WEBVTT 00:00:02.979 --> 00:00:05.860 i think about it all the time we've been conditioned 00:00:05.860 --> 00:00:08.400 to think about it that is the pattern is even 00:00:08.400 --> 00:00:11.160 when you feel good you know it's not gonna last 00:00:11.160 --> 00:00:13.839 you know that next medication is gonna fail you 00:00:13.839 --> 00:00:16.940 know that even if you eat a bad meal and your 00:00:16.940 --> 00:00:18.660 body doesn't like it you're like oh my goodness 00:00:18.660 --> 00:00:21.100 am i flaring what have i done to myself why did 00:00:21.100 --> 00:00:23.100 i do that right and blame it on all the wrong 00:00:23.100 --> 00:00:27.500 things and It is a conditioned response to live 00:00:27.500 --> 00:00:31.179 in fear of the next flare, even when you've been 00:00:31.179 --> 00:00:33.979 living in remission for a long period of time. 00:00:34.240 --> 00:00:37.020 This is Kelly, who got diagnosed with ulcerative 00:00:37.020 --> 00:00:40.840 colitis at age 22 in Amarillo, Texas. Like many 00:00:40.840 --> 00:00:43.820 IBD patients, Kelly lived a long rollercoaster 00:00:43.820 --> 00:00:46.820 experience of failing treatments until she found 00:00:46.820 --> 00:00:49.939 one that finally pulled her into remission. Kelly 00:00:49.939 --> 00:00:52.320 wasn't just busy navigating colitis in her early 00:00:52.320 --> 00:00:55.820 20s. She also juggled marriage and motherhood. 00:00:56.200 --> 00:00:59.219 And today, she tells us all about how she managed 00:00:59.219 --> 00:01:01.700 to fight her disease while trying to hold on 00:01:01.700 --> 00:01:05.120 to a normal life. This is Talking S***, presented 00:01:05.120 --> 00:01:08.019 by Colitis Unfiltered. My name is Frank Tabering, 00:01:08.040 --> 00:01:11.920 and Kelly, welcome to the show. I am so happy 00:01:11.920 --> 00:01:14.299 to be here. Thanks for having me. Thank you so 00:01:14.299 --> 00:01:16.980 much for taking your time. to talk to me a little 00:01:16.980 --> 00:01:19.079 bit about your IBD journey. So I'd say let's 00:01:19.079 --> 00:01:21.180 get straight into it. I want to start off by 00:01:21.180 --> 00:01:23.680 setting the context, right, so that our audience 00:01:23.680 --> 00:01:25.260 kind of knows your story a little bit and then 00:01:25.260 --> 00:01:27.840 we'll dive a little bit deeper. Tell me a little 00:01:27.840 --> 00:01:31.420 bit about your journey from diagnosis to where 00:01:31.420 --> 00:01:35.640 you are today. It has been such a roller coaster, 00:01:35.819 --> 00:01:39.239 such a roller coaster. Yeah, like you mentioned, 00:01:39.340 --> 00:01:42.260 I was 22 years old. So just getting used to life, 00:01:42.319 --> 00:01:47.939 newly married. I had a one -year -old son and 00:01:47.939 --> 00:01:52.439 I had left him home for the first time ever. 00:01:52.500 --> 00:01:58.379 And I was off at this conference and I had this... 00:01:58.900 --> 00:02:03.620 insane level of excruciating pain. It just wore 00:02:03.620 --> 00:02:06.640 me out, just brought me to the floor. And that 00:02:06.640 --> 00:02:10.650 was terrifying. What I hadn't been telling people 00:02:10.650 --> 00:02:12.930 for months and months and months is that I was 00:02:12.930 --> 00:02:17.669 rectally bleeding and my 22 -year -old self was 00:02:17.669 --> 00:02:20.610 humiliated and embarrassed by that. And I was 00:02:20.610 --> 00:02:23.289 just really hoping and praying that it would 00:02:23.289 --> 00:02:27.610 just go away. That's how naive I was at the time 00:02:27.610 --> 00:02:31.090 and just hoping that it would disappear. But 00:02:31.090 --> 00:02:33.909 then that pain hit and it broke me, ended up 00:02:33.909 --> 00:02:36.610 going to the emergency room. The emergency room 00:02:36.610 --> 00:02:40.150 nurses were convinced that I must have had like 00:02:40.150 --> 00:02:43.830 some STD or something, which was so wrong and 00:02:43.830 --> 00:02:47.569 so humiliating for them to approach my symptoms 00:02:47.569 --> 00:02:52.449 in that way. Just, it's just appalling when I 00:02:52.449 --> 00:02:55.370 look back at it. Sent me to go see my OBGYN. 00:02:56.030 --> 00:02:58.789 He's the one who referred me to a gastroenterologist. 00:03:00.319 --> 00:03:03.819 So, yeah, from there, then had the colonoscopy, 00:03:03.960 --> 00:03:06.659 talked about the bleeding that I was hiding and 00:03:06.659 --> 00:03:08.539 couldn't hide any longer, the pain that kicked 00:03:08.539 --> 00:03:12.180 in. And then first colonoscopy, I was diagnosed 00:03:12.180 --> 00:03:15.659 with moderate to severe ulcerative colitis. So 00:03:15.659 --> 00:03:19.860 that was the jumping point from there. You often 00:03:19.860 --> 00:03:24.020 hear about misdiagnosis and doctors really taking 00:03:24.020 --> 00:03:26.919 a lot of time to figure out that it is IBD. And 00:03:26.919 --> 00:03:29.840 STD, that's a first for me. I got to tell you. 00:03:29.900 --> 00:03:35.360 It was so embarrassing and just devaluing, right, 00:03:35.520 --> 00:03:40.979 to be addressed in that way. Yeah, yeah. But 00:03:40.979 --> 00:03:43.620 luckily you found a specialist to diagnose you 00:03:43.620 --> 00:03:46.300 properly, ulcerative colitis. So going back. 00:03:46.840 --> 00:03:50.240 At age 22, I mean, you've sort of completed your 00:03:50.240 --> 00:03:52.560 teenage years, but you were still young. Hearing 00:03:52.560 --> 00:03:54.919 the words ulcerative colitis come out of somebody 00:03:54.919 --> 00:03:57.439 else's mouth, did that mean anything to you back 00:03:57.439 --> 00:04:00.000 then? Have you heard about it? And also, how 00:04:00.000 --> 00:04:03.460 did you react mentally to getting these news? 00:04:03.680 --> 00:04:06.680 And did your doctor actually fill you on on what 00:04:06.680 --> 00:04:09.419 this disease is and what that means for you, 00:04:09.500 --> 00:04:12.259 for your life, for the future? As best as I can 00:04:12.259 --> 00:04:14.000 remember, you know, it's been a little while, 00:04:14.039 --> 00:04:17.500 but no, I had never even heard those words before. 00:04:17.600 --> 00:04:20.439 I didn't know anything about inflammatory bowel 00:04:20.439 --> 00:04:25.589 disease. I remember just feeling. a little lost, 00:04:25.670 --> 00:04:28.829 right? I had been experiencing these symptoms. 00:04:28.949 --> 00:04:32.170 So much of my life had changed, right? New marriage, 00:04:32.250 --> 00:04:34.529 new baby, all of these things. Was it connected 00:04:34.529 --> 00:04:37.589 to my pregnancy? I didn't know if that was something 00:04:37.589 --> 00:04:43.250 to do with it. And I just didn't know anything. 00:04:43.569 --> 00:04:47.050 No, I don't feel like my physician really gave 00:04:47.050 --> 00:04:49.589 me a good understanding of what it was, what 00:04:49.589 --> 00:04:54.470 to expect, what this meant for my future. And 00:04:54.470 --> 00:04:56.930 it was a lot of like asking a lot of questions 00:04:56.930 --> 00:04:59.649 during follow -up appointments, trying to piece 00:04:59.649 --> 00:05:03.189 it together to figure out what it really meant 00:05:03.189 --> 00:05:07.629 over time. So how did you then navigate life 00:05:07.629 --> 00:05:10.689 after diagnosis, both physically and mentally? 00:05:10.850 --> 00:05:13.550 And maybe also take us through the different 00:05:13.550 --> 00:05:18.610 treatments that your doctor puts you on to manage 00:05:18.610 --> 00:05:21.939 or try to manage your colitis. Right. We started 00:05:21.939 --> 00:05:24.740 with Azacol, so misalamine at the very beginning. 