WEBVTT - Case #19: Jose 0:00:04.360 --> 0:00:13.960 Really, my condition was continuously dropping. None of the treatment 0:00:14.080 --> 0:00:17.640 was working. It got to the point where I was 0:00:17.680 --> 0:00:20.759 actually that to give me nutrition through a tube. 0:00:21.280 --> 0:00:24.560 It was hard because obviously anyone knows that if you 0:00:24.640 --> 0:00:27.640 see blood, it's not a good thing at all, and 0:00:27.680 --> 0:00:30.720 it's not something that's I don't think it's going to 0:00:30.760 --> 0:00:31.200 go away. 0:00:31.760 --> 0:00:35.479 The fear continues to fester. It just becomes a potential 0:00:35.560 --> 0:00:37.800 really dark spiral for some patients. 0:00:38.120 --> 0:00:40.839 I think my lowest point was having that sinking feeling 0:00:40.880 --> 0:00:43.480 of my life is never going to be the same. 0:00:48.240 --> 0:00:51.840 How terrifying would it be to fight an unknown enemy, 0:00:52.360 --> 0:00:56.160 one you didn't recognize and didn't see coming. What if 0:00:56.200 --> 0:01:00.320 that enemy was coming from within a disease that even 0:01:00.440 --> 0:01:06.119 doctors couldn't identify. Nearly half of all Americans suffer from 0:01:06.160 --> 0:01:10.840 some chronic illness, and many struggle for an accurate diagnosis. 0:01:11.920 --> 0:01:18.640 These are their stories. I'm Lauren Brite Pacheco, and this 0:01:18.959 --> 0:01:34.840 is symptomatic. Jose Torres has always felt most at home 0:01:34.880 --> 0:01:38.839 when he can express himself, whether it's through music, poetry, 0:01:39.120 --> 0:01:40.000 or visual arts. 0:01:41.560 --> 0:01:43.240 Ever since I was kid, I used to always draw 0:01:43.360 --> 0:01:46.560 like cartoons, and as I grew up, continued sketching actually 0:01:46.600 --> 0:01:49.840 went to middle school for art specifically. 0:01:49.760 --> 0:01:53.080 Though Jose was raised by his grandparents throughout his childhood, 0:01:53.360 --> 0:01:56.560 his mother, Araceli, was always a huge part of a 0:01:56.600 --> 0:02:00.280 support system. What kind of qualities does he have make 0:02:00.360 --> 0:02:01.200 him so special? 0:02:01.880 --> 0:02:07.360 He's intelligent, he's sensitive, he's hard working, he doesn't settle. 0:02:08.200 --> 0:02:12.440 He's a very strong person. A lot of people grow 0:02:12.560 --> 0:02:16.360 fond of him really quickly. He's very social, unlike me, 0:02:16.440 --> 0:02:19.600 I'm the opposite of him. But he likes to be 0:02:19.680 --> 0:02:22.680 around people and he likes to help people as well. 0:02:23.320 --> 0:02:29.160 So tell me philosophy, poetry, reading, music, fan artist. How 0:02:29.200 --> 0:02:30.440 did you get into boxing? 0:02:31.280 --> 0:02:33.400 I had a bit of a rough upbringing, so that 0:02:33.520 --> 0:02:36.160 was a way my mother identified was just like, let's 0:02:36.200 --> 0:02:41.600 put that energy to something productive. Boxing was also a 0:02:41.720 --> 0:02:44.520 huge sport just in the home, Like my grandfather growing 0:02:44.600 --> 0:02:46.800 up would always watch like the big fights and whatnot. 0:02:47.280 --> 0:02:49.240 So I was like, yeah, sure, why not? So we 0:02:49.240 --> 0:02:49.960 found a gym. 0:02:50.080 --> 0:02:52.760 I went, had a quick like intro session, loved it, 0:02:52.800 --> 0:02:55.360 and that was it. If I wasn't in school, I 0:02:55.480 --> 0:02:57.200 was likely in the gym. 0:02:57.800 --> 0:03:00.480 And by the time you were a freshman and you 0:03:00.480 --> 0:03:01.639 were really into boxing. 0:03:02.160 --> 0:03:05.840 Yes, at that point, the idea was my trainer wanted 0:03:05.880 --> 0:03:08.480 to start preparing me to compete in potentially the Golden 0:03:08.480 --> 0:03:10.600 Gloves tournament to see how I. 0:03:10.560 --> 0:03:13.960 Placed there, And at that point, no pun intended, but 0:03:14.000 --> 0:03:17.040 you ended up getting knocked out in terms of health. 