WEBVTT 00:00:02.899 --> 00:00:05.419 I'm interesting in the sense of I'm trying to 00:00:05.419 --> 00:00:08.880 not let it completely define me because you can 00:00:08.880 --> 00:00:12.519 go down rabbit holes about what could happen 00:00:12.519 --> 00:00:15.619 in 10 20 years time you know if you're not careful 00:00:15.619 --> 00:00:18.559 enough and it can be a very scary place to go 00:00:18.559 --> 00:00:22.399 so i think i'm mindful enough to take it seriously 00:00:22.399 --> 00:00:24.660 and to not ignore it because if you ignore it 00:00:24.660 --> 00:00:27.219 then of course then that also has its ramifications 00:00:27.219 --> 00:00:30.399 i did not do anything to cause this ultimately 00:00:30.399 --> 00:00:33.500 in most cases with autoimmune diseases there 00:00:33.500 --> 00:00:37.850 is a very strong genetic element And there's 00:00:37.850 --> 00:00:41.450 genes which we have directly tied to what the 00:00:41.450 --> 00:00:44.490 downstream manifestation would be. But there's 00:00:44.490 --> 00:00:49.210 also, I think, easily over 100 potential genes 00:00:49.210 --> 00:00:51.530 that we've identified, but we don't even know 00:00:51.530 --> 00:00:53.689 what they quite do. But we know that they are 00:00:53.689 --> 00:00:57.689 a risk for IBD. This is Yasmin, who got diagnosed 00:00:57.689 --> 00:01:00.990 with Crohn's at age 31 in Los Angeles, California. 00:01:01.890 --> 00:01:04.689 Yasmin brings a unique perspective to inflammatory 00:01:04.689 --> 00:01:07.790 bowel disease. She's a sharp -minded immunologist 00:01:07.790 --> 00:01:10.530 who sees the autoimmune terrain from both sides 00:01:10.530 --> 00:01:13.349 of the microscope. Today, she's telling us all 00:01:13.349 --> 00:01:16.170 about her Crohn's journey. And together, we'll 00:01:16.170 --> 00:01:18.829 take a deep dive into all things biologics and 00:01:18.829 --> 00:01:21.730 autoimmunity. This is Talking S***, presented 00:01:21.730 --> 00:01:24.409 by Colitis Unfiltered. My name is Frank Tabering, 00:01:24.409 --> 00:01:27.689 and Yasmin, welcome to the show. Thank you for 00:01:27.689 --> 00:01:31.439 having me. So Crohn's disease, that's your diagnosis, 00:01:31.620 --> 00:01:34.799 fairly recent. Let's go back to the beginning. 00:01:34.959 --> 00:01:37.760 Could you talk a little bit about your first 00:01:37.760 --> 00:01:41.680 symptoms and whatever you experienced that prompted 00:01:41.680 --> 00:01:45.879 you to take action and seek a physician to find 00:01:45.879 --> 00:01:49.140 out what's going on? Yeah, so I've always actually 00:01:49.140 --> 00:01:52.000 struggled with some sort of stomach related issue 00:01:52.000 --> 00:01:54.519 all my life. I was always sort of susceptible 00:01:54.519 --> 00:01:58.439 to mainly upper GI. So that will be like a lot 00:01:58.439 --> 00:02:02.579 of nausea, vomiting, anytime I was actually stressed 00:02:02.579 --> 00:02:06.159 out, really. So that's something even as a child, 00:02:06.260 --> 00:02:08.500 I had that going on. And it was just kind of 00:02:08.500 --> 00:02:11.439 like the thing that like my parents and family 00:02:11.439 --> 00:02:15.879 knew about me. But I think what really sparked 00:02:16.750 --> 00:02:19.229 The need to warrant further investigation was 00:02:19.229 --> 00:02:22.830 when I moved to the US. So I relocated to Los 00:02:22.830 --> 00:02:25.949 Angeles and California in just beginning of 2022. 00:02:26.129 --> 00:02:30.849 So I noticed very quickly that my stomach wasn't 00:02:30.849 --> 00:02:33.270 able to like tolerate foods that I typically 00:02:33.270 --> 00:02:36.930 would have been able to tolerate in London. And 00:02:36.930 --> 00:02:39.969 I was just running to the toilet, running to 00:02:39.969 --> 00:02:42.509 the loo, as we like to say as a Brit, running 00:02:42.509 --> 00:02:46.469 to the loo. like constantly like and it was I 00:02:46.469 --> 00:02:49.669 think it was the urgency that was quite a horrible 00:02:49.669 --> 00:02:52.069 situation it was sort of that the moment you 00:02:52.069 --> 00:02:54.330 had to go you have a five minute window to get 00:02:54.330 --> 00:02:57.189 to the loo So that was something that I noticed 00:02:57.189 --> 00:02:59.169 that this is not normal and it was happening 00:02:59.169 --> 00:03:03.889 on a daily basis. That was just as I moved here. 00:03:04.090 --> 00:03:06.849 And I think what was interesting, I noticed, 00:03:07.229 --> 00:03:09.849 and obviously there is data to sort of support 00:03:09.849 --> 00:03:12.490 at this point, but I actually ended up getting 00:03:12.490 --> 00:03:18.990 COVID in August 2022. So yeah, it was, you know, 00:03:19.030 --> 00:03:21.210 I was living here for about seven, eight months 00:03:21.210 --> 00:03:25.819 at this point and it wrecked my GI. Like no other 00:03:25.819 --> 00:03:29.800 symptoms, but my GI. And that's not completely 00:03:29.800 --> 00:03:32.060 uncommon, especially as the more we're understanding 00:03:32.060 --> 00:03:35.599 about how the virus works. And I really did not 00:03:35.599 --> 00:03:38.979 recover from that point. And so everything just 00:03:38.979 --> 00:03:41.659 sort of got more exacerbated. And to be honest, 00:03:41.780 --> 00:03:44.060 I actually knew I had just with my background 00:03:44.060 --> 00:03:47.960 and my sort of field of expertise, I knew I had 00:03:47.960 --> 00:03:50.560 Crohn's. I knew I just needed the confirmation 00:03:50.560 --> 00:03:54.240 really to be able to proceed medically. So you 00:03:54.240 --> 00:03:56.659 just mentioned, you know, when you were when 00:03:56.659 --> 00:03:59.860 you were suffering from COVID, your GI was wrecked. 00:03:59.879 --> 00:04:02.360 And this podcast is called Talking Shit for a 00:04:02.360 --> 00:04:05.060 Reason. What specifically are we talking about? 00:04:05.319 --> 00:04:08.259 Diarrhea constantly, cramps, blood? Like, how 00:04:08.259 --> 00:04:11.500 did that manifest? Yeah, so for me, it was, I 00:04:11.500 --> 00:04:15.520 mean, diarrhea, but also vomiting. Like it was 00:04:15.520 --> 00:04:19.720 just out of nowhere. It was brutal on both ends, 00:04:19.800 --> 00:04:22.160 almost like I had like norovirus or something. 00:04:23.120 --> 00:04:26.199 And it was constant to the point I was like, 00:04:26.240 --> 00:04:28.019 oh, my goodness, like I'm going to, I need to 00:04:28.019 --> 00:04:31.500 get some desperate electrolytes in me. So I dropped 00:04:31.500 --> 00:04:34.100 nearly a stone in that time of having COVID. 00:04:35.079 --> 00:04:37.839 Stone is, how do we say this? It's like 15 pounds, 00:04:37.879 --> 00:04:40.019 I think, so 7 kg, right? I was going to ask you 00:04:40.019 --> 00:04:43.139 to clarify. Thank you. So any of the Americans, 00:04:43.360 --> 00:04:46.579 sorry, European, I think it's 15, 7 kg, right? 00:04:46.939 --> 00:04:50.699 So it's, which is a lot, a lot of weight. And 00:04:50.699 --> 00:04:54.180 yes, very loose. But then what actually prompted 00:04:54.180 --> 00:04:57.000 me to get the investigation was that was in August 00:04:57.000 --> 00:05:01.480 2022. And then I continued suffering per se for 00:05:01.480 --> 00:05:05.000 another year of just loose diarrhea constantly. 00:05:05.879 --> 00:05:09.790 It was. Very difficult. I was navigating a brand 00:05:09.790 --> 00:05:12.810 new relationship. And let me tell you, that is 00:05:12.810 --> 00:05:18.490 trying to run around in secret. When you're trying 00:05:18.490 --> 00:05:22.870 to impress someone is not ideal at all. But we 00:05:22.870 --> 00:05:25.509 worked through that. And but then it was the 00:05:25.509 --> 00:05:28.149 night before my 31st birthday party. I actually 00:05:28.149 --> 00:05:29.810 ended up in the ER because I was passing blood. 00:05:30.069 --> 00:05:32.829 And there was no obvious symptoms. But I wasn't 00:05:32.829 --> 00:05:35.689 like pushing. You know, it wasn't like from straining. 00:05:36.029 --> 00:05:39.110 It was just. just dropping in the bowl and thought, 00:05:39.189 --> 00:05:41.230 this isn't good. So we ended up in the ER and 00:05:41.230 --> 00:05:42.970 they said, yeah, you need to follow up with a 00:05:42.970 --> 00:05:46.209 GI. As I said, by that point, I knew, to be honest. 