WEBVTT 00:00:03.599 --> 00:00:06.440 I was having a fever every day. I was throwing 00:00:06.440 --> 00:00:09.300 up. I was going to the bathroom like constantly. 00:00:09.439 --> 00:00:12.900 I could barely leave the house. So I landed in 00:00:12.900 --> 00:00:16.800 the hospital again in October and this time it 00:00:16.800 --> 00:00:19.739 was my mom. She was the one who first sat me 00:00:19.739 --> 00:00:23.019 down and she was like, I know you might not want 00:00:23.019 --> 00:00:25.399 to hear this but like have you considered that 00:00:25.399 --> 00:00:29.280 maybe it's time to... have surgery. So, you know, 00:00:29.280 --> 00:00:30.980 she kind of gave me her perspective on that. 00:00:31.079 --> 00:00:33.539 And then we kind of came up with a list of pros 00:00:33.539 --> 00:00:37.939 and cons for me personally to do it. And the 00:00:37.939 --> 00:00:40.679 list of pros was much significantly longer than 00:00:40.679 --> 00:00:44.700 the cons. This is Hannah, who got diagnosed with 00:00:44.700 --> 00:00:48.399 ulcerative colitis at age 16 in Toronto, Canada. 00:00:49.359 --> 00:00:52.399 Hannah is to be admired. She navigated years 00:00:52.399 --> 00:00:55.939 of flares and failing treatments until she had 00:00:55.939 --> 00:00:58.689 enough. She knew she couldn't reclaim her life 00:00:58.689 --> 00:01:02.969 without giving up her colon. Today, she's telling 00:01:02.969 --> 00:01:06.609 us all about her IBD journey. This is Talking 00:01:06.609 --> 00:01:09.969 S***, presented by Colitis Unfiltered. My name 00:01:09.969 --> 00:01:12.810 is Frank Tabering, and Hannah, welcome to the 00:01:12.810 --> 00:01:15.969 show. Hi, thanks so much for having me. I'm excited 00:01:15.969 --> 00:01:19.629 to chat. And it's a pleasure for me to have you 00:01:19.629 --> 00:01:23.189 as well, because based on our conversation before, 00:01:23.329 --> 00:01:25.670 you've had quite a journey. And this is something 00:01:25.670 --> 00:01:27.609 that I would actually like to start us off with 00:01:27.609 --> 00:01:31.469 to set the context as well. In, you know, a few 00:01:31.469 --> 00:01:35.349 brief sentences, would you mind just sharing 00:01:35.349 --> 00:01:38.530 with us a summary of your IBD journey, you know, 00:01:38.549 --> 00:01:41.989 from diagnosis, but also to today and how you're 00:01:41.989 --> 00:01:45.150 feeling today? Yeah, for sure. So like you said, 00:01:45.230 --> 00:01:48.689 I was diagnosed at 16, almost 10 years ago now 00:01:48.689 --> 00:01:53.310 for me. At the time, I wasn't having very many 00:01:53.310 --> 00:01:56.129 symptoms. I just had some blood in my stool, 00:01:56.230 --> 00:01:59.790 but my mom has colitis as well. So my doctor 00:01:59.790 --> 00:02:03.010 wanted to get me an urgent referral. So I had 00:02:03.010 --> 00:02:05.790 a colonoscopy and then after that was diagnosed, 00:02:05.930 --> 00:02:10.150 started taking medication. I was in and out of 00:02:10.150 --> 00:02:13.169 flares and remission for about four years. And 00:02:13.169 --> 00:02:18.810 then in 2020, I had surgery to remove my colon 00:02:18.810 --> 00:02:21.840 because of how it progressed. So that was about 00:02:21.840 --> 00:02:25.979 five years ago now. And now I'm feeling pretty 00:02:25.979 --> 00:02:28.219 good. I still have some flare -ups every now 00:02:28.219 --> 00:02:31.560 and then. Right now I'm kind of in a mild flare 00:02:31.560 --> 00:02:35.000 -up, but otherwise I'm doing pretty well. You 00:02:35.000 --> 00:02:38.740 were at actual remission for quite some time, 00:02:38.819 --> 00:02:42.719 and then the symptoms all of a sudden showed 00:02:42.719 --> 00:02:47.280 back up? Or what happened really? that you went 00:02:47.280 --> 00:02:50.860 from remission to a sudden sort of flare or setback? 00:02:51.240 --> 00:02:53.780 It's kind of hard to say. It was like I would 00:02:53.780 --> 00:02:56.439 try a medication and it would help for a few 00:02:56.439 --> 00:02:59.539 months, maybe six months. I think the longest 00:02:59.539 --> 00:03:02.759 remission I had was almost a year. And then it 00:03:02.759 --> 00:03:05.219 was always kind of sudden. The medication would 00:03:05.219 --> 00:03:08.280 just stop working for me and I would be in a 00:03:08.280 --> 00:03:10.960 bad flare -up again and have to do a round of 00:03:10.960 --> 00:03:14.870 prednisone and switch medications. That would 00:03:14.870 --> 00:03:18.110 work for maybe a few months and then kind of 00:03:18.110 --> 00:03:20.909 just repeating the cycle. And then the periods 00:03:20.909 --> 00:03:23.250 of remission were getting shorter and shorter. 00:03:23.370 --> 00:03:26.310 And eventually it wasn't even remission. It was 00:03:26.310 --> 00:03:29.990 like I was still in a flare up, even after like 00:03:29.990 --> 00:03:32.490 switching medication and having the prednisone 00:03:32.490 --> 00:03:35.409 and stuff. So, yeah, it just got too severe that 00:03:35.409 --> 00:03:38.439 nothing was really making any difference. So 00:03:38.439 --> 00:03:40.159 yeah, I think that really sets the context of 00:03:40.159 --> 00:03:42.319 what we're going to talk about today in a little 00:03:42.319 --> 00:03:44.379 bit more detail. And I kind of always like to 00:03:44.379 --> 00:03:46.620 start with taking a trip back to the past, you 00:03:46.620 --> 00:03:48.120 know, and then talk a little bit about the present 00:03:48.120 --> 00:03:51.400 before we take a look at the future. So if we 00:03:51.400 --> 00:03:56.460 go back to you at age 16, how did the doctor 00:03:56.460 --> 00:03:59.139 break the news to you? And also when you heard 00:03:59.139 --> 00:04:01.759 that you had ulcerative colitis, what went through 00:04:01.759 --> 00:04:08.500 your head at that moment? don't have an immediate 00:04:08.500 --> 00:04:11.900 family member it was less of a shock because 00:04:11.900 --> 00:04:15.599 I knew that that symptom that I was having like 00:04:15.599 --> 00:04:18.060 the blood in my stool I knew that that was a 00:04:18.060 --> 00:04:22.149 pretty big indicator and like most likely was 00:04:22.149 --> 00:04:24.910 headed in that direction so mentally I was like 00:04:24.910 --> 00:04:28.569 still a little bit prepared going into the colonoscopy 00:04:28.569 --> 00:04:31.730 I remember like they put me under for it because 00:04:31.730 --> 00:04:35.629 I was young so I don't remember much but I remember 00:04:35.629 --> 00:04:37.829 like I was still kind of out of it but my parents 00:04:37.829 --> 00:04:40.329 were there and they were showing the pictures 00:04:40.329 --> 00:04:43.449 from the scope and kind of just explaining everything 00:04:43.449 --> 00:04:45.860 and just wanted to start me on medication right 00:04:45.860 --> 00:04:47.620 away and I don't think I really said much of 00:04:47.620 --> 00:04:50.279 anything and then when we left I just remember 00:04:50.279 --> 00:04:51.920 like on the way home I was just like crying to 00:04:51.920 --> 00:04:55.699 my parents because I was so scared that I would 00:04:55.699 --> 00:04:58.259 end up needing to have surgery like it was my 00:04:58.259 --> 00:05:00.560 worst fear I was terrified of like it progressing 00:05:00.560 --> 00:05:05.139 and getting worse so yeah I was just like I was 00:05:05.139 --> 00:05:07.660 I was prepared but at the same time like just 00:05:07.660 --> 00:05:10.360 hearing it like officially it still like was 00:05:10.360 --> 00:05:15.230 a lot to process I guess Yeah. And I think what's 00:05:15.230 --> 00:05:16.870 maybe a little bit particular about your situation, 00:05:16.870 --> 00:05:19.329 you told me that your mom has ulcerative colitis 00:05:19.329 --> 00:05:23.029 as well, right? Was she diagnosed sort of before 00:05:23.029 --> 00:05:27.209 your birth or later? She was actually diagnosed 00:05:27.209 --> 00:05:30.490 when she was 15. So very similar in the timeline. 