0:03:18.040 --> 0:03:20.080 You know, I was saying, your mom must be tough, 0:03:20.200 --> 0:03:23.360 but I should think to a certain extent, seeing you 0:03:23.520 --> 0:03:27.840 box prepared her for what you were about to battle 0:03:27.880 --> 0:03:29.040 in terms of your health. 0:03:29.840 --> 0:03:31.919 My mom's a tough woman, but nothing prepared us for 0:03:32.800 --> 0:03:35.840 that for the bout that came about with my health, 0:03:36.000 --> 0:03:38.040 because yeah, it came out of nowhere. 0:03:40.640 --> 0:03:42.960 It was just a regular day. I probably just. 0:03:42.920 --> 0:03:46.320 Gotten back from college courses and I went to use 0:03:46.360 --> 0:03:48.080 the restroom and there was blood. 0:03:49.200 --> 0:03:51.120 So that was the first thing. I was like, Oh, 0:03:51.160 --> 0:03:52.200 that's different. 0:03:52.920 --> 0:03:56.480 But I didn't tell anyone because I just figured, oh, 0:03:56.480 --> 0:03:58.120 it's stomach bug, maybe it's something I ate. 0:03:58.240 --> 0:04:00.920 It'll go away. I just figure it would pass and 0:04:00.960 --> 0:04:02.040 it wasn't a big deal. 0:04:02.720 --> 0:04:07.560 So initially you just kind of dismissed it as a fluke. Yeah, 0:04:07.600 --> 0:04:11.080 and then when did it next to get on your 0:04:11.200 --> 0:04:12.320 radar as an issue? 0:04:12.840 --> 0:04:16.440 So then the blood continued, not frequently enough for me 0:04:16.560 --> 0:04:20.000 to be alarmed, which sounds crazy, but it still occurred 0:04:20.920 --> 0:04:23.520 a few times in the weeks coming up. But then 0:04:23.720 --> 0:04:28.919 I started feeling intense cramping and abdominal pains. But even 0:04:28.920 --> 0:04:31.279 that I kind of just shuk it off. Still didn't 0:04:31.360 --> 0:04:34.520 say anything to anyone. And part of that is honestly 0:04:34.560 --> 0:04:37.520 like a cultural thing, like within Latin households, we don't 0:04:37.760 --> 0:04:41.040 like going to the doctor typically unless it's absolutely necessary. 0:04:41.160 --> 0:04:43.400 We were like, oh, it'll. 0:04:42.600 --> 0:04:45.120 Go away, it'll be fine, and just growing up, even 0:04:45.160 --> 0:04:46.719 like a tile and all, like, we wouldn't take that 0:04:46.800 --> 0:04:49.520 unless it was absolutely necessary. Like we were just you know, 0:04:49.600 --> 0:04:51.919 natural ways to get rid of fevers and whatnot. 0:04:52.400 --> 0:04:53.520 So I just didn't mention it. 0:04:54.680 --> 0:04:58.320 What is your day to day like at this point, 0:04:58.600 --> 0:05:02.720 is it impacting you commuting your classes? 0:05:03.279 --> 0:05:04.159 Yeah, one hundred percent. 0:05:04.200 --> 0:05:06.279 I was not able to make it to class half 0:05:06.279 --> 0:05:08.760 the time because at this point also what started to 0:05:08.800 --> 0:05:13.200 manifest was restroom urgency. Frankly so even taking the train, 0:05:13.400 --> 0:05:15.600 because you know, I lived in Brooklyn, my school was 0:05:15.640 --> 0:05:18.599 in Manhattan. I was also working part time at the 0:05:18.600 --> 0:05:22.000 time as well, so it's just I couldn't make it 0:05:22.040 --> 0:05:24.599 to everything. On top of training, I became tired to 0:05:24.600 --> 0:05:27.240 even go to the gym. To train and box anymore. 0:05:27.839 --> 0:05:30.560 You know, I just want to focus on that because psychologically, 0:05:30.920 --> 0:05:35.919 that transition into fear that you need to use the 0:05:36.000 --> 0:05:44.040 restroom into an absolute necessity. It's what the normal person experiences, 0:05:44.080 --> 0:05:48.200 but on volume ten. So it's like getting food poisoning 0:05:48.839 --> 0:05:53.640 out of the blue, and particularly in New York City subways, 0:05:54.240 --> 0:05:55.560 there are no restrooms. 0:05:56.080 --> 0:05:56.279 Right. 