WEBVTT 00:00:01.859 --> 00:00:05.440 Every challenge that I have endured, every time 00:00:05.440 --> 00:00:07.700 that I have not wanted to get out of bed, but 00:00:07.700 --> 00:00:10.480 I get up and put on clothes and put on makeup, 00:00:10.759 --> 00:00:15.759 it has been worth it. Every single day is a gift. 00:00:16.199 --> 00:00:20.399 I could have at nine never imagined all of the 00:00:20.399 --> 00:00:25.379 amazing blessings that would have come from a 00:00:25.379 --> 00:00:29.210 diagnosis like this. This is Kristen. who got 00:00:29.210 --> 00:00:31.809 diagnosed with ulcerative colitis at just nine 00:00:31.809 --> 00:00:35.590 years old in Cleveland, Ohio. Growing up with 00:00:35.590 --> 00:00:38.509 IBD meant hospital stays, missed schools, failed 00:00:38.509 --> 00:00:41.090 treatments, and learning far too early what it 00:00:41.090 --> 00:00:43.450 means to live in a body that doesn't cooperate. 00:00:44.130 --> 00:00:46.509 Kristen's journey includes multiple surgeries 00:00:46.509 --> 00:00:49.369 and ultimately living with a permanent ostomy. 00:00:49.729 --> 00:00:52.810 Today, she shares what struggles and successes 00:00:52.810 --> 00:00:56.909 led to an IBD life worth living. This is Talking 00:00:56.909 --> 00:01:00.280 S***. presented by Colitis Unfiltered. My name 00:01:00.280 --> 00:01:02.939 is Frank Tabering, and Kristen, welcome to the 00:01:02.939 --> 00:01:05.599 show. Thank you, Frank. Thanks so much for having 00:01:05.599 --> 00:01:08.299 me. I'm really excited to be here. So let's dive 00:01:08.299 --> 00:01:14.079 right in. Age nine, you were a child. As far 00:01:14.079 --> 00:01:15.920 as you can remember, because it's been a while, 00:01:16.060 --> 00:01:18.859 can you take me a little bit through how the 00:01:18.859 --> 00:01:22.439 symptoms first started to manifest? And also, 00:01:22.500 --> 00:01:24.859 I'm assuming, well, your parents noticed that, 00:01:24.900 --> 00:01:27.359 hey, something is wrong here. Let's have this 00:01:27.359 --> 00:01:30.799 checked out by medical professionals. How did 00:01:30.799 --> 00:01:34.400 it all start for you? Yeah, so this was 1985. 00:01:35.340 --> 00:01:38.480 And again, I was nine years old. It was a little 00:01:38.480 --> 00:01:43.469 bit after Easter. So April of 1985. And my initial 00:01:43.469 --> 00:01:47.750 symptoms were very watery diarrhea, a lot of 00:01:47.750 --> 00:01:51.409 urgency, stomach aches. I was running a fever. 00:01:52.090 --> 00:01:54.129 So, of course, my mom initially thought I had 00:01:54.129 --> 00:01:57.750 like a GI virus and I was taken to the pediatrician's 00:01:57.750 --> 00:02:00.049 office. Pediatrician said, oh, well, you know, 00:02:00.069 --> 00:02:03.069 maybe she has dysentery, which, you know, traveler's 00:02:03.069 --> 00:02:05.819 diarrhea, which. was laughable because I'd never 00:02:05.819 --> 00:02:08.039 really even left the city that I lived in, let 00:02:08.039 --> 00:02:10.120 alone gone out of the country. So don't know 00:02:10.120 --> 00:02:12.159 where I would have gotten that. But they put 00:02:12.159 --> 00:02:14.379 me on some antibiotics and I didn't improve. 00:02:15.039 --> 00:02:21.300 And that led to us doing a colonoscopy. about 00:02:21.300 --> 00:02:25.520 a month later. At the time, in 1985, this was 00:02:25.520 --> 00:02:27.280 when Ronald Reagan was president in the United 00:02:27.280 --> 00:02:30.099 States, and he had had a colon cancer scare. 00:02:30.419 --> 00:02:33.280 So all over the nightly news, everyone was talking 00:02:33.280 --> 00:02:35.759 about if you have blood in your stool, if you 00:02:35.759 --> 00:02:38.979 have change in bowel habits, you could have colon 00:02:38.979 --> 00:02:42.620 cancer. So I remember the day that blood appeared 00:02:42.620 --> 00:02:45.060 in my stool as I was having these symptoms, and 00:02:45.060 --> 00:02:47.599 I was terrified. I thought, oh, for sure, I have 00:02:47.599 --> 00:02:50.860 cancer. And as a nine year old, I my immediate 00:02:50.860 --> 00:02:52.719 thought was, how am I going to tell my parents 00:02:52.719 --> 00:02:55.740 that I have cancer? So I hid the fact that there 00:02:55.740 --> 00:02:58.259 was blood in my stool. And I remember the day 00:02:58.259 --> 00:03:01.240 that my mom found me in the bathroom on the toilet 00:03:01.240 --> 00:03:03.580 and I was crying and she's like, you know, what 00:03:03.580 --> 00:03:06.219 is wrong? What is wrong? I said, I'm bleeding. 00:03:06.659 --> 00:03:09.419 And I showed her and she, of course, started 00:03:09.419 --> 00:03:12.340 crying, too. You know, and at that time, we didn't 00:03:12.340 --> 00:03:15.479 know what. ulcerative colitis was. We didn't 00:03:15.479 --> 00:03:17.379 know what Crohn's disease was. We didn't know 00:03:17.379 --> 00:03:20.219 that those were even possibilities. So of course 00:03:20.219 --> 00:03:24.639 it was terrifying for our whole family. I ended 00:03:24.639 --> 00:03:27.599 up having the colonoscopy and before I even got 00:03:27.599 --> 00:03:30.680 off of the table, the doctor had called my parents 00:03:30.680 --> 00:03:33.479 and told them, your daughter has ulcerative colitis. 00:03:33.939 --> 00:03:36.960 I was immediately... admitted to the hospital. 