --> 00:06:18.839 that in my in my bowels and i was like oh like 00:06:18.839 --> 00:06:21.639 what is that and he he was going through this 00:06:21.639 --> 00:06:24.019 it was only one section it was really bad and 00:06:24.019 --> 00:06:25.600 he went through this section he couldn't see 00:06:25.600 --> 00:06:27.860 and it just got that bad i was like what is that 00:06:27.860 --> 00:06:30.240 and he said it's like you're almost insides are 00:06:30.240 --> 00:06:32.899 rotting because you're attacking yourself he's 00:06:32.899 --> 00:06:36.199 doing this and i just thought oh so then he said 00:06:36.199 --> 00:06:38.560 all right cool so we can see straight away he 00:06:38.560 --> 00:06:40.139 i think he told me straight away he was like 00:06:40.139 --> 00:06:43.459 there's active colitis like it's there like you 00:06:43.459 --> 00:06:45.740 can see it i was all right and then he brought 00:06:45.740 --> 00:06:48.720 me back out and he was like um yeah so you have 00:06:48.720 --> 00:06:51.579 active prokaryotes so it's like it affects your 00:06:51.579 --> 00:06:54.699 rectum more but it can obviously go to further 00:06:54.699 --> 00:06:57.540 up and stuff and i had a lot of polyps as well 00:06:57.540 --> 00:06:59.639 which obviously i want a new and they remove 00:06:59.639 --> 00:07:02.680 like two polyps and i had one right near my rectum 00:07:02.680 --> 00:07:04.740 but he couldn't remove it because it's too sensitive 00:07:04.740 --> 00:07:08.459 um and he said that maybe a you're bleeding from 00:07:08.459 --> 00:07:10.699 the inflammation but he said you also could be 00:07:10.699 --> 00:07:12.500 bleeding from that polyp because it just into 00:07:12.500 --> 00:07:15.459 you know irritates it a lot so yeah basically 00:07:15.459 --> 00:07:18.220 came out he said you've got colitis we're going 00:07:18.220 --> 00:07:20.160 to do a biopsy and then obviously we'll get back 00:07:20.160 --> 00:07:22.279 to you like with further results but in that 00:07:22.279 --> 00:07:24.420 moment it was like You definitely have colitis. 00:07:24.439 --> 00:07:26.480 There is something wrong with you. And then he 00:07:26.480 --> 00:07:29.420 put me onto enemas and I was like, yeah, yeah. 00:07:30.019 --> 00:07:34.439 That was it. Okay, so colitis, it's official. 00:07:34.800 --> 00:07:37.540 How does it progress from here? Like you said, 00:07:37.620 --> 00:07:41.060 you put on enemas, but are they helping? Over 00:07:41.060 --> 00:07:44.480 the next weeks, months, are they adding any other 00:07:44.480 --> 00:07:47.420 treatment? And sort of how did you settle into 00:07:47.420 --> 00:07:52.870 navigating this disease? Yeah, so... um as soon 00:07:52.870 --> 00:07:57.310 as i like left the hospital they um gave me the 00:07:57.310 --> 00:08:01.269 prescription which was pentasia enemas um and 00:08:01.269 --> 00:08:03.110 then i also have to take eight tablets a day 00:08:03.110 --> 00:08:04.750 as well i believe on top of that so like them 00:08:04.750 --> 00:08:08.009 in the morning the enema at night and when they 00:08:08.009 --> 00:08:09.569 said oh we're going to give you like you know 00:08:09.569 --> 00:08:10.970 some medication i thought they're going to give 00:08:10.970 --> 00:08:14.310 me a few tablets it turns out i left the pharmacy 00:08:14.310 --> 00:08:17.389 with like six big bags of boxes of enemas and 00:08:17.389 --> 00:08:19.939 i was like what are these like what on earth 00:08:19.939 --> 00:08:21.920 are these things and then obviously I got to 00:08:21.920 --> 00:08:24.339 the night time and my mum was a carer so she 00:08:24.339 --> 00:08:25.959 knew what end of the war and I didn't really 00:08:25.959 --> 00:08:28.000 understand it and she's like you have to go on 00:08:28.000 --> 00:08:29.540 your side and put it up and I was like what like 00:08:29.540 --> 00:08:31.600 up my bum she was like yeah and I was like huh 00:08:31.600 --> 00:08:35.019 so then I did it and it's a really weird feeling 00:08:35.019 --> 00:08:36.360 end of the month because when you do it you're 00:08:36.360 --> 00:08:39.059 not allowed to pass for like 30 minutes but it 00:08:39.059 --> 00:08:41.580 feels like you could straight away so it was 00:08:41.580 --> 00:08:45.240 like I did that for around a month or so and 00:08:45.240 --> 00:08:48.440 then They helped a very little bit, but not a 00:08:48.440 --> 00:08:50.179 crazy amount. They helped a little bit and I 00:08:50.179 --> 00:08:52.419 found a bit of relief in them. And then I actually 00:08:52.419 --> 00:08:55.899 went to my consultant and he said, yes, you've 00:08:55.899 --> 00:08:58.120 actually got Crohn's colitis. So he said, the 00:08:58.120 --> 00:09:01.039 Crohn's is causing the prokitis down that side. 00:09:01.179 --> 00:09:03.139 And I was like, all right. So he said, we need 00:09:03.139 --> 00:09:04.600 to kind of put you on something a little bit 00:09:04.600 --> 00:09:08.539 stronger, you know? So yeah, then I went on to 00:09:08.539 --> 00:09:12.639 prednisolone, prednisine. one of them. And they 00:09:12.639 --> 00:09:15.379 was pretty good, but I got big moon face, which 00:09:15.379 --> 00:09:18.379 wasn't, you know, which wasn't like too flattering, 00:09:18.500 --> 00:09:22.600 but yeah. And then I got that. And then further, 00:09:22.679 --> 00:09:25.299 further now after the eight week course, I'm 00:09:25.299 --> 00:09:27.340 on now on adamilumab, I believe it's called, 00:09:27.460 --> 00:09:29.639 the injections. And these have worked a treat. 00:09:29.740 --> 00:09:33.019 Like I kid you not, I literally feel like, not 00:09:33.019 --> 00:09:35.059 my old self, like I still kind of feel a bit 00:09:35.059 --> 00:09:38.179 off, but like in general, like I feel like really 00:09:38.179 --> 00:09:41.710 good. So yeah. So in that case, do you consider 00:09:41.710 --> 00:09:43.470 yourself in remission currently? Are you still 00:09:43.470 --> 00:09:46.889 symptomatic or where are you at today? I would 00:09:46.889 --> 00:09:51.029 say pretty much remission. I get nauseous sometimes. 