00:05:47.189 --> 00:05:50.029 Medically, you knew about Crohn's disease. You 00:05:50.029 --> 00:05:53.290 knew what it was. Most people when they're diagnosed 00:05:53.290 --> 00:05:56.550 with IBD are not familiar with either Crohn's 00:05:56.550 --> 00:06:00.230 or colitis. So while it was not a surprise to 00:06:00.230 --> 00:06:03.310 you medically, you're still human. So I'd like 00:06:03.310 --> 00:06:07.459 to know what went through your mind. Mentally, 00:06:07.459 --> 00:06:10.879 emotionally, when you heard the words officially, 00:06:11.040 --> 00:06:14.800 you have Crohn's disease. Yeah. So, I mean, my 00:06:14.800 --> 00:06:17.500 GI did not like wait at all. I was like still 00:06:17.500 --> 00:06:20.100 coming out of my sedation when he told me. And 00:06:20.100 --> 00:06:21.600 I was like, oh, it's like a kind of different 00:06:21.600 --> 00:06:24.439 planet. So I don't think I fully processed it. 00:06:24.560 --> 00:06:29.160 But I'm actually very ashamed to say the very 00:06:29.160 --> 00:06:33.100 first response was relief that I had validation 00:06:33.100 --> 00:06:37.319 for making a fuss of my symptoms. and it very 00:06:37.319 --> 00:06:40.439 quickly switched to okay wait no let's think 00:06:40.439 --> 00:06:43.100 about that further because you know you never 00:06:43.100 --> 00:06:46.259 want to be seen as being an unnecessary drama 00:06:46.259 --> 00:06:49.300 queen and needing extra accommodations like it 00:06:49.300 --> 00:06:52.420 was always so embarrassing to have to list off 00:06:52.420 --> 00:06:55.699 dietary restrictions or just things that were 00:06:55.699 --> 00:06:58.680 I noticed were triggering me but maybe not but 00:06:58.680 --> 00:07:03.139 maybe and you know having to as I say have constant 00:07:03.139 --> 00:07:07.399 access to the bathroom It was nice. Like for 00:07:07.399 --> 00:07:10.100 the first 30 seconds, the knee jerk reaction 00:07:10.100 --> 00:07:13.319 is relief that, oh, there's actually a valid 00:07:13.319 --> 00:07:15.939 reason. Like I'm not just making a fuss out of 00:07:15.939 --> 00:07:20.800 nowhere. But then, of course, it went into, oh, 00:07:20.879 --> 00:07:22.959 okay, right. There's something going on. And, 00:07:23.019 --> 00:07:25.879 you know, my life might not look the same moving 00:07:25.879 --> 00:07:28.439 forward from this point on. Absolutely. And we're 00:07:28.439 --> 00:07:31.300 going to talk about this change in life in a 00:07:31.300 --> 00:07:34.889 few minutes. Before we get there. I want to just 00:07:34.889 --> 00:07:36.930 talk a little bit about what treatments you are 00:07:36.930 --> 00:07:40.629 currently undergoing and what is your experience 00:07:40.629 --> 00:07:44.750 with these medications? I actually wasn't on 00:07:44.750 --> 00:07:47.389 treatment for the first year. We were just trying 00:07:47.389 --> 00:07:50.029 to just kind of see how it was going to go. But 00:07:50.029 --> 00:07:53.329 I was put on budesonide. So, I mean, that counts 00:07:53.329 --> 00:07:57.490 as a treatment. Budesonide is a steroid. And 00:07:57.490 --> 00:08:01.339 I was sort of. blasts your immune system essentially 00:08:01.339 --> 00:08:04.279 it's like a quick sort of let's try and calm 00:08:04.279 --> 00:08:08.160 this flare down it like is a we call it like 00:08:08.160 --> 00:08:10.759 a almost like a pan immunosuppressant it just 00:08:10.759 --> 00:08:14.019 like in general just like stops the immune system 00:08:14.019 --> 00:08:16.639 from freaking out but I will say the one I had 00:08:16.639 --> 00:08:19.259 was more like classified as like guts almost 00:08:19.259 --> 00:08:25.060 gut specific budesonide and it was It was really 00:08:25.060 --> 00:08:29.939 intense on me. Very, very intense. It actually, 00:08:30.060 --> 00:08:34.100 for my case, did not make it better. It seemed 00:08:34.100 --> 00:08:37.179 to have made everything much worse. And perhaps 00:08:37.179 --> 00:08:40.820 this isn't completely surprising. I don't want 00:08:40.820 --> 00:08:43.200 anyone that's listening to like get freaked out 00:08:43.200 --> 00:08:45.299 if they are offered budassinide. Because, you 00:08:45.299 --> 00:08:48.779 know, it is part of the standard care. Like it 00:08:48.779 --> 00:08:52.200 does work. I think for my situation. there's 00:08:52.200 --> 00:08:54.200 a lot going on with the immune system that all 00:08:54.200 --> 00:08:56.320 you know if you try and suppress it sometimes 00:08:56.320 --> 00:08:58.679 it comes back in full force to do the opposite 00:08:58.679 --> 00:09:00.720 you know and when when you're when you're twiddling 00:09:00.720 --> 00:09:02.919 with immunosuppressants you know sometimes it 00:09:02.919 --> 00:09:05.100 doesn't follow completely the predictable trend 00:09:05.100 --> 00:09:07.559 I mean it was better than not doing anything 00:09:07.559 --> 00:09:11.240 at all though so I was put on budesonide did 00:09:11.240 --> 00:09:14.019 not help the situation at all I did change up 00:09:14.019 --> 00:09:16.200 my diet drastically as well I was just a lot 00:09:16.200 --> 00:09:18.419 more I wasn't doing anything bad before but I 00:09:18.419 --> 00:09:20.480 think I was just a lot more accountable you know 00:09:20.480 --> 00:09:24.159 to like maybe not having extra extra glass of 00:09:24.159 --> 00:09:27.940 wine on the weekend or extra you know cocktail 00:09:27.940 --> 00:09:31.200 or two or not having pizza or something I was 00:09:31.200 --> 00:09:34.820 being a lot more accountable but ultimately we 00:09:34.820 --> 00:09:37.419 knew that I had to start something to really 00:09:37.419 --> 00:09:39.720 keep everything under control, just from a quality 00:09:39.720 --> 00:09:43.259 of life, but also the risk of potential serious 00:09:43.259 --> 00:09:47.379 consequences later on down the line. So I started 00:09:47.379 --> 00:09:50.720 a biologic. It's a relatively newer. I would 00:09:50.720 --> 00:09:53.179 say, class of biologics. It's called Entivio. 00:09:53.240 --> 00:09:56.000 That's the name that I'm on. It's the type of, 00:09:56.039 --> 00:09:59.539 for those immunology nerds out there, it's a 00:09:59.539 --> 00:10:03.299 type of anti -integrin agent. It's called vedolizumab. 00:10:03.620 --> 00:10:06.259 So people might know it from its antibody name. 00:10:06.419 --> 00:10:09.639 But I've been on it since March of this year. 00:10:10.240 --> 00:10:13.919 And it has definitely been a game changer. Absolute 00:10:13.919 --> 00:10:16.539 game changer. No regrets. Only regret is I didn't 00:10:16.539 --> 00:10:19.120 start sooner, to be honest. You've been on that 00:10:19.120 --> 00:10:22.100 since March this year, you said. How are you 00:10:22.100 --> 00:10:26.740 feeling today? What is life like currently? Oh, 00:10:26.740 --> 00:10:28.940 gosh. I mean, I got my quality of life back. 00:10:29.039 --> 00:10:32.240 I'm not running to the toilet every second of 00:10:32.240 --> 00:10:35.580 the day or having to have access to a toilet 00:10:35.580 --> 00:10:41.519 nearby. And also, real talk, I want a nice bathroom. 00:10:41.960 --> 00:10:44.320 okay if you know I'm gonna put my bum on that 00:10:44.320 --> 00:10:47.580 seat five times a day I don't want like a gas 00:10:47.580 --> 00:10:51.399 station bathroom it's just it's too anxiety driving 00:10:51.399 --> 00:10:54.899 so I would be obviously me and my now husband 00:10:54.899 --> 00:10:57.259 at the time my partner we're just like is there 00:10:57.259 --> 00:10:59.840 a nice hotel nearby I just need a hotel that's 00:10:59.840 --> 00:11:03.200 nearby so I could use their lobby restroom it's 00:11:03.200 --> 00:11:05.059 so nice to not have to worry about that anymore 00:11:05.059 --> 00:11:07.759 it's nice to be able to go for a nice meal and 00:11:07.759 --> 00:11:11.440 not have to scout the menu hours before and properly 00:11:11.440 --> 00:11:14.139 interrogate every single meal and to make sure 00:11:14.139 --> 00:11:16.759 that I can have this this this this or if we're 00:11:16.759 --> 00:11:19.159 going to friends houses and they're hosting us 00:11:19.159 --> 00:11:22.159 not having to be that guest that's you know listing 00:11:22.159 --> 00:11:24.340 off a bunch of dietary restrictions when they're 00:11:24.340 --> 00:11:26.879 just ultimately being polite and they just don't 00:11:26.879 --> 00:11:29.200 want to kill you you know with like a severe 00:11:29.200 --> 00:11:32.740 nut allergy so I think it's better to have my 00:11:32.740 --> 00:11:35.820 life back in that sense so I am tolerant of it 00:11:35.820 --> 00:11:39.620 seems like pretty much every food that was aggravating 00:11:39.620 --> 00:11:42.539 for me before you know don't have that urgency 00:11:42.539 --> 00:11:45.860 anymore no more diarrhea the stools are formed 00:11:45.860 --> 00:11:50.580 which is nice that was new for me as well um 00:11:50.580 --> 00:11:54.600 fantastic yes exactly so but then i will say 00:11:54.600 --> 00:11:57.179 we haven't gone in with any of like the biomarkers 00:11:57.179 --> 00:11:59.100 yet we've not done any of like the testing just 00:11:59.100 --> 00:12:03.820 to make sure that um it's working so i mean it 00:12:03.820 --> 00:12:07.639 i know symptomatically it is but i think my next 00:12:07.639 --> 00:12:10.559 visit we're gonna go and we're gonna do some 00:12:10.559 --> 00:12:12.960 tests just to confirm that everything is working 00:12:12.960 --> 00:12:17.919 yeah you mentioned that you've done some changes 00:12:17.919 --> 00:12:21.659 to your lifestyle in relation to paying attention 00:12:21.659 --> 00:12:26.480 more to diet but how else has Crohn's impacted 00:12:26.480 --> 00:12:32.269 you in terms of in terms of how you navigate 00:12:32.269 --> 00:12:34.850 life. Any other lifestyle changes that you found 00:12:34.850 --> 00:12:38.570 useful that worked for you in dealing with Crohn's? 00:12:38.929 --> 00:12:42.070 So this might be another controversial one to 00:12:42.070 --> 00:12:45.269 some people that are in the tribe, I would say, 00:12:45.350 --> 00:12:48.490 but I was like a big CrossFitter, so I loved 00:12:48.490 --> 00:12:52.590 CrossFit. And, you know, that was my jam. I got 00:12:52.590 --> 00:12:57.990 into it like in 2019, I think 2018. And once 00:12:57.990 --> 00:12:59.710 you're in the tribe, you're in the tribe. I'm 00:12:59.710 --> 00:13:00.990 not going to call it cult because, you know, 00:13:01.009 --> 00:13:02.730 we'll get yelled at. I'll get yelled at. But 00:13:02.730 --> 00:13:04.169 once you're in the tribe, you're in the tribe. 00:13:04.309 --> 00:13:06.730 And I loved it. I love the weightlifting aspect. 00:13:06.809 --> 00:13:10.529 I love the high intensity. But what I found interesting 00:13:10.529 --> 00:13:16.009 was as my symptoms progressed, I noticed very 00:13:16.009 --> 00:13:20.210 visibly I was not able to keep up with the workouts. 00:13:20.309 --> 00:13:24.490 I was not able to recover. My mates were able 00:13:24.490 --> 00:13:27.330 to do it every day, at least three days in a 00:13:27.330 --> 00:13:29.509 row, one day off, four days in a row, one day 00:13:29.509 --> 00:13:32.289 off. At one point when I was in the UK, I was 00:13:32.289 --> 00:13:35.850 able to do that. When I started doing CrossFit 00:13:35.850 --> 00:13:39.769 out here, I did one workout and I was fried for 00:13:39.769 --> 00:13:43.169 like two, three days. And I noticed like, yeah, 00:13:43.210 --> 00:13:45.929 I was not able to recover. I was not able to 00:13:45.929 --> 00:13:48.710 keep up. And it didn't make sense because I was 00:13:48.710 --> 00:13:50.590 obviously pushing more away. I was obviously 00:13:50.590 --> 00:13:53.610 getting, I was improving some of like my stats. 00:13:53.970 --> 00:13:56.629 But then I realized, wait, I mean, there's a 00:13:56.629 --> 00:13:59.330 whole other conversation we can have about this 00:13:59.330 --> 00:14:01.490 because there's actual definite like links with 00:14:01.490 --> 00:14:03.710 the immune system. And if you go too hard exercise 00:14:03.710 --> 00:14:07.639 wise and the potential effects, but. So I ended 00:14:07.639 --> 00:14:10.019 up completely stripping back. So I haven't picked 00:14:10.019 --> 00:14:13.080 up a barbell in a long time. I am now a Pilates 00:14:13.080 --> 00:14:16.799 girl, very Los Angeles. I go to my Pilates with 00:14:16.799 --> 00:14:19.320 my Stanley Cup. And I mean, it's actually been 00:14:19.320 --> 00:14:21.659 very beneficial for me to step back like that. 00:14:21.720 --> 00:14:24.259 So having to strip back those workouts, I would 00:14:24.259 --> 00:14:27.919 say. Hmm. I'm no longer in LA, but I still, I 00:14:27.919 --> 00:14:30.240 got my Stanley cup right here and it's sort of 00:14:30.240 --> 00:14:32.100 like a lifesaver in terms of, well, there you 00:14:32.100 --> 00:14:34.419 go. You got the pink one. Is that the one that 00:14:34.419 --> 00:14:38.519 I saw? No, it's the white one. Oh, I like, yeah, 00:14:38.559 --> 00:14:41.240 exactly. That's a good one. You mentioned something, 00:14:41.340 --> 00:14:42.919 you mentioned something that, that, that sparked 00:14:42.919 --> 00:14:44.899 my sort of curiosity. You said, you know, if 00:14:44.899 --> 00:14:47.639 you go too hard with exercising, that sort of 00:14:47.639 --> 00:14:49.460 could have a negative impact. Could you elaborate 00:14:49.460 --> 00:14:51.629 on this a little bit? Cause I'm. You know, a 00:14:51.629 --> 00:14:53.350 lot of people, they just like exercise, exercise, 00:14:53.470 --> 00:14:54.789 exercise, exercise all the time, you know, push 00:14:54.789 --> 00:14:58.809 your body. But what's the deal here? There's 00:14:58.809 --> 00:15:00.549 a lot of immunology. I mean, there's a lot of 00:15:00.549 --> 00:15:03.970 hardcore immunology in this, but sort of like 00:15:03.970 --> 00:15:07.169 kind of like Goldilocks theory in that sense 00:15:07.169 --> 00:15:09.850 of like too little and too far. You know, you 00:15:09.850 --> 00:15:12.350 need to find that balance of just right. And 00:15:12.350 --> 00:15:15.279 there is, okay, so I'm going to say. exercise 00:15:15.279 --> 00:15:20.279 is just wonders for the body make like it's anti 00:15:20.279 --> 00:15:24.080 -cancer we can also classify it you know exercise 00:15:24.080 --> 00:15:27.340 is being explored alongside standard of care 00:15:27.340 --> 00:15:29.679 for cancer patients to be able to boost their 00:15:29.679 --> 00:15:31.899 immune systems to fight cancer you know that's 00:15:31.899 --> 00:15:35.539 like in the cancer field And even in general 00:15:35.539 --> 00:15:38.600 for immunoregulation, which is this whole topic 00:15:38.600 --> 00:15:41.860 of autoimmunity, is something's gone wrong with 00:15:41.860 --> 00:15:44.460 regulating the immune system or immunoregulation. 00:15:44.559 --> 00:15:48.139 In general, exercise does wonders for our actual 00:15:48.139 --> 00:15:51.779 muscles and our tissues and boosting the anti 00:15:51.779 --> 00:15:56.360 -inflammatory cells versus the cells that cause 00:15:56.360 --> 00:16:00.490 inflammation, the pro -inflammatory cells. with 00:16:00.490 --> 00:16:03.529 all that but you know you can go too far and 00:16:03.529 --> 00:16:06.450 swing the other way and it is a balance right 00:16:06.450 --> 00:16:09.750 if you are wrecking your body every single day 00:16:09.750 --> 00:16:12.929 and building up those stress levels in your body 00:16:12.929 --> 00:16:15.090 as well your immune system is driven by stress 00:16:15.090 --> 00:16:17.289 you know your immune cells have hormone receptors 00:16:17.289 --> 00:16:19.889 you know and that's good but it's also bad in 00:16:19.889 --> 00:16:22.289 terms of how they move around your body and if 00:16:22.289 --> 00:16:24.269 you're not giving your body adequate time to 00:16:24.269 --> 00:16:27.419 recover Now, obviously, that doesn't just have 00:16:27.419 --> 00:16:30.080 ramifications on your actual like tissues, but 00:16:30.080 --> 00:16:33.940 also on your immune system as well. So that's 00:16:33.940 --> 00:16:36.899 kind of keeping it very high level. But that's 00:16:36.899 --> 00:16:39.379 why it's very important to listen to your body 00:16:39.379 --> 00:16:42.419 and to not get caught up in the hype, especially 00:16:42.419 --> 00:16:45.000 I found you know, at least for me with CrossFit, 00:16:45.080 --> 00:16:47.500 if I didn't keep up with my classmates, I would 00:16:47.500 --> 00:16:49.320 get like stressed out. And I think like class 00:16:49.320 --> 00:16:51.120 environments can, I think class environments 00:16:51.120 --> 00:16:54.179 are great, by the way. It motivates me, but that's 00:16:54.179 --> 00:16:56.379 something you can definitely tell, like you feel 00:16:56.379 --> 00:16:58.539 the pressure if you don't, especially if it's 00:16:58.539 --> 00:17:00.639 like a time cap and you don't finish the workout 00:17:00.639 --> 00:17:02.840 in the time you're last in the class to finish. 