00:03:37.120 --> 00:03:39.379 I was that sick. This had been, you know, almost 00:03:39.379 --> 00:03:42.240 six weeks of this going on. I had lost so much 00:03:42.240 --> 00:03:45.879 weight. I was so anemic, very dehydrated, very 00:03:45.879 --> 00:03:49.620 malnutritioned. So I was admitted to the hospital 00:03:49.620 --> 00:03:54.259 and I was there for the next 87 days. So obviously 00:03:54.259 --> 00:03:57.300 the world was a lot different back then. First 00:03:57.300 --> 00:04:00.300 of all, you were very young. Then there was no 00:04:00.300 --> 00:04:03.419 internet, not really any resource that you could 00:04:05.500 --> 00:04:08.240 look at what it was that you had or find more 00:04:08.240 --> 00:04:10.560 information about the disease that you were diagnosed 00:04:10.560 --> 00:04:15.180 with. So if you remember, how did your parents 00:04:15.180 --> 00:04:18.839 approach the term ulcerative colitis with you 00:04:18.839 --> 00:04:21.740 or the doctors? How did they explain it to you, 00:04:21.759 --> 00:04:24.300 if they really explained it to you at all? It 00:04:24.300 --> 00:04:28.699 wasn't explained to me very well. All I knew 00:04:28.699 --> 00:04:31.860 is that my colon was sick and it was bleeding 00:04:31.860 --> 00:04:35.879 and I wasn't allowed to eat because eating was 00:04:35.879 --> 00:04:38.399 going to make it worse. So I was on TPN in the 00:04:38.399 --> 00:04:41.259 hospital. I was told that this was something 00:04:41.259 --> 00:04:44.860 that could be forever, but I didn't have an understanding 00:04:44.860 --> 00:04:49.009 of what. chronic meant. I thought that once I 00:04:49.009 --> 00:04:51.170 got out of the hospital that I was going to be 00:04:51.170 --> 00:04:53.410 better and that it would not, you know, affect 00:04:53.410 --> 00:04:57.029 my life moving forward. You know, my parents, 00:04:57.290 --> 00:05:00.410 again, there was no internet. So given this term, 00:05:00.490 --> 00:05:02.689 ulcerative colitis, I think the doctors explained 00:05:02.689 --> 00:05:05.670 it to them as best as they could. We were given 00:05:05.670 --> 00:05:07.350 a pamphlet for something called the National 00:05:07.350 --> 00:05:09.990 Foundation for Iliitis and Colitis, which was 00:05:09.990 --> 00:05:11.910 like the precursor to the Crohn's and Colitis 00:05:11.910 --> 00:05:14.720 Foundation here in the States. But other than 00:05:14.720 --> 00:05:16.379 that, we weren't really given a whole lot of 00:05:16.379 --> 00:05:20.279 resources or education. I was, like I said, in 00:05:20.279 --> 00:05:23.259 the hospital for almost three months, and I don't 00:05:23.259 --> 00:05:26.560 recall a lot of conversation being made about 00:05:26.560 --> 00:05:28.860 my actual diagnosis. There was a lot of talk 00:05:28.860 --> 00:05:31.740 of symptoms. There was a lot of talk of how we 00:05:31.740 --> 00:05:33.740 were treating it, which was high -dose steroids, 00:05:34.259 --> 00:05:38.180 total bowel rest, TPN. But in terms of having 00:05:38.180 --> 00:05:42.470 a good understanding of the nature of ulcerative 00:05:42.470 --> 00:05:46.310 colitis being related to, you know, an inflammatory 00:05:46.310 --> 00:05:50.529 condition, autoimmune. None of that was discussed 00:05:50.529 --> 00:05:53.629 with us in a manner that I could understand at 00:05:53.629 --> 00:05:55.490 nine. And I don't think that my parents had any 00:05:55.490 --> 00:06:00.290 clue, the broadness of what ulcerative colitis 00:06:00.290 --> 00:06:02.970 or, you know, inflammatory bowel disease as a 00:06:02.970 --> 00:06:06.750 whole could encompass for the rest of my life. 00:06:07.360 --> 00:06:10.120 Post -diagnosis, you just mentioned it. You stayed 00:06:10.120 --> 00:06:11.920 in the hospital for a long time. You talked a 00:06:11.920 --> 00:06:13.980 little bit about the treatments. Now take us 00:06:13.980 --> 00:06:16.899 through how this progressed, you know, the following 00:06:16.899 --> 00:06:22.819 years, between nine and basically what happened 00:06:22.819 --> 00:06:26.680 next. So what happened next, I was discharged 00:06:26.680 --> 00:06:29.600 from the hospital about three months after diagnosis. 00:06:30.120 --> 00:06:34.620 I was on very high dose oral prednisone. went 00:06:34.620 --> 00:06:39.000 home. I was in the third grade, so I missed the 00:06:39.000 --> 00:06:42.759 remainder of my third grade year, returned to 00:06:42.759 --> 00:06:47.120 school in the fourth grade, and did so again 00:06:47.120 --> 00:06:49.519 on high -dose prednisone. That was the only treatment 00:06:49.519 --> 00:06:51.620 available at that time. There was azolfadine, 00:06:51.699 --> 00:06:55.360 which was a 5 -ASA medication, an aspirin derivative. 00:06:56.519 --> 00:07:00.600 And steroids. So steroids was what I was on. 00:07:00.680 --> 00:07:03.339 I was steroid dependent for quite some time. 00:07:03.480 --> 00:07:07.560 I had the big moon face. I gained almost 60 pounds. 00:07:07.600 --> 00:07:10.680 So when I went to school, of course, my appearance 00:07:10.680 --> 00:07:14.360 was very different. My classmates all wanted 00:07:14.360 --> 00:07:17.500 to know, you know, where were you? Are you contagious? 00:07:17.879 --> 00:07:21.300 Why do you look like this? They nicknamed me 00:07:21.300 --> 00:07:23.420 Cabbage Patch Doll, which was like the popular 00:07:23.420 --> 00:07:27.620 toy at the time, which it was a small doll, but 00:07:27.620 --> 00:07:30.500 it had very large, you know, puffy cheeks. So 00:07:30.500 --> 00:07:34.439 that was kind of traumatic as a kid. But I lived 00:07:34.439 --> 00:07:39.839 from age nine until I was 15, just going through 00:07:39.839 --> 00:07:43.060 like yearly flares. My disease would always flare 00:07:43.060 --> 00:07:45.779 in the fall, like right when school would start. 00:07:46.279 --> 00:07:48.920 And then it would always flare in the spring 00:07:48.920 --> 00:07:52.240 when the seasons would change. And I know that 00:07:52.240 --> 00:07:54.740 I'm not the only patient who experiences that 00:07:54.740 --> 00:08:00.540 as well. When I was, how old was I? I guess I 00:08:00.540 --> 00:08:06.379 was about 14. I had a particularly bad flare 00:08:06.379 --> 00:08:10.279 of the colitis and again was placed on prednisone, 00:08:10.379 --> 00:08:13.160 high doses. I was a freshman in high school. 00:08:15.529 --> 00:08:18.589 It was a totally different beast at that time 00:08:18.589 --> 00:08:23.589 from being nine years old and being very dependent 00:08:23.589 --> 00:08:26.810 on my parents and what they thought and looking 00:08:26.810 --> 00:08:29.670 to them for help and guidance to now being a 00:08:29.670 --> 00:08:32.850 teenager and wanting so desperately to fit in 00:08:32.850 --> 00:08:36.950 with friends and not be different and not be 00:08:36.950 --> 00:08:40.669 sick and not miss out on activities and school 00:08:40.669 --> 00:08:44.480 things. At that time, they put me on high -dose 00:08:44.480 --> 00:08:47.279 prednisone, and I was on it for a good nine months. 