00:05:30.949 --> 00:05:34.910 And her disease progressed really quickly. She 00:05:34.910 --> 00:05:37.949 had to have emergency surgery when she was 17. 00:05:38.550 --> 00:05:43.699 So I've kind of like grown up. Just knowing kind 00:05:43.699 --> 00:05:45.920 of things that she's been through and like her 00:05:45.920 --> 00:05:48.620 current struggles. She has a J pouch now. So 00:05:48.620 --> 00:05:51.439 just, you know, growing up, seeing her every 00:05:51.439 --> 00:05:53.500 now and then have like a bowel obstruction or 00:05:53.500 --> 00:05:55.459 not being able to eat certain foods, stuff like 00:05:55.459 --> 00:05:58.899 that. So I've always kind of been aware and kind 00:05:58.899 --> 00:06:02.000 of just knew that that might happen to me too. 00:06:02.339 --> 00:06:04.899 So basically when you were diagnosed, like you 00:06:04.899 --> 00:06:07.379 mentioned, it's not like you didn't know what 00:06:07.379 --> 00:06:10.480 ulcerative colitis was. I think you've had that 00:06:10.480 --> 00:06:14.149 sort of. Right. And did that sort of make you 00:06:14.149 --> 00:06:17.290 feel maybe more at ease or because, you know, 00:06:17.290 --> 00:06:20.269 a lot of patients that get diagnosed, they might 00:06:20.269 --> 00:06:22.189 never have heard of it. And there's this sudden 00:06:22.189 --> 00:06:25.250 panic, right, that erupts. Did you have that 00:06:25.250 --> 00:06:28.149 same moment or were you just more on the, for 00:06:28.149 --> 00:06:30.709 lack of a better word, calmer side when you got 00:06:30.709 --> 00:06:32.930 your diagnosis because of your experience that 00:06:32.930 --> 00:06:34.430 you went through with your with your mom and 00:06:34.430 --> 00:06:36.720 her colitis? Yeah, I think it definitely makes 00:06:36.720 --> 00:06:38.560 a huge difference. Like a lot of people I talked 00:06:38.560 --> 00:06:41.660 to who were diagnosed didn't know anybody in 00:06:41.660 --> 00:06:43.980 their family, didn't even know what the disease 00:06:43.980 --> 00:06:46.180 was, or maybe they've kind of heard of it, but 00:06:46.180 --> 00:06:48.680 they just think like, oh, it's just a stomach 00:06:48.680 --> 00:06:51.160 ache or like, oh, you know, it's similar to IBS, 00:06:51.339 --> 00:06:55.759 like it's no big deal. But knowing, yeah, like 00:06:55.759 --> 00:06:58.379 my mom having it and I knew what it was, I kind 00:06:58.379 --> 00:07:00.560 of like had somewhat of an idea. I think that 00:07:00.560 --> 00:07:03.620 definitely helped. And also just knowing that 00:07:03.620 --> 00:07:07.279 she would. know a lot about it and like know 00:07:07.279 --> 00:07:09.319 more about the symptoms and possible like treatment 00:07:09.319 --> 00:07:12.300 side effects kind of all that and having her 00:07:12.300 --> 00:07:15.439 by my side I definitely felt more calm like my 00:07:15.439 --> 00:07:18.399 worries with it were more so about progression 00:07:18.399 --> 00:07:20.839 and like it getting worse rather than just like 00:07:20.839 --> 00:07:24.439 the diagnosis itself because like we said it 00:07:24.439 --> 00:07:26.360 it wasn't super random it didn't kind of come 00:07:26.360 --> 00:07:30.629 out of nowhere so that's interesting so Because 00:07:30.629 --> 00:07:33.149 a lot of people who are diagnosed, they sort 00:07:33.149 --> 00:07:36.449 of have this unknown that they carry with them. 00:07:36.470 --> 00:07:39.029 At the same time, they're scared and they feel 00:07:39.029 --> 00:07:41.350 really alone with this disease as well. So I 00:07:41.350 --> 00:07:45.689 guess for you, if we can say the blessing and 00:07:45.689 --> 00:07:47.629 the curse maybe was that you had somebody on 00:07:47.629 --> 00:07:49.490 your side to sort of be there with you, right? 00:07:49.569 --> 00:07:52.209 Through your flares and to your treatments. Yeah, 00:07:52.209 --> 00:07:54.959 that's great. So speaking of treatments. Can 00:07:54.959 --> 00:07:57.480 you take us a little bit through what kind of 00:07:57.480 --> 00:07:59.920 medications you were on? And I would also like 00:07:59.920 --> 00:08:02.220 to know if the doctors sort of started you on 00:08:02.220 --> 00:08:04.899 a traditionally sort of lower medication tier, 00:08:04.920 --> 00:08:06.939 you know, with like five ASAs and then progressed 00:08:06.939 --> 00:08:09.540 to biologics. What kind of medications were you 00:08:09.540 --> 00:08:13.199 on and how quickly did you sort of climb the 00:08:13.199 --> 00:08:17.360 tier into the biologic category? Yeah. So, yeah, 00:08:17.420 --> 00:08:19.300 I've gone through so many treatments. Honestly, 00:08:19.500 --> 00:08:21.579 like I'll go through them, but I might forget 00:08:21.579 --> 00:08:24.480 some because. I've probably lost count somewhere 00:08:24.480 --> 00:08:26.899 along the way. But yeah, so the way that the 00:08:26.899 --> 00:08:29.160 insurance here works, like everything's covered, 00:08:29.259 --> 00:08:32.840 but you have to start on tier one, like the lowest 00:08:32.840 --> 00:08:36.379 medications. And those have to not work to be 00:08:36.379 --> 00:08:38.480 able to kind of progress to the next category. 00:08:38.500 --> 00:08:40.659 And then again, same thing to progress to the 00:08:40.659 --> 00:08:44.480 biologics. And when I was first diagnosed, I 00:08:44.480 --> 00:08:48.299 was considered like mild to moderate. It wasn't 00:08:48.299 --> 00:08:51.019 yet. like the moderate to severe. So they did 00:08:51.019 --> 00:08:55.620 start me on Mezavant and the 5 -ASA, like the 00:08:55.620 --> 00:08:59.980 enemas and cordament, which is like the lower 00:08:59.980 --> 00:09:03.960 kind of steroid than prednisone. Those were really 00:09:03.960 --> 00:09:06.100 awful. Honestly, I got a lot of side effects 00:09:06.100 --> 00:09:09.299 from them. The end was obviously like so painful, 00:09:09.460 --> 00:09:13.080 so awkward to do. They didn't end up really working. 00:09:13.120 --> 00:09:15.259 So luckily I only had to do those for about two 00:09:15.259 --> 00:09:18.620 months. But I think it was like three or four 00:09:18.620 --> 00:09:23.200 months that I got switched to Imuran, I think. 00:09:23.919 --> 00:09:26.740 So another just immunosuppressant. And I was 00:09:26.740 --> 00:09:28.200 taking that with the coordinate for a while. 00:09:28.340 --> 00:09:31.519 I think that one was about. a year that it was 00:09:31.519 --> 00:09:35.399 working and then my GI was not too satisfied 00:09:35.399 --> 00:09:37.980 because my inflammatory markers were still like 00:09:37.980 --> 00:09:42.399 way too high so they wanted to switch me to biologics 00:09:42.399 --> 00:09:44.840 but I was a little bit hesitant on like the self 00:09:44.840 --> 00:09:48.360 -injection options and all that and at this point 00:09:48.360 --> 00:09:51.279 I was about to go to university and some of the 00:09:51.279 --> 00:09:53.960 biologics only worked for like two months one 00:09:53.960 --> 00:09:57.460 of them didn't work at all I got I think eight 00:09:57.460 --> 00:10:01.840 weeks course of treatment and nothing was happening 00:10:01.840 --> 00:10:04.879 at all, even with being on the prednisone. So 00:10:04.879 --> 00:10:08.100 we just switched that one as well, but. You mentioned 00:10:08.100 --> 00:10:10.820 enemas and I had to sort of smile a little bit 00:10:10.820 --> 00:10:14.399 because that was torture for me as well, to the 00:10:14.399 --> 00:10:17.019 point that I think after trying it for once or 00:10:17.019 --> 00:10:20.120 twice, I just refused to take them. Luckily for 00:10:20.120 --> 00:10:22.740 me, they actually, it's bittersweet, but they 00:10:22.740 --> 00:10:25.200 also didn't work. So I had an excuse to just 00:10:25.200 --> 00:10:29.139 drop them, but I mean. I'm still having these 00:10:29.139 --> 00:10:31.179 moments in my head that now I can laugh about 00:10:31.179 --> 00:10:33.480 of me just on the floor, you know, with one leg 00:10:33.480 --> 00:10:35.639 sort of tilted up to my chest, just trying to 00:10:35.639 --> 00:10:37.659 get this thing in and it just would not want 00:10:37.659 --> 00:10:40.759 to. Yeah, that part's painful. And then when 00:10:40.759 --> 00:10:42.779 you finally get the medication in, that's also 00:10:42.779 --> 00:10:45.159 painful. And it's like, oh, it's a whole thing. 