00:05:25.959 --> 00:05:30.819 I physically and mentally, I cried a lot. It 00:05:30.819 --> 00:05:35.860 was overwhelming. And there were a whirlwind 00:05:35.860 --> 00:05:38.519 of emotions over the first couple of years throughout 00:05:38.519 --> 00:05:40.519 the whole thing, really. I think there was a 00:05:40.519 --> 00:05:43.800 lot of fear, a lot of fear of the unknown. And 00:05:43.800 --> 00:05:50.800 I hoped that, okay, well, I'm going to take this 00:05:50.800 --> 00:05:53.259 medication and the medication is going to help. 00:05:53.319 --> 00:05:55.819 And that's just what I'm going to have to do. 00:05:55.879 --> 00:05:58.259 And so that was the first approach was kind of 00:05:58.259 --> 00:06:01.379 trusting the doctors to give me the answers because 00:06:01.379 --> 00:06:05.579 I didn't know. And, you know, so then. I was 00:06:05.579 --> 00:06:07.959 taking the Azacol and then that wasn't enough. 00:06:08.199 --> 00:06:10.240 Symptoms would keep coming. So then we'd have 00:06:10.240 --> 00:06:13.360 to increase the dosage and increase the dosage. 00:06:13.480 --> 00:06:16.680 And that was a struggle for me to just continuing 00:06:16.680 --> 00:06:19.720 to put more and more and more medication in my 00:06:19.720 --> 00:06:24.459 body. And it wasn't. quite working. That was 00:06:24.459 --> 00:06:26.339 really hard to wrap my head around. How do I 00:06:26.339 --> 00:06:29.819 trust that this is what I'm going to be relying 00:06:29.819 --> 00:06:32.420 on, but then it's not working. And so wrapping 00:06:32.420 --> 00:06:36.939 your head around those failed medications kind 00:06:36.939 --> 00:06:40.740 of, it doesn't make me not trust the physician, 00:06:40.839 --> 00:06:43.199 but the process, I wasn't trusting the process 00:06:43.199 --> 00:06:48.129 of how am I supposed to heal. I have been on 00:06:48.129 --> 00:06:51.389 so many different medications. I've done, I'm 00:06:51.389 --> 00:06:53.529 probably forgetting some, but all the different 00:06:53.529 --> 00:06:57.509 versions of mesalamine, all of the, the symphony 00:06:57.509 --> 00:07:01.769 and Humira and Antivio, and I'm on Zelljans now 00:07:01.769 --> 00:07:05.990 with combination therapy with Aprizo, which is 00:07:05.990 --> 00:07:09.709 a version of mesalamine. And I know I've done 00:07:09.709 --> 00:07:12.829 plenty other multiple rounds of prednisone, steroids, 00:07:13.230 --> 00:07:15.490 Euceris when I didn't want to take prednisone. 00:07:16.139 --> 00:07:18.019 And I'm sure there's more that I am forgetting. 00:07:18.300 --> 00:07:21.660 But it has been a constant rollercoaster of failed 00:07:21.660 --> 00:07:24.279 medication and increasing the dosage until you 00:07:24.279 --> 00:07:26.860 max out at that dose. And then you have to start 00:07:26.860 --> 00:07:30.180 over with something new. And all the time that 00:07:30.180 --> 00:07:32.019 it takes to even see if that medication is going 00:07:32.019 --> 00:07:35.319 to work in the first place. It's rough. Absolutely. 00:07:35.480 --> 00:07:37.660 Azacol, yeah, I know it very well. Even Euceris, 00:07:37.660 --> 00:07:39.319 that's something that you don't always hear, 00:07:39.439 --> 00:07:42.120 but I had a small relapse once a couple of years 00:07:42.120 --> 00:07:44.740 after I achieved remission and Euceris helped 00:07:44.740 --> 00:07:48.720 me at that stage. But wow, yeah, so you've sort 00:07:48.720 --> 00:07:52.279 of really done the A to Z almost of the different 00:07:52.279 --> 00:07:54.860 tiers of medications that we typically see in 00:07:54.860 --> 00:08:01.220 IBD treatments. So you were newly married, you 00:08:01.220 --> 00:08:05.139 had a child. How did you manage that part of 00:08:05.139 --> 00:08:07.939 your life while at the same time navigating the 00:08:07.939 --> 00:08:11.000 disease, going through flaring, trying these 00:08:11.000 --> 00:08:13.720 medications? I mean, dealing with diabetes is 00:08:13.720 --> 00:08:15.680 one thing that takes a lot of energy. And I always 00:08:15.680 --> 00:08:17.279 say, you know, when we're flaring, that's about 00:08:17.279 --> 00:08:21.360 all the energy we have, right? But great. You 00:08:21.360 --> 00:08:23.699 have a husband. I'm sure he was supportive. But 00:08:23.699 --> 00:08:27.060 having a child at such a young age, how did you 00:08:27.060 --> 00:08:29.519 manage that? How did you navigate life as a mother? 00:08:31.610 --> 00:08:34.590 That is such a big question. Yes, I was blessed 00:08:34.590 --> 00:08:37.730 to have a husband who could provide. And, you 00:08:37.730 --> 00:08:39.649 know, so I was lucky enough to stay at home with 00:08:39.649 --> 00:08:42.830 my son. I tried over time to do a couple things 00:08:42.830 --> 00:08:46.210 to try to contribute to the home and finances 00:08:46.210 --> 00:08:52.110 and things. But I was blessed to be able to stay 00:08:52.110 --> 00:08:55.549 at home and work on my health and being a mother. 00:08:56.169 --> 00:09:03.580 I felt often like a disappointment. to to my 00:09:03.580 --> 00:09:09.879 family um my son was young and so I could be 00:09:09.879 --> 00:09:12.799 on the floor and play with him and and that was 00:09:12.799 --> 00:09:15.179 a check mark a good thing you know as he got 00:09:15.179 --> 00:09:19.500 older then It got harder with wanting to go do 00:09:19.500 --> 00:09:23.179 things and go to events and go outside of the 00:09:23.179 --> 00:09:26.679 house and be around other people and all of the 00:09:26.679 --> 00:09:29.759 social opportunities that mothers can have to 00:09:29.759 --> 00:09:32.919 connect. But I was overwhelmed and intimidated 00:09:32.919 --> 00:09:35.919 by some of those things. And so there was definitely 00:09:35.919 --> 00:09:41.149 a mom guilt for limited. bad experiences with 00:09:41.149 --> 00:09:44.970 my son or, oh my goodness, the times of being 00:09:44.970 --> 00:09:46.929 out somewhere and then having to rush to the 00:09:46.929 --> 00:09:49.070 bathroom, the urgency, and then you have to haul 00:09:49.070 --> 00:09:52.429 your kid with you and try to make it. Just the 00:09:52.429 --> 00:09:55.929 stress level of trying to manage was so high 00:09:55.929 --> 00:09:59.250 that it was very easy to avoid situations like 00:09:59.250 --> 00:10:01.509 that. I have a great relationship with my son. 00:10:01.629 --> 00:10:07.019 I was with him, right? In the long term, It was 00:10:07.019 --> 00:10:09.080 fine. He didn't know what he was missing out 00:10:09.080 --> 00:10:12.120 on. You know, it was just my guilt for not being 00:10:12.120 --> 00:10:15.659 able to be the version of mom that I wanted to 00:10:15.659 --> 00:10:19.019 be or thought I needed to be. But he got lots 00:10:19.019 --> 00:10:21.080 of attention and care and we were at home together 00:10:21.080 --> 00:10:25.399 plenty. And so he was a driver for me to just 00:10:25.399 --> 00:10:29.159 keep going. Luckily, I had him and it was a motivation 00:10:29.159 --> 00:10:32.279 to. Keep waking up every morning and keep trying 00:10:32.279 --> 00:10:34.179 and keep trying to improve my health and those 00:10:34.179 --> 00:10:38.159 sorts of things. So that mom role really saved 00:10:38.159 --> 00:10:42.000 me in a lot of ways, honestly. So that's very 00:10:42.000 --> 00:10:45.240 interesting because lots of times when we're 00:10:45.240 --> 00:10:48.419 flaring, we just kind of want to be by ourselves, 00:10:48.700 --> 00:10:52.580 right? And this ties to this isolation that a 00:10:52.580 --> 00:10:54.379 lot of us experience when we're flaring because 00:10:54.379 --> 00:10:57.059 the pain is so strong that this is all we want 00:10:57.059 --> 00:11:03.179 to deal with. Did you ever feel this desire to 00:11:03.179 --> 00:11:06.559 basically be by yourself for an extended period 00:11:06.559 --> 00:11:09.220 of time, to basically suffer in silence? Because 00:11:09.220 --> 00:11:11.320 yes, you had your husband as a support system, 00:11:11.399 --> 00:11:14.519 but then again, you had a son who was very young. 