0:05:56.720 --> 0:06:00.640 It was definitely a challenge that prohibited me, to your point, 0:06:00.960 --> 0:06:03.159 to go anywhere, Like you had to be aware of 0:06:03.200 --> 0:06:05.320 how long is it going to take me, you know, 0:06:05.360 --> 0:06:06.479 where would the restrooms be. 0:06:06.960 --> 0:06:08.320 But beyond the restroom. 0:06:07.920 --> 0:06:11.680 Issue, just the fatigue, the depleted energy, the pain, like 0:06:11.720 --> 0:06:14.960 there's so many other things that went along with that 0:06:14.960 --> 0:06:16.760 that caused me to not be able to do a 0:06:16.800 --> 0:06:17.640 lot of things. 0:06:18.080 --> 0:06:20.719 When he was in school, I wasn't around, So I 0:06:20.760 --> 0:06:23.640 can only imagine how hard it was for him to 0:06:24.440 --> 0:06:27.120 know that he may have to go and have to 0:06:27.120 --> 0:06:30.240 get off the train or have to rush and it's 0:06:30.320 --> 0:06:35.560 kind of also embarrassing. I'm sure for him. 0:06:36.040 --> 0:06:40.000 It's not something that people can necessarily say, it's not 0:06:40.160 --> 0:06:44.720 something that people can necessarily understand, and it's a difficult 0:06:44.800 --> 0:06:45.840 thing to talk about. 0:06:46.600 --> 0:06:49.520 Yeah, I mean, no one likes talking about restroom issues, right, 0:06:49.560 --> 0:06:54.120 it's almost still taboo. So when someone is experiencing especially, 0:06:54.440 --> 0:06:55.840 we don't know what it is. We don't know what's 0:06:55.880 --> 0:06:59.440 happening or having these experiences. It was very difficult to 0:06:59.480 --> 0:07:02.600 communicate due to lack of understanding, and to your point, 0:07:02.680 --> 0:07:05.600 like it's difficult to share beyond the urgency. Even if 0:07:05.600 --> 0:07:07.600 I do decide to go somewhere and I get stricken 0:07:07.680 --> 0:07:11.560 with a crippling cramp or abdominal pain, then I would 0:07:11.640 --> 0:07:13.320 have to like go crowl up in a corner somewhere. 0:07:14.840 --> 0:07:19.440 Persisting for months on end, the symptoms became impossible to ignore, 0:07:19.760 --> 0:07:23.800 starting to interfere with Jose's life, especially his boxing dreams. 0:07:24.360 --> 0:07:27.960 Instead of focusing on his next training session, he was 0:07:28.040 --> 0:07:31.960 now just trying to make it to class. It reached 0:07:31.960 --> 0:07:33.960 a point where he could no longer hide it from 0:07:34.040 --> 0:07:35.800 his mom. 0:07:35.480 --> 0:07:37.760 And then it got to the point where then fatigue 0:07:37.800 --> 0:07:39.000 started to kick in. 0:07:39.240 --> 0:07:40.800 Fatigue isn't just being tired. 0:07:41.160 --> 0:07:43.600 When I say fatigue, I mean like you literally don't 0:07:43.640 --> 0:07:46.480 have the energy to get out of bed. It's almost 0:07:46.480 --> 0:07:50.280 difficult to explain if you've never experienced it. Just imagine 0:07:50.280 --> 0:07:54.240 if your body was completely drained of any energy or 0:07:54.560 --> 0:07:57.920 will to move, like we can't move if we wanted to, 0:07:58.480 --> 0:08:01.240 And I was just so exhausted that my mom took notice. 0:08:01.320 --> 0:08:03.600 There was just one day that I just couldn't get up, 0:08:03.680 --> 0:08:05.560 like I couldn't make it. It's a class that day, 0:08:05.720 --> 0:08:07.960 and then my mom was just like, there's something wrong, 0:08:08.080 --> 0:08:09.160 like what's going on with you? 0:08:09.680 --> 0:08:12.000 So then then I finally broke and told her, and 0:08:12.040 --> 0:08:12.280 she was. 0:08:12.280 --> 0:08:14.360 Like, yeah, we need to get you checked because I've 0:08:14.360 --> 0:08:15.760 never seen you like this before. 0:08:16.280 --> 0:08:20.120 He called me over and he was bleeding severely, and 0:08:20.200 --> 0:08:21.920 that's when we rushed to the hospital. 