WEBVTT - Introducing: Symptomatic A Medical Mystery Podcast Season 3 0:00:04.400 --> 0:00:14.000 Really, my condition was continuously dropping. None of the treatment 0:00:14.120 --> 0:00:17.680 was working. It got to the point where I was 0:00:17.720 --> 0:00:20.800 actually that to give me nutrition through a tube. 0:00:21.320 --> 0:00:24.640 It was hard because obviously anyone knows that if you 0:00:24.680 --> 0:00:27.680 see blood, it's not a good thing at all, and 0:00:27.720 --> 0:00:30.760 it's not something that's I don't think it's going to 0:00:30.800 --> 0:00:31.240 go away. 0:00:31.800 --> 0:00:35.519 The fear continues to fester. It just becomes a potential 0:00:35.600 --> 0:00:37.839 really dark spiral for some patients. 0:00:38.159 --> 0:00:40.880 I think my lowest point was having that sinking feeling 0:00:40.920 --> 0:00:43.520 of my life is never going to be the same. 0:00:48.280 --> 0:00:51.880 How terrifying would it be to fight an unknown enemy, 0:00:52.400 --> 0:00:56.200 one you didn't recognize and didn't see coming. What if 0:00:56.240 --> 0:01:00.959 that enemy was coming from within a disease even doctors 0:01:00.960 --> 0:01:06.280 couldn't identify. Nearly half of all Americans suffer from some 0:01:06.520 --> 0:01:12.240 chronic illness, and many struggle for an accurate diagnosis. These 0:01:12.520 --> 0:01:19.800 are their stories. I'm Lauren Brite Pacheco, and this is symptomatic. 0:01:32.400 --> 0:01:35.200 Jose Torres has always felt most at home when he 0:01:35.240 --> 0:01:40.040 can express himself, whether it's through music, poetry, or visual arts. 0:01:41.600 --> 0:01:43.280 Ever since I was kid, I used to always draw 0:01:43.400 --> 0:01:46.280 like cartoons, and as I grew up continued sketching. 0:01:46.319 --> 0:01:49.880 Actually went to middle school for art specifically. 0:01:49.800 --> 0:01:53.120 Though Jose was raised by his grandparents throughout his childhood, 0:01:53.400 --> 0:01:56.600 his mother, Araceli, was always a huge part of a 0:01:56.640 --> 0:02:00.320 support system. What kind of qualities does he have make 0:02:00.400 --> 0:02:01.240 him so special? 0:02:01.920 --> 0:02:07.400 He's intelligent, he's sensitive, he's hard working, he doesn't settle. 0:02:08.240 --> 0:02:12.480 He's a very strong person. A lot of people grow 0:02:12.600 --> 0:02:16.400 fond of him really quickly. He's very social, unlike me, 0:02:16.480 --> 0:02:19.640 I'm the opposite of him. But he likes to be 0:02:19.720 --> 0:02:22.720 around people and he likes to help people as well. 0:02:23.360 --> 0:02:29.200 So tell me philosophy, poetry, reading, music, fan artist. How 0:02:29.240 --> 0:02:30.480 did you get into boxing? 0:02:31.320 --> 0:02:33.440 I had a bit of a rough upbringing, so that 0:02:33.560 --> 0:02:36.200 was a way my mother identified was just like, let's 0:02:36.240 --> 0:02:41.640 put that energy to something productive. Boxing was also a 0:02:41.760 --> 0:02:44.560 huge sport just in the home, Like my grandfather growing 0:02:44.639 --> 0:02:46.840 up would always watch like the big fights and whatnot. 0:02:47.320 --> 0:02:49.280 So I was like, yeah, sure, why not? So we 0:02:49.280 --> 0:02:50.000 found a gym. 0:02:50.120 --> 0:02:52.800 I went, had a quick like intro session, loved it, 0:02:52.840 --> 0:02:55.400 and that was it. If I wasn't in school, I 0:02:55.520 --> 0:02:57.239 was likely in the gym. 0:02:57.840 --> 0:03:00.400 And by the time you were a freshman and college 0:03:00.440 --> 0:03:01.680 you were really into boxing. 0:03:02.200 --> 0:03:05.880 Yes, at that point, the idea was My trainer wanted 0:03:05.919 --> 0:03:08.520 to start preparing me to compete in potentially the Golden 0:03:08.520 --> 0:03:11.320 Globes tournament to see how I placed there. 