00:11:15.019 --> 00:11:18.600 And so even though you embraced this motherhood 00:11:18.600 --> 00:11:20.679 at that stage, as you just said, did you have 00:11:20.679 --> 00:11:22.340 those moments where you just thought, man, I 00:11:22.340 --> 00:11:24.860 just wish I could suffer in silence, and I really 00:11:24.860 --> 00:11:28.250 don't want to be around anybody? I would say 00:11:28.250 --> 00:11:32.009 it became a part of how I cope with life now. 00:11:32.129 --> 00:11:36.570 I still have a tendency to just want to shelter 00:11:36.570 --> 00:11:40.230 and isolate when big overwhelming things happen 00:11:40.230 --> 00:11:43.289 because it's a pattern. It's a learned pattern 00:11:43.289 --> 00:11:47.870 over time of whether it's fueled by, I don't 00:11:47.870 --> 00:11:50.509 want people to see me suffering or I don't want 00:11:50.509 --> 00:11:53.629 to be a burden on other people. I think that's 00:11:53.629 --> 00:11:56.940 some of that underlying. mental narrative behind 00:11:56.940 --> 00:12:00.360 that isolation, also embarrassment of the fact 00:12:00.360 --> 00:12:02.940 that I'm feeling what I'm feeling, but just that 00:12:02.940 --> 00:12:05.759 external stimulation. My body is taking all of 00:12:05.759 --> 00:12:09.580 my focus, all of my energy. One more person that 00:12:09.580 --> 00:12:12.120 I need to focus on outside of myself sometimes 00:12:12.120 --> 00:12:16.299 is just too much. So yes, absolutely. Can I just 00:12:16.299 --> 00:12:19.919 lay in my bed in pain, in tears, being angry 00:12:19.919 --> 00:12:21.960 with the fact that I feel this way right now? 00:12:22.340 --> 00:12:26.490 100%. That definitely happened. Yes. So you mentioned 00:12:26.490 --> 00:12:31.450 your body. And my next question is then, how 00:12:31.450 --> 00:12:34.529 did you keep hope alive when you knew that your 00:12:34.529 --> 00:12:37.610 body was basically working overtime against you, 00:12:37.690 --> 00:12:40.610 right? As you were navigating different treatments 00:12:40.610 --> 00:12:45.669 and setbacks? Yeah. And it's this betrayal, right? 00:12:45.730 --> 00:12:48.809 When your own body betrays you, and then you 00:12:48.809 --> 00:12:51.730 can't even trust your own body to keep up with 00:12:51.730 --> 00:13:00.139 you. As a person, I really struggled. Mentally, 00:13:00.139 --> 00:13:03.240 I really struggled. I went through some very 00:13:03.240 --> 00:13:08.080 dark and angry and bitter times because of the 00:13:08.080 --> 00:13:10.639 comparisons I saw between me and all the normal 00:13:10.639 --> 00:13:16.240 people. And what was the question? I'm so distracted 00:13:16.240 --> 00:13:18.240 by thinking about those times. What did you ask? 00:13:18.500 --> 00:13:21.919 I just would like to know. what you did or what 00:13:21.919 --> 00:13:24.120 your thought process was to keep this hope alive 00:13:24.120 --> 00:13:27.159 when you knew that your body was you know yeah 00:13:27.159 --> 00:13:30.279 really betraying you right yes i don't think 00:13:30.279 --> 00:13:33.039 i had hope for a very very long time though there 00:13:33.039 --> 00:13:35.100 was no keeping hope alive it was just keeping 00:13:35.100 --> 00:13:40.100 me alive was was the focus for a long time again 00:13:40.100 --> 00:13:42.659 i had my son so there was a reason to continue 00:13:42.659 --> 00:13:48.889 to exist and and i How did I keep hope alive? 00:13:49.210 --> 00:13:54.250 I think it became more of a, how do I just keep 00:13:54.250 --> 00:14:00.649 functioning in a way that can just keep up with 00:14:00.649 --> 00:14:03.870 life? I didn't have hope for anything better. 00:14:04.009 --> 00:14:07.809 I didn't have hope for healing. I saw my UC journey 00:14:07.809 --> 00:14:10.909 as, I'm just going to continue going through 00:14:10.909 --> 00:14:13.980 these. patterns and these cycles, and I'm just 00:14:13.980 --> 00:14:17.279 gonna have to deal with it. That was how I felt 00:14:17.279 --> 00:14:19.460 for the longest time. Just accept your new normal, 00:14:19.580 --> 00:14:23.210 right? It really... I had to hit some really, 00:14:23.269 --> 00:14:26.850 really dark and low points before I got to the 00:14:26.850 --> 00:14:28.970 space where I was like, I can't do this. I can't 00:14:28.970 --> 00:14:31.669 be this way anymore. I have to make changes. 00:14:31.750 --> 00:14:33.769 I have to figure out how to take care of my health. 00:14:34.070 --> 00:14:37.210 I need to figure out what I can do to somehow 00:14:37.210 --> 00:14:40.850 generate my own hope, right? How to find that. 00:14:41.070 --> 00:14:44.590 And so really over time, I started learning more 00:14:44.590 --> 00:14:49.090 about... taking care of my health. And I took 00:14:49.090 --> 00:14:51.990 a nutrition course. I was trying to go back to 00:14:51.990 --> 00:14:54.250 school, trying to do something with myself. I 00:14:54.250 --> 00:14:57.690 wanted to feel valuable in society because I 00:14:57.690 --> 00:15:00.230 didn't. And so I was going back to school. I 00:15:00.230 --> 00:15:03.870 took a nutrition course just to learn about taking 00:15:03.870 --> 00:15:06.450 better care of my health and fell in love. I 00:15:06.450 --> 00:15:11.000 was fascinated by that. Another core memory, 00:15:11.279 --> 00:15:14.440 I had gained a ton of weight on prednisone and 00:15:14.440 --> 00:15:19.299 I just, I hated myself after that. And I just 00:15:19.299 --> 00:15:20.940 really struggled mentally. And so I was like, 00:15:21.000 --> 00:15:23.940 well, maybe exercise. Maybe I can lose the weight. 00:15:23.960 --> 00:15:28.700 Maybe I'll start exercising. And I kind of felt 00:15:28.700 --> 00:15:31.600 like maybe that was going to be the hope. If 00:15:31.600 --> 00:15:33.919 I could find a way for my body to get a little 00:15:33.919 --> 00:15:38.169 stronger, then maybe that would... give me a 00:15:38.169 --> 00:15:42.879 better capacity to live life and... I remember 00:15:42.879 --> 00:15:45.320 I was like, okay, well, the only way I know how 00:15:45.320 --> 00:15:47.220 to exercise is to go running, right? I think 00:15:47.220 --> 00:15:49.240 that's like, that's how you exercise is you go 00:15:49.240 --> 00:15:51.740 running. And, and so I was like, I'm going to 00:15:51.740 --> 00:15:54.919 run from one mailbox to the next mailbox. Like 00:15:54.919 --> 00:15:57.480 that was my goal for like a week, just one mailbox 00:15:57.480 --> 00:15:59.840 to next, just get outside. I mean, you can't 00:15:59.840 --> 00:16:01.779 go that far anyway, when you're flaring anyway. 00:16:02.059 --> 00:16:04.340 And so just get outside and go from one mailbox 00:16:04.340 --> 00:16:06.240 to the next. And then I could go to, I could 00:16:06.240 --> 00:16:08.740 run from one mailbox to two mailboxes and then 00:16:08.740 --> 00:16:12.460 three. And so it was slowly like, That started 00:16:12.460 --> 00:16:17.379 sparking something within me of like, oh, I can 00:16:17.379 --> 00:16:21.120 achieve little goals and I can take care of myself 00:16:21.120 --> 00:16:24.220 and and grow in that way. And I still hate running. 00:16:24.259 --> 00:16:26.759 I can run past a couple of mailboxes now, but 00:16:26.759 --> 00:16:30.759 eventually, eventually worked into like group 00:16:30.759 --> 00:16:34.500 exercise classes. And I just love that. And so 00:16:34.500 --> 00:16:38.019 physical activity was really transformative to. 00:16:38.889 --> 00:16:43.210 my sense of ability to do something, you know, 00:16:43.230 --> 00:16:47.210 and that grew over time, definitely easier said 00:16:47.210 --> 00:16:50.570 than done. But I think that was a turning point 00:16:50.570 --> 00:16:53.149 in my life of just desperately needing something 00:16:53.149 --> 00:16:55.490 to change and trying to do something very, very 00:16:55.490 --> 00:16:58.590 small gave me some hope, achieving those little 00:16:58.590 --> 00:17:01.899 things afterwards. Yeah. Yes, so it's not just 00:17:01.899 --> 00:17:05.500 treatments, but lifestyle changes as well, at 00:17:05.500 --> 00:17:07.819 least to help with sort of like the mental load 00:17:07.819 --> 00:17:10.619 that you have sitting on your shoulders. So that's 00:17:10.619 --> 00:17:14.799 really great. Now, jumping to today, how are 00:17:14.799 --> 00:17:21.069 you feeling? I hesitate to answer this question 00:17:21.069 --> 00:17:23.849 because I used to be so resentful against the 00:17:23.849 --> 00:17:27.009 people who were living well. I'd be like, oh, 00:17:27.150 --> 00:17:29.369 yeah, that's not real. Or they must have really 00:17:29.369 --> 00:17:32.789 mild conditions. Or they're just in a short -term 00:17:32.789 --> 00:17:35.369 phase where it's going well. That doesn't exist. 