0:08:24.360 --> 0:08:27.760 Tell me what went through your mind. How horrifying was that? 0:08:28.640 --> 0:08:32.079 It was hard because I know that obviously anyone knows 0:08:32.120 --> 0:08:34.720 that if you see blood, it's not a good thing 0:08:34.800 --> 0:08:37.600 at all. I don't think it's going to go away, 0:08:37.720 --> 0:08:40.240 so I kind of knew that it was really serious. 0:08:45.480 --> 0:08:49.560 At the hospital, doctors drew Blood performed a colonoscopy, a 0:08:49.600 --> 0:08:53.800 procedure where a fiber optic instrument is inserted to examine 0:08:53.800 --> 0:08:57.920 the inside of the colon, and administered a barium swallow test, 0:08:58.360 --> 0:09:01.920 where jose ingested a chalk liquid that made his upper 0:09:01.920 --> 0:09:06.040 gastrointestinal tract visible on X rays. There were so many 0:09:06.080 --> 0:09:08.840 other procedures that they all started to blur together. For 0:09:08.960 --> 0:09:12.280 Jose And as a boxer, I'm sure that you were 0:09:12.280 --> 0:09:16.120 pretty aware of your weight and your body composition. What's 0:09:16.120 --> 0:09:17.400 happening to you physically? 0:09:18.160 --> 0:09:20.960 I'm just getting weaker again, not being able to train 0:09:21.040 --> 0:09:23.600 as regularly or at all. You know, it got to 0:09:23.600 --> 0:09:25.040 a point where I was so fatigued the end that 0:09:25.040 --> 0:09:28.280 I had to stop training altogether. So it was very 0:09:28.320 --> 0:09:31.080 difficult for me to maintain weight on top of not 0:09:31.120 --> 0:09:34.000 being able to exercise, which you know, just added to 0:09:34.040 --> 0:09:37.000 the fatigue. It just became a cycle of one thing 0:09:37.040 --> 0:09:39.200 compounding on the other, compounding on the other. 0:09:39.679 --> 0:09:42.720 He was getting skinnier and skinnier and skinnier and skinnier, 0:09:42.920 --> 0:09:45.040 and it was very difficult. 0:09:45.600 --> 0:09:51.360 That must have been so frightening. What is the doctor 0:09:51.440 --> 0:09:53.640 saying and what does the doctor think it is? 0:09:54.679 --> 0:10:00.440 So they told me that was Crohn's disease, which you know, durable. 0:10:00.800 --> 0:10:02.800 So getting hit with that at that age, it was 0:10:02.880 --> 0:10:05.560 just instantly like, oh what now, Like what is my 0:10:05.600 --> 0:10:07.680 life going to look like? What does this mean for me? 0:10:08.440 --> 0:10:10.040 I'm still so young, Like, what is the rest of 0:10:10.040 --> 0:10:11.000 my life going to look like? 0:10:11.800 --> 0:10:15.719 Crohn's disease is a chronic condition that causes inflammation in 0:10:15.760 --> 0:10:20.479 the digestive tract, leading to abdominal pain, severe diarrhea, fatigue, 0:10:20.880 --> 0:10:25.600 weight loss, and malnutrition. If left unchecked, it can result 0:10:25.640 --> 0:10:29.240 in debilitating and potentially life threatening complications. 0:10:30.120 --> 0:10:33.440 I started reading about chrones, and I read that it 0:10:33.440 --> 0:10:37.120 could be deadly, it could be just life long. I 0:10:37.200 --> 0:10:40.280 had no idea that they would say, oh, your son 0:10:40.360 --> 0:10:43.680 has a disease and he's going to have issues. It's 0:10:43.720 --> 0:10:44.920 going to change his life. 0:10:45.920 --> 0:10:50.320 Do you remember at that point what your biggest fears were. 0:10:51.120 --> 0:10:53.000 It went back to, like, what is my life going 0:10:53.040 --> 0:10:53.720 to look like now? 0:10:54.000 --> 0:10:57.160 I was still going to school, but struggling because of 0:10:57.640 --> 0:10:59.440 you know, all the symptoms and everything, and being in 0:10:59.520 --> 0:11:02.080 and out the hospital and not the doctor's offices. 0:11:02.800 --> 0:11:05.440 So yeah, it was really my future more than anything. 