0:03:11.760 --> 0:03:14.399 And at that point, no pun intended, but you ended 0:03:14.480 --> 0:03:18.200 up getting knocked out in terms of health. You know, 0:03:18.320 --> 0:03:20.760 I was saying, your mom must be tough, but I 0:03:20.800 --> 0:03:24.720 should think to a certain extent, seeing you box prepared 0:03:24.960 --> 0:03:28.440 her for what you were about to battle in terms 0:03:28.440 --> 0:03:29.080 of your health. 0:03:29.880 --> 0:03:31.959 My mom's a tough woman, but nothing prepared us for 0:03:32.880 --> 0:03:35.880 that for the bout that came about with my health, 0:03:36.040 --> 0:03:41.080 because yeah, it came out of nowhere. It was just 0:03:41.120 --> 0:03:44.240 a regular day. I probably just gotten back from college 0:03:44.280 --> 0:03:47.400 courses and I went to use the restroom and there 0:03:47.520 --> 0:03:51.160 was blood. So that was the first thing. I was like, Oh, 0:03:51.200 --> 0:03:56.520 that's different. But I didn't tell anyone because I just figured, oh, 0:03:56.520 --> 0:03:58.160 it's stomach bug, maybe it's something I ate. 0:03:58.280 --> 0:04:01.560 It'll go away, it would pass, and it wasn't a 0:04:01.560 --> 0:04:02.080 big deal. 0:04:02.760 --> 0:04:07.600 So initially you just kind of dismissed it as a fluke. Yeah, 0:04:07.640 --> 0:04:11.480 and then when did it next get on your radar 0:04:11.560 --> 0:04:12.360 as an issue? 0:04:12.880 --> 0:04:16.480 So then the blood continued, not frequently enough for me 0:04:16.600 --> 0:04:20.040 to be alarmed, which sounds crazy, but it still occurred 0:04:20.960 --> 0:04:23.560 a few times in the weeks coming up, but then 0:04:23.760 --> 0:04:28.960 I started feeling intense cramping and abdominal pains. But even 0:04:28.960 --> 0:04:31.279 that I kind of just shook it off, still didn't 0:04:31.400 --> 0:04:34.560 say anything to anyone. And part of that is honestly 0:04:34.600 --> 0:04:37.559 like a cultural thing, like within Latin households, we don't 0:04:37.800 --> 0:04:41.080 like going to the doctor typically unless it's absolutely necessary. 0:04:41.200 --> 0:04:43.440 We were like, oh, it'll. 0:04:42.640 --> 0:04:45.159 Go away, it'll be fine, and just growing up, even 0:04:45.200 --> 0:04:46.760 like a tail and all, like, we wouldn't take that 0:04:46.839 --> 0:04:49.560 unless it was absolutely necessary. Like we were just you know, 0:04:49.640 --> 0:04:51.960 natural ways to get rid of fevers and whatnot. 0:04:52.440 --> 0:04:53.560 So I just didn't mention it. 0:04:54.720 --> 0:04:58.359 What is your day to day like at this point, 0:04:58.640 --> 0:05:02.760 is it impacting you're commuting your classes? 0:05:03.320 --> 0:05:04.200 Yeah, one hundred percent. 0:05:04.240 --> 0:05:06.320 I was not able to make it to class half 0:05:06.320 --> 0:05:08.800 the time because at this point also what started to 0:05:08.839 --> 0:05:13.239 manifest was restroom urgency. Frankly so even taking the train, 0:05:13.440 --> 0:05:15.640 because you know, I lived in Brooklyn, my school was 0:05:15.680 --> 0:05:18.640 in Manhattan. I was also working part time at the 0:05:18.640 --> 0:05:22.039 time as well, so it's just I couldn't make it 0:05:22.080 --> 0:05:24.640 to everything. On top of training, I became tired to 0:05:24.640 --> 0:05:27.279 even go to the gym to train. And box anymore. 0:05:27.880 --> 0:05:30.599 You know, I just want to focus on that because psychologically, 0:05:30.960 --> 0:05:35.960 that transition into fear that you need to use the 0:05:36.040 --> 0:05:44.080 restroom into an absolute necessity. It's what the normal person experiences, 0:05:44.120 --> 0:05:48.240 but on volume ten. So it's like getting food poisoning 0:05:48.880 --> 0:05:53.680 out of the blue, and particularly in New York City subways, 0:05:54.279 --> 0:05:55.640 there are no restrooms. 0:05:56.120 --> 0:05:56.320 Right. 