00:10:45.580 --> 00:10:49.960 Yeah, yeah, yeah, absolutely. Now, you said that 00:10:49.960 --> 00:10:52.720 you moved to university. That meant that you've 00:10:52.720 --> 00:10:57.740 changed GI as well. Did you... have trust in 00:10:57.740 --> 00:10:59.779 this person and that doctor sort of from the 00:10:59.779 --> 00:11:01.940 get -go? Was this somebody who was proactive, 00:11:02.200 --> 00:11:04.620 well -versed in IBD? And how comfortable did 00:11:04.620 --> 00:11:06.980 you feel with that doctor, you know, and also 00:11:06.980 --> 00:11:09.019 going through all these treatments? Was it just 00:11:09.019 --> 00:11:10.580 sort of like, you know, you'll blindly follow 00:11:10.580 --> 00:11:13.480 him or her, you take all the advice, you just 00:11:13.480 --> 00:11:16.940 say, okay, new treatment, let's go? Or how was 00:11:16.940 --> 00:11:19.879 that relationship with your GI back then? And 00:11:19.879 --> 00:11:21.679 maybe how's your relationship with your current 00:11:21.679 --> 00:11:27.129 GI as well? My GI that I had that initially diagnosed 00:11:27.129 --> 00:11:31.169 me, she actually knew the GI that she was referring 00:11:31.169 --> 00:11:35.230 me to. I think maybe either through school or 00:11:35.230 --> 00:11:38.009 like residency or something like she knew of 00:11:38.009 --> 00:11:41.289 him. And then at my first appointment, yeah, 00:11:41.389 --> 00:11:43.690 he's just really good and like listening to me. 00:11:44.700 --> 00:11:48.299 practice also had all the GIs paired with a nurse 00:11:48.299 --> 00:11:51.220 practitioner. So I would be able to email her 00:11:51.220 --> 00:11:53.519 any questions really quickly without having to 00:11:53.519 --> 00:11:56.059 call or, you know, get a call back or book an 00:11:56.059 --> 00:11:57.539 appointment. So that was really helpful. And 00:11:57.539 --> 00:12:01.120 I think that made me feel secure in that, like 00:12:01.120 --> 00:12:03.960 somebody would be there to kind of help me. So 00:12:03.960 --> 00:12:07.019 yeah, I think that was good. We had a good relationship. 00:12:07.200 --> 00:12:10.039 I think the only problem was I was still really 00:12:10.039 --> 00:12:14.129 hesitant with the self -injectable. biologics 00:12:14.129 --> 00:12:18.269 and I was young you know I was 18 I was in a 00:12:18.269 --> 00:12:20.490 little bit of a flare -up it wasn't too bad but 00:12:20.490 --> 00:12:23.590 I acted like I wasn't in a flare -up I was telling 00:12:23.590 --> 00:12:26.009 him my symptoms were all good because I wanted 00:12:26.009 --> 00:12:28.129 to keep with the medication instead of switch 00:12:28.129 --> 00:12:31.470 to biologics and that was really stupid of me 00:12:31.470 --> 00:12:34.009 because a few months later I ended up in the 00:12:34.009 --> 00:12:38.309 hospital and had to switch anyways so you know 00:12:38.309 --> 00:12:41.730 I should have been more honest but it it is hard 00:12:42.379 --> 00:12:46.279 I think especially when you're young and for 00:12:46.279 --> 00:12:48.620 anybody, like it's such intimate symptoms to 00:12:48.620 --> 00:12:51.039 be kind of like talking about, especially if 00:12:51.039 --> 00:12:54.500 there is any hesitancy or fear. So I think like 00:12:54.500 --> 00:12:56.720 making sure you really do have that relationship 00:12:56.720 --> 00:13:00.000 that you're okay to bring it up. But also if 00:13:00.000 --> 00:13:02.419 you are feeling like that, it's maybe good to 00:13:02.419 --> 00:13:04.840 bring someone to your appointment with you that 00:13:04.840 --> 00:13:07.279 can kind of like remind you, like keep on track, 00:13:07.519 --> 00:13:10.100 be honest, you know, like really just say your 00:13:10.100 --> 00:13:12.399 fears and stuff like they are there to help you. 00:13:12.460 --> 00:13:16.360 Of course, they want what's best for you, but 00:13:16.360 --> 00:13:19.679 you might not want that option. So I think it's 00:13:19.679 --> 00:13:22.500 important to just kind of talk through everything. 00:13:23.379 --> 00:13:25.039 I think what you mentioned, that's actually a 00:13:25.039 --> 00:13:27.340 really great tip about sort of having somebody 00:13:27.340 --> 00:13:29.789 on your side. that can hold you accountable. 00:13:30.389 --> 00:13:32.450 I'm pretty active in the Reddit community as 00:13:32.450 --> 00:13:34.450 well. And one thing that I really see people 00:13:34.450 --> 00:13:37.789 struggle is with their doctors, you know, even 00:13:37.789 --> 00:13:40.269 with GIs that potentially are not super well 00:13:40.269 --> 00:13:44.370 versed in IBD. And, you know, a lot of people 00:13:44.370 --> 00:13:47.210 sort of, they don't have the trust in their doctor. 00:13:47.610 --> 00:13:49.929 And then a lot of the specialists, they really 00:13:49.929 --> 00:13:53.049 don't seem to be very proactive. And this is 00:13:53.049 --> 00:13:56.250 why I asked you this question, because I want 00:13:56.250 --> 00:13:58.960 people to hear that. First of all, there are 00:13:58.960 --> 00:14:01.620 really good IBD specialists and medical teams 00:14:01.620 --> 00:14:05.039 out there. And second, it's very important, I 00:14:05.039 --> 00:14:09.080 think, to also raise your voice and stand your 00:14:09.080 --> 00:14:11.879 ground and fight for your symptoms. And so it's 00:14:11.879 --> 00:14:14.379 very interesting that you mentioned that you 00:14:14.379 --> 00:14:17.940 actually hid some details about your symptoms 00:14:17.940 --> 00:14:21.179 from your doctor, but you yourself said you were 00:14:21.179 --> 00:14:23.559 young. So maybe to make the transition there 00:14:23.559 --> 00:14:27.669 as a 16 -year -old, as an 18 -year -old, what 00:14:27.669 --> 00:14:31.210 was it like to live with this disease? Because, 00:14:31.289 --> 00:14:36.090 I mean, I was diagnosed at 29. So for me, I really 00:14:36.090 --> 00:14:38.710 was never embarrassed to talk about it because 00:14:38.710 --> 00:14:41.230 it just tore my life apart, essentially, physically 00:14:41.230 --> 00:14:45.169 and mentally. But I'm assuming that 16, 18, you 00:14:45.169 --> 00:14:46.529 know, that young age, it's completely different. 