WEBVTT 00:00:02.359 --> 00:00:06.440 It's given me a lot of perspective on life and 00:00:06.440 --> 00:00:11.660 I think also like resilience just in like my 00:00:11.660 --> 00:00:16.239 daily life things because nothing I go through 00:00:16.239 --> 00:00:20.300 feels as bad as what IBD has put me through. 00:00:20.399 --> 00:00:23.339 So I just feel like I'm able to get through those 00:00:23.339 --> 00:00:25.379 things because I've already been through worse. 00:00:26.120 --> 00:00:29.050 This is Sarah. who after eight long years of 00:00:29.050 --> 00:00:31.649 suffering, finally got diagnosed with ulcerative 00:00:31.649 --> 00:00:35.909 colitis at age 23 in Washington, D .C. Sarah 00:00:35.909 --> 00:00:38.270 started dabbling in treatments, but the damage 00:00:38.270 --> 00:00:41.810 to her colon was already done. And in 2024, she 00:00:41.810 --> 00:00:44.350 woke up with an ostomy. Today, on the Colitis 00:00:44.350 --> 00:00:47.369 Unfiltered podcast, Sarah tells us all about 00:00:47.369 --> 00:00:50.890 her IBD journey, complications, surgery, and 00:00:50.890 --> 00:00:53.450 taking her life back. My name is Frank Tabering, 00:00:53.490 --> 00:00:56.560 and Sarah, welcome to the show. Hi, thank you 00:00:56.560 --> 00:00:59.719 so much for having me today. And thank you for 00:00:59.719 --> 00:01:02.859 taking the time to speak to me specifically about 00:01:02.859 --> 00:01:05.959 your IBD journey. Let's just go straight into 00:01:05.959 --> 00:01:08.739 it and right to the beginning. Let's start with 00:01:08.739 --> 00:01:12.480 symptoms. What was it that, you know, happened 00:01:12.480 --> 00:01:15.400 to you where you noticed that something was wrong, 00:01:15.500 --> 00:01:17.739 something was off, something that prompted you 00:01:17.739 --> 00:01:26.189 to go out and seek some medical care? very first 00:01:26.189 --> 00:01:32.250 symptom because it was very sudden and very severe. 00:01:32.549 --> 00:01:40.430 So I was about 15 and all of a sudden I became 00:01:40.430 --> 00:01:43.730 really nauseous and I had thrown up like 15 times 00:01:43.730 --> 00:01:47.400 in a day. So I went to the hospital. And was 00:01:47.400 --> 00:01:51.140 having really horrible stomach pains. And I was 00:01:51.140 --> 00:01:54.079 hospitalized for, I think, about three days. 00:01:54.219 --> 00:01:58.159 And nothing came of it. They just said, oh, your 00:01:58.159 --> 00:02:01.819 stomach hurt. Maybe you had a food infection. 00:02:02.620 --> 00:02:06.230 And then... After that, I started having recurring 00:02:06.230 --> 00:02:08.849 symptoms where I was having frequent bowel movements, 00:02:08.969 --> 00:02:12.110 a lot of stomach pain, and it would come and 00:02:12.110 --> 00:02:14.930 go. For me, for some reason, I always had flare 00:02:14.930 --> 00:02:17.969 -ups between February and August every single 00:02:17.969 --> 00:02:21.610 year. No doctor can explain why, but in the winter, 00:02:21.669 --> 00:02:23.750 I was always fine, and in the summer, I would 00:02:23.750 --> 00:02:26.530 have horrible flare -ups. And because of that, 00:02:26.710 --> 00:02:29.490 I think no one would diagnose me with ulcerative 00:02:29.490 --> 00:02:32.960 colitis. because ulcerative colitis usually doesn't 00:02:32.960 --> 00:02:37.500 follow in seasonal pattern but it was never food 00:02:37.500 --> 00:02:41.300 allergies for me and so through the years it 00:02:41.300 --> 00:02:44.620 just kept getting worse and my symptoms would 00:02:44.620 --> 00:02:47.620 worsen and I was in so much pain I would lose 00:02:47.620 --> 00:02:51.360 a ton of weight when I was in my flare -ups and 00:02:51.360 --> 00:02:53.939 that was always just really difficult for me 00:02:53.939 --> 00:02:56.379 because I always wanted to be active and I couldn't 00:02:56.379 --> 00:02:58.319 be active when I lose