0:05:56.760 --> 0:06:00.679 It was definitely a challenge that prohibited me, to your point, 0:06:01.000 --> 0:06:03.200 to go anywhere, Like you had to be aware of 0:06:03.240 --> 0:06:05.359 how long is it going to take me, you know, 0:06:05.400 --> 0:06:06.520 where would the restrooms be. 0:06:07.000 --> 0:06:08.360 But beyond the restroom. 0:06:07.960 --> 0:06:11.719 Issue, just the fatigue, the depleted energy, the pain, like 0:06:11.760 --> 0:06:15.000 there's so many other things that went along with that 0:06:15.000 --> 0:06:16.800 that caused me to not be able to do a 0:06:16.839 --> 0:06:17.720 lot of things. 0:06:18.120 --> 0:06:20.760 When he was in school, I wasn't around, So I 0:06:20.800 --> 0:06:23.680 can only imagine how hard it was for him to 0:06:24.480 --> 0:06:27.159 know that he may have to go and have to 0:06:27.160 --> 0:06:30.280 get off the train or have to rush And it's 0:06:30.360 --> 0:06:32.560 kind of also embarrassing, I'm sure for him. 0:06:36.080 --> 0:06:40.039 It's not something that people can necessarily say, it's not 0:06:40.200 --> 0:06:44.760 something that people can necessarily understand, and it's a difficult 0:06:44.839 --> 0:06:45.880 thing to talk about. 0:06:46.640 --> 0:06:49.560 Yeah, I mean, no one likes talking about restroom issues, right, 0:06:49.600 --> 0:06:54.160 it's almost still taboo. So when someone is experiencing especially 0:06:54.480 --> 0:06:55.880 we don't know what it is. We don't know what's 0:06:55.920 --> 0:06:59.480 happening or having these experiences. It was very difficult to 0:06:59.520 --> 0:07:02.640 communicate due to lack of understanding, and to your point, 0:07:02.720 --> 0:07:05.640 like it's difficult to share beyond the urgency. Even if 0:07:05.640 --> 0:07:07.920 I do decide to go somewhere and I get stricken with, 0:07:08.240 --> 0:07:11.360 you know, a crippling cramp or abdominal pain, then I 0:07:11.400 --> 0:07:13.360 would have to like go crowl up in a corner somewhere. 0:07:14.880 --> 0:07:19.480 Persisting for months on end, the symptoms became impossible to ignore, 0:07:19.800 --> 0:07:23.880 starting to interfere with Jose's life, especially his boxing dreams. 0:07:24.400 --> 0:07:28.000 Instead of focusing on his next training session, he was 0:07:28.080 --> 0:07:32.000 now just trying to make it to class. It reached 0:07:32.040 --> 0:07:34.000 a point where he could no longer hide it from 0:07:34.080 --> 0:07:35.840 his mom. 0:07:35.520 --> 0:07:37.800 And then it got to the point where then fatigue 0:07:37.840 --> 0:07:39.040 started to kick in. 0:07:39.320 --> 0:07:40.840 Fatigue isn't just being tired. 0:07:41.200 --> 0:07:43.640 When I say fatigue, I mean like you literally don't 0:07:43.680 --> 0:07:46.520 have the energy to get out of bed. It's almost 0:07:46.520 --> 0:07:50.320 difficult to explain if you've never experienced it. Just imagine 0:07:50.320 --> 0:07:54.320 if your body was completely drained of any energy or 0:07:54.600 --> 0:07:58.040 will to move, like we can't move if we wanted. 0:07:57.840 --> 0:08:01.280 To, and I was just so exhausted. My mom took notice. 0:08:01.400 --> 0:08:03.640 There was just one day that I just couldn't get up, 0:08:03.720 --> 0:08:05.600 like I couldn't make it. It's a class that day, 0:08:05.760 --> 0:08:08.000 and then my mom was just like, there's something wrong, 0:08:08.120 --> 0:08:09.200 like what's going on with you? 0:08:09.760 --> 0:08:12.040 So then then I finally broke and told her, and 0:08:12.080 --> 0:08:12.320 she was. 0:08:12.320 --> 0:08:14.400 Like, yeah, we need to get you checked because I've 0:08:14.400 --> 0:08:15.800 never seen you like this before. 0:08:16.320 --> 0:08:20.160 He called me over and he was bleeding severely, and 0:08:20.240 --> 0:08:21.960 that's when we rushed to the hospital. 