00:09:51.590 --> 00:09:54.450 The only thing that no medication has been able 00:09:54.450 --> 00:09:56.230 to stop is the joint pain. Like I never really 00:09:56.230 --> 00:09:58.909 had joint pain before, but both of my knees, 00:09:59.129 --> 00:10:02.870 my elbows and my wrists, I really feel it all 00:10:02.870 --> 00:10:06.830 the time. So without the joint pain, I would 00:10:06.830 --> 00:10:10.600 say like I'm... like 80 kind of how i was but 00:10:10.600 --> 00:10:14.179 the joint pain is really quite bad on me so stuff 00:10:14.179 --> 00:10:16.659 like it's like one of those side effects to to 00:10:16.659 --> 00:10:20.799 having the the ibd yeah it's not just you know 00:10:20.799 --> 00:10:25.269 focused on your gut or your rectum but You know, 00:10:25.330 --> 00:10:27.769 there's all these other sort of, I don't know 00:10:27.769 --> 00:10:29.009 if you can call them side effects, but other 00:10:29.009 --> 00:10:30.850 conditions potentially that crop up. You know, 00:10:30.850 --> 00:10:33.409 me, I've been in remission for 12 years now. 00:10:33.629 --> 00:10:35.769 And yet, you know, I think I have periods where 00:10:35.769 --> 00:10:38.809 chronic fatigue sets in and it just kind of like 00:10:38.809 --> 00:10:40.250 hits me like that, you know, for a couple of 00:10:40.250 --> 00:10:42.289 weeks. And I had to try to make sense of it. 00:10:42.330 --> 00:10:44.309 I'm thinking like, oh, am I working too much? 00:10:44.389 --> 00:10:46.450 Is it like the season's changing? But I'm realizing, 00:10:46.549 --> 00:10:49.049 no, I mean, you still have a disease, you know, 00:10:49.070 --> 00:10:51.190 that's going on. It's just, it's in remission, 00:10:51.210 --> 00:10:53.840 right? I guess everybody has their own struggles. 00:10:54.019 --> 00:10:56.720 But yeah, I'm good to hear that you're managing 00:10:56.720 --> 00:10:58.840 right now. So you mentioned earlier, obviously, 00:10:58.879 --> 00:11:00.740 before your diagnosis, you were super fit, you 00:11:00.740 --> 00:11:02.440 know, best shape of your life. Is this something 00:11:02.440 --> 00:11:04.600 that, you know, you've sort of reclaimed now? 00:11:04.700 --> 00:11:08.960 Did you get that back? And what kind of lifestyle 00:11:08.960 --> 00:11:12.980 changes have you made, you know, since your diagnosis? 00:11:14.179 --> 00:11:16.980 Before my Crohn's, well, my colitis, well, my 00:11:16.980 --> 00:11:20.240 diagnosis in general, before that happened, like 00:11:20.240 --> 00:11:24.179 I was a musician and I was... I'm so, I've always 00:11:24.179 --> 00:11:27.059 been like a really ambitious person. I work stupidly 00:11:27.059 --> 00:11:28.840 hard. Sometimes I feel like I'm borderline insane, 00:11:29.000 --> 00:11:31.700 right? So when I did that and then I got the 00:11:31.700 --> 00:11:34.879 diagnosis, I was like, it did kind of take a 00:11:34.879 --> 00:11:36.700 little bit of energy from me. It felt like the 00:11:36.700 --> 00:11:39.299 task that I was usually doing day to day definitely 00:11:39.299 --> 00:11:43.519 was taking, I'd say like to do the same tasks, 00:11:43.679 --> 00:11:45.779 it's like double the effort, but you're still 00:11:45.779 --> 00:11:48.779 only managing the same amount of tasks. So my 00:11:48.779 --> 00:11:51.299 mindset is like, I don't want to be defined by 00:11:51.299 --> 00:11:55.340 this. And I won't let it. So my my point of view 00:11:55.340 --> 00:11:57.799 is if I wake up in the morning and I feel a bit 00:11:57.799 --> 00:12:00.740 off, I'm still going to do what I need to do. 00:12:01.080 --> 00:12:03.440 Obviously, if I'm flaring, I need rest. I will 00:12:03.440 --> 00:12:05.600 I will rest with my flouts when the flouts do 00:12:05.600 --> 00:12:07.519 come. They are really bad. And I'm not going 00:12:07.519 --> 00:12:09.700 to try power through that because that'd be stupid. 00:12:09.759 --> 00:12:11.820 Right. But, you know, in the days when you wake 00:12:11.820 --> 00:12:14.019 up and you do feel a bit off, I think, you know 00:12:14.019 --> 00:12:17.200 what? If every single day I didn't do what I 00:12:17.200 --> 00:12:19.600 wanted to do because I felt off, I would get 00:12:19.600 --> 00:12:22.250 nothing done and I would just. waste my life 00:12:22.250 --> 00:12:25.610 away and again me being such a strong -minded 00:12:25.610 --> 00:12:28.190 person and like I have a dream to get I have 00:12:28.190 --> 00:12:30.409 aspirations just because I've got a chronic illness 00:12:30.409 --> 00:12:33.070 doesn't mean that stops right and I always say 00:12:33.070 --> 00:12:35.250 just because it's harder doesn't mean it's impossible 00:12:35.250 --> 00:12:37.769 so yeah that's kind of my motto to life right 00:12:37.769 --> 00:12:41.370 now I go to gym roughly the same as I used to 00:12:41.370 --> 00:12:44.509 I roughly do the same amount of tasks but it 00:12:44.509 --> 00:12:47.309 is a lot harder and I do feel like I need to 00:12:47.309 --> 00:12:50.990 rest a little bit longer but um yeah i wouldn't 00:12:50.990 --> 00:12:54.549 say i'm in like a debilitating state but i do 00:12:54.549 --> 00:12:58.889 believe that my um chronic illness is quite mild 00:12:58.889 --> 00:13:01.049 in comparison because i do see some people and 00:13:01.049 --> 00:13:03.850 they are bedridden and people have a lot of complications 00:13:03.850 --> 00:13:06.610 me i'm only a year in i've had no real complications 00:13:06.610 --> 00:13:10.450 which i'm thankful for but um yeah i'm just happy 00:13:10.450 --> 00:13:13.070 with the state that i'm in for now and i'm going 00:13:13.070 --> 00:13:15.289 to hopefully continue to try and stay in this 00:13:15.289 --> 00:13:17.909 kind of state but yeah that's my outlook on life 00:13:17.909 --> 00:13:21.629 and that's how my life is now so yeah no that's 00:13:21.629 --> 00:13:23.509 great no i mean of course you know there's there's 00:13:23.509 --> 00:13:25.330 always people out there who are sort of worse 00:13:25.330 --> 00:13:27.909 off but i always i'm always cautious to not really 00:13:27.909 --> 00:13:31.610 compare you know one you know uh condition to 00:13:31.610 --> 00:13:34.710 another i mean everybody has their chronic illness 00:13:34.710 --> 00:13:36.169 that they're dealing with and especially in the 00:13:36.169 --> 00:13:38.940 world of ibd so Everybody has their own challenges, 00:13:39.000 --> 00:13:41.019 right? Yeah, definitely. It's like we say, so 00:13:41.019 --> 00:13:44.500 we're all trying to wake up every day feeling 00:13:44.500 --> 00:13:47.500 our best. Sometimes it's not possible. But what 00:13:47.500 --> 00:13:50.649 I'm really seeing is that no matter... how dire 00:13:50.649 --> 00:13:54.110 your situation is with your IBD. Like everybody 00:13:54.110 --> 00:13:56.389 has good moments, everybody has bad moments. 