00:17:03.419 --> 00:17:06.579 And it might make you want to go harder, but 00:17:06.579 --> 00:17:08.420 then you're thinking, hang on, how does that? 00:17:08.920 --> 00:17:11.160 What's the impact on my body? You know, it's 00:17:11.160 --> 00:17:13.740 not just not being hard enough or badass enough, 00:17:14.019 --> 00:17:17.319 you know. Okay, let's close that parenthesis 00:17:17.319 --> 00:17:18.759 and we're going to come back to all this autoimmune 00:17:18.759 --> 00:17:22.859 immunology stuff very, very shortly. But yes, 00:17:22.920 --> 00:17:25.240 you got diagnosed recently, but that does not 00:17:25.240 --> 00:17:27.640 mean that you haven't had your experiences with 00:17:27.640 --> 00:17:31.619 this disease. So between your diagnosis and today, 00:17:31.859 --> 00:17:34.960 how do you feel that Crohn's disease has changed 00:17:34.960 --> 00:17:38.769 you as a person in general? So I'm interesting 00:17:38.769 --> 00:17:41.730 in the sense of I'm trying to not let it completely 00:17:41.730 --> 00:17:46.049 define me because you can go down rabbit holes 00:17:46.049 --> 00:17:49.250 about what could happen in 10, 20 years time, 00:17:49.349 --> 00:17:51.609 you know, if you're not careful enough and it 00:17:51.609 --> 00:17:55.269 can be a very scary place to go. So I think I'm 00:17:55.269 --> 00:17:58.109 mindful enough to take it seriously and to not 00:17:58.109 --> 00:18:00.349 ignore it because if you ignore it, then of course, 00:18:00.349 --> 00:18:03.390 then that also has its ramifications, but also 00:18:03.390 --> 00:18:06.319 to not get completely sucked into like. over 00:18:06.319 --> 00:18:08.920 analyzing every single symptom if i have an off 00:18:08.920 --> 00:18:11.279 day or if i have a meal that's throwing me off 00:18:11.279 --> 00:18:14.039 slightly like i did have food poisoning like 00:18:14.039 --> 00:18:16.200 two months ago and i thought my life was over 00:18:16.200 --> 00:18:19.980 i was like this is it this is how it ends um 00:18:19.980 --> 00:18:25.440 which is an experience but i think it has definitely 00:18:25.440 --> 00:18:29.440 one massive benefit is it's allowed me to be 00:18:29.440 --> 00:18:33.119 kinder to myself um especially when it comes 00:18:33.119 --> 00:18:36.980 to fitness like gym related aspects and just 00:18:36.980 --> 00:18:40.579 thinking oh do I'm not am I not resilient enough 00:18:40.579 --> 00:18:44.440 I'm not in the 5 a .m club you know I'm not surviving 00:18:44.440 --> 00:18:47.940 on four hours sleep no sleep is necessary for 00:18:47.940 --> 00:18:50.420 your immune system like you know which is the 00:18:50.420 --> 00:18:53.019 priority at this point you know I think it's 00:18:53.019 --> 00:18:55.519 being kinder to myself and also listening to 00:18:55.519 --> 00:18:58.380 my body not getting sucked up by the hustle culture 00:18:58.380 --> 00:19:02.369 around me um because they're not suffering from 00:19:02.369 --> 00:19:04.710 my symptoms. And even if they are, then, you 00:19:04.710 --> 00:19:06.130 know, they're doing a good job of keeping it 00:19:06.130 --> 00:19:09.170 quiet. So I think that's been the biggest, I 00:19:09.170 --> 00:19:11.410 think it's been me being kinder to myself, but 00:19:11.410 --> 00:19:13.990 also knowing, and that's a big lesson for everybody, 00:19:14.170 --> 00:19:16.730 I did not do anything to cause this. Ultimately, 00:19:16.930 --> 00:19:19.769 in most cases with autoimmune diseases, there 00:19:19.769 --> 00:19:24.150 is a very strong genetic element to it. And there's 00:19:24.150 --> 00:19:27.450 like genes which we have directly tied to what 00:19:27.450 --> 00:19:30.740 the downstream. manifestation would be. But there's 00:19:30.740 --> 00:19:35.500 also, I think, easily over 100 potential genes 00:19:35.500 --> 00:19:37.819 that we've identified, but we don't even know 00:19:37.819 --> 00:19:40.000 what they quite do. But we know that they are 00:19:40.000 --> 00:19:43.400 a risk for IBD. So I think it's also being kind 00:19:43.400 --> 00:19:46.420 to myself and knowing that I didn't cause this. 00:19:46.539 --> 00:19:49.240 This isn't my fault. And just being at peace 00:19:49.240 --> 00:19:52.819 with that, really. I was actually going to touch 00:19:52.819 --> 00:19:54.940 on that subject. And I got to make sure I don't 00:19:54.940 --> 00:19:56.700 forget about all the other questions I want to 00:19:56.700 --> 00:19:59.839 ask as a follow up here. But Sometimes I have 00:19:59.839 --> 00:20:04.079 people who literally told me in the past, you're 00:20:04.079 --> 00:20:06.720 an anxious person. You have this situation that's 00:20:06.720 --> 00:20:09.019 stressful for you. You have those family issues 00:20:09.019 --> 00:20:11.559 over there. This is what causes your autoimmune 00:20:11.559 --> 00:20:15.960 disease. What do you respond to such a statement? 00:20:16.440 --> 00:20:20.000 So it is difficult because there are definitely 00:20:20.000 --> 00:20:25.430 interesting links for sure between sort of as 00:20:25.430 --> 00:20:28.410 I say stress and the immune system and even like 00:20:28.410 --> 00:20:32.029 that gut barrier and it's like quote -unquote 00:20:32.029 --> 00:20:34.369 leakiness I don't like that phrase because it 00:20:34.369 --> 00:20:36.490 gets tooted around so much now but everybody 00:20:36.490 --> 00:20:38.829 thinks they got that leaky gut but you know really 00:20:38.829 --> 00:20:42.430 that you know leaky gut comes from like IBD essentially 00:20:42.430 --> 00:20:45.670 you know that barrier that integrity it becomes 00:20:45.670 --> 00:20:50.700 a lot more you know leaky per se so I definitely 00:20:50.700 --> 00:20:53.700 think that there is definitely some science to 00:20:53.700 --> 00:20:58.319 it. And we do know that the neuro -immuno -endo 00:20:58.319 --> 00:21:01.400 axis, so like the brain, the immune system, and 00:21:01.400 --> 00:21:04.599 the hormones, everything is linked. And, you 00:21:04.599 --> 00:21:07.619 know, I mean, I could go on for this for days, 00:21:07.640 --> 00:21:10.559 but when you're thinking about... your diagnosis 00:21:10.559 --> 00:21:13.339 or your like disease you have to think about 00:21:13.339 --> 00:21:16.000 it holistically like don't just be like oh I 00:21:16.000 --> 00:21:18.519 had I there's one incident maybe one incident 00:21:18.519 --> 00:21:21.599 could have been the final trigger but you know 00:21:21.599 --> 00:21:25.299 your body is you know your your entire being 00:21:25.299 --> 00:21:28.180 is not just going to be responsive to like one 00:21:28.180 --> 00:21:31.289 specific trigger it's as I say it's your It's 00:21:31.289 --> 00:21:33.569 your cardiovascular system. It's your nervous 00:21:33.569 --> 00:21:35.450 system. It's your hormone system. It's your immune 00:21:35.450 --> 00:21:36.970 system. You've got all these different elements. 00:21:37.130 --> 00:21:39.970 So with that, you know that, of course, stress 00:21:39.970 --> 00:21:44.069 does also feed to your gut. And, you know, it 00:21:44.069 --> 00:21:46.930 does mobilize the immune cells as well in the 00:21:46.930 --> 00:21:49.509 gut. And there's really interesting, like, studies 00:21:49.509 --> 00:21:52.670 coming out about even depression and its links 00:21:52.670 --> 00:21:56.369 to the gut. And, again, that's not surprising 00:21:56.369 --> 00:22:03.190 at all. linked in this way or synced i should 00:22:03.190 --> 00:22:08.990 say but i think to go as so far as to extrapolate 00:22:08.990 --> 00:22:12.789 and say that is why you have crohn's disease 00:22:12.789 --> 00:22:15.789 or ulcerative colitis because you had a breakdown 00:22:15.789 --> 00:22:19.470 over that breakup that you had let's not go that 00:22:19.470 --> 00:22:22.849 far do you know what i mean absolutely absolutely 00:22:24.200 --> 00:22:26.660 linked but you know there's a strong genetic 00:22:26.660 --> 00:22:29.759 part that is in play here as well and i don't 00:22:29.759 --> 00:22:32.059 want to say we use genetics as an excuse but 00:22:32.059 --> 00:22:35.599 yeah this is something where most of the time 00:22:35.599 --> 00:22:37.559 it's not like you said it's not our fault right 00:22:37.559 --> 00:22:39.200 like we are given the genes that we're given 00:22:39.200 --> 00:22:41.500 you know we cannot pick and choose so that's 00:22:41.500 --> 00:22:46.980 that balance yeah yeah very interesting now in 00:22:46.980 --> 00:22:49.039 your previous response you talked about fear 00:22:49.680 --> 00:22:51.420 You talked about, you know, fear down the road, 00:22:51.480 --> 00:22:53.880 you know, is this disease coming back with a 00:22:53.880 --> 00:22:55.920 vengeance? Am I going to flare up potentially? 