0:08:24.400 --> 0:08:27.800 Tell me what went through your mind. How horrifying was that? 0:08:28.680 --> 0:08:32.120 It was hard because I know that obviously anyone knows 0:08:32.160 --> 0:08:34.760 that if you see blood, it's not a good thing 0:08:34.840 --> 0:08:37.640 at all. I don't think it's going to go away, 0:08:37.760 --> 0:08:40.280 so I kind of knew that it was really serious. 0:08:45.520 --> 0:08:49.600 At the hospital, doctors drew blood, performed a colonoscopy, a 0:08:49.640 --> 0:08:53.840 procedure where a fiber optic instrument is inserted to examine 0:08:53.840 --> 0:08:57.960 the inside of the colon, and administered a barium swallow test, 0:08:58.400 --> 0:09:01.959 where Jose ingested a chalk liquid that made his upper 0:09:01.960 --> 0:09:06.080 gastrointestinal tract visible on X rays. There were so many 0:09:06.120 --> 0:09:08.880 other procedures that they all started to blur together. For 0:09:09.000 --> 0:09:12.320 Jose and as a boxer, I'm sure that you were 0:09:12.320 --> 0:09:16.160 pretty aware of your weight and your body composition. What's 0:09:16.160 --> 0:09:17.440 happening to you physically? 0:09:18.200 --> 0:09:21.000 I'm just getting weaker again, not being able to train 0:09:21.080 --> 0:09:23.640 as regularly or at all. You know, it got to 0:09:23.640 --> 0:09:25.079 a point where I was so fatigued the end that 0:09:25.080 --> 0:09:28.320 I had to stop training altogether. So it was very 0:09:28.360 --> 0:09:31.160 difficult for me to maintain weight on top of not 0:09:31.160 --> 0:09:34.040 being able to exercise, which you know, just added to 0:09:34.080 --> 0:09:37.040 the fatigue. It just became a cycle of one thing 0:09:37.080 --> 0:09:39.240 compounding on the other, compounding on the other. 0:09:39.720 --> 0:09:42.800 He was getting skinnier and skinnier and skinnier and skinnier, 0:09:42.960 --> 0:09:45.080 and it was very difficult. 0:09:45.640 --> 0:09:51.400 That must have been so frightening. What is the doctor 0:09:51.480 --> 0:09:53.679 saying and what does the doctor think it is? 0:09:54.720 --> 0:09:59.320 So they told me that was Crohne's disease, which you 0:09:59.360 --> 0:10:00.480 know karable. 0:10:00.840 --> 0:10:02.840 So getting hit with that at that age, it was 0:10:02.920 --> 0:10:05.600 just instantly like, oh what now, Like what is my 0:10:05.640 --> 0:10:07.720 life going to look like? What does this mean for me? 0:10:08.480 --> 0:10:10.080 I'm still so young, Like, what is the rest of 0:10:10.080 --> 0:10:11.040 my life going to look like? 0:10:11.840 --> 0:10:15.800 Crohn's disease is a chronic condition that causes inflammation in 0:10:15.840 --> 0:10:20.520 the digestive tract, leading to abdominal pain, severe diarrhea, fatigue, 0:10:20.920 --> 0:10:25.640 weight loss, and malnutrition. If left unchecked, it can result 0:10:25.679 --> 0:10:29.280 in debilitating and potentially life threatening complications. 0:10:30.160 --> 0:10:33.480 I started reading about chrones, and I read that it 0:10:33.480 --> 0:10:37.160 could be deadly, it could be just life long. I 0:10:37.240 --> 0:10:40.320 had no idea that they would say, oh, your son 0:10:40.400 --> 0:10:43.720 has a disease and he's going to have issues. It's 0:10:43.760 --> 0:10:44.960 going to change his life. 0:10:45.960 --> 0:10:50.360 Do you remember at that point what your biggest fears were. 0:10:51.160 --> 0:10:53.040 It went back to, like, what is my life going 0:10:53.080 --> 0:10:53.760 to look like now? 0:10:54.040 --> 0:10:57.200 I was still going to school, but struggling because of 0:10:57.679 --> 0:10:59.480 you know, all the symptoms and everything, and being in 0:10:59.559 --> 0:11:02.120 and out the hospital and not the doctor's offices. 0:11:02.840 --> 0:11:05.480 So yeah, it was really my future more than anything. 0:11:09.800 --> 0:11:12.080 Jose had been in and out of the hospital five 0:11:12.200 --> 0:11:15.680 times in just a few months. During that period, he 0:11:15.840 --> 0:11:20.920 lost thirty pounds, drastically changing his appearance and overall well being. 