00:14:46.610 --> 00:14:49.169 So how did you navigate a disease, you know, 00:14:49.169 --> 00:14:54.029 when you look back as a young adult? yeah so 00:14:54.029 --> 00:14:56.710 I mean obviously like I had my mom and her support 00:14:56.710 --> 00:15:00.730 and her understanding which is great but I didn't 00:15:00.730 --> 00:15:05.330 know anyone around my age who had IBD or had 00:15:05.330 --> 00:15:09.409 any health concern at all like in my friend group 00:15:09.409 --> 00:15:11.950 and even at my school like there was not really 00:15:11.950 --> 00:15:14.929 anybody who would talk about like oh they have 00:15:14.929 --> 00:15:18.190 diabetes or celiac disease or like really anything 00:15:18.190 --> 00:15:22.350 so that felt really isolating and then even when 00:15:22.879 --> 00:15:26.039 I would have to miss school or, you know, I was 00:15:26.039 --> 00:15:27.720 doing sports. So sometimes I would have to miss 00:15:27.720 --> 00:15:32.059 practices and stuff like that. I would tell my 00:15:32.059 --> 00:15:35.980 diagnosis, but that was usually like the extent 00:15:35.980 --> 00:15:39.460 of it and not diving into the symptoms because 00:15:39.460 --> 00:15:42.419 it just felt like, yeah, embarrassing or something 00:15:42.419 --> 00:15:44.440 that like nobody else talks about or nobody else 00:15:44.440 --> 00:15:49.320 is going through to understand either. So I definitely 00:15:49.320 --> 00:15:53.889 feel like it was isolating. to be worried and 00:15:53.889 --> 00:15:56.750 like have that fear of kind of judgment or like 00:15:56.750 --> 00:15:58.870 oh I'm the only one going through this so everyone's 00:15:58.870 --> 00:16:01.669 going to be like oh what is she talking about 00:16:01.669 --> 00:16:06.409 you know just creating distance from like friend 00:16:06.409 --> 00:16:09.129 groups because I was the only one kind of going 00:16:09.129 --> 00:16:12.029 through it and I felt that in university too 00:16:12.029 --> 00:16:16.049 a little bit at the start but then I started 00:16:16.049 --> 00:16:18.850 sharing a little bit more here and there and 00:16:18.850 --> 00:16:23.200 what made me kind of end up leaning more on people 00:16:23.200 --> 00:16:26.440 and that kind of support was just getting back 00:16:26.440 --> 00:16:29.399 feedback that like it's okay or people would 00:16:29.399 --> 00:16:32.860 listen with no judgment and empathy and then 00:16:32.860 --> 00:16:35.899 i was like okay maybe it is okay to kind of talk 00:16:35.899 --> 00:16:40.659 about it more like explain more so so what you're 00:16:40.659 --> 00:16:42.220 saying is and please correct me if i'm wrong 00:16:42.220 --> 00:16:44.779 is that you found your courage to talk about 00:16:44.779 --> 00:16:49.799 colitis or you found your voice by seeing people 00:16:49.799 --> 00:16:55.000 react to you more openly or what else did you 00:16:55.000 --> 00:16:58.580 do to sort of, you know, come up to the point 00:16:58.580 --> 00:17:01.379 where today and you're basically advocating, 00:17:01.580 --> 00:17:04.599 right? Or you're raising awareness. Was that 00:17:04.599 --> 00:17:06.660 maybe, was it the surgery or was there something 00:17:06.660 --> 00:17:09.400 else sort of that flipped that switch and that 00:17:09.400 --> 00:17:11.740 made you sort of really comfortable to go out 00:17:11.740 --> 00:17:15.950 and, you know? fight and shout as as an IBD warrior 00:17:15.950 --> 00:17:19.670 you know as we call ourselves yeah um I think 00:17:19.670 --> 00:17:22.589 a couple things like one just growing up and 00:17:22.589 --> 00:17:24.549 getting a little bit older and kind of realizing 00:17:24.549 --> 00:17:28.769 that not everything really matters and also if 00:17:28.769 --> 00:17:32.109 somebody does want to judge who I am as a person 00:17:32.109 --> 00:17:34.470 from a diagnosis I probably don't really want 00:17:34.470 --> 00:17:37.410 them to be in my life in the first place um so 00:17:37.410 --> 00:17:39.809 that was kind of like a mental switch and yeah 00:17:39.809 --> 00:17:43.720 just having people reacting well because in my 00:17:43.720 --> 00:17:47.039 mind I wasn't expecting that accepting reaction 00:17:47.039 --> 00:17:51.400 so it prevented me from you know being honest 00:17:51.400 --> 00:17:54.880 and then when I did kind of start open that door 00:17:54.880 --> 00:17:57.819 and kind of start letting some stuff out and 00:17:57.819 --> 00:18:00.160 they were just really accepting and understanding 00:18:00.160 --> 00:18:03.519 it kind of made me realize that okay probably 00:18:03.519 --> 00:18:07.519 a lot of people will take it in a good way and 00:18:07.519 --> 00:18:09.700 again if they don't that's kind of their problem 00:18:09.700 --> 00:18:12.299 not my problem So that was a big mental shift. 00:18:12.599 --> 00:18:15.640 And then also I think the biggest one was the 00:18:15.640 --> 00:18:18.660 surgery because some of the staff was kind of 00:18:18.660 --> 00:18:23.039 like very pushy on don't do surgery, keep trying 00:18:23.039 --> 00:18:25.400 this medication, you're so young, blah, blah, 00:18:25.440 --> 00:18:29.279 blah. So that was kind of like, yeah, I'm so 00:18:29.279 --> 00:18:32.279 young, you know, but I'm just struggling to survive. 00:18:33.609 --> 00:18:35.650 So it was just a kind of a weird narrative. So 00:18:35.650 --> 00:18:37.829 I was like, other people are so young also going 00:18:37.829 --> 00:18:40.529 through this. They probably feel the same. I 00:18:40.529 --> 00:18:43.369 didn't have anyone that I knew around my age 00:18:43.369 --> 00:18:46.430 when I was in high school. Even joining some 00:18:46.430 --> 00:18:49.470 like support group things that they have, like 00:18:49.470 --> 00:18:51.970 Crohn's and Colitis Canada, the age group was 00:18:51.970 --> 00:18:54.029 mostly older. So again, that was kind of the 00:18:54.029 --> 00:18:56.130 drive to be like, maybe I should just speak up 00:18:56.130 --> 00:18:59.569 and share and kind of be the person who I needed 00:18:59.569 --> 00:19:04.779 to see when I was younger. just, you know, help 00:19:04.779 --> 00:19:06.839 other people feel less alone because it is so 00:19:06.839 --> 00:19:11.099 isolating at a young age. So I think the combination, 00:19:11.180 --> 00:19:15.019 but definitely surgery, it pushed me to get more 00:19:15.019 --> 00:19:17.079 actively involved. Like I started volunteering 00:19:17.079 --> 00:19:19.319 and started advocating and like doing more things 00:19:19.319 --> 00:19:22.339 because I felt like it almost gave me a purpose. 00:19:24.140 --> 00:19:26.240 two keywords you mentioned, you know, getting 00:19:26.240 --> 00:19:28.960 older and surgery. And then another thing that 00:19:28.960 --> 00:19:30.980 I found sort of really surprising is that you 00:19:30.980 --> 00:19:33.980 were at the hospital and I'm sure you were advised 00:19:33.980 --> 00:19:36.259 or it was recommended to you to have the surgery. 00:19:36.380 --> 00:19:39.420 And you said some staff members advise against 00:19:39.420 --> 00:19:45.920 surgery. So what was it that made you go ahead 00:19:45.920 --> 00:19:48.700 with it? Was it really your GI? Was it maybe 00:19:48.700 --> 00:19:50.819 your mom? Was it just that, you know, you couldn't 00:19:50.819 --> 00:19:55.369 take the symptoms anymore? Eventually, What led 00:19:55.369 --> 00:19:58.450 you to make that decision to have the surgery? 00:19:59.309 --> 00:20:03.690 So I'm kind of giggling here because nobody actually 00:20:03.690 --> 00:20:07.269 advised me to have the surgery. Basically, I 00:20:07.269 --> 00:20:11.390 was in the hospital for a week in March with 00:20:11.390 --> 00:20:13.630 a flare -up, switched medications, was doing 00:20:13.630 --> 00:20:15.930 great for two months, then was in a really bad 00:20:15.930 --> 00:20:18.230 flare -up in the hospital for another week in 00:20:18.230 --> 00:20:21.529 July. And I was just in a flare -up for months 00:20:21.529 --> 00:20:25.200 and months and months. I was on really high dose 00:20:25.200 --> 00:20:27.980 prednisone. It wasn't doing anything. I was just 00:20:27.980 --> 00:20:30.359 getting so sick. You know, my symptoms were so 00:20:30.359 --> 00:20:33.619 bad. I was having a fever every day. I was throwing 00:20:33.619 --> 00:20:36.440 up. I was going to the bathroom like literally 00:20:36.440 --> 00:20:39.460 constantly. I could barely leave the house and 00:20:39.460 --> 00:20:42.460 I was so weak and all that stuff, right? So I 00:20:42.460 --> 00:20:46.220 landed in the hospital again in October. And 00:20:46.220 --> 00:20:48.259 this time, like I was still, I was just getting 00:20:48.259 --> 00:20:50.039 so much worse. They had me on all these different 00:20:50.039 --> 00:20:54.059 medications, had to be on TPN because I wasn't 00:20:54.059 --> 00:20:59.519 absorbing anything. I could barely eat. And it 00:20:59.519 --> 00:21:02.019 was actually, it was my mom. She was the one 00:21:02.019 --> 00:21:05.279 who first sat me down and she was like, I know 00:21:05.279 --> 00:21:07.160 you might not want to hear this, but like, have 00:21:07.160 --> 00:21:10.819 you considered that maybe it's time to have surgery? 