00:13:56.529 --> 00:14:00.090 Whether it's remission through medication, whether 00:14:00.090 --> 00:14:03.149 it's surgery, the consensus is when you find 00:14:03.149 --> 00:14:06.610 what kind of works for you, then we're all feeling 00:14:06.610 --> 00:14:08.590 better, right? And that's what we all strive 00:14:08.590 --> 00:14:11.350 for. So I don't think that any of us needs to 00:14:11.350 --> 00:14:13.549 make any excuses just because our journey might 00:14:13.549 --> 00:14:17.269 be milder or shorter than somebody else's. I 00:14:17.269 --> 00:14:19.190 always say we're all in this shit together, right? 00:14:19.370 --> 00:14:22.309 And so as long as there's no cure, you know, 00:14:22.370 --> 00:14:25.710 we're still in it together. Yeah, I agree. Yeah. 00:14:26.149 --> 00:14:28.750 So you said it yourself, you know, your IBD journey 00:14:28.750 --> 00:14:32.009 is still quite young over your year dealing with 00:14:32.009 --> 00:14:36.070 it. How do you cope with sort of this fear that, 00:14:36.129 --> 00:14:39.649 hey, there might be a stronger flare coming, 00:14:39.870 --> 00:14:42.549 right? Or maybe the next flare is the one that 00:14:42.549 --> 00:14:45.549 tips you over the edge or medication stops working, 00:14:45.610 --> 00:14:47.350 right? Because we all sort of have those fears. 00:14:47.960 --> 00:14:50.700 How do you deal with that? And sort of how do 00:14:50.700 --> 00:14:54.200 you keep hope alive and positivity as you move 00:14:54.200 --> 00:14:57.240 forward, not really knowing what's going to happen, 00:14:57.320 --> 00:15:01.399 right? I think because of the outlook that I 00:15:01.399 --> 00:15:05.779 have on life in general, I think your mindset 00:15:05.779 --> 00:15:09.200 can really dictate how you're going to feel also 00:15:09.200 --> 00:15:11.480 in the future. We can't control flares, we can't 00:15:11.480 --> 00:15:13.500 control stuff that happens, but health anxiety 00:15:13.500 --> 00:15:16.500 is real. I do have health anxiety. you know i'll 00:15:16.500 --> 00:15:18.019 get caught my finger oh my god i'm gonna get 00:15:18.019 --> 00:15:20.000 sepsis like i'm a real freak about stuff like 00:15:20.000 --> 00:15:22.539 that but i just think if every day i wake up 00:15:22.539 --> 00:15:24.759 and i really think today could be the day i do 00:15:24.759 --> 00:15:27.179 flare up the likelihood of that happening because 00:15:27.179 --> 00:15:30.940 what triggers flare -ups stress and we know we 00:15:30.940 --> 00:15:33.080 kind of think to ourselves if i'm in a constant 00:15:33.080 --> 00:15:36.120 state of stress and i'm really on edge the likelihood 00:15:36.120 --> 00:15:38.720 of me flaring up can be quite high so this is 00:15:38.720 --> 00:15:43.179 why i said from my diagnosis I don't get stressed 00:15:43.179 --> 00:15:45.919 about anything anymore because they say like 00:15:45.919 --> 00:15:47.879 stress, you know, you can have all the stress 00:15:47.879 --> 00:15:49.659 in the world until you get like a health scare. 00:15:50.139 --> 00:15:51.840 Everything leaves and you're only focused on 00:15:51.840 --> 00:15:53.559 your health. Do you know what I mean? So now 00:15:53.559 --> 00:15:56.059 I'm at a point where I'm stuck in traffic. Cool, 00:15:56.179 --> 00:15:57.899 I'll put my music on. I'm sitting in traffic. 00:15:58.039 --> 00:16:00.419 I'm going to be relaxed. Like any bits of stress 00:16:00.419 --> 00:16:03.039 I can eliminate, I will. And again, of course, 00:16:03.059 --> 00:16:05.259 like I really do think about my Crohn's all the 00:16:05.259 --> 00:16:07.580 time because it's here, you know, it's with me. 00:16:08.019 --> 00:16:10.690 But again, I don't want it. this is the point 00:16:10.690 --> 00:16:12.289 i try to make i don't want to try to consume 00:16:12.289 --> 00:16:14.870 me because again i feel like if i did i'd go 00:16:14.870 --> 00:16:17.470 down a really dark path and again i went through 00:16:17.470 --> 00:16:19.190 them three months of feeling the worst i've ever 00:16:19.190 --> 00:16:21.809 felt mentally and physically and it's like i 00:16:21.809 --> 00:16:25.029 really don't want to go back there so yeah again 00:16:25.029 --> 00:16:27.590 a massive flare -up would come but i will take 00:16:27.590 --> 00:16:29.929 it how i need to and like i really just believe 00:16:29.929 --> 00:16:32.429 that i'll have to just try and stay strong and 00:16:32.429 --> 00:16:34.809 positive through it even though being positive 00:16:34.809 --> 00:16:38.409 can be hard when you're in pain but um yeah i 00:16:38.409 --> 00:16:40.669 don't think being overly negative about things 00:16:40.669 --> 00:16:43.690 can help also so i think finding a balance is 00:16:43.690 --> 00:16:46.250 great and i've got great people my friends my 00:16:46.250 --> 00:16:49.809 family everything like that so yeah i don't worry 00:16:49.809 --> 00:16:51.490 about it too much but then when it does come 00:16:51.490 --> 00:16:54.409 out like okay now i'm a bit worried yeah for 00:16:54.409 --> 00:16:58.370 sure so mind gut connection i'm a strong believer 00:16:58.370 --> 00:17:00.990 that that that is real for sure you mentioned 00:17:02.159 --> 00:17:04.079 Yeah, you mentioned like tuning out negativity. 