0:11:21.640 --> 0:11:24.120 Even though he now had a diagnosis, the lack of 0:11:24.160 --> 0:11:27.160 a clear treatment plan left him feeling like he was 0:11:27.320 --> 0:11:28.240 just treading water. 0:11:29.360 --> 0:11:33.200 They told me to keep a food diary and was 0:11:33.280 --> 0:11:35.320 just like, if you eat something that makes you not 0:11:35.400 --> 0:11:38.880 feel well, don't need it again. And in my head 0:11:38.920 --> 0:11:40.240 that just didn't make any sense. 0:11:41.080 --> 0:11:45.640 Now, on top of fearing urgency, you have to fear 0:11:46.440 --> 0:11:47.800 everything you're eating. 0:11:48.120 --> 0:11:49.920 Pretty much, because yeah, there was no guidance. 0:11:50.080 --> 0:11:51.560 And in my head, it was just like, all right, 0:11:51.559 --> 0:11:53.160 I'm write down what I eat in a day and 0:11:53.200 --> 0:11:55.280 if I don't feel well, ay, how do I pinpoint 0:11:55.320 --> 0:11:58.400 what is it that I ate that made me feel 0:11:58.760 --> 0:12:00.760 bad or land me back in the hospital? 0:12:01.360 --> 0:12:03.600 And again like what was the long term solution? I'd 0:12:03.640 --> 0:12:06.400 been prescribed to regimen of medications as well at that time. 0:12:06.960 --> 0:12:10.960 It got slightly better, but not not manageable. 0:12:11.720 --> 0:12:16.120 So you have a diagnosis, it is not an optimistic one. 0:12:16.840 --> 0:12:20.160 How do your conditions continue at that point? Is there 0:12:20.280 --> 0:12:22.560 any kind of respite? 0:12:23.240 --> 0:12:26.520 There was a slight break, so like the frequency reduced 0:12:26.559 --> 0:12:28.880 a little bit, the urgency reduced a little bit, but 0:12:28.960 --> 0:12:31.720 there was still the fatigue. There was still the issue 0:12:31.760 --> 0:12:35.079 of what do I eat because I was still regularly 0:12:35.120 --> 0:12:37.800 going back to the doctor or the hospital because of 0:12:38.280 --> 0:12:39.560 severe symptoms. 0:12:40.120 --> 0:12:45.440 So we had to do completely different no skins, you know, blend, 0:12:45.520 --> 0:12:52.000 no seasonings, baked chicken, no fried foods at all, vegetables. 0:12:52.160 --> 0:12:55.360 It just had to be like a very soft food diet, 0:12:55.480 --> 0:13:00.400 nothing cruciferous, nothing that would hurt his stomach, so that 0:13:00.640 --> 0:13:02.559 at least we wouldn't have any flares. 0:13:03.040 --> 0:13:07.440 And that's a huge undertaking because suddenly you're having to 0:13:08.000 --> 0:13:12.240 second guess and think about everything that's going into his mouth. 0:13:13.040 --> 0:13:15.600 Yeah, it wasn't what I want to eat, it's what 0:13:15.679 --> 0:13:17.320 I have to eat. 0:13:18.080 --> 0:13:22.040 The diagnosis offered only a guise of normalcy, a brief 0:13:22.080 --> 0:13:25.720 flashback to life before the symptoms began. But as the 0:13:25.760 --> 0:13:29.560 flare ups returned and grew more frequent, Jose and Rselly 0:13:29.640 --> 0:13:32.080 knew they needed to push for a second opinion. 0:13:33.000 --> 0:13:36.319 As a mom with a child that has a diagnosis 0:13:36.559 --> 0:13:39.640 as severe as that, I didn't want just one opinion. 0:13:39.800 --> 0:13:43.360 I wanted a second opinion. I found a center that 0:13:43.520 --> 0:13:48.960 was specifically for pediatric gesture enterology, and we made an 0:13:49.000 --> 0:13:50.520 appointment and. 0:13:50.440 --> 0:13:53.839 They re ran all the tests and did the blood 0:13:53.880 --> 0:13:56.600 work all over again, and they actually came back with 0:13:56.679 --> 0:14:00.000 a different diagnosis of all sort of colitis. 0:14:01.080 --> 0:14:06.960 So what was that like for you? Somewhat relief? 