00:21:11.559 --> 00:21:15.500 And I was like, I don't know. Like, I'm scared. 00:21:15.680 --> 00:21:17.420 I don't know how life's going to be, whatever, 00:21:17.539 --> 00:21:20.900 whatever. So she obviously had had the surgery. 00:21:21.299 --> 00:21:23.240 So, you know, she kind of gave me her perspective 00:21:23.240 --> 00:21:25.940 on that. And then we kind of came up with a list 00:21:25.940 --> 00:21:29.299 of pros and cons for me personally to do it. 00:21:29.599 --> 00:21:33.000 And the list of pros was much significantly longer 00:21:33.000 --> 00:21:37.759 than the cons. So basically, my mom and I are 00:21:37.759 --> 00:21:39.980 the one who brought that up to my GI doctor. 00:21:40.960 --> 00:21:44.579 He like came in to do rounds or whatever. I was 00:21:44.579 --> 00:21:48.619 like you know I think I want to get surgery and 00:21:48.619 --> 00:21:52.240 he was the first person who said to me uh are 00:21:52.240 --> 00:21:54.539 you sure like you're pretty young I don't want 00:21:54.539 --> 00:21:57.740 to have to give you a stoma you should be out 00:21:57.740 --> 00:21:59.660 enjoying your life not worrying about surgery 00:21:59.660 --> 00:22:02.900 and then I was like You're very right. I should 00:22:02.900 --> 00:22:05.619 be out enjoying my life, but I've literally lost 00:22:05.619 --> 00:22:08.319 this entire year to colitis. Like I've been in 00:22:08.319 --> 00:22:10.480 and out of the hospital. I've been so sick. Haven't 00:22:10.480 --> 00:22:12.339 been able to do anything with friends or family. 00:22:12.400 --> 00:22:16.339 Like I'm so done. I can't keep doing this. And 00:22:16.339 --> 00:22:20.960 his potential solution was to try another medication 00:22:20.960 --> 00:22:26.059 that might work in three to four months. And 00:22:26.059 --> 00:22:28.799 I really, truly did not think I had three to 00:22:28.799 --> 00:22:31.799 four months. I was rapidly losing weight. Like 00:22:31.799 --> 00:22:34.059 I was just skin and bones. I could barely have 00:22:34.059 --> 00:22:36.319 the strength to like stand up and walk around. 00:22:36.680 --> 00:22:39.319 And it was just really bad. And I wanted to get 00:22:39.319 --> 00:22:41.279 out of the hospital. I was already there for 00:22:41.279 --> 00:22:44.920 a week and a bit and just torturous in the hospital, 00:22:44.940 --> 00:22:47.799 as I'm sure you know. So I really wanted to get 00:22:47.799 --> 00:22:49.339 out of the hospital. And I didn't think that 00:22:49.339 --> 00:22:53.539 that would be possible without surgery. so basically 00:22:53.539 --> 00:22:56.980 he had a stoma nurse come talk to me and like 00:22:56.980 --> 00:22:59.819 you know do an assessment kind of explain things 00:22:59.819 --> 00:23:02.380 make sure that I was like mentally knew what 00:23:02.380 --> 00:23:04.980 I was getting into I guess and then he came back 00:23:04.980 --> 00:23:07.559 and I was like yeah I really still don't want 00:23:07.559 --> 00:23:11.039 my intestine like please take it out I actually 00:23:11.039 --> 00:23:13.119 like I need you to take it out I was basically 00:23:13.119 --> 00:23:17.150 begging at this point which very interesting 00:23:17.150 --> 00:23:19.410 because that was always my worst fear when I 00:23:19.410 --> 00:23:21.430 was first diagnosed. And now I was at the point 00:23:21.430 --> 00:23:23.369 where I just like, I could not take it anymore. 00:23:23.650 --> 00:23:26.569 I'd already been through so, so, so many medications. 00:23:26.910 --> 00:23:30.390 And it was like, even if this does work for a 00:23:30.390 --> 00:23:33.210 bit, it probably won't work forever. I just had 00:23:33.210 --> 00:23:35.109 that perspective because everything else had 00:23:35.109 --> 00:23:38.210 failed. Was it just one surgery? Take us through 00:23:38.210 --> 00:23:39.789 a little bit of the time of how that happened. 00:23:39.990 --> 00:23:43.980 So when I first, you know, told the surgeon like 00:23:43.980 --> 00:23:46.440 I need you to do this and he finally agreed he 00:23:46.440 --> 00:23:49.420 was talking through everything with me and he's 00:23:49.420 --> 00:23:51.619 like okay perfect so like in three months you 00:23:51.619 --> 00:23:54.140 can come back and we can create the internal 00:23:54.140 --> 00:23:56.819 pouch and then three months after that you can 00:23:56.819 --> 00:23:58.599 have it reconnected and you'll have a jay pouch 00:23:58.599 --> 00:24:02.759 and whatever and at the time I was in my third 00:24:02.759 --> 00:24:07.819 year of university and luckily like it was all 00:24:07.819 --> 00:24:09.779 online school at this point because of COVID 00:24:09.779 --> 00:24:13.819 so I was still doing school in the hospital so 00:24:13.819 --> 00:24:17.079 I was like so determined I was like I do not 00:24:17.079 --> 00:24:18.759 want to be a year behind like I still want to 00:24:18.759 --> 00:24:20.119 graduate with my friends I was so determined 00:24:20.119 --> 00:24:22.200 but I was only able to do that because everything 00:24:22.200 --> 00:24:24.500 was online but anyways so I told him like you 00:24:24.500 --> 00:24:26.559 know I at least want to finish my third year 00:24:26.559 --> 00:24:29.099 before getting like two more surgeries so I'm 00:24:29.099 --> 00:24:31.759 definitely not doing that in the next year and 00:24:31.759 --> 00:24:34.240 he was like okay no worries we can do a follow 00:24:34.240 --> 00:24:36.480 -up in the summer like when you're on your summer 00:24:36.480 --> 00:24:39.380 break and talk more about those other two surgeries 00:24:40.329 --> 00:24:44.490 So that summer came and went. I got a research 00:24:44.490 --> 00:24:46.529 job at my university, so I never went home that 00:24:46.529 --> 00:24:50.130 summer. So I never had that second talk. But 00:24:50.130 --> 00:24:55.809 as time went on, I kept thinking about, do I 00:24:55.809 --> 00:24:58.769 do the surgery? Do I not do the surgery? And 00:24:58.769 --> 00:25:03.109 like I said, seeing my mom growing up with her 00:25:03.109 --> 00:25:06.549 J pouch, like certain struggles of still needing 00:25:06.549 --> 00:25:09.779 to be near a bathroom for. you know like you 00:25:09.779 --> 00:25:12.000 can go on some trips and stuff but still kind 00:25:12.000 --> 00:25:14.700 of there there's still some level of urgency 00:25:14.700 --> 00:25:17.480 because it's not like you have perfect function 00:25:17.480 --> 00:25:20.519 and just the risk of like the blockages and the 00:25:20.519 --> 00:25:23.220 scar tissue and somewhat of a decreased diet 00:25:23.220 --> 00:25:25.279 and stuff like that and then I looked at myself 00:25:25.279 --> 00:25:27.480 and I really didn't have any of those issues 00:25:27.480 --> 00:25:30.680 I could eat I still do eat essentially everything. 