all this weight and I couldn't 00:02:58.319 --> 00:03:00.620 eat and I was throwing up and having so many 00:03:00.620 --> 00:03:04.879 bowel movements. So I'd go to doctors and I remember 00:03:04.879 --> 00:03:06.539 they would tell me, oh, you just have an eating 00:03:06.539 --> 00:03:08.659 disorder. And I didn't have an eating disorder, 00:03:08.879 --> 00:03:11.460 but because I became really thin and I would 00:03:11.460 --> 00:03:13.599 say I was having difficulty eating and I'm like 00:03:13.599 --> 00:03:16.560 throwing up after eating, I had several GIs telling 00:03:16.560 --> 00:03:18.919 me, oh, it's probably just an eating disorder. 00:03:19.300 --> 00:03:23.430 Over the years, I had many colonoscopies when 00:03:23.430 --> 00:03:27.750 I was in a flare and they would say that there 00:03:27.750 --> 00:03:31.210 was mild ulceration, but it's probably just IBS. 00:03:31.509 --> 00:03:34.289 I don't know why they would think it's just IBS 00:03:34.289 --> 00:03:40.930 if I had ulcers. So at about 16, I basically 00:03:40.930 --> 00:03:43.449 self -diagnosed myself with ulcerative colitis 00:03:43.449 --> 00:03:46.689 because I just knew. Based on my symptoms and 00:03:46.689 --> 00:03:49.949 research, I knew and I kept asking doctors to 00:03:49.949 --> 00:03:53.819 look into it. And I kept getting the eating disorder 00:03:53.819 --> 00:04:00.900 answer or it's just IBS. So, and then in 2021, 00:04:01.280 --> 00:04:04.620 I went to law school in Washington, D .C. And 00:04:04.620 --> 00:04:10.560 my second year into law school, I got appendicitis. 00:04:10.719 --> 00:04:14.539 And when they took out the appendix and the pathology 00:04:14.539 --> 00:04:17.920 report came back that I had a tumor in my appendix 00:04:17.920 --> 00:04:22.089 that caused the appendicitis. So in order to 00:04:22.089 --> 00:04:25.870 rule out that there was no cancer anywhere else 00:04:25.870 --> 00:04:29.149 in my intestinal tract, I had another colonoscopy. 00:04:29.310 --> 00:04:32.910 And during that colonoscopy, they diagnosed me 00:04:32.910 --> 00:04:35.810 with ulcerative colitis, which they said there's 00:04:35.810 --> 00:04:38.230 no more tumors, which is really exciting, but 00:04:38.230 --> 00:04:41.029 that I did have ulcerative colitis. And that 00:04:41.029 --> 00:04:46.290 was such a relief to hear because I knew for 00:04:46.290 --> 00:04:49.120 so long. And I was having these horrible symptoms. 00:04:49.180 --> 00:04:51.879 And I was so excited because now I could finally 00:04:51.879 --> 00:04:57.860 get treatment. And I didn't know, I guess, what 00:04:57.860 --> 00:05:00.300 ulcerative colitis could consist of other than 00:05:00.300 --> 00:05:04.540 I was scared that I needed to manage it so I 00:05:04.540 --> 00:05:07.600 didn't get colon cancer. But other than that, 00:05:07.699 --> 00:05:10.360 I didn't know what it would consist of other 00:05:10.360 --> 00:05:12.800 than needing to go to the bathroom many times 00:05:12.800 --> 00:05:18.829 a day. Wow. A long journey before you were diagnosed. 00:05:18.870 --> 00:05:21.750 And if I did my math right, that means that between 00:05:21.750 --> 00:05:26.310 age 15 and age 23, you never received an official 00:05:26.310 --> 00:05:30.029 colitis diagnosis. Am I right? Yes, and no treatment 00:05:30.029 --> 00:05:35.529 at all. Well, that's insane. I mean, I recently 00:05:35.529 --> 00:05:37.269 talked to somebody who made a very good point 00:05:37.269 --> 00:05:41.589 in saying that not every GI is specializing in 00:05:41.589 --> 00:05:43.430 IBD, right? Because, I mean, we have this... 00:05:43.870 --> 00:05:47.389 idea of a gastroenterologist just being knowledgeable 00:05:47.389 --> 00:05:51.110 enough to pick up on a colitis or Crohn's diagnosis 00:05:51.110 --> 00:05:53.689 just by doing colonoscopies. So what you're