00:22:56.140 --> 00:22:57.559 And I got to say, I'm the first one who's guilty 00:22:57.559 --> 00:22:59.779 with this. I mean, just about two months ago, 00:22:59.940 --> 00:23:03.720 I had a calprotectin. It was 150 or so. It was 00:23:03.720 --> 00:23:07.180 the first time that it was, well, slightly elevated 00:23:07.180 --> 00:23:09.420 in years because I've had the chance to be in 00:23:09.420 --> 00:23:12.299 remission for the better part of 10 years. And 00:23:12.299 --> 00:23:13.599 so, of course, I'm like, you know, messaging 00:23:13.599 --> 00:23:16.539 my doctor, hey, should we do a colonoscopy? Should 00:23:16.539 --> 00:23:19.430 we do more testing? She says, I'm not really 00:23:19.430 --> 00:23:22.170 worried. We were supposed to do colonoscopy next 00:23:22.170 --> 00:23:24.109 year anyway, but hey, if it calms you down, sure, 00:23:24.190 --> 00:23:25.670 why don't we just do it now? It doesn't really 00:23:25.670 --> 00:23:30.049 matter. So what is your message to people, well, 00:23:30.109 --> 00:23:33.190 like me and others, that might have a little 00:23:33.190 --> 00:23:35.950 bit of an elevated fear, especially if also they're 00:23:35.950 --> 00:23:40.569 in remission, about this next symptom or anything 00:23:40.569 --> 00:23:44.069 that could potentially remind oneself to flare, 00:23:44.250 --> 00:23:47.609 but that might not actually be what's happening? 00:23:49.610 --> 00:23:52.890 Hmm. It's interesting you say this because I've 00:23:52.890 --> 00:23:56.630 kind of been in a similar situation. So I'm trying 00:23:56.630 --> 00:23:59.869 to think about how I would advise myself. One 00:23:59.869 --> 00:24:05.869 time my calprotectin was over 1400. And there's 00:24:05.869 --> 00:24:08.390 a whole crazy story about that as well, which 00:24:08.390 --> 00:24:10.009 I really want to be careful because I don't want 00:24:10.009 --> 00:24:13.009 to spread misinformation either. But it ties 00:24:13.009 --> 00:24:15.910 into my story. I actually had, that's why I switched 00:24:15.910 --> 00:24:19.200 to a Stanley Cup. I had another water bottle. 00:24:19.259 --> 00:24:21.259 I'm not going to say the name because I'm not 00:24:21.259 --> 00:24:23.140 the brand because I'm not going to be, I don't 00:24:23.140 --> 00:24:26.279 want to be dealing with that. But I didn't, I 00:24:26.279 --> 00:24:28.420 mean, I was gross and I clearly didn't clean 00:24:28.420 --> 00:24:31.279 it properly. And within the rubber, it had a 00:24:31.279 --> 00:24:33.079 rubber ring, you know, the rubber ring inside. 00:24:33.559 --> 00:24:36.940 And we, well, we took it like out where there 00:24:36.940 --> 00:24:40.680 was like clearly mold in it, you know. And we 00:24:40.680 --> 00:24:43.640 actually, with me being at... did the job that 00:24:43.640 --> 00:24:46.940 I have we have a microbiology lab like the head 00:24:46.940 --> 00:24:49.420 of microbiology sat in the office next to mine 00:24:49.420 --> 00:24:51.559 so I just went over and I was like hey can we 00:24:51.559 --> 00:24:54.569 just plate this and can we culture it And I mean, 00:24:54.569 --> 00:24:56.589 anything grows when you put it on like an agar 00:24:56.589 --> 00:24:59.509 plate. But this was like noticeable in the conditions. 00:25:00.710 --> 00:25:03.150 Immediately, there was some sort of growth and 00:25:03.150 --> 00:25:05.410 we didn't send it off for IDing. But anyways, 00:25:05.589 --> 00:25:07.690 so I'm not going to like get people to freak 00:25:07.690 --> 00:25:09.990 out over mold because there's so much misinformation 00:25:09.990 --> 00:25:12.710 about mold and mold testing and all of that. 00:25:12.910 --> 00:25:16.049 But when I switched water bottles, my Calprotectin 00:25:16.049 --> 00:25:20.730 aggressively dropped from 1430 down to like... 00:25:20.859 --> 00:25:23.460 around less than a hundred it was it was a crazy 00:25:23.460 --> 00:25:26.200 situation but anyways so also like yeah you just 00:25:26.200 --> 00:25:29.319 don't know i mean situations like that can like 00:25:29.319 --> 00:25:31.779 trigger but i'm going to be careful because calprotectin 00:25:31.779 --> 00:25:36.859 is also very much a biomarker for ibd um i think 00:25:36.859 --> 00:25:41.119 so i'm you know i'm as i say i'm not a clinician 00:25:41.119 --> 00:25:44.380 so clinicians might argue with me on this i just 00:25:44.380 --> 00:25:46.980 know from my experience, like that one, and even 00:25:46.980 --> 00:25:49.599 just knowing about blood work, it really is just 00:25:49.599 --> 00:25:52.819 a snapshot in the moment of time, right? It's 00:25:52.819 --> 00:25:56.680 the snapshot of what happened, you know, the 00:25:56.680 --> 00:25:59.000 day before, you know, or the day before that. 00:25:59.480 --> 00:26:04.519 So that's why I think while there are some biomarkers 00:26:04.519 --> 00:26:06.539 that you definitely need to act on immediately. 00:26:07.640 --> 00:26:09.619 There are others where you have to look, as I 00:26:09.619 --> 00:26:11.380 say, look at the whole picture. You've got to 00:26:11.380 --> 00:26:13.880 look holistically. How is everything else? How 00:26:13.880 --> 00:26:17.039 are you behaving symptomatically? How are your 00:26:17.039 --> 00:26:19.180 stools at the moment? Are you passing blood? 00:26:19.660 --> 00:26:23.039 How are your other biomarkers? How's even your 00:26:23.039 --> 00:26:26.720 general inflammatory markers in your body? So 00:26:26.720 --> 00:26:32.079 I would say when you freak out, look at the whole 00:26:32.079 --> 00:26:35.750 picture. I will also... caveat when I say that 00:26:35.750 --> 00:26:37.769 because I know symptoms doesn't always paint 00:26:37.769 --> 00:26:40.349 the full picture you have some cases of course 00:26:40.349 --> 00:26:44.190 where people are asymptomatic and then don't 00:26:44.190 --> 00:26:47.849 even know and they have Crohn's or you know obstructive 00:26:47.849 --> 00:26:49.970 colitis which is just crazy as well that's also 00:26:49.970 --> 00:26:53.950 very scary yeah so I don't know what my advice 00:26:53.950 --> 00:26:56.730 would be don't over freak out and partner with 00:26:56.730 --> 00:27:00.279 a good GI physician properly Absolutely, absolutely. 00:27:00.500 --> 00:27:02.640 And that's what kept me in check as well, to 00:27:02.640 --> 00:27:06.240 have someone that tells me in her reply, I am 00:27:06.240 --> 00:27:09.619 not worried. Yes. Interestingly enough, our relationship 00:27:09.619 --> 00:27:13.759 is so strong that I worried less, you know, I 00:27:13.759 --> 00:27:15.519 was able to calm down. I got to be honest with 00:27:15.519 --> 00:27:17.559 you, scheduling a colonoscopy also gave me the 00:27:17.559 --> 00:27:19.160 peace of mind, you know, it's coming up in a 00:27:19.160 --> 00:27:21.240 couple of weeks, but still, you know, reading 00:27:21.240 --> 00:27:25.339 that and this coming from somebody who's really... 00:27:25.710 --> 00:27:28.369 proactive, who really knows their stuff in this 00:27:28.369 --> 00:27:32.509 field, it does provide some sense of relief for 00:27:32.509 --> 00:27:36.049 sure. You kind of spoiled it already where let's 00:27:36.049 --> 00:27:39.349 say for anybody listening, it's no longer a secret 00:27:39.349 --> 00:27:43.349 that you're not just anyone who's interested 00:27:43.349 --> 00:27:46.650 in science, IBD, you are actually a scientist 00:27:46.650 --> 00:27:51.210 and you are very well -versed in immunology. 00:27:51.730 --> 00:27:54.529 So I would love to talk a little bit about this. 00:27:54.910 --> 00:27:58.509 Because for so many IBD patients, Crohn's or 00:27:58.509 --> 00:28:02.589 colitis, this top tier of medications, the biologics, 00:28:02.609 --> 00:28:05.490 is sort of like lifeline drugs, right? Like this 00:28:05.490 --> 00:28:09.670 is what keeps them in remission. Lots of us stick 00:28:09.670 --> 00:28:12.609 with one treatment for a long time. Others, even 00:28:12.609 --> 00:28:15.089 like myself, we sort of develop antibodies and 00:28:15.089 --> 00:28:16.589 then we have to switch to the next biologic. 00:28:17.009 --> 00:28:19.450 There's a lot of information out there. There's 00:28:19.450 --> 00:28:22.759 a lot of misconceptions out there. Yeah. But 00:28:22.759 --> 00:28:26.740 going back to the basics, especially for those 00:28:26.740 --> 00:28:29.039 who have been recently diagnosed or who know 00:28:29.039 --> 00:28:31.160 people, care for people who are diagnosed recently, 00:28:31.200 --> 00:28:35.200 could you very quickly take us through an easy 00:28:35.200 --> 00:28:38.240 enough to understand to the average human being 00:28:38.240 --> 00:28:41.880 definition of a biologic, especially in context 00:28:41.880 --> 00:28:46.859 also of IBD? Yes. So I think with the IBD specific 00:28:46.859 --> 00:28:50.119 drugs, when I think of the biologics, I think 00:28:50.119 --> 00:28:53.240 of those like immunomodulators, we obviously 00:28:53.240 --> 00:28:57.039 call them those that change up the immune system. 