00:08:47.440 --> 00:08:49.500 And that's when we started talking about potentially 00:08:49.500 --> 00:08:53.799 having some surgery. Now, you mentioned absence 00:08:53.799 --> 00:08:57.740 from school was sort of one way of how this disease 00:08:57.740 --> 00:08:59.700 or living with the disease manifested in your 00:08:59.700 --> 00:09:04.000 life. Ages 9 to 15, it's quite a crucial time, 00:09:04.159 --> 00:09:06.240 right, as you move slowly into young adulthood. 00:09:06.919 --> 00:09:11.039 So again, before sort of the term surgery got 00:09:11.039 --> 00:09:14.419 tossed around, How did you as a child navigate 00:09:14.419 --> 00:09:18.259 this part, you know, physically in one way, we 00:09:18.259 --> 00:09:22.480 talked about it, but also mentally? As I started 00:09:22.480 --> 00:09:25.220 to understand the chronicity of what was going 00:09:25.220 --> 00:09:28.279 on, that like this was not going away, this was 00:09:28.279 --> 00:09:30.860 going to be something that I had to learn to 00:09:30.860 --> 00:09:38.200 deal with. That was because those years are so 00:09:38.200 --> 00:09:44.620 crucial to self -esteem. to autonomy, those types 00:09:44.620 --> 00:09:48.340 of things. It impacted me really greatly. I felt 00:09:48.340 --> 00:09:54.019 very different from my friends. I felt as if 00:09:54.019 --> 00:09:58.279 even teachers and my parents' friends, everybody 00:09:58.279 --> 00:10:02.159 kind of looked at me as if I was broken, treated 00:10:02.159 --> 00:10:06.879 me with kid gloves. You know, mental health, 00:10:07.059 --> 00:10:09.720 particularly in children, was not talked about 00:10:09.720 --> 00:10:13.960 at that time. I remember a time when I was in 00:10:13.960 --> 00:10:16.100 the hospital again, you know, for those three 00:10:16.100 --> 00:10:19.120 months, I was on total bowel rest on TPN. I was 00:10:19.120 --> 00:10:20.740 not allowed to eat. I couldn't even have ice 00:10:20.740 --> 00:10:25.409 chips. And I became very fixated on food because 00:10:25.409 --> 00:10:28.309 to me, that was the most traumatic part of being 00:10:28.309 --> 00:10:29.909 in the hospital was that I wasn't allowed to 00:10:29.909 --> 00:10:33.490 eat anything. So they had child life specialists 00:10:33.490 --> 00:10:36.370 at the hospital. I spent a lot of time in sort 00:10:36.370 --> 00:10:38.450 of what they called the child life room. There 00:10:38.450 --> 00:10:42.730 was a stove in there and I would bake. That was 00:10:42.730 --> 00:10:44.889 like a form of therapy. They helped me bake cookies 00:10:44.889 --> 00:10:47.330 and cakes and things and the other patients got 00:10:47.330 --> 00:10:50.419 to eat them and I did not. I would cut out pictures 00:10:50.419 --> 00:10:54.759 of food from magazines and glue them or tape 00:10:54.759 --> 00:10:57.000 them to pieces of construction paper, and they 00:10:57.000 --> 00:10:59.259 were plastered all over the walls of my hospital 00:10:59.259 --> 00:11:02.480 room. You know, once I was discharged from the 00:11:02.480 --> 00:11:07.039 hospital, I remember going to birthday parties, 00:11:07.059 --> 00:11:09.240 sleepovers for friends, and having to bring my 00:11:09.240 --> 00:11:12.480 own special milk. And if pizza was being served, 00:11:12.559 --> 00:11:15.320 I had to take the cheese off of it and, you know. 00:11:16.080 --> 00:11:18.919 Those dietary changes were very traumatic as 00:11:18.919 --> 00:11:21.139 a kid because, again, you just want to fit in. 00:11:21.919 --> 00:11:24.720 Missing school, never knowing if I was going 00:11:24.720 --> 00:11:26.779 to feel well enough to participate in whatever 00:11:26.779 --> 00:11:28.960 it was that was coming up for school, you know, 00:11:28.960 --> 00:11:31.320 whether it be a field day or a field trip or 00:11:31.320 --> 00:11:37.480 something like that. Never once at that age were 00:11:37.480 --> 00:11:39.960 we offered the opportunity to meet with like 00:11:39.960 --> 00:11:42.860 a child psychologist, which I think is just a 00:11:42.860 --> 00:11:44.940 travesty. And I'm so glad that that is not the 00:11:44.940 --> 00:11:47.820 case now. But, you know, so it was kind of me 00:11:47.820 --> 00:11:50.799 and my own coping mechanisms. And admittedly, 00:11:50.799 --> 00:11:55.159 they weren't the best. I was a very noncompliant 00:11:55.159 --> 00:11:59.309 teenager. often would not take my medicine and 00:11:59.309 --> 00:12:01.590 I would do things like hide it in plants and 00:12:01.590 --> 00:12:04.549 told my parents I had taken it. It was kind of 00:12:04.549 --> 00:12:07.190 my form of rebellion, but I think also my way 00:12:07.190 --> 00:12:15.210 of sort of trying to punish my body because it 00:12:15.210 --> 00:12:17.210 wasn't doing what it was supposed to do. It was 00:12:17.210 --> 00:12:19.289 kind of a self -destructive type thing. I didn't 00:12:19.289 --> 00:12:22.139 understand it as that at the time. But looking 00:12:22.139 --> 00:12:25.220 back and having done therapy as an adult, I very 00:12:25.220 --> 00:12:27.539 much now recognize that that was part of what 00:12:27.539 --> 00:12:30.519 was going on. You were not old enough to understand 00:12:30.519 --> 00:12:32.899 that it's okay to be angry at your body, but 00:12:32.899 --> 00:12:35.559 then also not forget that having your body is 00:12:35.559 --> 00:12:38.200 giving you actually the opportunity to fight 00:12:38.200 --> 00:12:41.460 back, right? Or to do whatever you can physically 00:12:41.460 --> 00:12:44.700 to fight this disease. Yeah. Okay. So you basically 00:12:44.700 --> 00:12:48.059 were left to... I remember. Right. Yeah. I was 00:12:48.059 --> 00:12:52.220 very angry. And it wasn't until I was well into 00:12:52.220 --> 00:12:56.320 early adulthood, I think I was 19 years old, 00:12:56.360 --> 00:12:59.879 and that was the first time a health care practitioner 00:12:59.879 --> 00:13:03.700 gave me permission to be angry about what was 00:13:03.700 --> 00:13:06.659 happening to me and what had happened. And that 00:13:06.659 --> 00:13:09.679 moment in time, I remember it like it was yesterday. 