00:25:31.039 --> 00:25:33.400 I don't always need to worry about being near 00:25:33.400 --> 00:25:35.980 a bathroom at all times. So I started thinking 00:25:35.980 --> 00:25:38.660 more and more about maybe just never doing the 00:25:38.660 --> 00:25:44.480 surgery. And for me, the urgency piece was one 00:25:44.480 --> 00:25:47.150 of the worst. symptoms especially like mentally 00:25:47.150 --> 00:25:49.210 because I would always have to be thinking about 00:25:49.210 --> 00:25:51.529 it always worried like can I go do this activity 00:25:51.529 --> 00:25:53.670 will there be a bathroom there you know all that 00:25:53.670 --> 00:25:56.369 stuff then I just was like maybe I just will 00:25:56.369 --> 00:25:58.390 never do it but we'll see because my surgeon 00:25:58.390 --> 00:26:01.349 had told me even if I want I could do it like 00:26:01.349 --> 00:26:08.069 five ten years from the surgery so then more 00:26:08.069 --> 00:26:12.549 recently I had a scope of like the rectal stump 00:26:12.549 --> 00:26:14.710 that is still there holding the spot for the 00:26:14.710 --> 00:26:20.049 pouch and it is covered in scar tissue really 00:26:20.049 --> 00:26:25.390 inflamed apparently actually a scope three years 00:26:25.390 --> 00:26:28.490 ago I was diagnosed with divergent proctitis 00:26:28.490 --> 00:26:32.789 but they never told me they told me it was slightly 00:26:32.789 --> 00:26:36.289 inflamed but still normal and they never gave 00:26:36.289 --> 00:26:39.940 me any medication or any follow -up So then earlier 00:26:39.940 --> 00:26:41.819 this year when they were like, oh yeah, like 00:26:41.819 --> 00:26:44.619 how have you been treating your divergent proctitis? 00:26:44.779 --> 00:26:48.640 I was like, my what? Like I had no idea. But 00:26:48.640 --> 00:26:51.240 anyways, long story short, they don't think a 00:26:51.240 --> 00:26:53.380 J pouch would even be successful anymore because 00:26:53.380 --> 00:26:55.519 of everything going on down there. But thank 00:26:55.519 --> 00:26:57.960 God I already came to that conclusion myself 00:26:57.960 --> 00:27:00.859 because imagine this whole time I was like, oh, 00:27:00.900 --> 00:27:03.539 it's fine. I'll have the J pouch surgery soon, 00:27:03.640 --> 00:27:07.930 like whatever. And then I wasn't able to. At 00:27:07.930 --> 00:27:11.089 least that is the only good side of them not 00:27:11.089 --> 00:27:13.430 telling me. But yeah, so I only had the one surgery. 00:27:13.829 --> 00:27:17.029 I'm not going to have the J pouch. I might have 00:27:17.029 --> 00:27:20.910 to have the like rectum taken out and sewn up 00:27:20.910 --> 00:27:24.490 like the Barbie surgery or whatever. But it's 00:27:24.490 --> 00:27:26.769 not really like urgent or something that is planned 00:27:26.769 --> 00:27:30.470 in the near future. Some people, they think that, 00:27:30.569 --> 00:27:33.509 hey, I have my colon taken out. My colitis is 00:27:33.509 --> 00:27:36.329 cured. You know, I will never feel anything again. 00:27:37.130 --> 00:27:39.410 But that's not always the case. So can you just 00:27:39.410 --> 00:27:43.369 take us through your life right now and also 00:27:43.369 --> 00:27:47.890 how it is going symptom -wise? And if so, how 00:27:47.890 --> 00:27:50.950 are you navigating that? For sure, yeah. That's 00:27:50.950 --> 00:27:54.450 honestly a misconception that I myself had at 00:27:54.450 --> 00:27:57.650 the start, especially because after the surgery, 00:27:57.869 --> 00:28:02.190 I felt like a million times healthier. You know, 00:28:02.230 --> 00:28:04.170 like all those other symptoms, like the pain 00:28:04.170 --> 00:28:05.730 and the not being able to eat and the weight 00:28:05.730 --> 00:28:08.329 loss. I could eat again I was gaining weight 00:28:08.329 --> 00:28:11.849 back physically I was feeling better and I wasn't 00:28:11.849 --> 00:28:14.130 having any symptoms at all for quite some time 00:28:14.130 --> 00:28:18.769 like two maybe even three years and then recently 00:28:18.769 --> 00:28:22.029 some of those kind of like extra intestinal manifestations 00:28:22.029 --> 00:28:26.829 of the IBD have showed up a lot more and yeah 00:28:26.829 --> 00:28:28.990 when my doctor was like oh it might be your IBD 00:28:28.990 --> 00:28:31.009 I was like but I don't have my colon she's like 00:28:31.009 --> 00:28:33.609 yeah you still have IBD and I was like why did 00:28:33.609 --> 00:28:37.339 nobody tell me this yeah so This year has been 00:28:37.339 --> 00:28:41.160 kind of a lot of up and down with the symptoms, 00:28:41.180 --> 00:28:44.759 mostly like joint pain is kind of become the 00:28:44.759 --> 00:28:48.240 most significant one. And it really sucks because 00:28:48.240 --> 00:28:51.039 sometimes I feel like I'm 80 years old and I'm 00:28:51.039 --> 00:28:53.980 like, I'm so young to be having like all these 00:28:53.980 --> 00:28:57.359 different joint pain problems. But again, it 00:28:57.359 --> 00:28:59.400 goes back to the whole thing. Like a lot of people 00:28:59.400 --> 00:29:02.180 just think, oh, it's a stomach ache. Like, you 00:29:02.180 --> 00:29:04.809 know, you just. you have some digestion problems 00:29:04.809 --> 00:29:08.049 and that's it but it's truly like so much more 00:29:08.049 --> 00:29:11.009 than that I think joint pain is really like the 00:29:11.009 --> 00:29:14.789 main one but like I haven't had any problems 00:29:14.789 --> 00:29:17.509 with like my skin or eyes or kidneys but like 00:29:17.509 --> 00:29:19.450 that's another route that people can have some 00:29:19.450 --> 00:29:26.250 like issues with so yeah so a journey that is 00:29:26.250 --> 00:29:30.569 not approaching the end quite quite yet, right? 00:29:30.650 --> 00:29:35.829 So yeah, I see. Now reflecting back on the time 00:29:35.829 --> 00:29:38.329 that you were diagnosed, all the flaring, even 00:29:38.329 --> 00:29:42.970 the surgery, how has this disease changed you 00:29:42.970 --> 00:29:47.230 as a person? Yeah, that's a really good question. 00:29:47.349 --> 00:29:50.990 I mean... I think personally, I was always like 00:29:50.990 --> 00:29:53.490 really on the empathetic side, even as a kid, 00:29:53.490 --> 00:29:56.289 like I would see somebody going through something 00:29:56.289 --> 00:29:58.170 or even just looking a little bit sad and I would 00:29:58.170 --> 00:30:00.869 always kind of like feel that myself for them. 00:30:00.970 --> 00:30:04.710 But I think definitely has just really changed 00:30:04.710 --> 00:30:10.029 my perspective and made me even more like empathetic 00:30:10.029 --> 00:30:11.910 or understanding, I guess, especially because 00:30:11.910 --> 00:30:15.690 with things like colitis and other autoimmune 00:30:15.690 --> 00:30:18.950 kind of things. the majority of it is very much 00:30:18.950 --> 00:30:21.930 invisible and so from the outside you can't really 00:30:21.930 --> 00:30:25.009 ever see what's going on and the amount of times 00:30:25.009 --> 00:30:27.549 I've had people say like oh but you don't look 00:30:27.549 --> 00:30:30.549 sick or you look fine or even like saying that 00:30:30.549 --> 00:30:33.809 they wish that they couldn't gain weight or that 00:30:33.809 --> 00:30:36.390 they would lose weight like how I was even though 00:30:36.390 --> 00:30:38.190 like that was not my goal you know I was super 00:30:38.190 --> 00:30:40.910 unhealthy but from the outside they're just like 00:30:40.910 --> 00:30:42.789 assuming something that isn't true so I think 00:30:42.789 --> 00:30:47.359 that has really changed like I've never give 00:30:47.359 --> 00:30:50.599 someone a story until I hear their story I never 00:30:50.599 --> 00:30:53.559 try to assume because you really never know what's 00:30:53.559 --> 00:30:57.140 going on behind the scenes for anybody even like 00:30:57.140 --> 00:30:59.019 if someone's having a really bad day or someone's 