00:17:04.160 --> 00:17:07.960 You mentioned trying to avoid stress. Are those 00:17:07.960 --> 00:17:11.359 two of the main aspects of your outlook on life 00:17:11.359 --> 00:17:16.359 or what else sort of composes that? Yeah, I just 00:17:16.359 --> 00:17:21.160 think that we become our thoughts and like when 00:17:21.160 --> 00:17:24.079 you are thinking so possessively over something 00:17:24.079 --> 00:17:28.259 for so long, you know, we can create things. 00:17:28.539 --> 00:17:31.539 And like I say, Again, I do have health anxiety. 00:17:31.740 --> 00:17:34.759 Like even before I got diagnosed, like if I started 00:17:34.759 --> 00:17:36.380 getting a little pain somewhere, the more I thought 00:17:36.380 --> 00:17:38.059 about that pain in my shoulder, I'm like, oh 00:17:38.059 --> 00:17:39.220 my God, there's something on my shoulder. And 00:17:39.220 --> 00:17:41.180 then I'll search up on Google for days. And before 00:17:41.180 --> 00:17:43.099 I know it, it's like, oh, I've got a tumor in 00:17:43.099 --> 00:17:44.680 my shoulder. It's like, no, you might've just 00:17:44.680 --> 00:17:46.319 gone to the gym and done a bench press and pulled 00:17:46.319 --> 00:17:49.059 it a little bit. So it's what I'm saying. Now 00:17:49.059 --> 00:17:52.079 that might've even unsetted my diagnosis being 00:17:52.079 --> 00:17:55.299 in constant like stress and like paranoia. So 00:17:55.299 --> 00:17:59.000 yeah, now I just really trying to be Zen. I work 00:17:59.000 --> 00:18:02.279 hard, but I don't like it to like cripple me 00:18:02.279 --> 00:18:04.779 with stress because I know that again, I don't 00:18:04.779 --> 00:18:07.180 want to flare up. I'm keeping flares at bay the 00:18:07.180 --> 00:18:10.440 best I can. So yeah. Yeah. The mind to gut connection 00:18:10.440 --> 00:18:14.180 is definitely real. In what other ways has this 00:18:14.180 --> 00:18:17.759 disease changed you as a person? to be a lot 00:18:17.759 --> 00:18:21.160 more a lot more caring so going back to like 00:18:21.160 --> 00:18:22.880 the point we was kind of making earlier like 00:18:22.880 --> 00:18:25.980 there's different severity is to not just chronic 00:18:25.980 --> 00:18:27.859 illnesses but people's threshold with things 00:18:27.859 --> 00:18:29.819 people are more sensitive to things some people 00:18:29.819 --> 00:18:33.079 can um work through things that others can't 00:18:33.079 --> 00:18:35.720 and i always think this is about the comparison 00:18:35.720 --> 00:18:37.559 thing i kind of took myself away from it now 00:18:37.559 --> 00:18:40.569 because Just because I might have done 10 things 00:18:40.569 --> 00:18:42.630 and this person's only done one, doesn't make 00:18:42.630 --> 00:18:45.410 me better and doesn't make them worse. It might 00:18:45.410 --> 00:18:46.930 have took the same amount of energy for that 00:18:46.930 --> 00:18:49.710 person to do one thing than it has me 10. So 00:18:49.710 --> 00:18:52.509 in comparison, we're at the same level. So my 00:18:52.509 --> 00:18:57.569 biggest, I would say, mindset shift is just be 00:18:57.569 --> 00:19:00.390 more compassionate towards people because now 00:19:00.390 --> 00:19:03.029 it's like, I just thought like, if I just keep 00:19:03.029 --> 00:19:05.250 working hard and I'm working and everyone else 00:19:05.250 --> 00:19:06.809 isn't like, I'm gonna like, you know, I'm just 00:19:06.809 --> 00:19:10.079 like, I'm just like crazy. fanatic guy it's like 00:19:10.079 --> 00:19:12.839 oh yeah i guess you are but that doesn't take 00:19:12.839 --> 00:19:14.480 away that someone just getting out of bed is 00:19:14.480 --> 00:19:17.720 just as hard as me doing these 10 tasks and again 00:19:17.720 --> 00:19:21.079 i'm thankful for it like i am it might sound 00:19:21.079 --> 00:19:24.180 a bit crazy i am more thankful than i am not 00:19:24.180 --> 00:19:26.000 to have got this diagnosis because it's made 00:19:26.000 --> 00:19:28.279 me such a better man like i feel like a man now 00:19:28.279 --> 00:19:31.019 before i felt like a boy i just like i'd have 00:19:31.019 --> 00:19:33.440 these mindset things and like i don't know it 00:19:33.440 --> 00:19:35.619 was like a lot of negativity in my head as well 00:19:35.619 --> 00:19:38.519 so now i'm i'm a lot more positive on life and 00:19:38.519 --> 00:19:42.000 um yeah i just think that we all going through 00:19:42.000 --> 00:19:44.960 our hardships there's no competition it's like 00:19:44.960 --> 00:19:48.279 having a chronic illness is just an l anyway 00:19:48.279 --> 00:19:50.400 like before we even start chronic illness is 00:19:50.400 --> 00:19:53.240 just terrible what help is it comparing and being 00:19:53.240 --> 00:19:55.079 like oh mine's worse than yours or this and that 00:19:55.079 --> 00:19:57.339 it's just like no let's just try it'll be the 00:19:57.339 --> 00:19:59.920 best we can with the circumstances that we're 00:19:59.920 --> 00:20:04.250 in so yeah you You obviously are pretty active 00:20:04.250 --> 00:20:05.869 also on social media. And this is actually how 00:20:05.869 --> 00:20:08.650 we connected through TikTok specifically. And 00:20:08.650 --> 00:20:13.710 you chronicle your IBD journey on there as well. 00:20:14.789 --> 00:20:18.890 How did that came to be? Were you that kind of 00:20:18.890 --> 00:20:22.769 a person before your illness as well? Or was 00:20:22.769 --> 00:20:25.089 that something in you that just awakened at one 00:20:25.089 --> 00:20:27.109 point that pushed you to say, hey, you know what? 00:20:27.150 --> 00:20:29.109 I want to share my journey with others. I want 00:20:29.109 --> 00:20:30.450 to share what it's like to live with a chronic 00:20:30.450 --> 00:20:34.569 illness and maybe help people that way. How did 00:20:34.569 --> 00:20:38.910 that come to be? Yeah, so it's quite funny, really. 