00:13:09.840 --> 00:13:13.600 It totally changed the entire trajectory of my 00:13:13.600 --> 00:13:18.090 life. my way of managing and accepting my disease. 00:13:18.710 --> 00:13:23.129 Because as a child, I was very much told, you're 00:13:23.129 --> 00:13:26.110 strong, you can do this. You know, I became everyone 00:13:26.110 --> 00:13:29.590 else's sort of inspiration porn. You know, everybody 00:13:29.590 --> 00:13:33.649 would talk about, oh, she's so strong. And internally, 00:13:34.389 --> 00:13:36.789 you know, I internalized that and that became 00:13:36.789 --> 00:13:41.350 my mantra. I'm strong, I can do this. And because 00:13:41.350 --> 00:13:45.279 of that, I never made my emotional needs known, 00:13:45.419 --> 00:13:48.159 never would talk to my parents about how I was 00:13:48.159 --> 00:13:52.779 feeling, never would admit that I was scared, 00:13:52.899 --> 00:13:58.779 that I was broken inside and didn't have even 00:13:58.779 --> 00:14:02.620 the vocabulary at that young age to really name 00:14:02.620 --> 00:14:04.940 the emotions, just knew that inside of me was 00:14:04.940 --> 00:14:08.240 like a swirling tempest, but I kept suppressing 00:14:08.240 --> 00:14:10.100 it because I was strong. That's what I was told. 00:14:10.179 --> 00:14:12.139 I was strong. You can do this. You have to fight. 00:14:12.740 --> 00:14:16.539 So a change of mindset kicking in around the 00:14:16.539 --> 00:14:18.820 age of 19, but there's a little gap here that 00:14:18.820 --> 00:14:20.639 we haven't talked about yet, right? Between ages 00:14:20.639 --> 00:14:24.220 14 and 19. So can you take us briefly through 00:14:24.220 --> 00:14:27.419 that period? And you mentioned it before, surgery, 00:14:27.700 --> 00:14:31.059 right? At 15, again, freshman in high school, 00:14:31.240 --> 00:14:35.779 I... I was in the doctor's office and that was 00:14:35.779 --> 00:14:37.879 the first time the word surgery was mentioned. 00:14:38.019 --> 00:14:40.840 And the surgery that they were talking about 00:14:40.840 --> 00:14:45.259 was going to be a J pouch. So an internal reservoir, 00:14:45.600 --> 00:14:49.639 ileal, anal pouch and astimosis. And with the 00:14:49.639 --> 00:14:52.100 caveat that I would have a diverting ostomy as 00:14:52.100 --> 00:14:55.320 that was formed and healed. And then I would 00:14:55.320 --> 00:14:57.620 wear the ostomy for about three months and then 00:14:57.620 --> 00:14:59.200 they would connect the J pouch and I would go 00:14:59.200 --> 00:15:02.730 to the bathroom normally. I remember very much 00:15:02.730 --> 00:15:06.149 thinking, this is it. This is my answer. You 00:15:06.149 --> 00:15:10.450 know, I'm 15. I'm on steroids. I can't live the 00:15:10.450 --> 00:15:14.110 life that I want. They're offering me a chance 00:15:14.110 --> 00:15:17.750 to be better. And I begged my parents. I said, 00:15:17.789 --> 00:15:20.350 please let me have the surgery. And my parents 00:15:20.350 --> 00:15:23.669 were very much of the mindset that they were 00:15:23.669 --> 00:15:26.549 hopeful that, you know, at that time, There was 00:15:26.549 --> 00:15:29.029 some sort of research break, you know, right 00:15:29.029 --> 00:15:30.549 around the corner. There was going to be a new 00:15:30.549 --> 00:15:32.409 medication that was somehow going to help me. 00:15:33.389 --> 00:15:35.549 Something was going to happen and nobody was 00:15:35.549 --> 00:15:38.009 going to have to cut on their baby girl. And 00:15:38.009 --> 00:15:44.190 I very much pushed for surgery. I just wanted 00:15:44.190 --> 00:15:47.379 to be better. And if I had to wear an ostomy 00:15:47.379 --> 00:15:50.279 or a bag, as I would call it at that time for 00:15:50.279 --> 00:15:52.019 three months, I was more than willing to do that. 00:15:52.100 --> 00:15:54.519 Now, mind you, I'd never seen an ostomy. I'd 00:15:54.519 --> 00:15:57.000 never talked to anybody who had an ostomy. So 00:15:57.000 --> 00:15:59.299 when they're telling me you're going to be wearing 00:15:59.299 --> 00:16:01.720 a bag on your side, I mean, I literally pictured 00:16:01.720 --> 00:16:07.159 like a grocery bag right here on my side, like 00:16:07.159 --> 00:16:09.279 not even on the front of my abdomen. But I was 00:16:09.279 --> 00:16:13.879 so desperate to be normal as a teenager. I was 00:16:13.879 --> 00:16:16.960 more than willing to do that. And at age 15, 00:16:17.200 --> 00:16:21.019 I went in, had a total colectomy and a J -pouch 00:16:21.019 --> 00:16:24.240 formation and a temporary diverting ileostomy. 00:16:24.639 --> 00:16:27.120 The moment they took that disease colon out of 00:16:27.120 --> 00:16:28.779 there, and I was told afterwards that it was 00:16:28.779 --> 00:16:30.740 a good thing that I chose to have elective surgery, 00:16:30.899 --> 00:16:33.019 because had I not, I probably would have had 00:16:33.019 --> 00:16:35.639 emergency surgery a month or two later because 00:16:35.639 --> 00:16:39.500 I was very close to toxic megacolon. So I immediately 00:16:39.500 --> 00:16:42.159 felt better. My body felt better. I can't even 00:16:42.159 --> 00:16:46.070 describe it to you. It just was different. Like 00:16:46.070 --> 00:16:49.929 you don't realize how sick you are until you're 00:16:49.929 --> 00:16:55.230 not sick anymore. So what for me, it was such 00:16:55.230 --> 00:16:57.850 a dichotomy because up until surgery, I was very, 00:16:57.929 --> 00:17:00.870 very excited about this and very looking forward 00:17:00.870 --> 00:17:03.730 to being well and getting back to my life. And 00:17:03.730 --> 00:17:08.630 then afterwards, very sharp change in my mood 00:17:08.630 --> 00:17:16.539 and my sense of hope. I was very, very blessed 00:17:16.539 --> 00:17:19.660 that a special nurse came into my life and really 00:17:19.660 --> 00:17:22.740 impacted the way that I started to see things 00:17:22.740 --> 00:17:27.440 and helped me become accepting of having an ostomy, 00:17:27.559 --> 00:17:30.740 albeit temporary. You know, that to me, that 00:17:30.740 --> 00:17:32.980 was the caveat that, well, I can learn to do 00:17:32.980 --> 00:17:36.000 anything for three months. And then the spring 00:17:36.000 --> 00:17:39.339 of my sophomore year of high school, started 00:17:39.339 --> 00:17:42.640 developing really bad back pain, high fevers. 