00:28:57.619 --> 00:29:01.220 That's exactly what it stands for. I guess it's 00:29:01.220 --> 00:29:03.259 not really change up, just sort of like, you 00:29:03.259 --> 00:29:07.839 know, tips the balance. let's say. So the classic 00:29:07.839 --> 00:29:10.599 biologics, I mean, you've mentioned, you know, 00:29:10.640 --> 00:29:14.259 Ramecage, that's a perfect example. That's an 00:29:14.259 --> 00:29:18.900 anti -TNF agent. So a lot of options for like 00:29:18.900 --> 00:29:21.259 the newer class for IBD patients, I mean, not 00:29:21.259 --> 00:29:22.660 even newer class, some of these have been around 00:29:22.660 --> 00:29:26.700 for like 20 years or so, is they target cytokines. 00:29:27.019 --> 00:29:31.410 So what a cytokine is, is it's basically how 00:29:31.410 --> 00:29:34.009 your immune cells communicate to each other like 00:29:34.009 --> 00:29:36.869 the signals that they use if the language they 00:29:36.869 --> 00:29:40.609 use is cytokines and that can even be like non 00:29:40.609 --> 00:29:43.869 -immune cells speaking directly to immune cells 00:29:43.869 --> 00:29:47.089 like for example like your gut barrier speaking 00:29:47.089 --> 00:29:50.269 to your immune cells so cytokines is the language 00:29:50.269 --> 00:29:54.690 that they use but they also it's not even just 00:29:54.690 --> 00:29:57.130 the language in the sense of just like telling 00:29:57.920 --> 00:30:00.960 this cell to go over here, it also is telling 00:30:00.960 --> 00:30:05.619 the cell to become this or do this role. Now, 00:30:05.720 --> 00:30:10.420 when you think about the ones for IBD, like anti 00:30:10.420 --> 00:30:15.859 -TNF, so infliximab, or like Ramecade, or anti 00:30:15.859 --> 00:30:21.019 -IL -12, which is like Stelara, and Sky Rezy 00:30:21.019 --> 00:30:24.420 is anti -IL -23, for example, that, like, blocks 00:30:24.420 --> 00:30:28.859 the IL -23 cytokine. So the cytokines can be, 00:30:28.880 --> 00:30:31.910 like, either have, like, the... TNF names, or 00:30:31.910 --> 00:30:34.950 the ILs. So that sounds for interleukin, like 00:30:34.950 --> 00:30:40.170 IL -12, IL -23. So those are all different cytokines 00:30:40.170 --> 00:30:42.750 or signals that bring about different responses. 00:30:42.829 --> 00:30:46.589 Depending on what cell releases, what cell catches 00:30:46.589 --> 00:30:49.849 it, I mean, specific cells respond to specific 00:30:49.849 --> 00:30:52.710 cytokines, that is going to cause the response. 00:30:53.009 --> 00:30:58.299 Now, IL -12, IL -23, TNF. in this case, TNF alpha 00:30:58.299 --> 00:31:01.319 mainly, there's also TNF beta. Anyways, they're 00:31:01.319 --> 00:31:03.339 all very important in your immune system because 00:31:03.339 --> 00:31:07.259 if you have infection, they all kick in and they 00:31:07.259 --> 00:31:09.839 obviously cause, they mold the immune system 00:31:09.839 --> 00:31:13.259 to be able to fight the infection or, you know, 00:31:13.299 --> 00:31:17.119 or like tell other T cells to turn into this 00:31:17.119 --> 00:31:20.220 type of T cell or to become this kind of like 00:31:20.220 --> 00:31:23.299 more differentiated, specialized immune cell 00:31:23.299 --> 00:31:26.769 to go clear this infection. That's great. But 00:31:26.769 --> 00:31:31.109 when you have IBD and other specific autoimmune 00:31:31.109 --> 00:31:34.869 diseases, which obviously this is tied to, it 00:31:34.869 --> 00:31:37.630 also can be the wrong kind. It can be inflammation 00:31:37.630 --> 00:31:41.750 against you. So not just against clearing infections, 00:31:41.990 --> 00:31:44.809 but also unfortunately fighting your own body. 00:31:44.970 --> 00:31:48.490 So we need to tamper that. We need to calm that 00:31:48.490 --> 00:31:52.029 down. So that is obviously when these biologics 00:31:52.029 --> 00:31:55.309 come in. Obviously, as you said, you were, I 00:31:55.309 --> 00:31:57.690 think, Khan, you said like an anti -TNF agent. 00:31:58.210 --> 00:32:01.009 Yeah, Remicade and then later Humira, Symfony. 00:32:01.470 --> 00:32:06.529 Yes, exactly. So obviously that was doing that 00:32:06.529 --> 00:32:09.730 response that was basically calming down the 00:32:09.730 --> 00:32:14.170 TNF. Now, obviously, the next question that we 00:32:14.170 --> 00:32:16.750 get typically is, oh, but that sounds like very 00:32:16.750 --> 00:32:19.390 important for your immune system. Are you going 00:32:19.390 --> 00:32:24.589 to be at risk by stopping? that particular cytokine 00:32:24.589 --> 00:32:28.190 or that signal now this was always a big fear 00:32:28.190 --> 00:32:30.970 like amongst the scientific community and I mean 00:32:30.970 --> 00:32:33.369 it's an understandable fear because yes I mean 00:32:33.369 --> 00:32:35.529 you know think about it like on paper that's 00:32:35.529 --> 00:32:38.829 how all that works but there is now tons of data 00:32:38.829 --> 00:32:42.349 and studies to support like the long -term safety 00:32:42.349 --> 00:32:45.890 of these agents especially with like the newer 00:32:45.890 --> 00:32:49.089 class coming out already like the IL -12s the 00:32:49.089 --> 00:32:54.809 IL -23s and just how like how like you know your 00:32:54.809 --> 00:32:57.690 safety long term down the line versus of course 00:32:57.690 --> 00:33:00.250 you hear like immunocompromised like oh my immune 00:33:00.250 --> 00:33:02.950 system's compromised but also those are just 00:33:02.950 --> 00:33:05.490 one or two or three cytokines out of you have 00:33:05.490 --> 00:33:08.150 so many different arms of your immune system 00:33:08.150 --> 00:33:12.069 at work that you know if you knock out or like 00:33:12.069 --> 00:33:13.829 not even knock out it's not the right term sorry 00:33:13.829 --> 00:33:17.529 but if you quiet or silence this particular signal 00:33:17.529 --> 00:33:20.230 your rest of your immune system can still do 00:33:20.230 --> 00:33:23.369 its thing you know people are on like b -cell 00:33:23.369 --> 00:33:26.470 depleters like you know rituximab like proper 00:33:26.470 --> 00:33:30.769 like really going after all their b -cells or 00:33:30.769 --> 00:33:33.109 like most of their b -cells and they're still 00:33:33.109 --> 00:33:36.710 mostly fine now i want to also be careful when 00:33:36.710 --> 00:33:38.789 i say that obviously there are always caveats 00:33:38.789 --> 00:33:40.990 because of course yes you are immunocompromised 00:33:40.990 --> 00:33:44.730 please take safety precautions you know be safe 00:33:44.730 --> 00:33:47.369 if something's going around don't make dumb decisions 00:33:47.369 --> 00:33:49.390 that are going to put your health at risk but 00:33:49.390 --> 00:33:53.740 the biggest I want people to take away is that 00:33:53.740 --> 00:33:57.099 any potential risk of being immunocompromised 00:33:57.099 --> 00:33:59.700 or silencing this part of your immune system 00:33:59.700 --> 00:34:03.500 does not come close to letting an autoimmune 00:34:03.500 --> 00:34:06.960 disease run rampant in your body. That risk is 00:34:06.960 --> 00:34:11.400 far greater. And that's really a strong statement. 00:34:11.480 --> 00:34:14.099 And I think everybody should think about that. 00:34:16.930 --> 00:34:19.829 response do you have to people potentially even 00:34:19.829 --> 00:34:24.110 certain doctors who would tell you that being 00:34:24.110 --> 00:34:29.530 on biologics especially for decades on end is 00:34:29.530 --> 00:34:32.730 hurting the body is hurting your health long 00:34:32.730 --> 00:34:37.349 term sometimes they don't even mean this in a 00:34:37.349 --> 00:34:40.289 in a bad way i had my own partner asked asked 00:34:40.289 --> 00:34:43.440 me sometimes hey but Is it OK for your body to 00:34:43.440 --> 00:34:47.019 be on these biologics for the rest of your life? 00:34:47.199 --> 00:34:50.320 Right. What's your response here? So as they 00:34:50.320 --> 00:34:54.219 say, we are accruing data as time goes on, looking 00:34:54.219 --> 00:34:56.980 at long term studies. Now, we don't have a hundred 00:34:56.980 --> 00:34:59.480 year old study, you know, to look at. Someone 00:34:59.480 --> 00:35:01.280 has been on it for a hundred years, you know, 00:35:01.300 --> 00:35:04.619 but we have data definitely to support longitudinally 00:35:04.619 --> 00:35:08.019 that it's safe. And again, but my big my big 00:35:08.019 --> 00:35:10.869 question I would ask those people is. What's 00:35:10.869 --> 00:35:14.650 the bigger risk of not being on it? You know, 00:35:14.690 --> 00:35:17.369 the immune system is directly, I mean, the immune 00:35:17.369 --> 00:35:20.170 system's good, right? It keeps you alive