00:20:40.269 --> 00:20:42.269 i was a musician so i was always making music 00:20:42.269 --> 00:20:44.109 videos like i was always out there i was shooting 00:20:44.109 --> 00:20:46.990 content great so coming coming to like the content 00:20:46.990 --> 00:20:49.089 side of game and things like i'm like i was like 00:20:49.089 --> 00:20:51.170 a veteran i felt fine doing it and then i got 00:20:51.170 --> 00:20:54.609 my diagnosis and for so long in my music i was 00:20:54.609 --> 00:20:56.930 trying to like almost betray myself as this like 00:20:56.930 --> 00:20:59.670 lover boy mr you know charming and stuff like 00:20:59.670 --> 00:21:02.470 that and then when i got my diagnosis or like 00:21:02.470 --> 00:21:04.690 when i started on my symptoms i was like oh i'm 00:21:04.690 --> 00:21:07.069 so embarrassed now like my this whole facade 00:21:07.069 --> 00:21:09.509 thing that i'm creating i'm shitting myself i'm 00:21:09.509 --> 00:21:12.309 23 years old i'm going out and i'm shitting myself 00:21:12.309 --> 00:21:15.849 how can i be this mr you know smooth guy well 00:21:15.849 --> 00:21:19.569 then my friend um charlorente he said you know 00:21:19.569 --> 00:21:23.049 what share your music that's great share the 00:21:23.049 --> 00:21:25.210 content of your music that's great but he said 00:21:25.210 --> 00:21:28.630 let people in because at the end of the day people 00:21:28.630 --> 00:21:32.289 want to know who you are and for so long i was 00:21:32.289 --> 00:21:34.869 like I felt almost embarrassed. Like I was like 00:21:34.869 --> 00:21:37.650 embarrassed about, oh my God, like I now have, 00:21:37.670 --> 00:21:39.549 it's like a disability. You know, I was like, 00:21:39.589 --> 00:21:42.650 I'm now disabled. Like how? Like I was, I was 00:21:42.650 --> 00:21:45.589 fine and now I'm not. So it took me a long time 00:21:45.589 --> 00:21:48.369 to kind of get to terms with the fact that I'm 00:21:48.369 --> 00:21:51.349 still me. I'm still Lewis. Hi, nice to meet you. 00:21:51.450 --> 00:21:53.710 But I do have this thing that's happening inside 00:21:53.710 --> 00:21:56.289 of me. And then when he kind of said that, he 00:21:56.289 --> 00:21:59.109 said, start showing more of that, show more of 00:21:59.109 --> 00:22:02.559 you because. Like this consumes a lot of my life. 00:22:02.740 --> 00:22:04.900 So it's like if people want to get to know me 00:22:04.900 --> 00:22:07.920 This is a part of my life. You're like my like 00:22:07.920 --> 00:22:09.339 my music you might think I'm funny You might 00:22:09.339 --> 00:22:10.839 think I'm motivational all these good things 00:22:10.839 --> 00:22:14.640 But also I have a chronic illness and people 00:22:14.640 --> 00:22:16.660 out there do too and the amount of messages that 00:22:16.660 --> 00:22:18.779 I get is like Overwhelming like I never thought 00:22:18.779 --> 00:22:21.799 in my head that even like the funny videos that 00:22:21.799 --> 00:22:24.240 I do people message me saying like this has just 00:22:24.240 --> 00:22:26.250 got me through my day and I'm like the funny 00:22:26.250 --> 00:22:27.950 video and they're like yeah because it's showing 00:22:27.950 --> 00:22:30.170 a lightheartedness but it's also showing awareness 00:22:30.170 --> 00:22:32.829 I'm like oh right great but I didn't think about 00:22:32.829 --> 00:22:34.269 it like that I was just putting it out so it's 00:22:34.269 --> 00:22:37.069 like this is how I feel so yeah without my friend 00:22:37.069 --> 00:22:39.630 just saying be a bit more open and just really 00:22:39.630 --> 00:22:43.450 like let people in because so the point I'm trying 00:22:43.450 --> 00:22:45.509 to get is I'm not embarrassed anymore I'm not 00:22:45.509 --> 00:22:47.450 trying to hide anything and this is what I'm 00:22:47.450 --> 00:22:49.849 saying this is another tick box for a bonus for 00:22:49.849 --> 00:22:52.529 me getting diagnosed because it's like it's made 00:22:52.529 --> 00:22:56.519 me accept who I am for who I am and when before 00:22:56.519 --> 00:22:59.619 getting diagnosed as well I was I bottled everything 00:22:59.619 --> 00:23:01.539 up and like I said I was like quite like an angry 00:23:01.539 --> 00:23:03.180 person I don't know why I just had this like 00:23:03.180 --> 00:23:05.720 thing against the world but now like I realize 00:23:05.720 --> 00:23:07.480 I am a bit more emotional than I thought and 00:23:07.480 --> 00:23:10.559 I do believe I have I have a form of anxiety 00:23:10.559 --> 00:23:12.900 and it's because I bottled up for so long I didn't 00:23:12.900 --> 00:23:15.400 know this but it's like it's all just like cracked 00:23:15.400 --> 00:23:18.019 my shell and now I'm like coming out of it and 00:23:18.019 --> 00:23:20.420 now I'm you know people are seeing me for how 00:23:20.420 --> 00:23:23.140 I am and I'm actually helping people which I 00:23:23.140 --> 00:23:24.960 don't know. To me, it's still crazy, but yeah. 00:23:25.420 --> 00:23:27.799 So keyword helping people. I like that because 00:23:27.799 --> 00:23:29.839 you're right. I mean, so many people out there 00:23:29.839 --> 00:23:33.799 are not as comfortable as you or I, you know, 00:23:33.799 --> 00:23:38.319 in sharing life with IBD. Yeah. But it's great 00:23:38.319 --> 00:23:41.440 that they do find the courage to reach out based 00:23:41.440 --> 00:23:44.140 on what they see, based on what they hear, based 00:23:44.140 --> 00:23:47.809 on what it is that we're doing. If we start with 00:23:47.809 --> 00:23:50.650 people who have been recently diagnosed, Crohn's 00:23:50.650 --> 00:23:52.890 or colitis, doesn't matter. They kind of feel 00:23:52.890 --> 00:23:56.430 lost. They struggle, right? Just starting treatments. 