0:11:09.760 --> 0:11:12.040 Jose had been in and out of the hospital five 0:11:12.160 --> 0:11:15.640 times in just a few months. During that period, he 0:11:15.800 --> 0:11:20.880 lost thirty pounds, drastically changing his appearance and overall well being. 0:11:21.600 --> 0:11:24.079 Even though he now had a diagnosis, the lack of 0:11:24.120 --> 0:11:27.120 a clear treatment plan left him feeling like he was 0:11:27.280 --> 0:11:28.200 just treading water. 0:11:29.320 --> 0:11:33.160 They told me to keep a food diary and was 0:11:33.240 --> 0:11:35.280 just like, if you eat something that makes you not 0:11:35.360 --> 0:11:38.840 feel well, don't need it again. And in my head 0:11:38.880 --> 0:11:40.200 that just didn't make any sense. 0:11:41.040 --> 0:11:45.600 Now, on top of fearing urgency, you have to fear 0:11:46.400 --> 0:11:47.760 everything you're eating. 0:11:48.080 --> 0:11:50.440 Pretty much, because yeah, there was no guidance, And in 0:11:50.440 --> 0:11:52.000 my head, it was just like, all right, I'm write 0:11:52.000 --> 0:11:53.400 down what I eat in a day, and if I 0:11:53.400 --> 0:11:55.559 don't feel well, hey, how do I pinpoint what is 0:11:55.600 --> 0:11:59.079 it that I ate that made me feel bad or 0:11:59.360 --> 0:12:01.960 land me back in the hospital? And again like what 0:12:02.080 --> 0:12:04.760 was the long term solution? I'd been prescribed to regimen 0:12:04.800 --> 0:12:08.360 of medications as well at that time. It got slightly better, 0:12:08.400 --> 0:12:10.920 but not not manageable. 0:12:11.679 --> 0:12:16.160 So you have a diagnosis, it is not an optimistic one. 0:12:16.800 --> 0:12:20.120 How do your conditions continue at that point? Is there 0:12:20.240 --> 0:12:22.520 any kind of respite? 0:12:23.200 --> 0:12:26.480 There was a slight break, so like the frequency reduced 0:12:26.520 --> 0:12:28.880 a little bit, the urgency reduced a little bit, but 0:12:28.920 --> 0:12:31.680 there was still the fatigue. There was still the issue 0:12:31.720 --> 0:12:35.040 of what do I eat because I was still regularly 0:12:35.080 --> 0:12:37.760 going back to the doctor or the hospital because of 0:12:38.240 --> 0:12:39.520 severe symptoms. 0:12:40.080 --> 0:12:45.400 So we had to do completely different no skins, you know, blend, 0:12:45.480 --> 0:12:51.960 no seasonings, baked chicken, no fried foods at all, vegetables. 0:12:52.120 --> 0:12:55.320 It just had to be like a very soft food diet, 0:12:55.440 --> 0:13:00.360 nothing cruciferous, nothing that would hurt his stomach, so that 0:13:00.600 --> 0:13:02.520 at least we wouldn't have any flares. 0:13:03.000 --> 0:13:07.400 And that's a huge undertaking because suddenly you're having to 0:13:07.960 --> 0:13:12.199 second guess and think about everything that's going into his mouth. 0:13:13.000 --> 0:13:15.560 Yeah, it wasn't what I want to eat, it's what 0:13:15.640 --> 0:13:17.280 I have to eat. 0:13:18.040 --> 0:13:22.000 The diagnosis offered only a guise of normalcy, a brief 0:13:22.040 --> 0:13:25.680 flashback to life before the symptoms began. But as the 0:13:25.720 --> 0:13:29.520 flare ups returned and grew more frequent, Jose and Rselly 0:13:29.600 --> 0:13:32.040 knew they needed to push for a second opinion. 0:13:32.960 --> 0:13:36.200 As a mom with a child that has a diagnosis 0:13:36.520 --> 0:13:39.600 as severe as that, I didn't want just one opinion. 0:13:39.760 --> 0:13:43.320 I wanted a second opinion. I found a center that 0:13:43.480 --> 0:13:48.920 was specifically for pediatric gesture enterology, and we made an 0:13:48.960 --> 0:13:50.480 appointment and. 0:13:50.400 --> 0:13:53.800 They re ran all the tests and did the blood 0:13:53.840 --> 0:13:56.560 work all over again, and they actually came back with 0:13:56.640 --> 0:14:00.320 a different diagnosis of all sort of colitis. 0:14:01.040 --> 0:14:06.920 So what was that like for you? Somewhat relief? 