00:30:59.019 --> 00:31:01.940 just like so rude to me I always try and still 00:31:01.940 --> 00:31:04.400 pause and be like okay it's probably nothing 00:31:04.400 --> 00:31:06.279 to do with me they're probably going through 00:31:06.279 --> 00:31:08.039 something on their own like everybody has their 00:31:08.039 --> 00:31:11.539 thing so I think patience and understanding is 00:31:11.539 --> 00:31:14.920 probably like the biggest one You earlier talked 00:31:14.920 --> 00:31:20.839 about a misconception in regards to IBD. So in 00:31:20.839 --> 00:31:23.700 your mind, what are some other misconceptions 00:31:23.700 --> 00:31:29.700 about colitis or IBD that are common? Yeah. So 00:31:29.700 --> 00:31:32.240 I know I touched on this one already, but just 00:31:32.240 --> 00:31:34.960 the idea that it's kind of only the stomach or 00:31:34.960 --> 00:31:40.039 like, oh, it's the same as IBS. You're only like... 00:31:40.319 --> 00:31:42.799 poor digestion or stomach aches kind of thing 00:31:42.799 --> 00:31:46.099 but it's really again whole body can affect everything 00:31:46.099 --> 00:31:50.599 every aspect that's a big one and then I think 00:31:50.599 --> 00:31:54.539 one that I keep seeing more frequently now that 00:31:54.539 --> 00:31:58.279 like social media is such a big thing is a lot 00:31:58.279 --> 00:32:03.279 of people kind of assuming or sharing that you 00:32:03.279 --> 00:32:06.380 can just cure your colitis if you just change 00:32:06.380 --> 00:32:08.680 your diet or if you just do this one quick fix 00:32:08.680 --> 00:32:11.539 or you just exercise more or you know all these 00:32:11.539 --> 00:32:14.819 things and that's not to say diet lifestyle stress 00:32:14.819 --> 00:32:17.519 all those things are very important they can 00:32:17.519 --> 00:32:20.839 help you stay in remission or opposite if it's 00:32:20.839 --> 00:32:25.480 bad they can make a flare come but the thing 00:32:25.480 --> 00:32:28.140 with colitis is it is chronic like even me I 00:32:28.140 --> 00:32:30.559 don't have my colon I still technically I still 00:32:30.559 --> 00:32:34.559 have colitis so it kind of it's one of those 00:32:34.559 --> 00:32:36.680 things where it's like People maybe are assuming 00:32:36.680 --> 00:32:39.480 that it's more in their control than it actually 00:32:39.480 --> 00:32:42.319 is. All those things can help and make a difference. 00:32:42.400 --> 00:32:45.359 But even if you're in remission for years and 00:32:45.359 --> 00:32:47.380 years and you're doing everything absolutely 00:32:47.380 --> 00:32:50.599 perfectly right, all your diet, all your exercise, 00:32:50.839 --> 00:32:53.519 you could end up in a flare -up randomly at any 00:32:53.519 --> 00:32:57.039 point. And I think that's part of the missing 00:32:57.039 --> 00:32:58.779 piece when people talk about it. They're like, 00:32:58.839 --> 00:33:01.079 oh, I healed my symptoms because I changed my 00:33:01.079 --> 00:33:04.319 diet and that's great. But you can still have 00:33:04.319 --> 00:33:07.789 a flare -up. any time, any point. So that's a 00:33:07.789 --> 00:33:10.109 big one. Like it is, it is for life, you know? 00:33:10.289 --> 00:33:13.470 And also I've seen this kind of discourse that 00:33:13.470 --> 00:33:18.849 colitis is less severe than Crohn's and you know, 00:33:18.930 --> 00:33:21.470 Crohn's is everywhere, like throat, stomach, 00:33:21.710 --> 00:33:24.049 small intestine, large intestine, mouth. So you 00:33:24.049 --> 00:33:27.069 can have a lot of problems with that, but to 00:33:27.069 --> 00:33:30.319 say that it's necessarily worse is not. always 00:33:30.319 --> 00:33:32.380 true because you can have mild Crohn's, but you 00:33:32.380 --> 00:33:34.880 could have severe colitis and you could be way 00:33:34.880 --> 00:33:37.740 more sick with severe colitis. Right. So it just 00:33:37.740 --> 00:33:39.759 really depends. Like every, everyone's different. 00:33:40.519 --> 00:33:43.940 Yeah. Yeah. So we agree then that, you know, 00:33:43.940 --> 00:33:47.779 switching to a kale smoothie diet is definitely 00:33:47.779 --> 00:33:50.819 not going to cure your colitis. Oh, I agree with 00:33:50.819 --> 00:33:55.980 you on that one. Yeah. Okay, great. So you've 00:33:55.980 --> 00:33:59.180 had great support, you know, from your mom and 00:33:59.769 --> 00:34:03.089 I'm assuming she was probably the central support 00:34:03.089 --> 00:34:08.349 person that you could rely on during your journey 00:34:08.349 --> 00:34:12.949 with IBD. But as you also kind of mentioned, 00:34:13.090 --> 00:34:16.289 a lot of people don't really know what this disease 00:34:16.289 --> 00:34:20.550 is, what this disease does. And so it can be 00:34:20.550 --> 00:34:23.190 very difficult for people that are not going 00:34:23.190 --> 00:34:24.710 through the same things that we're going through 00:34:24.710 --> 00:34:28.429 to talk about it, but also... to react appropriately 00:34:28.429 --> 00:34:31.050 in regards to us, right? Their loved ones, their 00:34:31.050 --> 00:34:34.610 friends. So what words of advice do you have 00:34:34.610 --> 00:34:42.329 for friends and family of someone with IBD? I 00:34:42.329 --> 00:34:46.849 think a really big one is to do research on your 00:34:46.849 --> 00:34:51.389 own because it can become very exhausting to 00:34:51.389 --> 00:34:55.210 continuously have to explain and re -explain. 00:34:55.869 --> 00:34:58.289 what diagnosis you have, what it is, what it 00:34:58.289 --> 00:35:01.309 means, what treatment they can do for it, what 00:35:01.309 --> 00:35:03.250 the symptoms are, all those things, right? And 00:35:03.250 --> 00:35:07.690 of course, it's okay to ask questions to your 00:35:07.690 --> 00:35:09.989 friend or family who has it to kind of gain a 00:35:09.989 --> 00:35:12.849 better understanding, but it's really nice when 00:35:12.849 --> 00:35:15.630 people kind of do a little bit of their own. 00:35:16.360 --> 00:35:18.579 research to kind of just gain a better understanding 00:35:18.579 --> 00:35:21.099 in general especially with some of those symptoms 00:35:21.099 --> 00:35:23.440 that maybe people won't be so forthcoming with 00:35:23.440 --> 00:35:26.980 then you can kind of better understand and just 00:35:26.980 --> 00:35:30.920 really like listening without judgment and being 00:35:30.920 --> 00:35:34.780 able to be okay and like be adaptable with change 00:35:34.780 --> 00:35:38.880 of plans or you know canceling plans things like 00:35:38.880 --> 00:35:43.420 that because It can seem like when you're going 00:35:43.420 --> 00:35:46.000 through a flare, like, oh, I'm the problem. Like, 00:35:46.019 --> 00:35:47.739 I'm always sick. I can't do all these things. 00:35:47.780 --> 00:35:49.840 But really, it's not like you asked to be in 00:35:49.840 --> 00:35:52.199 a flare. So if your friends and family can be 00:35:52.199 --> 00:35:54.860 like validating and supporting, like, it's totally 00:35:54.860 --> 00:35:56.940 OK. It's not your fault. Like, we can do something 00:35:56.940 --> 00:36:00.219 else or we can do it like next time. That is 00:36:00.219 --> 00:36:02.699 very helpful because when you're sick, sometimes 00:36:02.699 --> 00:36:04.679 you really don't know what you need or what you 00:36:04.679 --> 00:36:09.429 want. But just like understanding and. compassion 00:36:09.429 --> 00:36:13.010 go a really long way. It's very interesting that 00:36:13.010 --> 00:36:15.329 you mentioned doing research on your own, especially 00:36:15.329 --> 00:36:17.630 if you're someone who doesn't have the disease, 00:36:17.769 --> 00:36:21.010 but you either live with someone or you care 00:36:21.010 --> 00:36:23.210 for someone who has the disease. And if I may 00:36:23.210 --> 00:36:24.869 build on that, I think you're absolutely right. 