00:23:57.269 --> 00:23:59.869 Based on what you've experienced, based on maybe 00:23:59.869 --> 00:24:01.789 the questions that you have been asked as well 00:24:01.789 --> 00:24:04.369 through social media, what kind of advice would 00:24:04.369 --> 00:24:05.730 you have for those kind of people? What kind 00:24:05.730 --> 00:24:08.569 of words of wisdom, in a sense, would you have 00:24:08.569 --> 00:24:11.269 for somebody who is just starting out on their 00:24:11.269 --> 00:24:18.700 IBD journey? a new normal that you're not used 00:24:18.700 --> 00:24:22.819 to and that doing things that you may have done 00:24:22.819 --> 00:24:26.980 before may not as be may not be as easy now and 00:24:26.980 --> 00:24:29.619 you know like in my example it's like i still 00:24:29.619 --> 00:24:32.279 can roughly do the same but just because i'm 00:24:32.279 --> 00:24:34.519 doing the same doesn't mean that i'm feeling 00:24:34.519 --> 00:24:37.400 it any less like i feel like i say i get tired 00:24:37.400 --> 00:24:40.500 a lot more need a lot more rest you know it's 00:24:40.500 --> 00:24:43.000 like the wear and tear is like a lot more uh 00:24:43.000 --> 00:24:45.759 prevalent now but yeah i would say that just 00:24:45.759 --> 00:24:49.799 trying to accept firstly like the point earlier 00:24:49.799 --> 00:24:52.599 that we made it's like i was embarrassed about 00:24:52.599 --> 00:24:54.660 it i was like oh no i can't let any but like 00:24:54.660 --> 00:24:56.700 i i hid that i even had it for like the first 00:24:56.700 --> 00:24:57.960 three months because i was like i don't want 00:24:57.960 --> 00:25:01.140 anybody to notice it's embarrassing and but the 00:25:01.140 --> 00:25:04.640 more and the more and quickly you do just accept 00:25:04.640 --> 00:25:07.500 that you know you do now have something wrong 00:25:07.500 --> 00:25:11.059 with you like and the happier you'll be because 00:25:11.059 --> 00:25:12.960 again you just don't want to suppress this emotion 00:25:12.960 --> 00:25:15.259 because a it's hard living with it anyway but 00:25:15.259 --> 00:25:17.259 trying to hide it as well will make it just as 00:25:17.259 --> 00:25:20.880 bad and then yeah i would i would say just accepting 00:25:20.880 --> 00:25:23.259 that okay this is the new me and now you're gonna 00:25:23.259 --> 00:25:25.799 have to navigate life a bit differently and things 00:25:25.799 --> 00:25:28.640 might be harder but again like i said earlier 00:25:28.640 --> 00:25:30.579 harder doesn't mean impossible so there is a 00:25:30.579 --> 00:25:32.279 light at the end of the tunnel it's just that 00:25:32.279 --> 00:25:35.619 in the moment it can be a bit daunting but yeah 00:25:35.619 --> 00:25:39.339 that's what i'd say And you mentioned you had 00:25:39.339 --> 00:25:42.880 really strong positive support from the people 00:25:42.880 --> 00:25:44.980 around you. I'm assuming, you know, family and 00:25:44.980 --> 00:25:50.539 friends. So if we turn it now to the people that 00:25:50.539 --> 00:25:54.380 know people with IBD, right? People, you know, 00:25:54.380 --> 00:25:56.900 husbands, boyfriends, girlfriends, partners, 00:25:57.319 --> 00:26:01.359 friends, family members. What would your advice 00:26:01.359 --> 00:26:06.220 be to those people who are... loving and caring 00:26:06.220 --> 00:26:10.279 for someone who has been diagnosed with colitis 00:26:10.279 --> 00:26:13.079 or Crohn's, what's their best approach if they 00:26:13.079 --> 00:26:15.380 come to you and say, hey, so I got this person. 00:26:15.539 --> 00:26:18.339 I love that person very much. How do I help him? 00:26:18.400 --> 00:26:22.140 How do I support that person? Firstly, compassion. 00:26:22.519 --> 00:26:25.660 Just be so compassionate towards them because 00:26:25.660 --> 00:26:29.960 you are so isolated in that moment. From your 00:26:29.960 --> 00:26:34.369 diagnosis, that person now. we are only here 00:26:34.369 --> 00:26:38.329 once we have one life and i've never experienced 00:26:38.329 --> 00:26:40.549 this before you've never experienced it before 00:26:40.549 --> 00:26:43.569 until you got it it's our first time right so 00:26:43.569 --> 00:26:46.369 it's so scary it's so like confusing it's so 00:26:46.369 --> 00:26:49.690 isolating so i would i'd literally just say be 00:26:49.690 --> 00:26:55.250 compassionate and understand that even if we 00:26:55.250 --> 00:26:59.589 look okay most of the times we're not and like 00:26:59.589 --> 00:27:01.730 a lot of people like We can't be that bad if 00:27:01.730 --> 00:27:04.589 you go to gym. It's like, what? I don't even 00:27:04.589 --> 00:27:08.390 get that argument. I went to gym feeling like 00:27:08.390 --> 00:27:11.630 shit, but I didn't want to just sit in bed because 00:27:11.630 --> 00:27:13.289 that made me feel probably even worse. So I went 00:27:13.289 --> 00:27:15.390 to gym and it made me feel better. But it's just 00:27:15.390 --> 00:27:20.490 like people don't understand the difference between 00:27:20.490 --> 00:27:24.960 looking okay and actually being okay. you know 00:27:24.960 --> 00:27:27.400 90 % of the time I just look okay but there's 00:27:27.400 --> 00:27:29.279 something inside me or like when I'm in public 00:27:29.279 --> 00:27:31.640 and I'm like I can feel like the itch is starting 00:27:31.640 --> 00:27:33.480 like I start itching and I get a little bit and 00:27:33.480 --> 00:27:37.640 I'm just like we are really fucking strong people 00:27:37.640 --> 00:27:41.680 because a lot of people would crumble under the 00:27:41.680 --> 00:27:44.299 pressure that we do the pain the anxiety the 00:27:44.299 --> 00:27:47.220 isolation and I think that you know people just 00:27:47.220 --> 00:27:48.920 with a chronic illness in general are like the 00:27:48.920 --> 00:27:51.240 strongest people ever but a lot of people can 00:27:51.240 --> 00:27:53.680 look at them as weak as lazy and stuff like this 00:27:53.680 --> 00:27:55.700 but it's like you wouldn't understand so i don't 00:27:55.700 --> 00:27:57.559 even argue with people anymore who don't get 00:27:57.559 --> 00:28:00.579 it it's like we're not lazy you know we do want 00:28:00.579 --> 00:28:02.920 to do things if our body allows it but sometimes 00:28:02.920 --> 00:28:05.519 it doesn't so yeah just be more compassionate 00:28:05.519 --> 00:28:08.480 be more compassionate compassion being the key 00:28:08.480 --> 00:28:10.579 word and i think that's the best starting point 00:28:10.579 --> 00:28:12.579 as well for somebody to understand and i always 00:28:12.579 --> 00:28:15.559 say like be compassionate educate yourself a 00:28:15.559 --> 00:28:17.599 little bit as well you know don't go down a weird 00:28:17.599 --> 00:28:21.480 spiral and And then I always think one of the 00:28:21.480 --> 00:28:25.119 biggest ones for me was always that let them 00:28:25.119 --> 00:28:27.480 know you're there, but don't impose yourself 00:28:27.480 --> 00:28:31.059 either, right? Because we will come to you once 00:28:31.059 --> 00:28:33.319 we feel better, once we are ready, if we need 00:28:33.319 --> 00:28:35.539 or when we need something, we will be there. 