saying 00:05:53.689 --> 00:05:56.949 is that you've had several colonoscopies before 00:05:56.949 --> 00:06:00.350 actually having another colonoscopy that gave 00:06:00.350 --> 00:06:04.589 you the official diagnosis, right? Yes. Wow. 00:06:04.990 --> 00:06:09.290 So you said that you sort of self -diagnosed 00:06:09.290 --> 00:06:12.850 earlier on, which basically means that you've 00:06:13.180 --> 00:06:16.540 certainly came in contact with the term ulcerative 00:06:16.540 --> 00:06:21.100 colitis but when at 23 when at 23 your doctor 00:06:21.100 --> 00:06:24.379 at that time officially handed you the diagnosis 00:06:24.379 --> 00:06:29.420 what went through your mind because obviously 00:06:29.420 --> 00:06:31.399 i think ulcerative colitis was not a completely 00:06:31.399 --> 00:06:36.139 strange term to you so were you were you more 00:06:36.139 --> 00:06:39.079 on the calmer side were you surprised like how 00:06:39.079 --> 00:06:42.870 did you process that mentally I remember just 00:06:42.870 --> 00:06:49.910 feeling a lot of relief that I had a name and 00:06:49.910 --> 00:06:52.050 like a label for what I was going through because 00:06:52.050 --> 00:06:58.230 it had been so many years of like really suffering 00:06:58.230 --> 00:07:02.350 with these GI issues and trying so hard to find 00:07:02.350 --> 00:07:05.709 an answer. So it kind of just felt like I was 00:07:05.709 --> 00:07:08.629 able to, like the puzzle was finally put together. 00:07:10.639 --> 00:07:14.339 like, just diagnosing yourself with an autoimmune 00:07:14.339 --> 00:07:17.800 disease does not get you treatment, and I kind 00:07:17.800 --> 00:07:20.100 of sometimes just didn't believe myself because 00:07:20.100 --> 00:07:23.540 it would go away, and I didn't understand, like, 00:07:23.600 --> 00:07:26.600 flare -ups that sometimes you are perfectly fine, 00:07:26.740 --> 00:07:29.879 and then other times you're gonna shit your pants 00:07:29.879 --> 00:07:35.519 on the way to the supermarket. So, like, I, whenever 00:07:35.519 --> 00:07:39.139 I would, like, improve. I just like no longer 00:07:39.139 --> 00:07:42.680 believed myself that I was sick. So getting that 00:07:42.680 --> 00:07:47.259 diagnosis was just such a relief. And I remember 00:07:47.259 --> 00:07:49.720 just being really excited that I was going to 00:07:49.720 --> 00:07:54.819 be able to be treated. Absolutely. Okay, so diagnosis, 00:07:55.100 --> 00:08:00.100 well, official diagnosis at age 23. Now take 00:08:00.100 --> 00:08:04.319 us through the journey from there to where you 00:08:04.319 --> 00:08:12.600 are today. That was a crazy journey. I think 00:08:12.600 --> 00:08:20.139 it was January 2023 I was diagnosed, and then 00:08:20.139 --> 00:08:27.360 by July 2025 I had an ostomy. So January 2023 00:08:27.360 --> 00:08:31.879 I was put on a round of prednisone, which... 00:08:32.279 --> 00:08:35.100 I loved because I had lost so much weight and 00:08:35.100 --> 00:08:37.679 then I was able to eat like three pizzas in one 00:08:37.679 --> 00:08:39.879 go. So I was like, oh, I'm going to be able to 00:08:39.879 --> 00:08:42.940 like regain all this weight. And it was awesome. 00:08:43.360 --> 00:08:49.200 And then I was put on mesalamine, the oral mesalamine. 00:08:49.320 --> 00:08:53.320 So it's like the six giant pills a day. And I 00:08:53.320 --> 00:08:58.100 had taken the mesalamine for maybe like six months. 