00:17:44.220 --> 00:17:47.440 And, you know, nobody could really figure out 00:17:47.440 --> 00:17:50.480 what's going on. Long story short, I ended up 00:17:50.480 --> 00:17:54.299 in the hospital and they did some exploratory 00:17:54.299 --> 00:17:57.619 surgery, discovered that the J pouch had developed 00:17:57.619 --> 00:18:02.579 a small leak at the site of the anastomosis or 00:18:02.579 --> 00:18:06.000 where it's connected to the small bowel and the 00:18:06.000 --> 00:18:09.609 rectal area. And I had a very large abscess that 00:18:09.609 --> 00:18:14.930 had grown around my coccyx and had cost them 00:18:14.930 --> 00:18:20.250 osteomyelitis or a bone infection. So they gave 00:18:20.250 --> 00:18:23.069 me another diverting ostomy so that that could 00:18:23.069 --> 00:18:26.210 all be cleaned up and cleaned out. I went home 00:18:26.210 --> 00:18:30.410 that summer on IV antibiotics, was able to finish 00:18:30.410 --> 00:18:33.990 school for that year with a tutor at home. And 00:18:33.990 --> 00:18:37.960 then by that August, Everything had kind of cleared 00:18:37.960 --> 00:18:41.220 up. We went back in, reconnected the J pouch. 00:18:41.539 --> 00:18:44.859 And I did pretty well from that point on until 00:18:44.859 --> 00:18:50.880 I was a freshman in college. And then I was dealing 00:18:50.880 --> 00:18:54.160 with constant pouchitis. I had developed another 00:18:54.160 --> 00:19:00.900 leak in the pouch. And I was young. I was a teenager. 00:19:01.140 --> 00:19:06.420 I had not yet learned that. this was going to 00:19:06.420 --> 00:19:09.339 be chronic, right? I think that that is such 00:19:09.339 --> 00:19:11.279 a hard thing for people to understand, especially 00:19:11.279 --> 00:19:13.220 when it happens young, that this is something 00:19:13.220 --> 00:19:14.980 you're going to have to learn to manage for the 00:19:14.980 --> 00:19:21.960 rest of your life. So at 19, in college, still 00:19:21.960 --> 00:19:27.960 very much trying to punish my body. I did not 00:19:27.960 --> 00:19:31.940 live. a great lifestyle for someone who was chronically 00:19:31.940 --> 00:19:35.680 ill and had health issues to manage. So long 00:19:35.680 --> 00:19:38.559 story short, I got home on a Tuesday evening. 00:19:38.660 --> 00:19:41.940 And by that Thursday, I was in emergency surgery 00:19:41.940 --> 00:19:48.839 and woke up, had an ostomy. My dad was there. 00:19:50.099 --> 00:19:53.339 We manage things with humor in my home. So, you 00:19:53.339 --> 00:19:56.460 know, my first question was, do I have, do I 00:19:56.460 --> 00:20:00.019 have a bag? And, um, he said to me, he's like, 00:20:00.160 --> 00:20:10.440 well, he's like, the good news is you have an 00:20:10.440 --> 00:20:13.980 ostomy. And I'm like, well, what that that's 00:20:13.980 --> 00:20:17.000 the good news. I don't understand. I said, what's 00:20:17.000 --> 00:20:18.700 the bad news? And he said, well, the bad news 00:20:18.700 --> 00:20:22.700 is the breast implants didn't take. So, you know, 00:20:22.700 --> 00:20:27.539 at 19, that was a. You know, that was funny. 00:20:28.359 --> 00:20:35.059 But I, you know, at 19, thinking about, like, 00:20:35.119 --> 00:20:37.579 is this now going to be permanent? And that was 00:20:37.579 --> 00:20:39.980 my first question for the surgeon was, is this 00:20:39.980 --> 00:20:41.359 going to be permanent? And he said, well, you're 00:20:41.359 --> 00:20:43.279 going to have it for a while. And I said, well, 00:20:43.319 --> 00:20:45.299 how long is a while? And he said, well, how long 00:20:45.299 --> 00:20:49.359 is a piece of string? And I thought, okay, you 00:20:49.359 --> 00:20:55.200 know, like. I need to know. I need to have a 00:20:55.200 --> 00:20:58.220 mindset of, you know, what's next? What do I 00:20:58.220 --> 00:21:00.859 have to worry about? So long story short, it 00:21:00.859 --> 00:21:05.460 did become permanent. And at that time, that 00:21:05.460 --> 00:21:09.819 is when someone from the medical field finally 00:21:09.819 --> 00:21:13.339 gave me permission to be angry and upset. And 00:21:13.339 --> 00:21:15.359 I remember exactly what she said to me. She said, 00:21:15.480 --> 00:21:19.299 you are very angry and you are punishing your 00:21:19.299 --> 00:21:21.640 body. She said, I want you to know it's okay 00:21:21.640 --> 00:21:23.720 for you to be angry. She said, but what you do 00:21:23.720 --> 00:21:26.079 with that anger is going to determine how you 00:21:26.079 --> 00:21:30.980 live the rest of your life. And that was the 00:21:30.980 --> 00:21:33.559 moment. You know, there had been moments up until 00:21:33.559 --> 00:21:37.240 then. I had, as a teenager, attended a camp for 00:21:37.240 --> 00:21:40.039 kids with bowel and bladder diseases and disorders 00:21:40.039 --> 00:21:43.220 and ostomies. And I'd made friends there like 00:21:43.220 --> 00:21:45.700 myself. It was the first time I'd ever met another 00:21:45.700 --> 00:21:48.799 teenager who struggled with what I struggled 00:21:48.799 --> 00:21:52.460 with, who had chronic health issues. That was 00:21:52.460 --> 00:21:56.019 life -changing for me. But that's only once a 00:21:56.019 --> 00:21:59.779 year. So when I would come home, then I would 00:21:59.779 --> 00:22:04.890 fall back into... destructive behaviors and being 00:22:04.890 --> 00:22:09.049 very angry at my body and not accepting and learning 00:22:09.049 --> 00:22:12.630 that this is the only body I get and I've got 00:22:12.630 --> 00:22:17.609 to learn to treat it with kindness and take care 00:22:17.609 --> 00:22:22.289 of it. Yeah. So you woke up around age 15 after 00:22:22.289 --> 00:22:25.730 your first surgery feeling this sense of relief. 