every 00:35:20.170 --> 00:35:23.190 day and you're exposed to, you know, so many 00:35:23.190 --> 00:35:27.070 potential pathogenic agents every single day, 00:35:27.150 --> 00:35:31.349 but it keeps you alive. So it's powerful. What 00:35:31.349 --> 00:35:33.550 happens when it directs that powerful response 00:35:33.550 --> 00:35:36.730 against your own organs? What happens if you 00:35:36.730 --> 00:35:40.829 just let that do it, do what it wants? unrestricted 00:35:40.829 --> 00:35:45.630 uncontrolled that risk is far greater and you 00:35:45.630 --> 00:35:49.670 know every potential medical intervention every 00:35:49.670 --> 00:35:53.690 every yeah every medical intervention or treatment 00:35:53.690 --> 00:35:56.530 regimen carries some sort of risk always even 00:35:56.530 --> 00:35:58.329 take i mean for goodness sake i'm not going to 00:35:58.329 --> 00:36:00.230 make it about this but even taking tylenol or 00:36:00.230 --> 00:36:05.019 paracetamol let's not yeah yeah but Just to be 00:36:05.019 --> 00:36:08.139 clear, it doesn't cause autism, but get that 00:36:08.139 --> 00:36:09.940 out there. But even just taking that, you know, 00:36:09.980 --> 00:36:12.780 like anything carries a risk, but what is the 00:36:12.780 --> 00:36:16.900 risk of not taking that intervention? You know? 00:36:17.239 --> 00:36:20.659 Yeah. So that's what I would always post. Absolutely. 00:36:21.369 --> 00:36:23.610 Even biologists have come a long way. I remember 00:36:23.610 --> 00:36:26.349 back in 2013, and again, that's really not that 00:36:26.349 --> 00:36:28.750 long ago, but one of my fears, especially the 00:36:28.750 --> 00:36:31.769 first five to six, seven years when I would develop 00:36:31.769 --> 00:36:34.010 antibodies against the treatment, I have to switch 00:36:34.010 --> 00:36:36.750 to the next one. One of my fears was, what if 00:36:36.750 --> 00:36:41.250 I run out of options? Now, fast forward to 2025, 00:36:41.610 --> 00:36:44.070 I sometimes even talk to the nurses at my infusion 00:36:44.070 --> 00:36:46.090 center and they're telling me, oh my God, we 00:36:46.090 --> 00:36:48.610 have a new biologic hitting the market, basically, 00:36:51.210 --> 00:36:55.550 once a year maybe even more how do you evaluate 00:36:55.550 --> 00:36:58.610 sort of the current biologics biologics market 00:36:58.610 --> 00:37:01.889 and what will your message be to the people that 00:37:01.889 --> 00:37:05.230 are afraid of just burning through treatments 00:37:05.230 --> 00:37:08.329 and then ending up at a point where well i used 00:37:08.329 --> 00:37:14.409 all of them now what yeah um exactly what you 00:37:14.409 --> 00:37:20.929 said and the pace that science is being revolutionized 00:37:20.929 --> 00:37:24.349 right now we are moving at such a fast pace so 00:37:24.349 --> 00:37:27.030 I mean for example my career I'm in the cell 00:37:27.030 --> 00:37:30.369 and gene therapy space and cell therapy and gene 00:37:30.369 --> 00:37:34.210 therapy is just exploding right now and in general 00:37:34.210 --> 00:37:37.409 this whole biologics they are all like classified 00:37:37.409 --> 00:37:41.710 as we can classify as immunotherapy i mean people 00:37:41.710 --> 00:37:43.869 have different thoughts but in general i would 00:37:43.869 --> 00:37:46.329 classify them as a type of immunotherapy they 00:37:46.329 --> 00:37:48.889 are you know somehow modulating your immune system 00:37:48.889 --> 00:37:51.769 or using your immune system to start to either 00:37:51.769 --> 00:37:54.449 treat you in the sense of in a good sense like 00:37:54.449 --> 00:37:56.730 cancer or in the sense of calming it down and 00:37:56.730 --> 00:38:00.320 that field has been exploding the last 20 years. 00:38:00.559 --> 00:38:04.519 I just especially when we think about, you know, 00:38:04.519 --> 00:38:08.119 I would say the key game changing drugs is something 00:38:08.119 --> 00:38:12.300 called Keytruda for cancer, CAR T cell therapy 00:38:12.300 --> 00:38:15.139 for cancer as well, like for the leukemias. But 00:38:15.139 --> 00:38:18.219 then for the autoimmune space, it's rituximab. 00:38:18.300 --> 00:38:22.019 It's the B cell depleting agent, which has been 00:38:22.019 --> 00:38:24.659 a complete game changer for those with like severe 00:38:24.659 --> 00:38:27.489 autoimmune diseases like, you know. i'm not to 00:38:27.489 --> 00:38:30.110 say that what we have isn't severe but like lupus 00:38:30.110 --> 00:38:34.329 for example you know or um even ms they'll be 00:38:34.329 --> 00:38:36.250 on like something like a crevice for example 00:38:36.250 --> 00:38:38.829 but in general the b -cell depleters really are 00:38:38.829 --> 00:38:42.769 game changers for those that maybe were at higher 00:38:42.769 --> 00:38:46.250 risk of exhausting options in the sense of like 00:38:46.250 --> 00:38:51.320 you know the prognosis isn't good so the field 00:38:51.320 --> 00:38:53.619 is constantly evolving we've not even got to 00:38:53.619 --> 00:38:56.800 like self -therapy and that potential yet for 00:38:56.800 --> 00:39:01.000 autoimmunity so my background actually what I 00:39:01.000 --> 00:39:04.659 did for my PhD was looking at using your immune 00:39:04.659 --> 00:39:08.519 cells to basically stop an organ transplant from 00:39:08.519 --> 00:39:11.239 being rejected but that same principle could 00:39:11.239 --> 00:39:15.719 be applied to autoimmunity so we have these quick 00:39:15.719 --> 00:39:18.949 little you know jumping over to immunology but 00:39:18.949 --> 00:39:21.289 we have these immune cells in our body called 00:39:21.289 --> 00:39:25.869 t -regs or regulatory t -cells their job is to 00:39:25.869 --> 00:39:28.170 suppress the immune system once you've cleaned 00:39:28.170 --> 00:39:30.989 cleared up an infection they kick into gear and 00:39:30.989 --> 00:39:33.590 they're just like okay right let's switch you 00:39:33.590 --> 00:39:38.070 off now you've done your job but in most cases 00:39:38.070 --> 00:39:41.010 of autoimmunity pretty much every case of autoimmunity 00:39:41.010 --> 00:39:43.469 they've also found that the t -regs they're not 00:39:43.469 --> 00:39:46.219 quite doing their job properly because t -rex 00:39:46.219 --> 00:39:49.340 are also meant to stop autoimmunity they go around 00:39:49.340 --> 00:39:52.360 and control any potential auto reactive cell 00:39:52.360 --> 00:39:54.500 they'll be like no we'll switch you off don't 00:39:54.500 --> 00:39:58.559 do that don't attack ourself you know we're safe 00:39:58.559 --> 00:40:01.219 don't need to do that so what if we could harness 00:40:01.219 --> 00:40:05.400 their power to be able to stop autoimmune diseases 00:40:05.400 --> 00:40:07.059 i mean that's the way that that's how they're 00:40:07.059 --> 00:40:09.340 supposed to function right something has clearly 00:40:09.340 --> 00:40:13.519 gone wrong that they can't do that why so that's 00:40:13.980 --> 00:40:16.519 even like there's so much right now in clinical 00:40:16.519 --> 00:40:20.480 trials exploring the power of these cells t -rex 00:40:20.480 --> 00:40:24.440 and what if we could put that into patients so 00:40:24.440 --> 00:40:28.400 what i would say to people is who are worried 00:40:28.400 --> 00:40:32.059 is that don't because this field is i can't even 00:40:32.059 --> 00:40:34.719 keep up with the literature coming out every 00:40:34.719 --> 00:40:37.500 single day in my field that's why i try and be 00:40:37.500 --> 00:40:40.840 like you know the boff on all things immunology 00:40:40.840 --> 00:40:43.800 i I can't even keep up with it. I can't even 00:40:43.800 --> 00:40:47.300 keep up with my field right now. So stay encouraged 00:40:47.300 --> 00:40:49.679 because good science is coming out every single 00:40:49.679 --> 00:40:52.380 day. Exactly. I think that's a good way to sum 00:40:52.380 --> 00:40:56.079 it up. Even if you are burning through some treatments, 00:40:56.099 --> 00:41:00.579 as long as, you know, your colon, let's say, 00:41:00.619 --> 00:41:03.059 is not destroyed enough that you have to go to 00:41:03.059 --> 00:41:06.019 surgery, you can be hopeful there are treatments 00:41:06.019 --> 00:41:08.360 still out there and there are treatments on the 00:41:08.360 --> 00:41:12.260 way, right? Yeah, exactly. So we want to end 00:41:12.260 --> 00:41:14.159 on a high note and we also want to bring it full 00:41:14.159 --> 00:41:19.619 circle back to Crohn's one more time. What are 00:41:19.619 --> 00:41:23.420 some misconceptions that you've come across in 00:41:23.420 --> 00:41:27.820 terms of Crohn's disease? Oh, misconceptions. 