0:14:07.640 --> 0:14:12.240 It was because when I shared what I was being 0:14:12.280 --> 0:14:17.160 told from my previous doctors. The current doctors that had 0:14:17.200 --> 0:14:20.240 found that did give me the proper diagnosis and whatnot, 0:14:20.800 --> 0:14:23.760 were also in disagreement with like the food diary thing, 0:14:23.800 --> 0:14:25.800 and they were just like they should have done XYZ. 0:14:25.960 --> 0:14:28.880 And so that gave me confidence in this medical team 0:14:29.240 --> 0:14:31.520 that Okay, this is the team I can trust, and 0:14:31.600 --> 0:14:34.880 let's see what happens here. And they did prescribe me 0:14:35.000 --> 0:14:38.840 a regiment of medications that actually did work, at least 0:14:38.880 --> 0:14:39.440 for a time. 0:14:40.360 --> 0:14:43.880 Altered of colitis is a disease that causes severe inflammation 0:14:44.160 --> 0:14:48.200 and ulcers in the large intestine. In most people. Symptoms 0:14:48.200 --> 0:14:51.880 develop gradually, but they can be draining and even life 0:14:51.920 --> 0:14:56.280 threatening if not properly treated. It's estimated that nearly seven 0:14:56.360 --> 0:14:59.720 hundred and fifty thousand people in North America are affected 0:14:59.760 --> 0:15:04.280 by disease. Both Crohn's disease and alsortive colitis fall under 0:15:04.280 --> 0:15:09.560 the umbrella of inflammatory bowel disease. Jose's current gastrentrologist, doctor 0:15:09.560 --> 0:15:12.720 Brian Bosworth, explains the difference between the two. 0:15:15.120 --> 0:15:20.040 Inflammatory bowel diseases are a spectrum of presentations of an 0:15:20.120 --> 0:15:24.520 autoimmune attack by your white blood cells on your intestines 0:15:25.120 --> 0:15:27.880 and when that goes awry, that can lead to more 0:15:27.880 --> 0:15:31.800 white blood cells coming in, more destruction of tissue. And 0:15:31.840 --> 0:15:33.680 in the case of all sort of colitis, it's really 0:15:33.720 --> 0:15:36.840 the surface level of the colon, and so some symptoms 0:15:36.840 --> 0:15:41.920 that patients would get would be bleeding, diarrhea, urgency that 0:15:41.960 --> 0:15:43.720 they have to run to the bathroom right away if 0:15:43.760 --> 0:15:45.960 they felt the urge to go because they were afraid 0:15:46.000 --> 0:15:47.680 that they would have an accident or not be able 0:15:47.760 --> 0:15:51.480 to control it. If that inflammation is not just at 0:15:51.520 --> 0:15:54.280 the surface level on the inside of the bowl, but 0:15:54.440 --> 0:15:57.920 actually is throughout the entire wall of the bowl, that's 0:15:58.000 --> 0:16:01.920 more Crone's disease. It's what we call transmural through the wall, 0:16:02.400 --> 0:16:05.720 and that can have the same types of symptoms and presentation, 0:16:05.840 --> 0:16:08.240 but it could also have other complications. 0:16:08.800 --> 0:16:13.440 So both would be diagnosed through a colonoscopy. 0:16:14.080 --> 0:16:17.640 Cronesses and ulcer of colitis are clinical diagnoses, and it's 0:16:17.640 --> 0:16:21.760 a combination of the endoscopic view through a colonoscopy, the 0:16:21.840 --> 0:16:25.360 pathologic presentation, what it looks like when we take little 0:16:25.360 --> 0:16:27.760 biopsies in the colon, the way that the cells are arranged, 0:16:27.840 --> 0:16:31.480 or even the types of cells, the imaging. So radiology 0:16:31.480 --> 0:16:35.160 studies MRIs or cat scans. In Jose's case, he also 0:16:35.200 --> 0:16:37.880 had a pill camera where he swallowed a little pill 0:16:37.920 --> 0:16:40.600 that took pictures all the way through his intestines. 