00:28:35.660 --> 00:28:37.400 And I think, you know, it ties into exactly what 00:28:37.400 --> 00:28:40.640 you said. If you as the person practice the compassion, 00:28:40.960 --> 00:28:43.380 you will understand all that, you know, and you'll 00:28:43.380 --> 00:28:45.779 get it very quickly. So yeah, that's a good point. 00:28:45.859 --> 00:28:49.500 That's a good point. So obviously you've... interact 00:28:49.500 --> 00:28:51.960 with a lot of people you know on social media 00:28:51.960 --> 00:28:54.740 online you know people who have IBD might be 00:28:54.740 --> 00:28:58.980 affected by it you know what kind of common misconceptions 00:28:58.980 --> 00:29:02.819 about like colitis or Crohn's have you come across 00:29:02.819 --> 00:29:05.799 so what are your main ones that you kind of like 00:29:05.799 --> 00:29:08.660 keep seeing or that sometimes frustrate you or 00:29:08.660 --> 00:29:14.900 anger you even ah there's a few um I would say 00:29:14.900 --> 00:29:22.390 the biggest misconception is the IBD is literally 00:29:22.390 --> 00:29:25.890 just you not being able to hold your poop and 00:29:25.890 --> 00:29:30.369 it's like that's one element great but there's 00:29:30.369 --> 00:29:35.490 so much more like and when if I if I if I tell 00:29:35.490 --> 00:29:39.559 someone I have IBD and I oh what's that I kind 00:29:39.559 --> 00:29:41.920 of just like, I don't want to know what to say 00:29:41.920 --> 00:29:43.519 because it's like, I don't want to downplay it, 00:29:43.579 --> 00:29:45.539 but I don't want to like overcomplicate. So I'm 00:29:45.539 --> 00:29:47.519 trying to find like a nice way I can kind of 00:29:47.519 --> 00:29:50.940 put it where they'll understand it, but they're 00:29:50.940 --> 00:29:52.259 not just come away from the conversation like, 00:29:52.380 --> 00:29:55.980 oh, just like IBS then. It's like, oh, it's, 00:29:55.980 --> 00:29:59.920 you know, IBS by itself is hard. I know people 00:29:59.920 --> 00:30:02.140 with it. It's not a nice thing to go through, 00:30:02.259 --> 00:30:05.279 but then it's like for you to just say, oh, so 00:30:05.279 --> 00:30:08.529 it's like IBS. It's like, I guess. it's saying 00:30:08.529 --> 00:30:12.309 that we both poo ourselves i guess but like the 00:30:12.309 --> 00:30:15.430 problems that come from having ibd to ibs it's 00:30:15.430 --> 00:30:18.230 like completely different ball game so but then 00:30:18.230 --> 00:30:20.910 again that's just people being a bit uneducated 00:30:20.910 --> 00:30:23.670 and again this is why it's good to raise awareness 00:30:23.670 --> 00:30:26.150 so people understand when i say oh by the way 00:30:26.150 --> 00:30:29.569 i have like ibd you go oh shit you know you've 00:30:29.569 --> 00:30:32.730 got ibd i bet that's tough but then for you to 00:30:32.730 --> 00:30:34.730 just go oh so it's like you're kind of pooing 00:30:34.730 --> 00:30:37.410 yourself it's like no like that's like the worst 00:30:37.410 --> 00:30:40.269 thing you could ever say to somebody so yeah 00:30:40.269 --> 00:30:42.809 that's definitely an element but it's not a whole 00:30:42.809 --> 00:30:44.910 story it's just like a chapter it's not the whole 00:30:44.910 --> 00:30:47.809 book so yeah yeah yeah no i think it's a really 00:30:47.809 --> 00:30:51.250 good point because it actually now now that i 00:30:51.250 --> 00:30:54.130 hear you speak it when i explain it to people 00:30:54.859 --> 00:30:56.839 Obviously, I try to keep the definition pretty 00:30:56.839 --> 00:30:58.500 short and pretty easy. You know, I don't want 00:30:58.500 --> 00:31:00.880 to get into too medical or anything. But it's 00:31:00.880 --> 00:31:03.180 true that this sort of running to the toilet 00:31:03.180 --> 00:31:06.339 or the shitting part really takes center stage. 00:31:07.160 --> 00:31:10.380 But it is so much more. It is fatigue. It is 00:31:10.380 --> 00:31:13.140 abdominal pain. It is lack of energy, right? 00:31:13.299 --> 00:31:16.819 Like it is mental struggles, right? And all of 00:31:16.819 --> 00:31:19.980 that is IBD. Even though the B stands for bowel, 00:31:20.319 --> 00:31:22.720 yeah, sure, you know, I mean, we might be on 00:31:22.720 --> 00:31:24.559 the toilet 20 times a day when we're flaring, 00:31:24.640 --> 00:31:28.779 but there's just so much more going on that is 00:31:28.779 --> 00:31:32.759 connected to, yeah, the shitting part, right? 00:31:32.880 --> 00:31:37.059 So as we kind of get close to wrapping up here 00:31:37.059 --> 00:31:39.559 and we sort of covered the past, we covered the 00:31:39.559 --> 00:31:41.980 present, you know, we want to, you know... Look 00:31:41.980 --> 00:31:43.839 out for the future as well. But I think, you 00:31:43.839 --> 00:31:46.019 know, we cannot really go into the future without 00:31:46.019 --> 00:31:48.160 properly understanding the present and also the 00:31:48.160 --> 00:31:52.059 past. So for like a final moment of introspection, 00:31:52.299 --> 00:31:55.559 I would love to hear from you if you could go 00:31:55.559 --> 00:31:58.759 back today to that day that you were diagnosed. 