00:22:26.029 --> 00:22:28.990 However, that relief didn't last very long and 00:22:28.990 --> 00:22:32.480 you never really had a chance at a regularly 00:22:32.480 --> 00:22:35.660 normal life you know with your jay pouch clearly 00:22:35.660 --> 00:22:40.380 so at that point then around 19 you know when 00:22:40.380 --> 00:22:42.700 you when you've finally had the ostomy and you 00:22:42.700 --> 00:22:44.420 knew it was going to be permanent was that the 00:22:44.420 --> 00:22:49.119 moment where you actually started to have a normal 00:22:49.119 --> 00:22:51.880 life your normal life back or to start a new 00:22:51.880 --> 00:22:55.400 life and and and then has it ever since then 00:22:55.400 --> 00:22:58.549 with your ostomy you've been living with it this 00:22:58.549 --> 00:23:02.430 way until now, or any other sort of setbacks 00:23:02.430 --> 00:23:07.190 or challenges that you experienced? Lots of challenges 00:23:07.190 --> 00:23:09.329 and setbacks since then. So the ostomy became 00:23:09.329 --> 00:23:13.609 permanent at 19. And that was sort of the eye 00:23:13.609 --> 00:23:17.480 -opening moment that like... okay, this is permanent. 00:23:17.619 --> 00:23:20.119 This is going to be for the rest of my life. 00:23:20.319 --> 00:23:22.579 I, of course, had all kinds of questions about 00:23:22.579 --> 00:23:25.119 what was that life going to look like? Am I going 00:23:25.119 --> 00:23:27.980 to date? Am I going to get married? Am I going 00:23:27.980 --> 00:23:29.759 to be able to have a child? What about a career? 00:23:29.980 --> 00:23:34.279 All of those things. And one of the ways that 00:23:34.279 --> 00:23:37.660 the disease affected my life was that I didn't 00:23:37.660 --> 00:23:39.359 get to finish college right out of high school. 00:23:40.109 --> 00:23:42.829 When I came home from school that second year 00:23:42.829 --> 00:23:47.509 and had emergency surgery, it was a time where 00:23:47.509 --> 00:23:50.210 my parents were going through a pretty tumultuous 00:23:50.210 --> 00:23:54.950 divorce. And what happened was that my dad ended 00:23:54.950 --> 00:23:56.990 up dropping me from his health care insurance. 00:23:58.230 --> 00:24:02.950 So as someone who was 19 in school, needed ostomy 00:24:02.950 --> 00:24:06.630 supplies every month to be able to live, was 00:24:06.630 --> 00:24:10.289 on medications. Being at school, being able to 00:24:10.289 --> 00:24:13.390 afford school and being able to navigate it without 00:24:13.390 --> 00:24:16.009 health care insurance was was not an option. 00:24:16.069 --> 00:24:18.829 So I didn't return to college that year, but 00:24:18.829 --> 00:24:22.529 I was able to find a job at the hospital that 00:24:22.529 --> 00:24:25.369 I had worked at or had had all of my treatment 00:24:25.369 --> 00:24:28.630 at. I was able actually to work on the very same 00:24:28.630 --> 00:24:31.250 floor with all the nurses who had taken care 00:24:31.250 --> 00:24:34.549 of me. So I worked as a nurse's aide and that 00:24:34.549 --> 00:24:38.339 was. That was really key to my healing as well. 00:24:38.640 --> 00:24:42.140 I think being around other young patients and 00:24:42.140 --> 00:24:43.859 helping to take care of them, you know, sort 00:24:43.859 --> 00:24:46.779 of my way of giving back was very therapeutic 00:24:46.779 --> 00:24:50.119 and cathartic for me. And that was transformational 00:24:50.119 --> 00:24:54.180 in terms of reconfirming to me that I eventually 00:24:54.180 --> 00:24:59.740 wanted to be a nurse and in caring for them and 00:24:59.740 --> 00:25:03.299 learning to take care of these kids as a nurse's 00:25:03.299 --> 00:25:05.539 aide. It helped me learn how to take care of 00:25:05.539 --> 00:25:11.140 myself. So I was working at the hospital. I met 00:25:11.140 --> 00:25:15.980 someone who eventually became my husband. We 00:25:15.980 --> 00:25:19.519 did eventually have a baby, even though I was 00:25:19.519 --> 00:25:22.519 told that that was not going to be possible. 00:25:23.039 --> 00:25:28.740 I did have a baby. She's 22 now. That was sort 00:25:28.740 --> 00:25:31.680 of my little miracle moment. My body that had... 00:25:33.039 --> 00:25:36.259 had constantly let me down and I felt like had 00:25:36.259 --> 00:25:40.779 failed me for that nine -month moment in time, 00:25:40.940 --> 00:25:43.119 it really kind of did what it was supposed to 00:25:43.119 --> 00:25:46.559 do. And that, again, I think also was huge in 00:25:46.559 --> 00:25:52.019 me learning to treat myself with loving kindness 00:25:52.019 --> 00:25:56.200 and to value what my body could do instead of 00:25:56.200 --> 00:25:59.720 focusing on what it hadn't been doing for years. 00:26:00.380 --> 00:26:03.420 My bowel disease at that point was in remission, 00:26:03.420 --> 00:26:08.279 and I haven't really had a flare of bowel disease 00:26:08.279 --> 00:26:11.039 since then. Now, I was re -diagnosed with Crohn's 00:26:11.039 --> 00:26:15.140 disease after I went back to the ostomy, and 00:26:15.140 --> 00:26:17.259 we did some more testing on the J pouch that 00:26:17.259 --> 00:26:21.240 was still there in my pelvis. I was diagnosed 00:26:21.240 --> 00:26:23.480 with Crohn's disease, which explains why the 00:26:23.480 --> 00:26:26.869 J pouch did not work. So that was always kind 00:26:26.869 --> 00:26:28.589 of in the back of my mind that, OK, I've got 00:26:28.589 --> 00:26:31.369 Crohn's disease. I'm doing really well. But it's 00:26:31.369 --> 00:26:34.069 always kind of a sleeping giant in my life, you 00:26:34.069 --> 00:26:35.670 know, never knowing if it's going to rear its 00:26:35.670 --> 00:26:40.150 ugly head. Most of my complications since then 00:26:40.150 --> 00:26:46.549 have been sort of IBD adjacent. So having the 00:26:46.549 --> 00:26:50.460 ostomy. And having had so many surgeries with 00:26:50.460 --> 00:26:54.119 the J pouches and ostomy revisions, I started 00:26:54.119 --> 00:26:58.279 to develop hernias. So I've had a couple, well, 00:26:58.400 --> 00:27:01.859 not a couple, I've had a lot of surgery to repair 00:27:01.859 --> 00:27:05.299 either ventral hernias, so along my old incisional 00:27:05.299 --> 00:27:08.539 line, or peristomal hernias around the stoma. 