00:08:58.259 --> 00:09:02.450 And then I didn't realize how bad ulcerative 00:09:02.450 --> 00:09:06.289 colitis could get, and I thought, well, I've 00:09:06.289 --> 00:09:08.649 lived with it for this long, and I don't feel 00:09:08.649 --> 00:09:12.070 like taking six huge pills a day. So I stopped 00:09:12.070 --> 00:09:14.350 taking the mesalamine, which probably was not 00:09:14.350 --> 00:09:18.610 the best decision, but I just, I didn't know 00:09:18.610 --> 00:09:23.029 how bad it could be. And then through law school, 00:09:23.090 --> 00:09:27.230 I think the stress just really exacerbated my 00:09:27.230 --> 00:09:32.759 IBD, and then I So I was like in a non flare 00:09:32.759 --> 00:09:35.360 up. I was using the bathroom probably 12 times 00:09:35.360 --> 00:09:38.980 a day. So I'd be leaving classes coming back. 00:09:39.059 --> 00:09:42.759 I'd probably leave each three hour class like 00:09:42.759 --> 00:09:47.919 four times to go have a bowel movement. So that 00:09:47.919 --> 00:09:53.519 was pretty difficult. And just through law school, 00:09:53.639 --> 00:09:58.279 which was during my diagnosis, I just kept. deteriorating 00:09:58.279 --> 00:10:00.639 but kind of like fighting that so that I try 00:10:00.639 --> 00:10:05.460 to fix it with like my diet and I went on like 00:10:05.460 --> 00:10:09.620 an anti -inflammatory diet and I tried the low 00:10:09.620 --> 00:10:15.480 FODMAP diet and now I'm really working but then 00:10:15.480 --> 00:10:20.080 I went into like the season where I had less 00:10:20.080 --> 00:10:23.759 flare -ups and I started to improve a bit and 00:10:23.759 --> 00:10:29.129 I remember my very last flare I had started around 00:10:29.129 --> 00:10:31.590 Christmas. I had this milkshake and I remember 00:10:31.590 --> 00:10:35.549 the milkshake just like I had the worst stomach 00:10:35.549 --> 00:10:38.129 cramps from it. And I remember just like literally 00:10:38.129 --> 00:10:42.409 crying on the toilet. It was so painful and horrible. 00:10:42.470 --> 00:10:46.690 And then it never went back to normal. So then, 00:10:46.809 --> 00:10:52.850 I mean, I think I ended up like pooping in my 00:10:52.850 --> 00:10:56.200 pants. four times in several months when I was 00:10:56.200 --> 00:11:00.899 out in public, which was horrible. And then I 00:11:00.899 --> 00:11:04.460 was about to graduate law school and I was in 00:11:04.460 --> 00:11:10.419 the worst flare up of my life. It was so painful 00:11:10.419 --> 00:11:16.379 that I became like bedridden. And right before 00:11:16.379 --> 00:11:19.019 graduation, I was like, I need to get through 00:11:19.019 --> 00:11:21.299 graduation. Like, can I please have steroids? 00:11:21.500 --> 00:11:24.200 So I got steroids that day and I started a prednisone. 00:11:24.879 --> 00:11:28.399 So then actually the night I graduated, we went 00:11:28.399 --> 00:11:30.820 and had this like amazing pasta dinner and I 00:11:30.820 --> 00:11:33.299 came home and I was in so much pain that I was 00:11:33.299 --> 00:11:36.440 like screaming and crying on my couch and in 00:11:36.440 --> 00:11:41.120 the bathroom. So eventually I went to the hospital 00:11:41.120 --> 00:11:44.240 because I couldn't take it anymore. Like I couldn't 00:11:44.240 --> 00:11:47.519 eat, I couldn't drink. So that was the first 00:11:48.190 --> 00:11:53.710 of my admissions and that was over in may um 00:11:53.710 --> 00:11:56.450 and so i was there for a week and they started 00:11:56.450 --> 00:12:02.529 me on remicade and so i was on remicade and iv 00:12:02.529 --> 00:12:06.570 steroids and i started to improve so they sent 00:12:06.570 --> 00:12:10.970 me home and then within two days i was in a ton 00:12:10.970 --> 00:12:14.659 of pain arrived at the er like screaming and 00:12:14.659 --> 00:12:17.139 like begging for pain medicine because I was 00:12:17.139 --> 00:12:21.159 in so much pain so then I was admitted again 00:12:21.159 --> 00:12:25.700 and they did an endoscopy and a colonoscopy and 00:12:25.700 --> 00:12:29.799 then the next day I was already discharged because 00:12:29.799 --> 00:12:33.440 I improved pretty quick that time so then I was 00:12:34.570 --> 00:12:37.490 within a week, readmitted again, but at a different 00:12:37.490 --> 