0:14:07.720 --> 0:14:12.280 It was because when I shared what I was being 0:14:12.320 --> 0:14:16.719 told from my previous doctors. The current doctors that I 0:14:17.040 --> 0:14:20.280 had found that did give me the proper diagnosis and whatnot, 0:14:20.840 --> 0:14:23.800 were also in disagreement with like the food diary thing, 0:14:23.840 --> 0:14:25.840 and they were just like they should have done XYZ. 0:14:26.000 --> 0:14:28.920 And so that gave me confidence in this medical team 0:14:29.280 --> 0:14:31.560 that Okay, this is the team I can trust, and 0:14:31.640 --> 0:14:34.920 let's see what happens here. And they did prescribe me 0:14:35.040 --> 0:14:38.920 a regiment of medications that actually did work, at least 0:14:38.920 --> 0:14:39.480 for a time. 0:14:40.400 --> 0:14:43.920 Altered of colitis is a disease that causes severe inflammation 0:14:44.200 --> 0:14:48.240 and ulcers in the large intestine. In most people, symptoms 0:14:48.240 --> 0:14:51.880 developed gradually that they can be draining and even life 0:14:51.960 --> 0:14:56.320 threatening if not properly treated. It's estimated that nearly seven 0:14:56.400 --> 0:14:59.760 hundred and fifty thousand people in North America are affected 0:14:59.800 --> 0:15:03.960 by this disease. Both Crohn's disease and alsortive colitis fall 0:15:04.080 --> 0:15:09.200 under the umbrella of inflammatory bowel disease. Jose's current gastrentrologist, 0:15:09.320 --> 0:15:12.760 doctor Brian Bosworth, explains the difference between the two. 0:15:15.160 --> 0:15:20.080 Inflammatory bowel diseases are a spectrum of presentations of an 0:15:20.160 --> 0:15:24.640 autoimmune attack by your white blood cells on your intestines 0:15:25.160 --> 0:15:27.920 and when that goes awry, that can lead to more 0:15:27.920 --> 0:15:31.800 white blood cells coming in, more destruction of tissue. And 0:15:31.880 --> 0:15:33.680 in the case of all sort of colitis, it's really 0:15:33.760 --> 0:15:36.880 the surface level of the colon, and so some symptoms 0:15:36.880 --> 0:15:41.960 that patients would get would be bleeding, diarrhea, urgency that 0:15:42.000 --> 0:15:43.800 they have to run to the bathroom right away if 0:15:43.800 --> 0:15:46.040 they felt the urge to go because they were afraid 0:15:46.040 --> 0:15:47.720 that they would have an accident or not be able 0:15:47.800 --> 0:15:51.520 to control it. If that inflammation is not just at 0:15:51.560 --> 0:15:54.360 the surface level on the inside of the bowl, but 0:15:54.480 --> 0:15:57.960 actually is throughout the entire wall of the bowl, that's 0:15:58.040 --> 0:16:01.560 more Crone's disease. It's what we can called transmural through 0:16:01.560 --> 0:16:04.360 the wall, and that can have the same types of 0:16:04.440 --> 0:16:08.280 symptoms and presentation, but it could also have other complications. 0:16:08.840 --> 0:16:13.480 So both would be diagnosed through a colonoscopy. 0:16:14.160 --> 0:16:17.680 Cronesses and ulcer of colitis are clinical diagnoses, and it's 0:16:17.680 --> 0:16:21.800 a combination of the endoscopic view through a colonoscopy, the 0:16:21.880 --> 0:16:25.400 pathologic presentation what it looks like when we take little 0:16:25.400 --> 0:16:27.800 biopsies in the colon, the way that the cells are arranged, 0:16:27.880 --> 0:16:31.520 or even the types of cells, the imaging. So radiology 0:16:31.520 --> 0:16:35.200 studies MRIs or cat scans. In Jose's case, he also 0:16:35.240 --> 0:16:37.920 had a pill camera where he swallowed a little pill 0:16:37.960 --> 0:16:40.640 that took pictures all the way through his intestines. 0:16:44.240 --> 0:16:47.240 That's so much for you to experience at such a 0:16:47.280 --> 0:16:48.160 young age. 0:16:48.560 --> 0:16:51.440 Yeah, I think my lowest point was when the doctor 0:16:51.520 --> 0:16:54.440 told me what they thought it was at that time, 0:16:54.640 --> 0:16:57.720 and then just instantly having that sinking feeling of my 0:16:57.800 --> 0:17:00.000 life is never going to be the same you mentioned 0:17:00.000 --> 0:17:02.680 And my mother earlier, like watching me box was nothing 0:17:02.720 --> 0:17:06.439 compared to her watching me go through this and helping 0:17:06.440 --> 0:17:08.639 me get through it and just seeing me continuously not 0:17:08.720 --> 0:17:10.760 get better and get worse over time. 0:17:10.840 --> 0:17:12.880 And yeah, it was difficult. 