00:17:35.750 --> 00:17:38.349 And so the fact that I can literally say, man, 00:17:38.390 --> 00:17:41.170 I am healthier than I've ever been. I like myself 00:17:41.170 --> 00:17:43.990 in a way that I haven't before. I feel like I'm 00:17:43.990 --> 00:17:46.309 doing something with my life that's meaningful. 00:17:46.769 --> 00:17:50.819 And I've had opportunities. I do competitive 00:17:50.819 --> 00:17:58.900 jujitsu. I fight. I am so much better. And my 00:17:58.900 --> 00:18:01.220 UC has been in remission for a handful of years. 00:18:01.299 --> 00:18:03.400 And I'm constantly paying attention to making 00:18:03.400 --> 00:18:07.859 sure I keep it that way. And it's a transformation 00:18:07.859 --> 00:18:13.380 that I get to live now through so much hell and 00:18:13.380 --> 00:18:17.589 so much work and effort. But I'm great. And I 00:18:17.589 --> 00:18:22.250 know what a luxury that is. I know how valuable 00:18:22.250 --> 00:18:26.029 that is. I have been at the worst where I'm weak 00:18:26.029 --> 00:18:30.650 and useless and just broken. And so even just 00:18:30.650 --> 00:18:39.589 feeling happy is what a blessing. And you just 00:18:39.589 --> 00:18:41.369 said it, you've been in remission for a couple 00:18:41.369 --> 00:18:43.890 of years. We all know that remission is not a 00:18:43.890 --> 00:18:46.930 cure. So we definitely don't take it for granted. 00:18:46.990 --> 00:18:49.009 We hope that it's going to last forever. But 00:18:49.009 --> 00:18:53.470 how do you deal with, and maybe you don't, but 00:18:53.470 --> 00:18:55.630 I think most of IBDers, they kind of do. How 00:18:55.630 --> 00:18:58.250 do you deal with this fear that your remission 00:18:58.250 --> 00:19:01.089 time might be limited, that the next flare could 00:19:01.089 --> 00:19:04.170 just be around the corner? Is that something 00:19:04.170 --> 00:19:06.029 that you think about? And then when you do think 00:19:06.029 --> 00:19:08.460 about it, how do you handle it? I think about 00:19:08.460 --> 00:19:11.160 it all the time. We've been conditioned to think 00:19:11.160 --> 00:19:13.500 about it. That is the pattern, is even when you 00:19:13.500 --> 00:19:16.140 feel good, you know it's not going to last. You 00:19:16.140 --> 00:19:18.559 know that next medication is going to fail. You 00:19:18.559 --> 00:19:21.640 know that even if you eat a bad meal and your 00:19:21.640 --> 00:19:23.380 body doesn't like it, you're like, oh my goodness, 00:19:23.440 --> 00:19:25.680 am I flaring? What have I done to myself? Why 00:19:25.680 --> 00:19:27.619 did I do that, right? And blame it on all the 00:19:27.619 --> 00:19:31.849 wrong things. It is a conditioned response to 00:19:31.849 --> 00:19:35.730 live in fear of the next flare, even when you've 00:19:35.730 --> 00:19:38.390 been living in remission for a long period of 00:19:38.390 --> 00:19:41.269 time. I think about it all the time. I still 00:19:41.269 --> 00:19:45.829 get nervous. I genuinely have learned to pay 00:19:45.829 --> 00:19:48.970 really close attention to my body and kind of 00:19:48.970 --> 00:19:55.400 the natural signals that it warns me of. You 00:19:55.400 --> 00:19:57.799 know, something will shift or something will 00:19:57.799 --> 00:19:59.960 feel off. I can feel inflammation rising in my 00:19:59.960 --> 00:20:03.019 body and the panic. I need to make sure that 00:20:03.019 --> 00:20:06.259 this is my priority. I need to reset my life, 00:20:06.299 --> 00:20:10.200 make sure that I'm stable. I could just keep 00:20:10.200 --> 00:20:14.079 spinning on that topic. But that fear is so real. 00:20:14.460 --> 00:20:18.799 It will never go away. And how do I deal with 00:20:18.799 --> 00:20:22.619 it? I pay attention to that fear on a daily basis. 00:20:22.720 --> 00:20:27.140 And I make active choices to acknowledge that 00:20:27.140 --> 00:20:30.880 fear and make decisions on how I live my life 00:20:30.880 --> 00:20:37.799 to prevent future flares. I will also say that 00:20:37.799 --> 00:20:43.220 I've been doing this long enough to where there 00:20:43.220 --> 00:20:46.059 is a new belief in me that a flare is temporary. 00:20:48.190 --> 00:20:51.029 I think that's a helpful thing too after you've 00:20:51.029 --> 00:20:54.849 gone through it long enough that at least understanding, 00:20:55.029 --> 00:20:57.329 wow, my body is really overwhelmed right now. 00:20:57.470 --> 00:20:59.670 Inflammation's going crazy, right? Something 00:20:59.670 --> 00:21:06.109 needs to shift, but it can. And there is a down 00:21:06.109 --> 00:21:10.690 after the height of intensity of disease activity. 00:21:11.069 --> 00:21:13.410 So I think that helps too to lessen the fear 00:21:13.410 --> 00:21:15.829 just a little bit when you start to believe that 00:21:16.650 --> 00:21:20.549 flares can be temporary. And it's perfectly fine 00:21:20.549 --> 00:21:24.849 to be fearful. I always say that we are not oversensitive. 00:21:24.930 --> 00:21:27.289 We are not over emotional about our disease. 00:21:27.549 --> 00:21:29.950 We live through this hell. There's a reason why 00:21:29.950 --> 00:21:32.210 we have this fear. And I don't think that we 00:21:32.210 --> 00:21:34.029 should apologize for this fear either, right? 00:21:34.230 --> 00:21:36.109 Even when we're in remission, and it doesn't 00:21:36.109 --> 00:21:37.630 matter if we're in remission five years or 10 00:21:37.630 --> 00:21:41.410 years, because we do know that remission could 00:21:41.410 --> 00:21:45.740 end just like that, right? So I actually I'm 00:21:45.740 --> 00:21:47.680 one of these people that say like we should sort 00:21:47.680 --> 00:21:49.720 of try and learn to almost embrace this fear 00:21:49.720 --> 00:21:52.099 because yes, it keeps us in check, you know, 00:21:52.099 --> 00:21:54.119 and like you just mentioned, you know, it brings 00:21:54.119 --> 00:21:56.339 about changes in your lifestyle, changes for 00:21:56.339 --> 00:21:59.039 your body, lifestyle changes for your mental 00:21:59.039 --> 00:22:04.579 state. So if you look back now, this entire journey 00:22:04.579 --> 00:22:08.279 from age 22 until now, in what ways do you think 00:22:08.279 --> 00:22:12.220 that colitis has changed you as a person? So 00:22:12.220 --> 00:22:14.900 many ways. There's a positive and a negative 00:22:14.900 --> 00:22:17.140 answer to that. I'll start with the negative 00:22:17.140 --> 00:22:19.059 because ending on positive is always better, 00:22:19.140 --> 00:22:23.539 but it was trauma. It's a real life trauma, right? 00:22:23.680 --> 00:22:27.519 And so mentally and emotionally, it changes the 00:22:27.519 --> 00:22:29.960 way that you see yourself and your own self -concept. 00:22:30.259 --> 00:22:36.740 It changes. your view on life and priorities 00:22:36.740 --> 00:22:40.579 and values, there's a lot of grief and loss associated. 00:22:40.900 --> 00:22:47.759 So it has definitely added that need for healing 00:22:47.759 --> 00:22:53.640 in my life. At the same time, man, I feel like 00:22:53.640 --> 00:22:56.539 I have a level of compassion for other people 00:22:56.539 --> 00:22:58.819 that I probably would never have had before. 00:23:03.880 --> 00:23:07.140 that, like, private hidden hurt within others 00:23:07.140 --> 00:23:11.200 that everybody carries. And I'm grateful for 00:23:11.200 --> 00:23:13.400 that, right? It gives opportunities for deep 00:23:13.400 --> 00:23:16.480 and meaningful connection with others, which 00:23:16.480 --> 00:23:21.220 is fueling and healing. But it's also forced 00:23:21.220 --> 00:23:25.329 me to become a better version of myself, right? 