0:16:44.200 --> 0:16:47.200 That's so much for you to experience at such a 0:16:47.240 --> 0:16:48.120 young age. 0:16:48.520 --> 0:16:51.400 Yeah, I think my lowest point was when the doctor 0:16:51.480 --> 0:16:54.400 told me what they thought it was at that time, 0:16:54.560 --> 0:16:57.680 and then just instantly having that sinking feeling of my 0:16:57.760 --> 0:16:59.960 life is never going to be the same. You mentioned 0:17:00.080 --> 0:17:03.120 my mother earlier, like watching me box was nothing compared 0:17:03.120 --> 0:17:06.480 to her watching me go through this and helping me 0:17:06.560 --> 0:17:08.880 get through it and just seeing me continuously not get 0:17:08.920 --> 0:17:10.720 better and get worse over time. 0:17:10.800 --> 0:17:12.840 And yeah, it was difficult. 0:17:13.640 --> 0:17:17.720 In terms of the mental challenges that go hand in 0:17:17.800 --> 0:17:23.600 hand with IBD, particularly severe cases of all sort of colitis. 0:17:24.080 --> 0:17:31.000 How as a gastroentrologists do you help patients navigate the 0:17:31.119 --> 0:17:34.800 mental aspect because there's a great deal of shame and 0:17:34.880 --> 0:17:40.080 secrecy and guilt and frustration and hopelessness wrapped in one. 0:17:40.320 --> 0:17:41.200 You're so right. 0:17:41.600 --> 0:17:45.720 When they've done studies looking at quality of life, patients 0:17:45.720 --> 0:17:49.160 with crones and ulcrapplities have a lower quality of life 0:17:49.520 --> 0:17:51.080 index than cancer patients do. 0:17:51.480 --> 0:17:53.119 Wow, that's unbelievable. 0:17:53.560 --> 0:17:55.440 And part of that is, just like you said, there's 0:17:55.480 --> 0:17:58.280 a shame aspected to it. It's not anything that they 0:17:58.359 --> 0:18:02.440 brought on on themselves, obviously, but what's the primary presenting 0:18:02.520 --> 0:18:04.400 problem while it's running to the bathroom? And that can 0:18:04.400 --> 0:18:07.560 be embarrassing in that perhaps there are certain foods that 0:18:07.600 --> 0:18:09.879 you eat that tend to set you off, or if 0:18:09.960 --> 0:18:13.000 there are other circumstances and you're going through a flare 0:18:13.160 --> 0:18:15.440 to have to run to a bathroom and you feel 0:18:15.640 --> 0:18:18.960 chained to your house right, you're afraid to leave. And 0:18:19.000 --> 0:18:22.000 on the mental health side, we also find that it's 0:18:22.000 --> 0:18:25.440 critically important to work with mental health professionals. So here 0:18:25.440 --> 0:18:28.080 at the NYU Lengo and FUNA for a Bill Disease Center, 0:18:28.160 --> 0:18:31.879 we employ a full time psychologist who sees all of 0:18:31.920 --> 0:18:35.600 our patients who need to see her, and it's been 0:18:35.800 --> 0:18:38.160 so impactful to have that partnership. 0:18:39.000 --> 0:18:42.119 Jose starts to grasp the reality of living with a 0:18:42.160 --> 0:18:44.840 chronic disease for the rest of his life. While an 0:18:44.920 --> 0:18:49.480 accurate diagnosis offers a path forward from misdiagnosis. That hope 0:18:49.520 --> 0:18:52.399 is quickly dashed when a life threatening flare up sends 0:18:52.480 --> 0:18:53.879 him to ther. 0:18:55.000 --> 0:18:58.119 He wasn't getting better, and I thought I was going 0:18:58.200 --> 0:19:02.480 to lose him. 0:19:02.600 --> 0:19:06.439 We'll be right back with Symptomatic, a Medical Mystery Podcast. 0:19:09.640 --> 0:19:17.840 Now back to Symptomatic, a medical Mystery Podcast. Jose Torres, 0:19:18.080 --> 0:19:21.000 not even twenty one, had been on a roller coaster 0:19:21.040 --> 0:19:24.320 of hospital visits for months on end. He had to 0:19:24.359 --> 0:19:28.440 abandon his boxing dreams and was now struggling to keep 0:19:28.520 --> 0:19:32.080 up with his college courses, often unable to leave his 0:19:32.240 --> 0:19:36.720 home due to the pain, fatigue, and constant bathroom urgency. 0:19:37.280 --> 0:19:39.680 Although he was confident in the new diagnosis a whole 0:19:39.680 --> 0:19:43.240 sort of colitis, long term relief felt out of reach. 