0:17:13.680 --> 0:17:17.760 In terms of the mental challenges that go hand in 0:17:17.840 --> 0:17:23.640 hand with IBD, particularly severe cases of all sort of colitis. 0:17:24.119 --> 0:17:31.040 How as a gastroentrologists do you help patients navigate the 0:17:31.160 --> 0:17:34.840 mental aspect because there's a great deal of shame and 0:17:34.920 --> 0:17:39.600 secrecy and guilt and frustration and hopelessness wrapped in one. 0:17:40.359 --> 0:17:41.240 You're so right. 0:17:41.640 --> 0:17:45.760 When they've done studies looking at quality of life, patients 0:17:45.760 --> 0:17:49.200 with crohnes and ulcrapplities have a lower quality of life 0:17:49.560 --> 0:17:51.119 index than cancer patients do. 0:17:51.520 --> 0:17:53.160 Wow, that's unbelievable. 0:17:53.600 --> 0:17:55.480 And part of that is, just like you said, there's 0:17:55.520 --> 0:17:58.320 a shame aspected to it. It's not anything that they 0:17:58.400 --> 0:18:02.480 brought on on themselves, obviously, but what's the primary presenting 0:18:02.560 --> 0:18:04.440 problem while it's running to the bathroom? And that can 0:18:04.480 --> 0:18:07.600 be embarrassing in that perhaps there are certain foods that 0:18:07.640 --> 0:18:09.960 you eat that tend to set you off, or if 0:18:10.000 --> 0:18:13.040 there are other circumstances and you're going through a flare 0:18:13.200 --> 0:18:15.480 to have to run to a bathroom and you feel 0:18:15.680 --> 0:18:19.000 chained to your house right, you're afraid to leave. And 0:18:19.040 --> 0:18:22.040 on the mental health side, we also find that it's 0:18:22.040 --> 0:18:25.480 critically important to work with mental health professionals. So here 0:18:25.520 --> 0:18:28.119 at the NYU Lengo and Funat for a Bill Disease Center, 0:18:28.200 --> 0:18:31.919 we employ a full time psychologist who sees all of 0:18:31.960 --> 0:18:35.639 our patients who need to see her, and it's been 0:18:35.840 --> 0:18:38.200 so impactful to have that partnership. 0:18:39.040 --> 0:18:42.159 Jose starts to grasp the reality of living with a 0:18:42.200 --> 0:18:44.879 chronic disease for the rest of his life. While an 0:18:44.960 --> 0:18:49.520 accurate diagnosis offers a path forward from misdiagnosis. That hope 0:18:49.560 --> 0:18:52.440 is quickly dashed when a life threatening flare up sends 0:18:52.520 --> 0:18:53.920 him to ther. 0:18:55.040 --> 0:18:58.159 He wasn't getting better and I thought I was going 0:18:58.240 --> 0:19:02.520 to lose him. 0:19:02.640 --> 0:19:06.520 We'll be right back with Symptomatic, a medical mystery podcast. 0:19:08.440 --> 0:19:13.280 I'm Cindy Lauber with fellow Concentics advocate chef Michelle Bernstein. 0:19:13.560 --> 0:19:17.480 We'll share our experiences with plaque sariasis with storiatic arthritis, 0:19:17.480 --> 0:19:20.280 and doctor Panico will talk about the possible connection. 0:19:20.720 --> 0:19:23.040 Cocentic sech you can you MAB is prescribed for adults 0:19:23.040 --> 0:19:25.880 with moderate to severe placksorias as three hundred milligram dose 0:19:25.920 --> 0:19:28.440 and adults with active soriatic arthritis one hundred and fifty 0:19:28.480 --> 0:19:31.679 milligram dose. Don't use if you're allergic to cocentics before starting, 0:19:31.680 --> 0:19:34.920 get checked for TB, serious allergic reactions, severe skin reactions 0:19:34.920 --> 0:19:37.200 that look like ecima, and an increased risk of infections. 