00:23:25.430 --> 00:23:28.410 It's forced me to learn a lot, right? I've learned 00:23:28.410 --> 00:23:32.869 and gained so many things and I've had experiences 00:23:32.869 --> 00:23:36.009 that have forced me to self -reflect in different 00:23:36.009 --> 00:23:39.670 ways and take care of myself in different ways 00:23:39.670 --> 00:23:44.029 and learn about, I mean, it changes everything. 00:23:44.150 --> 00:23:47.190 Your relationships and your activities and your 00:23:47.190 --> 00:23:50.130 hopes and your goals, how does it influence my 00:23:50.130 --> 00:23:54.069 life? It's changed it. drastically it took away 00:23:54.069 --> 00:23:57.630 my life everything i expected my life to be and 00:23:57.630 --> 00:24:01.470 then forced me to rebuild a new one and luckily 00:24:01.470 --> 00:24:05.710 that fight has rebuilt one that i i never could 00:24:05.710 --> 00:24:10.970 have imagined otherwise yeah so speaking of other 00:24:10.970 --> 00:24:16.049 people I am currently doing a regimen of physiotherapy. 00:24:16.289 --> 00:24:19.690 And so you talk with your therapist and naturally 00:24:19.690 --> 00:24:22.869 we landed on the topic of IBD and I mentioned 00:24:22.869 --> 00:24:26.069 colitis. And he looked at me and said, oh, what 00:24:26.069 --> 00:24:28.829 is that? And so I thought like, oh, here we go. 00:24:28.910 --> 00:24:30.869 All right, here I go into my spiel of like explaining 00:24:30.869 --> 00:24:33.250 what it is, try and keep it concise, right? I'm 00:24:33.250 --> 00:24:37.049 curious to hear from you how you explain colitis 00:24:37.049 --> 00:24:40.490 and what you're going through IBD to people who've 00:24:40.490 --> 00:24:44.430 never heard of it when you face that. I'm, this 00:24:44.430 --> 00:24:46.950 might be comedic, but I feel like there's got 00:24:46.950 --> 00:24:49.470 to be a little flare of dramatic for people to 00:24:49.470 --> 00:24:53.569 even comprehend how intense it is. And so I will 00:24:53.569 --> 00:24:55.750 always say something along the lines of, well, 00:24:55.849 --> 00:24:59.029 it's an autoimmune illness, meaning my body's 00:24:59.029 --> 00:25:01.670 immune system sees my colon as a foreign object 00:25:01.670 --> 00:25:05.140 and just mounts an attack. So my body is basically 00:25:05.140 --> 00:25:07.660 attacking itself from the inside out. So then 00:25:07.660 --> 00:25:10.779 I have these open wounds, these ulcerations in 00:25:10.779 --> 00:25:14.460 my colon that just bleed. And that's ulcerative 00:25:14.460 --> 00:25:19.900 colitis. I like it. It is. It is. Your body's 00:25:19.900 --> 00:25:22.970 killing you from the inside out. Exactly, exactly. 00:25:23.089 --> 00:25:24.569 And then sometimes you're like, oh, wow, you 00:25:24.569 --> 00:25:27.210 know, really? It's like, yeah, it's really that 00:25:27.210 --> 00:25:29.410 dramatic. There's no other, there's really no 00:25:29.410 --> 00:25:31.089 better way of saying it, you know, except that 00:25:31.089 --> 00:25:32.490 you could say, well, I'm constantly running to 00:25:32.490 --> 00:25:33.970 the toilet and I have to be careful that I don't 00:25:33.970 --> 00:25:38.730 shit myself. Yeah, I like that explanation. Rushing 00:25:38.730 --> 00:25:44.509 to just crap blood. Like that's, yes. So you 00:25:44.509 --> 00:25:47.019 had a... Very strong support system you mentioned 00:25:47.019 --> 00:25:50.140 through, you know, via your husband. Your son 00:25:50.140 --> 00:25:52.259 was maybe a little bit too young at the time 00:25:52.259 --> 00:25:54.200 to support you. But in a way, like you explained 00:25:54.200 --> 00:25:56.359 to us, he did support you, right? He gave you 00:25:56.359 --> 00:26:00.559 sort of this support system. But being around 00:26:00.559 --> 00:26:02.660 somebody, again, your husband who really was 00:26:02.660 --> 00:26:05.220 there for you, what kind of advice, what kind 00:26:05.220 --> 00:26:07.880 of message do you have for people who are living? 00:26:08.730 --> 00:26:10.549 close to someone with colitis, who are living 00:26:10.549 --> 00:26:12.990 with someone who has colitis, who are living 00:26:12.990 --> 00:26:14.650 with someone who got recently diagnosed, who 00:26:14.650 --> 00:26:17.670 is struggling. What's your message to those people? 00:26:17.789 --> 00:26:20.589 What's your advice to those people? The relationships 00:26:20.589 --> 00:26:22.910 in a marriage with a chronic illness are difficult. 00:26:23.150 --> 00:26:28.049 Yes, my ex -husband was doing the best that he 00:26:28.049 --> 00:26:32.910 could to be supportive. But there's still a limitation 00:26:32.910 --> 00:26:36.180 of understanding. And there's a... there's a 00:26:36.180 --> 00:26:39.019 pressure, right? Not only that I was fully aware 00:26:39.019 --> 00:26:41.500 that this isn't really what he signed up for 00:26:41.500 --> 00:26:44.759 when he married me, right? And so I carried a 00:26:44.759 --> 00:26:48.440 lot of that burden and disappointment, feelings 00:26:48.440 --> 00:26:50.680 of disappointment, not that he made me feel that 00:26:50.680 --> 00:26:55.339 way, but I felt it. But it also shifted his life 00:26:55.339 --> 00:26:58.720 into being more of a kind of a caretaker, right? 00:26:58.859 --> 00:27:01.900 Like paying attention to how I was feeling and 00:27:01.900 --> 00:27:06.440 having to navigate my frustrations and emotional 00:27:06.440 --> 00:27:09.519 roller coasters. And so, yes, he did his best 00:27:09.519 --> 00:27:13.079 to be supportive, but it is not easy for either 00:27:13.079 --> 00:27:15.900 partner in a relationship when you're doing that. 00:27:16.000 --> 00:27:20.180 And so that can be hard. I think when I say this 00:27:20.180 --> 00:27:22.119 next part, it's not directly tied at him, not 00:27:22.119 --> 00:27:25.180 at all, but in general for those supporting, 00:27:25.319 --> 00:27:27.400 right? Family and friends supporting others. 00:27:27.599 --> 00:27:33.160 I think I just tell them to believe. their UC 00:27:33.160 --> 00:27:35.960 friend. Like, just believe them. Believe them 00:27:35.960 --> 00:27:38.299 when they're exhausted. Believe them when the 00:27:38.299 --> 00:27:40.359 fatigue is taking over. Believe them when they 00:27:40.359 --> 00:27:43.799 tell you that they just don't feel well. To actually 00:27:43.799 --> 00:27:46.900 honor that and trust that when they're actually 00:27:46.900 --> 00:27:51.059 vocalizing that out loud, that's when it's real. 00:27:51.279 --> 00:27:53.460 Because most of us aren't even going to say it 00:27:53.460 --> 00:27:56.480 in the first place. But, right? When we're saying 00:27:56.480 --> 00:27:58.880 it out loud and being like, I really, I'm, you 00:27:58.880 --> 00:28:01.339 know, setting those boundaries. Allow people 00:28:01.339 --> 00:28:04.039 to set their boundaries, respect those, bring 00:28:04.039 --> 00:28:07.579 joy and light and hope, spend time with them. 00:28:07.680 --> 00:28:10.160 Even that means like playing a card game on the 00:28:10.160 --> 00:28:12.839 couch together, right? Just allow yourself to 00:28:12.839 --> 00:28:14.980 adapt to their needs, believe them when they're 00:28:14.980 --> 00:28:20.339 talking about how trashy they feel and let them 00:28:20.339 --> 00:28:22.680 know that they're still very much loved and valued 00:28:22.680 --> 00:28:25.720 despite the fact that they are not living in 00:28:25.720 --> 00:28:29.039 the way we all expect to be living. Very well 00:28:29.039 --> 00:28:32.099 said. I like that approach. So now we talked 00:28:32.099 --> 00:28:37.700 about others. Let's shift it back to you. Looking 00:28:37.700 --> 00:28:41.440 back, do you have any regrets, any guilt about 00:28:41.440 --> 00:28:44.359 anything, how you handled the disease, how you 00:28:44.359 --> 00:28:48.859 navigated it? I wish I could have learned faster. 