0:19:49.000 --> 0:19:52.760 So does life go back to normal for a period 0:19:52.760 --> 0:19:53.680 of time at this point? 0:19:54.520 --> 0:19:56.959 For a period of time, for about a year, they 0:19:57.000 --> 0:20:01.439 did prescribe me a regiment of medications that actually did work, 0:20:01.720 --> 0:20:03.400 but only for that short time. 0:20:03.480 --> 0:20:10.440 Unfortunately, there was still anxiety around urgency. There was still 0:20:10.560 --> 0:20:13.879 days where I would feel fatigued. It wasn't remission, it 0:20:13.920 --> 0:20:17.360 was disease management. So it was about as normal as 0:20:17.400 --> 0:20:19.639 it could have been. I was able to go to 0:20:19.680 --> 0:20:22.159 school and do what I had to do for my classes. 0:20:22.720 --> 0:20:25.200 I was able to, you know, spend some time with friends, 0:20:25.359 --> 0:20:28.119 but there was still that anxiety part of it, the 0:20:28.200 --> 0:20:30.600 possibility and kind of those thoughts in the back of 0:20:30.600 --> 0:20:33.160 my head, and frankly, symptoms would arise when I would 0:20:33.280 --> 0:20:36.840 least expect it. So manageable, but yeah, still not what 0:20:37.320 --> 0:20:39.080 it was prior to the diagnosis. 0:20:39.680 --> 0:20:43.159 Were you in denial initially when things came back full force, 0:20:43.320 --> 0:20:47.640 that first huge flare after a year of having had 0:20:47.680 --> 0:20:50.840 things settle down, Were you hoping it was just like 0:20:50.840 --> 0:20:51.920 a temporary blip. 0:20:52.880 --> 0:20:53.160 Yeah. 0:20:53.320 --> 0:20:55.440 I could compare it to the mindset I had when 0:20:55.480 --> 0:20:58.760 I first had symptoms. I was just like, I'm just 0:20:58.800 --> 0:21:00.600 going to be feeling like this today, or I'm just 0:21:00.600 --> 0:21:02.320 gonna be feeling like this this week. And then the 0:21:02.320 --> 0:21:05.359 week turned into two weeks and it was like, nope, 0:21:05.560 --> 0:21:06.680 it's here. 0:21:06.480 --> 0:21:07.000 We go again. 0:21:07.920 --> 0:21:08.920 And then what happened? 0:21:09.560 --> 0:21:13.520 Then I flared, So all of the symptoms came back 0:21:13.920 --> 0:21:17.840 full force, the fatigue, the blood, the pain. They had 0:21:18.160 --> 0:21:21.119 tried in other kind of regiment of medications. They had 0:21:21.119 --> 0:21:25.360 tried to increase hostages and nothing worked this time. So 0:21:25.480 --> 0:21:28.000 it got to the point where I was I was 0:21:28.040 --> 0:21:32.280 hospitalized for a good portion of time and actually had 0:21:32.320 --> 0:21:35.679 to take a semester off of school because I was 0:21:35.720 --> 0:21:37.040 missing so much of it. 0:21:37.600 --> 0:21:42.360 That's so much Jose, Yeah, you must have just felt 0:21:42.960 --> 0:21:48.520 so overwhelmed with having to just fight through every day. 0:21:49.480 --> 0:21:52.639 Yeah, it was difficult because at the worst I was 0:21:53.000 --> 0:21:56.440 just long term admitted to the hospital and my condition 0:21:56.640 --> 0:21:58.920 was continuously dropping. 0:21:59.560 --> 0:22:00.959 None of the treatment was working. 0:22:02.520 --> 0:22:08.960 I dropped down to round one hundred pounds. 0:22:08.720 --> 0:22:11.199 So we went into a lot of problems. He was 0:22:11.800 --> 0:22:15.639 not keeping food down. They had to put a food 0:22:15.920 --> 0:22:20.640 tube in him, which in itself was very, very scary 0:22:20.680 --> 0:22:24.000 and difficult to make a decision, but there's no other choice. 0:22:24.760 --> 0:22:28.440 So I pretty much lived in the hospital with him 0:22:28.480 --> 0:22:31.639 for a whole month, and that was very hard. 0:22:32.320 --> 0:22:34.879 It was quite a battle, and yeah, I was pretty 0:22:34.920 --> 0:22:39.480 much experiencing everything he could possibly experience associated with colliitus. 0:22:39.560 --> 0:22:44.680