00:41:28.639 --> 00:41:32.639 I think the big, first of all, people like get 00:41:32.639 --> 00:41:36.460 confused between like Crohn's and like IBS or 00:41:36.460 --> 00:41:39.579 IBD and IBS, very different autoimmune element. 00:41:40.159 --> 00:41:44.500 for IBD not autoimmune for IBS that's the big 00:41:44.500 --> 00:41:47.099 sort of misconception what other misconceptions 00:41:47.099 --> 00:41:51.099 have I experienced I guess what we spoke about 00:41:51.099 --> 00:41:53.340 earlier which is that you caused it yourself 00:41:53.340 --> 00:41:56.039 you brought this on you you were too exactly 00:41:56.039 --> 00:41:59.460 what you said you were too anxious or you decided 00:41:59.460 --> 00:42:04.860 to take a medical intervention for a worldwide 00:42:04.860 --> 00:42:08.829 global problem five or five years ago or something 00:42:08.829 --> 00:42:12.489 and it's caused without without spelling out 00:42:12.489 --> 00:42:16.909 and that caused your disease and as i say um 00:42:16.909 --> 00:42:22.469 you're not that powerful hun you know i mean 00:42:22.469 --> 00:42:27.579 maybe you wish you were you know you it's There's 00:42:27.579 --> 00:42:30.679 so much more, there's so much more nuance. Your 00:42:30.679 --> 00:42:33.639 immune system, your genetics, it's so much more 00:42:33.639 --> 00:42:36.280 complicated. And yeah, maybe you can scale it 00:42:36.280 --> 00:42:39.320 down to a simple sentence of you were genetically 00:42:39.320 --> 00:42:42.039 susceptible, something that you did in the environment 00:42:42.039 --> 00:42:44.820 triggered the spark. Yeah, but you're not a robot. 00:42:45.039 --> 00:42:47.440 You're not immune to emotions. You're not immune 00:42:47.440 --> 00:42:49.739 to going out every day and getting hit with whatever 00:42:49.739 --> 00:42:53.780 hits you, you know? So I think that's the biggest 00:42:53.780 --> 00:42:57.059 one I wanted to... I wanted to sort of address 00:42:57.059 --> 00:42:59.019 and also I think the last point right hopefully 00:42:59.019 --> 00:43:01.340 those with Crohn's and IBD in general are good 00:43:01.340 --> 00:43:04.619 at this which is you can't necessarily keep up 00:43:04.619 --> 00:43:07.519 with everyone else and it's okay to admit that 00:43:07.519 --> 00:43:09.519 and actually it's probably the kindest thing 00:43:09.519 --> 00:43:13.719 to do to accept that so listen to your body sleep 00:43:13.719 --> 00:43:15.820 the extra hours if you can if you don't have 00:43:15.820 --> 00:43:20.599 young kids rest and miss the workout if you know 00:43:20.599 --> 00:43:22.320 the workout is potentially going to knock you 00:43:22.320 --> 00:43:25.860 out for two three days Very well put. I completely 00:43:25.860 --> 00:43:29.139 agree. I'm on the same page here. So looking 00:43:29.139 --> 00:43:32.460 into the future, and I'm really interested to 00:43:32.460 --> 00:43:34.179 see what you have to say. That's considering 00:43:34.179 --> 00:43:36.920 the field that you're in. You're in your 30s. 00:43:36.920 --> 00:43:40.039 I just kicked off my 40s. Will we see a cure 00:43:40.039 --> 00:43:43.909 for IBD in our lifetime? I don't know if you've 00:43:43.909 --> 00:43:47.789 been seeing the buzz, at least in the lupus space. 00:43:48.190 --> 00:43:51.010 And there was this really fascinating, it was 00:43:51.010 --> 00:43:53.230 like two other autoimmune diseases as well. An 00:43:53.230 --> 00:43:55.250 amazing paper came out in New England Journal 00:43:55.250 --> 00:43:58.250 of Medicine a couple of years back. But effectively, 00:43:58.369 --> 00:44:02.969 they quote unquote cured these patients. Now, 00:44:03.070 --> 00:44:07.309 we are very reluctant for now to use the word 00:44:07.309 --> 00:44:11.320 cured. um for many reasons i think it's just 00:44:11.320 --> 00:44:13.800 how do you define it for something that's not 00:44:13.800 --> 00:44:16.880 even been cured before it's long -term remission 00:44:16.880 --> 00:44:20.119 maybe definitely a lot of scientists would say 00:44:20.119 --> 00:44:23.420 that but in terms of getting to long -term remission 00:44:23.420 --> 00:44:27.300 we're seeing it for as i say for there was a 00:44:27.300 --> 00:44:30.059 so the trial i'm talking about is again a cd19 00:44:30.059 --> 00:44:33.820 car t trial it's repurposing what is being used 00:44:33.820 --> 00:44:38.019 for blood cancers to autoimmune patients, because 00:44:38.019 --> 00:44:41.519 the premise in like leukemias is you have these 00:44:41.519 --> 00:44:44.059 rogue B cells that you just need to clear, at 00:44:44.059 --> 00:44:46.579 least with B cell leukemias or B cell specific 00:44:46.579 --> 00:44:51.280 cancers. If you just clear all the B cells, then 00:44:51.280 --> 00:44:54.320 you clear that patient's cancer, right? So that's 00:44:54.320 --> 00:44:56.780 kind of what's happening right now in the cancer 00:44:56.780 --> 00:44:59.559 space. But then similarly with autoimmune diseases, 00:44:59.800 --> 00:45:03.650 now, maybe this wouldn't apply to IBD. But with 00:45:03.650 --> 00:45:06.530 like lupus, which is very B -cell driven, I mean, 00:45:06.550 --> 00:45:08.869 when you think of antibodies against you, all 00:45:08.869 --> 00:45:11.769 these autoantibodies, that's driven by B -cells 00:45:11.769 --> 00:45:14.570 predominantly. I mean, B -cells make it. So if 00:45:14.570 --> 00:45:16.449 you clear all the B -cells, then technically 00:45:16.449 --> 00:45:18.269 you should be able to also put a patient into 00:45:18.269 --> 00:45:20.309 remission. They've seen that now, which is really 00:45:20.309 --> 00:45:22.510 cool. And this is like long term as in the last 00:45:22.510 --> 00:45:25.230 when they followed up for a few years now. There's 00:45:25.230 --> 00:45:28.110 no reason why we can't see that as well for IBD. 00:45:28.170 --> 00:45:30.869 It maybe won't be a B -cell depleter, or maybe 00:45:30.869 --> 00:45:32.889 some people are exploring B -cell depleters. 00:45:33.090 --> 00:45:35.530 Could it be a T -cell depleter? That's maybe 00:45:35.530 --> 00:45:39.849 riskier. But there are all these strategies that 00:45:39.849 --> 00:45:42.909 weren't around a few years ago, or strategies 00:45:42.909 --> 00:45:45.510 that we're seeing that have been working in different 00:45:45.510 --> 00:45:48.170 diseases, but we're now repurposing them for 00:45:48.170 --> 00:45:51.489 autoimmunity. So do I think we will see something 00:45:51.489 --> 00:45:55.699 that will put us in long... indefinite remission 00:45:55.699 --> 00:45:59.260 absolutely in our lifetime absolutely next 10 00:45:59.260 --> 00:46:02.639 years probably i'm willing to say that so be 00:46:02.639 --> 00:46:05.920 encouraged that's what i'll say i love that positivity 00:46:05.920 --> 00:46:08.559 and and i think that is that is just the right 00:46:08.559 --> 00:46:11.860 spot to to to end it so i i first of all want 00:46:11.860 --> 00:46:14.039 to thank you so much for taking your time And 00:46:14.039 --> 00:46:15.780 speaking with me, I want to thank you for really 00:46:15.780 --> 00:46:18.039 hitting us with a lot of scientific knowledge. 00:46:18.260 --> 00:46:20.639 I find it really, really fascinating and inspiring. 00:46:20.960 --> 00:46:24.559 So keep fighting a good fight. You're also someone 00:46:24.559 --> 00:46:27.119 who's very active on social media, especially 00:46:27.119 --> 00:46:30.460 in representing your field and what's going on 00:46:30.460 --> 00:46:32.980 there, IBG as well. So I encourage anybody who's 00:46:32.980 --> 00:46:35.360 watching and listening to check that out as well 00:46:35.360 --> 00:46:39.519 and find you there. And from my end, I just wish 00:46:39.519 --> 00:46:42.519 you continuous luck with your Crohn's and also 00:46:42.519 --> 00:46:45.389 with your field of expertise because uh it's 00:46:45.389 --> 00:46:47.730 it's really utterly fascinating to me so thank 00:46:47.730 --> 00:46:49.889 you so much for being with us today thank you 00:46:49.889 --> 00:46:53.949 for having me on that's it for today's episode 00:46:53.949 --> 00:46:57.789 of talking presented by colitis unfiltered i'm 00:46:57.789 --> 00:47:00.469 frank tabering and if this hit home or hit your 00:47:00.469 --> 00:47:04.090 gut do us a favor subscribe to the show and follow 00:47:04.090 --> 00:47:07.130 us at colitis unfiltered on youtube substack 00:47:07.130 --> 00:47:10.750 instagram threads tiktok and reddit we'll see 00:47:10.750 --> 00:47:13.030 you soon for more inspiring stories from the 00:47:13.030 --> 00:47:13.550 bathroom floor.