00:28:49.000 --> 00:28:51.299 I wish I could have avoided a lot of suffering, 00:28:51.480 --> 00:28:55.240 right? I mean, that's just part of life's journey 00:28:55.240 --> 00:28:57.299 is slow growth and development and learning. 00:28:57.359 --> 00:29:00.430 I wish I could have. told myself then everything 00:29:00.430 --> 00:29:03.470 I know now, that would have been great. But I 00:29:03.470 --> 00:29:07.549 wish I would have been kinder to myself, I think. 00:29:07.730 --> 00:29:10.509 You know, I just told you that others need to 00:29:10.509 --> 00:29:13.650 believe us when we feel sick. I should have given 00:29:13.650 --> 00:29:16.930 myself that same grace more often. I should have 00:29:16.930 --> 00:29:20.970 allowed myself to trust that when my body felt 00:29:20.970 --> 00:29:26.029 like trash, that I needed... to not feel guilty 00:29:26.029 --> 00:29:29.549 about that. I don't know why I felt so ashamed 00:29:29.549 --> 00:29:34.450 and so guilty and so embarrassed instead of just 00:29:34.450 --> 00:29:39.450 being kind and accepting and giving myself permission 00:29:39.450 --> 00:29:44.910 to be different and to take care of myself and 00:29:44.910 --> 00:29:47.529 live in a different way than others. So much 00:29:47.529 --> 00:29:50.009 easier said than done, but man, that would have 00:29:50.009 --> 00:29:52.849 reduced a lot of suffering to be able to just 00:29:54.250 --> 00:29:57.089 have nicer narratives in my head throughout the 00:29:57.089 --> 00:30:00.650 whole experience, for sure. And then let's not 00:30:00.650 --> 00:30:03.930 forget to not wait for months ignoring symptoms, 00:30:04.069 --> 00:30:06.789 especially any sort of bleeding, you know, from 00:30:06.789 --> 00:30:09.690 the rectal area, right? Minor detail, don't bleed 00:30:09.690 --> 00:30:12.890 for months and not tell anyone. Yes, yes. Actually, 00:30:12.910 --> 00:30:16.180 that's a really good point because I... I kind 00:30:16.180 --> 00:30:18.900 of continued that pattern. I hated letting anyone 00:30:18.900 --> 00:30:21.799 know that I was sick. I really refused to talk 00:30:21.799 --> 00:30:24.619 about it for the longest time, longest time. 00:30:24.779 --> 00:30:27.099 I still get uncomfortable sometimes admitting 00:30:27.099 --> 00:30:32.279 it. And I just had this sense of pride that I 00:30:32.279 --> 00:30:34.819 didn't want people to know I was sick and struggling. 00:30:34.960 --> 00:30:37.380 I didn't want to be seen as weak. I didn't want 00:30:37.380 --> 00:30:39.839 to be seen as sick. I didn't want extra treatment, 00:30:40.019 --> 00:30:43.279 extra attention, or like those, oh, tilted head 00:30:43.279 --> 00:30:48.319 responses, you know? And And so I genuinely fought 00:30:48.319 --> 00:30:52.720 to hide it and just function, right? Function 00:30:52.720 --> 00:30:54.500 out around the world and then just come home 00:30:54.500 --> 00:30:57.680 and crash. That was not healthy for me. I did 00:30:57.680 --> 00:31:01.140 not allow myself to build an extensive support 00:31:01.140 --> 00:31:04.140 system because I was so ashamed of what I was 00:31:04.140 --> 00:31:09.180 experiencing. That is also a regret of being 00:31:09.180 --> 00:31:13.960 so self -isolating physically and emotionally. 00:31:16.680 --> 00:31:18.960 So that's really perfect because now you've touched 00:31:18.960 --> 00:31:21.819 on what I'm going to talk to you next, and that 00:31:21.819 --> 00:31:23.680 is sort of like being open about the disease. 00:31:23.740 --> 00:31:27.359 And you just mentioned you sort of kept it to 00:31:27.359 --> 00:31:29.420 yourself and you were not really open about it. 00:31:29.480 --> 00:31:33.400 I want to ask you what happened that you changed 00:31:33.400 --> 00:31:35.559 that direction, right? Going from sort of being 00:31:35.559 --> 00:31:37.019 embarrassed about it, not wanting to mention 00:31:37.019 --> 00:31:39.900 anything, to being more open about it. The reason 00:31:39.900 --> 00:31:43.339 why I ask you this is because you are quite outspoken 00:31:43.339 --> 00:31:45.480 about it, especially on social media, you know, 00:31:45.500 --> 00:31:47.200 TikTok. This is one of the ways that we actually 00:31:47.200 --> 00:31:50.200 connect it, right? And I've seen your stuff and 00:31:50.200 --> 00:31:53.299 you seem to have absolutely no fear to, you know, 00:31:53.299 --> 00:31:56.299 put the camera in your face and to talk about 00:31:56.299 --> 00:32:01.200 colitis. So what brought that about? And at what 00:32:01.200 --> 00:32:03.700 point sort of did you have this epiphany of like, 00:32:03.799 --> 00:32:06.000 hey, let's... Let's switch to being actually 00:32:06.000 --> 00:32:08.460 open about this and talking about it and trying 00:32:08.460 --> 00:32:11.319 to raise awareness. Was it a singular event that 00:32:11.319 --> 00:32:15.660 sort of flipped the switch or was it sort of 00:32:15.660 --> 00:32:19.299 a gradual opening, if we can call it that? That's 00:32:19.299 --> 00:32:21.980 a great question. Yes, there's a singular event. 00:32:22.559 --> 00:32:27.019 I will also say that I'm more comfortable telling 00:32:27.019 --> 00:32:30.740 my story and social media allows for this. to 00:32:30.740 --> 00:32:35.160 people who I know relate to it, right? So it's 00:32:35.160 --> 00:32:37.559 a lot easier when we're building a community 00:32:37.559 --> 00:32:41.240 with one another. And if I'm sharing things virtually, 00:32:41.519 --> 00:32:45.599 I'm speaking to the person that I know understands 00:32:45.599 --> 00:32:48.240 and is living with the same kind of suffering, 00:32:48.440 --> 00:32:51.039 right? It's so much easier to connect on that 00:32:51.039 --> 00:32:54.539 level. I still get very insecure about people 00:32:54.539 --> 00:32:58.319 who kind of know me. listening in on those things, 00:32:58.359 --> 00:33:01.059 which is, again, this learned response over time 00:33:01.059 --> 00:33:05.859 of trying to isolate. And I don't, I'm excited 00:33:05.859 --> 00:33:09.599 for that to shift and change even more over time. 00:33:10.250 --> 00:33:14.470 But what did change for me, I had the opportunity 00:33:14.470 --> 00:33:18.369 eventually to end up getting my PhD. So I went 00:33:18.369 --> 00:33:22.269 into a PhD program that focused on health promotion 00:33:22.269 --> 00:33:25.769 and health behavior and health education. And 00:33:25.769 --> 00:33:28.210 so within my PhD program, it was very research 00:33:28.210 --> 00:33:30.990 -based. So I did my dissertation and I'm creating 00:33:30.990 --> 00:33:33.700 a... research project from scratch that took 00:33:33.700 --> 00:33:37.000 me multiple years. And it's the big question 00:33:37.000 --> 00:33:38.900 of, okay, what topics do I want to address? What 00:33:38.900 --> 00:33:42.920 do I want my focus to be? I knew deep down inside 00:33:42.920 --> 00:33:45.420 that ulcerative colitis is... I mean, the whole 00:33:45.420 --> 00:33:48.480 point of me gaining my education over time was 00:33:48.480 --> 00:33:50.440 just to learn more about how to take care of 00:33:50.440 --> 00:33:52.700 my own health and understand it in a bigger, 00:33:52.740 --> 00:33:55.940 broader context. So I knew that my education 00:33:55.940 --> 00:33:59.079 was focused on understanding self -management 00:33:59.079 --> 00:34:02.789 of inflammatory bowel disease. But making a decision 00:34:02.789 --> 00:34:05.809 to do a dissertation on ulcerative colitis meant 00:34:05.809 --> 00:34:10.570 that I had to tell all of my mentors and anyone 00:34:10.570 --> 00:34:13.269 who was listening and anyone who was publishing 00:34:13.269 --> 00:34:17.949 that I had ulcerative colitis. And that was terrifying 00:34:17.949 --> 00:34:21.050 for me. I don't even, I wish I could understand 00:34:21.050 --> 00:34:23.570 more why it was so terrifying. But again, it 00:34:23.570 --> 00:34:25.510 was just this, I don't want to be labeled in 00:34:25.510 --> 00:34:30.050 a certain way. I don't know. And so it delayed 00:34:30.050 --> 00:34:33.510 me. Because I knew what kind of work I wanted 00:34:33.510 --> 00:34:37.889 to do, but I was so intimidated by implying to 00:34:37.889 --> 00:34:41.789 the world now that what I live and breathe is 00:34:41.789 --> 00:34:45.070 ulcerative colitis. So finally getting to that 00:34:45.070 --> 00:34:48.510 point of realizing that my life is going to have 00:34:48.510 --> 00:34:52.150 purpose if I use my experiences to benefit the 00:34:52.150 --> 00:34:56.449 lives of others. Like that's what I have to hold 00:34:56.449 --> 00:34:59.829 on to. And so as I worked on that dissertation, 00:35:00.409 --> 00:35:02.510 first finally being like, okay, this is the topic. 