00:27:08.759 --> 00:27:14.220 I have had two rebuilds of my abdominal wall. 00:27:14.339 --> 00:27:17.140 So once with cadaver tissue and once with mesh 00:27:17.140 --> 00:27:20.779 which is what I have now. So lots of complications 00:27:20.779 --> 00:27:25.619 in that terms but not necessarily Crohn's disease 00:27:25.619 --> 00:27:32.019 directly. I do still battle the extraintestinal 00:27:32.019 --> 00:27:34.759 manifestations of inflammatory bowel disease. 00:27:34.920 --> 00:27:38.059 So over the years, I've had bouts with pyoderma 00:27:38.059 --> 00:27:42.940 granganosum. I've had uveitis in my eyes, lots 00:27:42.940 --> 00:27:46.680 of different skin issues, hydradenitis, you know, 00:27:46.680 --> 00:27:49.640 all sort of directly related to inflammatory 00:27:49.640 --> 00:27:53.640 bowel disease. But miraculously, my small intestine 00:27:53.640 --> 00:27:56.200 has been good and I've not had any actual bowel 00:27:56.200 --> 00:28:02.680 disease for close to almost 30 years. At least. 00:28:02.779 --> 00:28:05.480 Yeah. At least that. You've at least been given 00:28:05.480 --> 00:28:08.900 that gift. At least that. Being able to manage 00:28:08.900 --> 00:28:12.640 that, right? And also managing your Crohn's that 00:28:12.640 --> 00:28:15.819 came on top of the colitis diagnosis. So you 00:28:15.819 --> 00:28:19.700 really almost, to put it in an almost funny way, 00:28:19.759 --> 00:28:25.160 you did it all. Yeah, I have. I always laugh, 00:28:25.220 --> 00:28:29.420 you know, working where I do at the hospital. 00:28:30.859 --> 00:28:32.700 My co -workers often say to me, they're like, 00:28:32.759 --> 00:28:35.740 well, when they learn my story and know how much 00:28:35.740 --> 00:28:37.160 I've been through, they're like, well, you don't 00:28:37.160 --> 00:28:38.700 look like you've gone through any of that. And 00:28:38.700 --> 00:28:40.519 I'm like, well, good. That's good. I don't want 00:28:40.519 --> 00:28:43.579 to look like I've suffered all that trauma. But 00:28:43.579 --> 00:28:47.299 I do find it interesting and almost, to me, a 00:28:47.299 --> 00:28:49.740 blessing that, you know, when I come in contact 00:28:49.740 --> 00:28:52.579 with other patients. I've experienced a lot. 00:28:52.680 --> 00:28:55.980 So I have, you know, I can speak into their journey 00:28:55.980 --> 00:28:59.079 and hopefully offer some wisdom and advice along, 00:28:59.259 --> 00:29:02.359 you know, to help give them some comfort. And 00:29:02.359 --> 00:29:06.779 yeah, so yeah, lived through a lot, but I'm still 00:29:06.779 --> 00:29:11.880 here. And that, you know, I remember when I reached 00:29:11.880 --> 00:29:15.980 age 40 and I had just a day where I just cried 00:29:15.980 --> 00:29:18.720 because I never thought that I would see 30 years 00:29:18.720 --> 00:29:22.750 old. Sorry, 40 years old. And I am now three 00:29:22.750 --> 00:29:27.009 weeks from my 50th birthday. And every single 00:29:27.009 --> 00:29:29.970 day is a gift, even with an ostomy, even with 00:29:29.970 --> 00:29:33.849 other health challenges. Every single day is 00:29:33.849 --> 00:29:40.430 a gift. If we have someone whose IBD journey 00:29:40.430 --> 00:29:43.910 is not going very well, who might be facing surgery 00:29:43.910 --> 00:29:47.190 or certain to face surgery, but who's very afraid. 00:29:47.799 --> 00:29:51.220 of not just having a surgery, but then also living 00:29:51.220 --> 00:29:57.359 a life with an ostomy. Just very bluntly, what's 00:29:57.359 --> 00:30:02.660 your message to those people? My message to those 00:30:02.660 --> 00:30:07.140 people is that it's okay to be angry. It's okay 00:30:07.140 --> 00:30:10.819 to be in a place where you're not sure if you 00:30:10.819 --> 00:30:13.720 can accept what's going on with you or what could 00:30:13.720 --> 00:30:17.079 happen to you. But like was told to me, you know, 00:30:17.079 --> 00:30:19.220 your mindset and what you choose to do with that 00:30:19.220 --> 00:30:21.240 anger is going to be instrumental in whether 00:30:21.240 --> 00:30:25.259 or not you recover and go on to live the life 00:30:25.259 --> 00:30:30.220 that you dream about. There is nothing that you 00:30:30.220 --> 00:30:35.279 can't do with an ostomy unless it's self -limiting, 00:30:35.359 --> 00:30:38.579 you know, unless you tell yourself that you can't 00:30:38.579 --> 00:30:41.839 do it. It won't be easy. I won't lie to you and 00:30:41.839 --> 00:30:45.009 tell you that it will be easy. But I will tell 00:30:45.009 --> 00:30:47.910 you, find yourself a support system. Meet other 00:30:47.910 --> 00:30:53.009 patients. I cannot stress enough meeting patients 00:30:53.009 --> 00:30:54.750 like yourself, whether you're going to have surgery 00:30:54.750 --> 00:30:57.569 or whether you're dealing, you know, strictly 00:30:57.569 --> 00:30:59.970 with inflammatory bowel disease or any other 00:30:59.970 --> 00:31:02.349 kind of chronic condition. Meeting people who 00:31:02.349 --> 00:31:04.730 understand and you have that instant camaraderie 00:31:04.730 --> 00:31:08.309 is really key, I think, to rehabilitation. And 00:31:08.309 --> 00:31:10.190 that is one of the things that I have said all 00:31:10.190 --> 00:31:13.619 along is that. Initially being able to meet someone 00:31:13.619 --> 00:31:17.200 who we had this immediate, there wasn't a need 00:31:17.200 --> 00:31:21.099 to explain. There wasn't a need to, you know, 00:31:21.099 --> 00:31:23.900 there was no presupposition. We just went into 00:31:23.900 --> 00:31:27.259 the situation where we knew that. we would support 00:31:27.259 --> 00:31:29.559 each other, that that's what we were there for. 00:31:30.200 --> 00:31:33.299 So, you know, find your tribe, meet some other 00:31:33.299 --> 00:31:38.299 patients like yourself that you can commiserate 00:31:38.299 --> 00:31:43.400 with, but also support and lift up. You know, 00:31:43.420 --> 00:31:48.099 giving back is huge in terms of healing. I think 00:31:48.099 --> 00:31:50.460 for me, it has been instrumental. I know for 00:31:50.460 --> 00:31:54.230 so many other patients. The ability to take something 00:31:54.230 --> 00:31:57.529 negative and turn it into a positive makes a 00:31:57.529 --> 00:32:01.730 huge difference in your mindset and how you feel 00:32:01.730 --> 00:32:05.490 