00:31:59.000 --> 00:32:00.640 And even though back then you kind of already 00:32:00.640 --> 00:32:03.640 knew what colitis sort of was, what would you 00:32:03.640 --> 00:32:07.420 tell yourself, you know, on that day that you 00:32:07.420 --> 00:32:10.079 came out of the colonoscopy and your doctor told 00:32:10.079 --> 00:32:14.329 you have this? I think it would bleed into like 00:32:14.329 --> 00:32:16.670 the point that I kind of made earlier. It was. 00:32:18.589 --> 00:32:22.170 Your normal now is a lot different to what your 00:32:22.170 --> 00:32:27.049 normal was. And yeah, I thought I was just going 00:32:27.049 --> 00:32:29.509 to hop out there and it's like, you know, run 00:32:29.509 --> 00:32:33.190 into the sunset, you know. But then I quickly 00:32:33.190 --> 00:32:36.430 learned in like the first month I was like, damn, 00:32:36.589 --> 00:32:39.920 like I'm usually doing this stuff and I'm. have 00:32:39.920 --> 00:32:42.619 more energy after but now it's like i just don't 00:32:42.619 --> 00:32:45.660 i just generally don't have the energy so i would 00:32:45.660 --> 00:32:50.640 just say that the the new normal that you're 00:32:50.640 --> 00:32:52.519 gonna face is something you're gonna have to 00:32:52.519 --> 00:32:55.660 learn to adapt to and navigate instead of just 00:32:55.660 --> 00:32:59.359 like trying to keep up with the old normal that 00:32:59.359 --> 00:33:02.519 you used to have and um yeah again understanding 00:33:02.519 --> 00:33:04.980 your body a lot more as well like when your body 00:33:04.980 --> 00:33:07.680 talks listen and that's what i didn't do for 00:33:07.680 --> 00:33:10.859 the first 22 23 years of my life i was just on 00:33:10.859 --> 00:33:14.680 go go go go disregard everything i'm a you know 00:33:14.680 --> 00:33:17.000 i need to just stay focused but now it's like 00:33:17.000 --> 00:33:19.980 if i feel that flare coming on i'ma just sit 00:33:19.980 --> 00:33:22.900 back and i'ma just let whatever needs to happen 00:33:22.900 --> 00:33:25.640 happen without trying to push through it because 00:33:25.640 --> 00:33:27.640 again it's not going to end well so accepting 00:33:27.640 --> 00:33:30.440 your new normal is is the is the conclusion i 00:33:30.440 --> 00:33:33.460 guess My final question for you is a difficult 00:33:33.460 --> 00:33:38.859 one. And I insist on asking it because so far, 00:33:38.900 --> 00:33:40.859 100 % of the time when I've asked it, there's 00:33:40.859 --> 00:33:44.839 always been a sense of hope and optimism tied 00:33:44.839 --> 00:33:46.500 to it. And I always want to end with hope and 00:33:46.500 --> 00:33:49.880 optimism. So I'm in remission. You're in remission. 00:33:50.220 --> 00:33:53.039 So we're lucky that we're feeling good. But we 00:33:53.039 --> 00:33:57.000 are not cured, right? This is sleeping right 00:33:57.000 --> 00:33:59.829 now, right? Do you think that in our lifetime 00:33:59.829 --> 00:34:04.690 we will see a cure to IBD? I think it's a very 00:34:04.690 --> 00:34:12.989 complex disease. But a lot of complex diseases 00:34:12.989 --> 00:34:16.130 100 years ago is a tablet and it's gone today. 00:34:16.670 --> 00:34:25.389 So I think in our lifetime, yes. I don't think 00:34:25.389 --> 00:34:27.409 it's going to be very, very soon in like the 00:34:27.409 --> 00:34:31.789 next five years. But I think if we're maybe talking 00:34:31.789 --> 00:34:37.849 20, 30, 20, 30 years, I think that. Yeah, again, 00:34:37.909 --> 00:34:41.670 with how quickly medicine is advancing. Hey, 00:34:41.809 --> 00:34:43.610 I am going to worry. I'm just waiting for the 00:34:43.610 --> 00:34:46.769 day to go. That's cured. Give me some, you know, 00:34:46.769 --> 00:34:49.489 and I'll be happy. But yeah, I do think so. Yeah, 00:34:49.590 --> 00:34:52.519 I definitely do. Yeah. Listen, 20, 30 years, 00:34:52.639 --> 00:34:54.179 that's a pretty positive outlook. So I'll take 00:34:54.179 --> 00:34:57.320 it. So I'm definitely game, definitely game. 00:34:58.579 --> 00:35:01.500 Luz, thanks so much for sharing your journey 00:35:01.500 --> 00:35:04.199 and for spreading the positivity. I think some 00:35:04.199 --> 00:35:07.280 of the insights about how you see your life now, 00:35:07.360 --> 00:35:09.219 as opposed to before your diagnosis, I think 00:35:09.219 --> 00:35:10.699 that's really inspiring. And I really hope that 00:35:10.699 --> 00:35:12.980 I can speak to a lot of people as well. From 00:35:12.980 --> 00:35:15.699 my end, I can just wish you the best. And I really 00:35:15.699 --> 00:35:18.460 hope that you keep doing what you're doing. I 00:35:18.460 --> 00:35:21.139 would say if you can just answer one question, 00:35:21.300 --> 00:35:23.840 you know, to somebody who's struggling per day 00:35:23.840 --> 00:35:26.719 and or somebody, you know, messages you and says, 00:35:26.880 --> 00:35:29.159 thank you, that made my day. That is really part 00:35:29.159 --> 00:35:33.320 of our purpose. And I think that's more than 00:35:33.320 --> 00:35:36.400 enough. So keep that up. And I wish you nothing 00:35:36.400 --> 00:35:38.980 but the best in your continuing journey with 00:35:38.980 --> 00:35:42.019 Crohn's and colitis. Yeah, I just want to say 00:35:42.019 --> 00:35:43.840 as well, thank you so much for having me as well. 00:35:43.940 --> 00:35:46.280 I think what you're doing is amazing. I think 00:35:46.280 --> 00:35:48.719 awareness is so important in today's age with 00:35:48.719 --> 00:35:53.099 a lot of uneducated, borderline ignorant people 00:35:53.099 --> 00:35:55.820 sometimes. So, yeah, I think what you're doing 00:35:55.820 --> 00:35:58.380 is like God's work. And again, if I can be any 00:35:58.380 --> 00:36:00.780 help towards that, you know, I'm definitely down 00:36:00.780 --> 00:36:05.650 for that. And hopefully the cure is coming. And 00:36:05.650 --> 00:36:08.690 while we're waiting, this raising awareness and 00:36:08.690 --> 00:36:11.269 advocating for ourselves and others, that's the 00:36:11.269 --> 00:36:12.750 best thing we can do. And that's what we should 00:36:12.750 --> 00:36:15.010 be doing. So thanks so much, Louis, again. Thank 00:36:15.010 --> 00:36:18.989 you. Thank you. Thank you. That's it for today's 00:36:18.989 --> 00:36:22.130 episode of Kaleidos Unfiltered. I'm Frank Tabering. 00:36:22.250 --> 00:36:25.530 And if this hit home or hit your gut, do us a 00:36:25.530 --> 00:36:28.329 favor. Subscribe to the show and follow us at 00:36:28.329 --> 00:36:31.630 Kaleidos Unfiltered on YouTube, Substack, Instagram, 00:36:31.849 --> 00:36:34.920 Threads, TikTok, and Reddit. We'll see you soon 00:36:34.920 --> 00:36:37.099 for more inspiring stories from the bathroom 00:36:37.099 --> 00:36:37.380 floor.