00:35:03.030 --> 00:35:06.130 My PhD mentor was like, well, you don't have 00:35:06.130 --> 00:35:08.130 to tell people you have UC. You can just work 00:35:08.130 --> 00:35:11.250 on the topic. And I was like, it's not the same 00:35:11.250 --> 00:35:14.309 if I just talk from a general space. I'm in this. 00:35:14.389 --> 00:35:16.789 I need to own this. But I had the opportunity 00:35:16.789 --> 00:35:20.349 to go into the homes of multiple different ulcerative 00:35:20.349 --> 00:35:22.590 colitis patients and speak to them one -on -one 00:35:22.590 --> 00:35:25.369 about their stories and how they were navigating 00:35:25.369 --> 00:35:29.429 the process. And it was so... healing for me 00:35:29.429 --> 00:35:32.769 personally to connect with other people's stories 00:35:32.769 --> 00:35:35.769 and to connect with others who understood what 00:35:35.769 --> 00:35:40.050 I had lived through as well and share that. And 00:35:40.050 --> 00:35:44.389 so I very quickly learned that the more I'm authentic 00:35:44.389 --> 00:35:49.010 to myself and what I've experienced and what 00:35:49.010 --> 00:35:52.780 I... what I value most because of these life 00:35:52.780 --> 00:35:55.420 experiences I mean it has shaped who I am why 00:35:55.420 --> 00:35:59.619 would I not own who I am now because of my experiences 00:35:59.619 --> 00:36:02.119 so the more I tried to be more authentic to myself 00:36:02.119 --> 00:36:05.860 and realize that I wasn't alone and that there 00:36:05.860 --> 00:36:08.000 were a lot of other people dealing with this 00:36:08.000 --> 00:36:11.179 that healing moment allowed me to give myself 00:36:11.179 --> 00:36:16.489 more permission to open up And really take ownership 00:36:16.489 --> 00:36:20.610 of this has been so much of my life. It has shaped 00:36:20.610 --> 00:36:24.710 who I am today in so many ways. I have to include 00:36:24.710 --> 00:36:28.570 it as part of who I am. I have to. And you don't 00:36:28.570 --> 00:36:32.710 stop there because you are on a quest to help 00:36:32.710 --> 00:36:35.570 people, right? Help people with IBD, with colitis. 00:36:35.590 --> 00:36:38.570 And you do coaching as well. Talk to me a little 00:36:38.570 --> 00:36:40.510 bit about this initiative, what it is that you're 00:36:40.510 --> 00:36:42.730 doing, why you want to do that and how this is 00:36:42.730 --> 00:36:45.650 done. how people can reach you even. Yes, thank 00:36:45.650 --> 00:36:49.329 you. So as I was working on this research, I 00:36:49.329 --> 00:36:51.650 would have the opportunity to go to medical research 00:36:51.650 --> 00:36:53.989 conferences, Crohn's and Colitis Congress, things 00:36:53.989 --> 00:36:56.469 like that, where I was interacting with the other 00:36:56.469 --> 00:36:59.489 big thought leaders, the physicians, and the 00:36:59.489 --> 00:37:01.949 research that's being done. And it was just so 00:37:01.949 --> 00:37:07.150 evident to me that no one is filling the space. 00:37:07.880 --> 00:37:10.699 outside of the physician's office, right? And 00:37:10.699 --> 00:37:12.659 so you go, you have your doctor's appointment, 00:37:12.719 --> 00:37:16.219 and they help diagnose and check where you are 00:37:16.219 --> 00:37:18.840 and make adjustments to your meds. And they spend 00:37:18.840 --> 00:37:22.800 10, 15 minutes with you. And then you move along. 00:37:23.000 --> 00:37:25.579 And then you go home. And you have the daily 00:37:25.579 --> 00:37:28.420 burden of living with, you see, the mental and 00:37:28.420 --> 00:37:30.619 emotional, the social burden, trying to figure 00:37:30.619 --> 00:37:33.539 out diet, trying to figure out how to get your 00:37:33.539 --> 00:37:36.900 health back under control. And there's just, 00:37:37.670 --> 00:37:40.190 especially at the time I was in where this was 00:37:40.190 --> 00:37:42.329 just becoming more and more evident to me, there's 00:37:42.329 --> 00:37:47.210 not a lot of support or resources or provision 00:37:47.210 --> 00:37:51.010 of care that's truly addressing that comprehensive 00:37:51.010 --> 00:37:54.769 approach. All of the pieces of the puzzle that 00:37:54.769 --> 00:37:59.750 are living with you see. And there have been 00:37:59.750 --> 00:38:03.130 a lot of strides in the field to fill that gap. 00:38:03.739 --> 00:38:05.960 But that's where I belong. I knew that that's 00:38:05.960 --> 00:38:07.900 where I belonged because not only did I have 00:38:07.900 --> 00:38:10.780 my own story, but I had this educational background 00:38:10.780 --> 00:38:14.219 that was really filled with lifestyle interventions 00:38:14.219 --> 00:38:17.139 and health behavior and the psychological process 00:38:17.139 --> 00:38:21.699 that works through that. And so I ended up pivoting 00:38:21.699 --> 00:38:24.440 out of the research world, had some great opportunities, 00:38:24.739 --> 00:38:28.099 learned a ton. But I knew that instead of just 00:38:28.099 --> 00:38:31.340 running research that would get published, that 00:38:31.550 --> 00:38:34.170 maybe would inform some physicians, maybe hopefully 00:38:34.170 --> 00:38:36.969 some policies. I just wanted to connect with 00:38:36.969 --> 00:38:39.050 the people. I knew that that's where I belonged 00:38:39.050 --> 00:38:42.369 is to actually using my life experiences and 00:38:42.369 --> 00:38:44.409 everything I learned professionally, personally, 00:38:44.489 --> 00:38:48.690 to make a difference in the struggle, that daily 00:38:48.690 --> 00:38:52.190 struggle. So yeah, now I've pivoted out of that 00:38:52.190 --> 00:38:55.769 world and then moved into that one -on -one mentorship 00:38:55.769 --> 00:39:00.889 and working with individuals who... I did this... 00:39:01.119 --> 00:39:03.920 alone, right? For so long. So many of us are 00:39:03.920 --> 00:39:06.880 doing this alone. I had to teach myself there's 00:39:06.880 --> 00:39:09.179 so much trial and error that comes through and 00:39:09.179 --> 00:39:11.739 so many mixed messages. And how do you discern 00:39:11.739 --> 00:39:14.280 what's true, what's not true, what's useful, 00:39:14.519 --> 00:39:17.380 what's not useful, right? It's just so messy 00:39:17.380 --> 00:39:20.920 trying to wrap your head around how to truly... 00:39:21.610 --> 00:39:26.030 get your life back on track. And that's my purpose, 00:39:26.090 --> 00:39:29.349 is to work directly with individuals who can 00:39:29.349 --> 00:39:32.369 benefit from everything that I've learned and 00:39:32.369 --> 00:39:36.989 genuine compassion, genuine understanding, genuine 00:39:36.989 --> 00:39:41.449 care, and a genuine partnership to run the journey 00:39:41.449 --> 00:39:45.530 together instead of alone. That is my goal, is 00:39:45.530 --> 00:39:47.829 to provide that comprehensive picture and that 00:39:47.829 --> 00:39:52.400 connection and support. So I try my best to offer 00:39:52.400 --> 00:39:57.099 as much as I can to help support everyone. And 00:39:57.099 --> 00:40:00.659 then when people want that one -on -one connection 00:40:00.659 --> 00:40:04.099 and additional, I don't want to say hand -holding 00:40:04.099 --> 00:40:07.300 because I don't do everything for you, right? 