when you get up every morning and decide what's 00:32:05.490 --> 00:32:08.349 my day going to look like. If I can in some way 00:32:08.349 --> 00:32:12.470 use something that is negative in my life or 00:32:12.470 --> 00:32:14.710 that I have overcome to help somebody else do 00:32:14.710 --> 00:32:18.009 the same, I think that's why we're all here, 00:32:18.069 --> 00:32:20.880 right? We're all here to lift each other up and 00:32:20.880 --> 00:32:22.779 to kind of, you know, walk each other through 00:32:22.779 --> 00:32:28.160 this life. Disease or not disease. I think here 00:32:28.160 --> 00:32:30.940 it's pretty safe to say, if you can do it, you 00:32:30.940 --> 00:32:32.700 know, after everything that you've went through, 00:32:32.799 --> 00:32:35.380 which is definitely, I'd say, not the norm, I 00:32:35.380 --> 00:32:38.339 think then other people can at least find inspiration 00:32:38.339 --> 00:32:40.920 to listen to your stories, look at your story 00:32:40.920 --> 00:32:44.059 and say, okay, she's been through this, so I 00:32:44.059 --> 00:32:47.559 can at least... try and manage what I'm going 00:32:47.559 --> 00:32:52.339 through as well. So that's your message to others 00:32:52.339 --> 00:32:55.579 out there struggling with IBD. To bring it full 00:32:55.579 --> 00:32:58.839 circle, I'd now be interested to know from you, 00:32:58.920 --> 00:33:03.319 and I kind of have a hunch of what you might 00:33:03.319 --> 00:33:05.799 say, what you're going to say, but if you go 00:33:05.799 --> 00:33:09.680 back to that nine -year -old who tried to hide 00:33:09.680 --> 00:33:12.839 her symptoms from her parents, and if you could 00:33:12.839 --> 00:33:17.180 go back in time, what would you tell? You make 00:33:17.180 --> 00:33:21.859 me cry. I think about her a lot. You know, I 00:33:21.859 --> 00:33:24.859 have thought about her over the years. And I 00:33:24.859 --> 00:33:27.700 think now is, you know, like I said, I'm about 00:33:27.700 --> 00:33:30.920 to turn 50. And having never thought that that 00:33:30.920 --> 00:33:34.180 I would make it to this age, I would just encourage 00:33:34.180 --> 00:33:40.980 her and tell her that it's not going to be easy, 00:33:41.079 --> 00:33:45.529 but it's going to be worth it. You know, every 00:33:45.529 --> 00:33:48.930 challenge that I have endured, every time that 00:33:48.930 --> 00:33:51.289 I have not wanted to get out of bed, but I get 00:33:51.289 --> 00:33:54.869 up and put on clothes and put on makeup, it has 00:33:54.869 --> 00:34:00.250 been worth it. Every single day is a gift. And 00:34:00.250 --> 00:34:04.089 I would tell her I'm sorry that she didn't get 00:34:04.089 --> 00:34:08.239 to have a childhood. but that later in life people 00:34:08.239 --> 00:34:10.539 will help her work through that and that she 00:34:10.539 --> 00:34:14.239 gets to have such an amazing adulthood using 00:34:14.239 --> 00:34:21.260 her experiences to help others along their journey. 00:34:21.800 --> 00:34:26.599 Yeah, I could have at nine never imagined all 00:34:26.599 --> 00:34:30.400 of the... All of the amazing blessings that would 00:34:30.400 --> 00:34:34.480 have come from a diagnosis like this. So I just 00:34:34.480 --> 00:34:37.980 want her to know that she is strong. You know, 00:34:38.019 --> 00:34:41.480 she is that strong girl that everybody told her 00:34:41.480 --> 00:34:47.239 she had to be. And that she goes on and she does 00:34:47.239 --> 00:34:52.420 good things. Good things come from the bad. And 00:34:52.420 --> 00:34:55.840 frankly, that nine -year -old girl would go on 00:34:55.840 --> 00:34:59.539 to... become a very resilient human being and 00:34:59.539 --> 00:35:04.039 persist as well so with that kristen i want to 00:35:04.039 --> 00:35:05.840 thank you so much for taking the time to open 00:35:05.840 --> 00:35:08.780 up and share your story i think there's a lot 00:35:08.780 --> 00:35:11.980 of inspiration to extract from here and again 00:35:11.980 --> 00:35:15.940 this word resilience gets tossed around a lot 00:35:15.940 --> 00:35:18.099 these days but i think this is definitely also 00:35:18.099 --> 00:35:20.500 truly a story of of resilience and persistence 00:35:20.500 --> 00:35:23.869 so i really do believe that people who listen 00:35:23.869 --> 00:35:26.030 to this, people who watch this will be able to 00:35:26.030 --> 00:35:28.610 draw a lot of inspiration, you know, and sort 00:35:28.610 --> 00:35:32.570 of dive deeper into their own, well, IBD miseries 00:35:32.570 --> 00:35:36.510 and find the strength to still, you know, continue 00:35:36.510 --> 00:35:39.590 to look for the light at the end of the tunnel 00:35:39.590 --> 00:35:42.469 and then hopefully also find it. So for you, 00:35:42.489 --> 00:35:44.250 I can only tell you, I wish you the best moving 00:35:44.250 --> 00:35:46.409 forward. And thanks so much for being us here 00:35:46.409 --> 00:35:48.699 today. It's really been a pleasure. Good luck 00:35:48.699 --> 00:35:50.880 to you. Thank you so much for having me. I really 00:35:50.880 --> 00:35:53.099 appreciate the chance to share my story. And 00:35:53.099 --> 00:35:57.380 I hope that someone finds it impactful. And like 00:35:57.380 --> 00:35:59.159 you said, I don't want anybody to compare themselves 00:35:59.159 --> 00:36:03.480 to me or my journey. And I fully recognize everything 00:36:03.480 --> 00:36:08.260 that you are going through and how it impacts 00:36:08.260 --> 00:36:11.539 your life. But I want to offer that encouragement. 00:36:11.539 --> 00:36:14.710 And I hope that my story has done that. That's 00:36:14.710 --> 00:36:17.329 it for today's episode of Talking S***, presented 00:36:17.329 --> 00:36:20.690 by Colitis Unfiltered. I'm Frank Klebering, and 00:36:20.690 --> 00:36:23.789 if this hit home or hit your gut, do us a favor, 00:36:23.909 --> 00:36:26.929 subscribe to the show and follow us at Colitis 00:36:26.929 --> 00:36:30.369 Unfiltered on YouTube, Substack, Instagram, Threads, 00:36:30.369 --> 00:36:33.570 TikTok and Reddit. We'll see you soon for more 00:36:33.570 --> 00:36:35.389 inspiring stories from the bathroom floor.