00:36:25.280 --> 00:36:28.179 do research, but be careful to not take that 00:36:28.179 --> 00:36:30.699 research and then potentially sort of bombard 00:36:30.699 --> 00:36:33.300 the person, you know, with IBD, with what you've 00:36:33.300 --> 00:36:35.820 learned. I think it's more about do the research, 00:36:35.900 --> 00:36:39.579 but for yourself, right? So that you can somehow 00:36:39.579 --> 00:36:41.880 relate to it, you know, even though you'll never 00:36:41.880 --> 00:36:43.900 be able to sort of feel the same things that 00:36:43.900 --> 00:36:47.639 we feel, because I think there's a danger, of 00:36:47.639 --> 00:36:51.099 course, that then, you know, it can come patronizing 00:36:51.099 --> 00:36:53.619 very quickly. But I totally agree with your point 00:36:53.619 --> 00:36:57.300 that I think that's a great way to get an onboarding, 00:36:57.300 --> 00:37:01.539 you know, onto IBD and then be able to at least 00:37:01.539 --> 00:37:07.239 to some extent understand what the person that 00:37:07.239 --> 00:37:09.900 you're caring for is actually going through. 00:37:10.300 --> 00:37:12.880 Yeah, for sure. Yeah, definitely a good point. 00:37:12.940 --> 00:37:16.179 Like more research just to understand on your 00:37:16.179 --> 00:37:18.199 own, especially if they're not sharing like every 00:37:18.199 --> 00:37:19.940 single symptom they go through or all the things 00:37:19.940 --> 00:37:22.940 like that or even just. medication side effects 00:37:22.940 --> 00:37:25.099 like just so you can kind of gain a little bit 00:37:25.099 --> 00:37:27.480 of perspective but yeah not like oh my god i 00:37:27.480 --> 00:37:29.519 learned this what about this are you okay with 00:37:29.519 --> 00:37:33.639 this so you know yeah that's a good point if 00:37:33.639 --> 00:37:40.659 you could speak to yourself at age 16 on the 00:37:40.659 --> 00:37:42.559 day of your diagnosis or shortly after the diagnosis 00:37:42.559 --> 00:37:47.420 what would you tell yourself that is a you know 00:37:47.420 --> 00:37:50.960 that's a good question because there's so many 00:37:50.960 --> 00:37:53.719 things you could say I think the main thing I 00:37:53.719 --> 00:37:57.280 would say is like you're gonna get through it 00:37:57.280 --> 00:38:00.840 like you'll be okay it might seem like you're 00:38:00.840 --> 00:38:04.340 not gonna be okay especially at certain times 00:38:04.340 --> 00:38:06.940 when you're sick and you're missing out on everything 00:38:06.940 --> 00:38:08.619 and you don't feel like you're living you're 00:38:08.619 --> 00:38:10.980 just surviving but like you're gonna get through 00:38:10.980 --> 00:38:13.059 it you'll be okay you just have to keep going 00:38:13.059 --> 00:38:15.980 even if it feels like you're going nowhere just 00:38:15.980 --> 00:38:20.480 keep going and then to kind of go back to the 00:38:20.480 --> 00:38:25.300 whole relationship with your gi um just being 00:38:25.300 --> 00:38:28.159 more comfortable with being open and honest like 00:38:28.159 --> 00:38:30.940 i think that has such an emotional and mental 00:38:30.940 --> 00:38:33.320 health aspect that i could have really used when 00:38:33.320 --> 00:38:35.260 i was younger so i think that would be something 00:38:35.260 --> 00:38:38.579 that i would kind of bring up to younger me So 00:38:38.579 --> 00:38:41.440 my last question then is looking into the future. 00:38:41.480 --> 00:38:44.260 And even though I know it's a very hard one to 00:38:44.260 --> 00:38:46.659 answer, I do believe that everybody has at least 00:38:46.659 --> 00:38:50.619 some sort of hope or feeling about this. Do you 00:38:50.619 --> 00:38:53.840 think we'll see a cure for IBD during our lifetime? 00:38:54.860 --> 00:38:57.139 You know, like you said, it is hard to answer, 00:38:57.260 --> 00:39:00.960 but I really do feel hopeful that we will. There's 00:39:00.960 --> 00:39:04.159 been quite a few recent kind of discoveries about 00:39:04.159 --> 00:39:09.780 IBD. in the news and in the research world. And 00:39:09.780 --> 00:39:12.179 even now, like you'll see a new medication kind 00:39:12.179 --> 00:39:16.239 of come forward to the market. So I think the 00:39:16.239 --> 00:39:19.539 possibility is really high and it's getting higher 00:39:19.539 --> 00:39:22.559 and higher. Crohn's and colitis is really increasing 00:39:22.559 --> 00:39:27.980 in the modern world in our day and age. So I 00:39:27.980 --> 00:39:30.739 really do feel hopeful. I would honestly be more 00:39:30.739 --> 00:39:34.880 surprised if there wasn't at some point. I'm 00:39:34.880 --> 00:39:37.340 completely with you. I'm not really sure this 00:39:37.340 --> 00:39:39.800 might happen for the next, you know, five to 00:39:39.800 --> 00:39:42.760 10 years, but I do believe that, you know, we 00:39:42.760 --> 00:39:46.519 are getting closer to finding a more permanent 00:39:46.519 --> 00:39:48.599 relief for people that don't necessarily involve, 00:39:48.800 --> 00:39:52.420 you know, biologics or continuous. periods of 00:39:52.420 --> 00:39:54.480 remission and flaring and going back and forth. 00:39:54.579 --> 00:39:58.380 So I'm hopeful as well. And this is exactly how 00:39:58.380 --> 00:40:01.659 we want to end with hope and sort of a positive 00:40:01.659 --> 00:40:04.219 outlook for the future, not just for us, but 00:40:04.219 --> 00:40:07.380 also everybody else who is facing IBD. So Hannah, 00:40:07.460 --> 00:40:09.420 this was an absolutely fascinating conversation. 00:40:09.500 --> 00:40:12.460 And I want to thank you very, very much for being 00:40:12.460 --> 00:40:16.380 here today and talking to me. I think the world 00:40:16.380 --> 00:40:20.179 needs... more IBD warriors like you. And I'm 00:40:20.179 --> 00:40:22.179 very happy that you're so outspoken about it. 00:40:23.389 --> 00:40:26.070 I encourage you to continue doing that because 00:40:26.070 --> 00:40:29.989 I do believe that we are helping other people 00:40:29.989 --> 00:40:32.989 who have been recently diagnosed or who are living 00:40:32.989 --> 00:40:35.690 with this disease for a long time to get through 00:40:35.690 --> 00:40:38.710 tougher times or periods where they feel isolated 00:40:38.710 --> 00:40:42.070 or embarrassed. So I think what we're doing is 00:40:42.070 --> 00:40:44.789 very, very important and we need to keep doing 00:40:44.789 --> 00:40:48.730 this. So thank you so much for what you do. Yeah, 00:40:48.869 --> 00:40:52.420 thank you so much. And I really appreciate you 00:40:52.420 --> 00:40:55.039 being here. And I'm going to sign off then with 00:40:55.039 --> 00:40:57.000 saying I wish you the best of luck. And I hope 00:40:57.000 --> 00:41:00.260 that you are able to find a way or remedies for 00:41:00.260 --> 00:41:03.480 your current symptoms. And other than that, you 00:41:03.480 --> 00:41:07.179 know, keep enjoying that life with IBD and all 00:41:07.179 --> 00:41:09.659 the best. Thank you so much. Thanks for having 00:41:09.659 --> 00:41:13.639 me. It was great. Thank you as well. That's it 00:41:13.639 --> 00:41:16.119 for today's episode of Talking Sh**, presented 00:41:16.119 --> 00:41:19.519 by Colitis Unfiltered. I'm Frank Klebring. And 00:41:19.519 --> 00:41:22.559 if this hit home or hit your gut, do us a favor. 00:41:22.739 --> 00:41:25.679 Subscribe to the show and follow us at Kaleidos 00:41:25.679 --> 00:41:29.159 Unfiltered on YouTube, Substack, Instagram, Threads, 00:41:29.159 --> 00:41:32.360 TikTok and Reddit. We'll see you soon for more 00:41:32.360 --> 00:41:34.179 inspiring stories from the bathroom floor.