00:40:07.400 --> 00:40:09.380 It's everyone's individual journey. But that 00:40:09.380 --> 00:40:11.380 connection and that support, that one -on -one 00:40:11.380 --> 00:40:15.869 mentorship there, that's what I do. And that's 00:40:15.869 --> 00:40:18.389 really a great initiative and really seems to, 00:40:18.429 --> 00:40:21.829 like you said, to be filling a certain void that 00:40:21.829 --> 00:40:24.789 not many IBD patients even thought about, really. 00:40:24.949 --> 00:40:26.909 And I think it's really great. We're going to 00:40:26.909 --> 00:40:29.289 for sure put your contact info in the show notes 00:40:29.289 --> 00:40:31.449 as well so that people listening can reach out 00:40:31.449 --> 00:40:35.130 to you at their leisure. So, Kelly, as we sort 00:40:35.130 --> 00:40:37.349 of come to a close, I have two more questions 00:40:37.349 --> 00:40:39.710 for you. I want to take a quick trip back into 00:40:39.710 --> 00:40:41.650 the past and then we'll take a quick trip into 00:40:41.650 --> 00:40:44.690 the future. Based on everything that we talked 00:40:44.690 --> 00:40:48.150 about today, based on your entire journey, if 00:40:48.150 --> 00:40:52.550 you could speak to yourself back at age 22 on 00:40:52.550 --> 00:40:55.710 the day you got diagnosed, what would you tell 00:40:55.710 --> 00:41:00.550 yourself? I'd probably hug her first. I would 00:41:00.550 --> 00:41:03.170 probably hug her and hold on to her for a long 00:41:03.170 --> 00:41:10.610 time. Cry with her, probably. I'll try to keep 00:41:10.610 --> 00:41:14.079 my emotions at bay. I think I would tell her 00:41:14.079 --> 00:41:19.940 that that diagnosis and all of the hell that 00:41:19.940 --> 00:41:24.820 was coming in the future would build, if she 00:41:24.820 --> 00:41:28.440 fought really hard, would build a strength and 00:41:28.440 --> 00:41:33.860 resiliency that she couldn't even imagine could 00:41:33.860 --> 00:41:37.380 exist, right? That there would be this capacity 00:41:37.380 --> 00:41:43.800 to do and think and see. in the world that only 00:41:43.800 --> 00:41:50.260 that level of hell can generate. And to fight, 00:41:50.400 --> 00:41:53.340 to start learning how to take care of your physical 00:41:53.340 --> 00:41:55.519 and emotional health as fast as possible right 00:41:55.519 --> 00:41:58.360 away. And, you know, that paying attention to 00:41:58.360 --> 00:42:00.619 what you eat and how much you move and that nervous 00:42:00.619 --> 00:42:02.980 system regulation and your mental health and 00:42:02.980 --> 00:42:05.019 your sleep, all the things, all the pieces, I 00:42:05.019 --> 00:42:07.760 would have given her all that information. But 00:42:07.760 --> 00:42:10.219 there is hope, right? There is hope for that 00:42:10.219 --> 00:42:15.139 self -development. And hard things, it's like 00:42:15.139 --> 00:42:17.639 diamonds, right? A lot of pressure and a lot 00:42:17.639 --> 00:42:22.360 of hard has the capacity to create something 00:42:22.360 --> 00:42:27.280 beautiful and a much more pure, authentic version 00:42:27.280 --> 00:42:31.719 of you. And I wouldn't be who I am today without 00:42:31.719 --> 00:42:35.719 what I've experienced, for sure. A message of 00:42:35.719 --> 00:42:38.099 power, a message of strength, a message of hope, 00:42:38.239 --> 00:42:40.519 a message of self -care as well. So I think that 00:42:40.519 --> 00:42:44.139 really sums up what dealing with this disease 00:42:44.139 --> 00:42:47.679 is. So you mentioned it earlier, it's always 00:42:47.679 --> 00:42:50.559 great to end up with hope or the positive, you 00:42:50.559 --> 00:42:54.840 said. Looking ahead, and this might be a tough 00:42:54.840 --> 00:42:57.940 question to answer, but I'm sure you have some 00:42:57.940 --> 00:43:00.639 sense of hope at least for it. Do you think that 00:43:00.639 --> 00:43:04.800 we will see a cure to IBD in our lifetime? Oh, 00:43:04.840 --> 00:43:07.500 I would love to end on a hopeful note. Shoot, 00:43:07.639 --> 00:43:12.619 that's, you know, I have thought about this a 00:43:12.619 --> 00:43:15.699 ton. I think there's two answers to that question. 00:43:16.119 --> 00:43:19.679 And it depends on what you count as cure, because 00:43:19.679 --> 00:43:23.320 I think there are amazing medical strides happening, 00:43:23.500 --> 00:43:26.420 right? The science is getting much better at 00:43:26.420 --> 00:43:31.260 developing effective treatments. for UC. So I 00:43:31.260 --> 00:43:35.679 think that the medical care will improve and 00:43:35.679 --> 00:43:41.500 the stigma will reduce and the openness and the 00:43:41.500 --> 00:43:43.599 connections will improve. I think all of that 00:43:43.599 --> 00:43:46.619 is headed in a good direction. At the same time, 00:43:46.619 --> 00:43:51.719 our society, the pressures of our lives, autoimmune 00:43:51.719 --> 00:43:55.320 illnesses are not going away. And the root cause 00:43:55.320 --> 00:43:59.539 of chronic inflammatory illnesses is inflammation. 00:43:59.679 --> 00:44:03.400 And that is coming from the air that we breathe 00:44:03.400 --> 00:44:05.480 and the things that we tell ourselves and the 00:44:05.480 --> 00:44:08.159 things that we ingest into our bodies, the experiences 00:44:08.159 --> 00:44:10.880 we have, the trauma that we hold. Life is just 00:44:10.880 --> 00:44:14.139 getting so much harder as time goes on and that 00:44:14.139 --> 00:44:17.019 affects our bodies and our bodies can't keep 00:44:17.019 --> 00:44:21.320 up with the world around us right now in the 00:44:21.320 --> 00:44:24.659 best way because We shouldn't be able to keep 00:44:24.659 --> 00:44:27.360 up with all of that. So I think that the pressure 00:44:27.360 --> 00:44:32.360 of real life is getting stronger, which is going 00:44:32.360 --> 00:44:36.300 to lead to more autoimmune illnesses within ourselves 00:44:36.300 --> 00:44:39.139 and within the population. And so I think it 00:44:39.139 --> 00:44:43.000 will be harder and harder to manage UC if we 00:44:43.000 --> 00:44:48.659 continue to match the world around us and lifestyles 00:44:48.659 --> 00:44:50.840 like that. So do I think there will be a cure 00:44:50.840 --> 00:44:56.440 in our lifetime? No. But is there hope for a 00:44:56.440 --> 00:45:01.440 better quality of life and genuine thriving? 00:45:01.980 --> 00:45:06.159 Yes. Yes, I do. Pragmatic down to earth with 00:45:06.159 --> 00:45:08.039 a little bit of hope as well. So I'm not even 00:45:08.039 --> 00:45:10.099 going to further elaborate because I really think 00:45:10.099 --> 00:45:13.940 that you summed it up in a very good solid way. 00:45:15.000 --> 00:45:17.480 Kelly. Thanks so much for taking the time to 00:45:17.480 --> 00:45:20.219 talk with me today. It was really a pleasure 00:45:20.219 --> 00:45:23.780 for me to talk about your colitis journey and 00:45:23.780 --> 00:45:26.659 IBD in general. For you, I wish you nothing but 00:45:26.659 --> 00:45:30.480 the best and continuing remission. And thank 00:45:30.480 --> 00:45:32.579 you also for what you're doing and keep speaking 00:45:32.579 --> 00:45:34.820 out and keep helping people. I think sense of 00:45:34.820 --> 00:45:39.079 community is really what we need in IBD, Crohn's 00:45:39.079 --> 00:45:41.739 and colitis. So keep doing that and all the best 00:45:41.739 --> 00:45:43.300 to you. Thank you so much again for being here 00:45:43.300 --> 00:45:46.469 today. Thank you. You too. Absolutely. That's 00:45:46.469 --> 00:45:49.070 it for today's episode of Talking S***, presented 00:45:49.070 --> 00:45:52.449 by Colitis Unfiltered. I'm Frank Tabering, and 00:45:52.449 --> 00:45:55.530 if this hit home, or hit your gut, do us a favor, 00:45:55.670 --> 00:45:58.670 subscribe to the show, and follow us at Colitis 00:45:58.670 --> 00:46:02.110 Unfiltered on YouTube, Substack, Instagram, Threads, 00:46:02.110 --> 00:46:05.329 TikTok, and Reddit. We'll see you soon for more 00:46:05.329 --> 00:46:07.130 inspiring stories from the bathroom floor.