0:19:37.240 --> 0:19:39.480 Some fatal have occurred. It may lower your ability to 0:19:39.480 --> 0:19:41.479 fight infections, so tell your doctor if you have an 0:19:41.480 --> 0:19:44.960 infection or symptoms like fevers, sweats, chills, muscleggs, or cough, 0:19:45.040 --> 0:19:47.480 How do to vaccine or plan to or if IBD symptoms? 0:19:47.520 --> 0:19:51.000 Developer Warson learn more at one eight four four Cocentics 0:19:51.119 --> 0:19:52.160 orcocentics dot com. 0:19:52.160 --> 0:19:53.840 Slash chef Michelle. 0:19:54.840 --> 0:20:03.040 Now back to Symptomatic a medical mystery podcast. Jose Torres, 0:20:03.240 --> 0:20:06.159 not even twenty one, had been on a roller coaster 0:20:06.240 --> 0:20:09.520 of hospital visits for months on end. He had to 0:20:09.560 --> 0:20:13.600 abandon his boxing dreams and was now struggling to keep 0:20:13.680 --> 0:20:17.280 up with his college courses, often unable to leave his 0:20:17.400 --> 0:20:21.879 home due to the pain, fatigue, and constant bathroom urgency. 0:20:22.480 --> 0:20:24.840 Although he was confident in the new diagnosis a whole 0:20:24.880 --> 0:20:34.320 sortive colitis, long term relief felt out of reach. So 0:20:34.400 --> 0:20:38.040 does life go back to normal for a period of 0:20:38.040 --> 0:20:40.080 time at this point, for a. 0:20:40.000 --> 0:20:42.440 Period of time, for about a year, and it did 0:20:42.520 --> 0:20:46.600 prescribe me a regiment of medications that actually did work, 0:20:46.920 --> 0:20:51.439 but only for that short time. Unfortunately, there was still 0:20:51.760 --> 0:20:56.440 anxiety around urgency. There was still days where I would 0:20:56.440 --> 0:20:59.679 feel fatigued. It wasn't remission, it was disease. 0:20:59.720 --> 0:20:59.880 Man. 0:21:00.400 --> 0:21:03.280 So it was about as normal as it could have been. 0:21:03.680 --> 0:21:05.760 I was able to go to school and do what 0:21:05.800 --> 0:21:08.520 I had to do for my classes. I was able to, 0:21:08.680 --> 0:21:11.080 you know, spend some time with friends, but there was 0:21:11.080 --> 0:21:14.440 still that that anxiety part of it, the possibility and 0:21:14.600 --> 0:21:16.120 kind of those thoughts in the back of my head 0:21:16.119 --> 0:21:19.159 and Frankly, symptoms would arise when I would least expect it, 0:21:19.200 --> 0:21:23.080 so manageable, but yeah, still not what it was prior 0:21:23.119 --> 0:21:24.240 to the diagnosis. 0:21:24.840 --> 0:21:27.960 Were you in denial initially when things came back full 0:21:28.040 --> 0:21:32.520 force that first huge flare after a year of having 0:21:32.600 --> 0:21:35.879 had things settle down, were you hoping it was just 0:21:35.920 --> 0:21:37.080 like a temporary blip. 0:21:38.080 --> 0:21:38.320 Yeah? 0:21:38.520 --> 0:21:40.359 I could have compared it to the mindset I had 0:21:40.400 --> 0:21:43.840 when I first had symptoms. I was just like, I'm 0:21:43.880 --> 0:21:45.800 just gonna be feeling like this today, or I'm just 0:21:45.800 --> 0:21:47.480 gonna be feeling like this this week. And then the 0:21:47.520 --> 0:21:50.320 week turned into two weeks and it was like, no, 0:21:50.760 --> 0:21:52.160 it's here we go again. 0:21:53.080 --> 0:21:54.080 And then what happened? 0:21:54.760 --> 0:21:58.680 Then I flared, So all of the symptoms came back 0:21:59.080 --> 0:22:03.040 full force, the fatigue, the blood, the pain. They had 0:22:03.320 --> 0:22:06.280 tried in other kind of regiment of medications. They had 0:22:06.320 --> 0:22:10.520 tried to increase hostages, and nothing worked this time. So 0:22:10.680 --> 0:22:11.640 it got to the point. 0:22:11.440 --> 0:22:15.600 Where I was I was hospitalized for a good portion 0:22:15.680 --> 0:22:19.440 of time and actually had to take a semester off 0:22:19.480 --> 0:22:22.200 of school because I was missing so much of it. 0:22:22.800 --> 0:22:27.560 That's so much, Jose, Yeah, you must have just felt 0:22:28.160 --> 0:22:33.720