00:12:41.070 hospital where my GI had privileges. So I thought, 00:12:41.169 --> 00:12:43.370 maybe I'll try here because I really trust my 00:12:43.370 --> 00:12:47.490 GI. And if his team's able to treat me, maybe 00:12:47.490 --> 00:12:53.269 it'll be a better outcome. So within the first 00:12:53.269 --> 00:12:58.450 two days that I was admitted there, the GI told 00:12:58.450 --> 00:13:01.330 me that I needed to talk to the surgeon, which 00:13:01.330 --> 00:13:05.159 was absolutely terrifying. I didn't, know what 00:13:05.159 --> 00:13:07.980 surgery for ulcerative colitis would even be. 00:13:08.360 --> 00:13:13.659 I was on a ton of steroids and then they did 00:13:13.659 --> 00:13:18.100 another colonoscopy and my intestine looked terrifying 00:13:18.100 --> 00:13:23.879 looking. Like it was so ulcerated and so far 00:13:23.879 --> 00:13:27.740 away from what a normal colon looks like. It 00:13:27.740 --> 00:13:29.980 looked like it was like, it was just bright red 00:13:29.980 --> 00:13:33.779 with like a spider webs looking all through it. 00:13:33.840 --> 00:13:37.980 It was terrifying, like Wagyu beef, basically. 00:13:38.639 --> 00:13:45.600 It's not supposed to look like that. He told 00:13:45.600 --> 00:13:50.519 me it was time to talk to the surgeon. She actually 00:13:50.519 --> 00:13:54.080 gave me a really positive perspective on what 00:13:54.080 --> 00:13:58.259 life with an ileostomy would be, about how I 00:13:58.259 --> 00:14:02.860 would be able to do anything. My life could look 00:14:02.860 --> 00:14:05.600 exactly the same as it does now. And obviously 00:14:05.600 --> 00:14:09.000 some people have difficulty with the surgery 00:14:09.000 --> 00:14:12.580 and their bodies don't react well. And you're 00:14:12.580 --> 00:14:16.200 going to have just a range of like side effects. 00:14:16.379 --> 00:14:20.679 And so she told me all about those. And I don't 00:14:20.679 --> 00:14:25.139 think I spoke at all that entire first meeting 00:14:25.139 --> 00:14:27.740 with her because I knew if I spoke, I was going 00:14:27.740 --> 00:14:31.610 to start crying. I was just... I just, I couldn't 00:14:31.610 --> 00:14:34.629 speak because I didn't want to cry in front of 00:14:34.629 --> 00:14:38.350 someone I just met. And it was just so much and 00:14:38.350 --> 00:14:42.549 so difficult. But I was admitted for 12 days, 00:14:42.610 --> 00:14:46.509 that admission. And she came, I think, eight 00:14:46.509 --> 00:14:49.950 or nine of those days. And we would meet almost 00:14:49.950 --> 00:14:53.789 every day and talk about my questions about the 00:14:53.789 --> 00:14:58.090 surgery. That was extremely helpful. I was able 00:14:58.090 --> 00:15:01.090 to like build this really wonderful bond with 00:15:01.090 --> 00:15:05.129 the colorectal surgeon. But I ended up leaving 00:15:05.129 --> 00:15:08.970 the hospital that time because once again, I 00:15:08.970 --> 00:15:12.230 improved. And so I was like, wow, it was amazing 00:15:12.230 --> 00:15:14.629 meeting this doctor, but I hope I never see her 00:15:14.629 --> 00:15:22.889 again. And then within two days, I had... it's 00:15:22.889 --> 00:15:26.889 like 104 fever I couldn't stand with like without 00:15:26.889 --> 00:15:30.909 almost fainting and the pain was so bad I remember 00:15:30.909 --> 00:15:34.190 I called my mom and said that we need to get 00:15:34.190 --> 00:15:36.210 in contact with the surgeon because I wanted 00:15:36.210 --> 00:15:42.429 to rip out my colon myself so because I was I 00:15:42.429 --> 00:15:44.690 couldn't even drink water and my heart rate was 00:15:44.690 --> 00:15:48.470 so high and had a fever so I went back to the 00:15:48.470 --> 00:15:51.230 hospital under the advisement of my GI and he 00:15:51.230 --> 00:15:55.539 said there's no other options. We need to get 00:15:55.539 --> 00:15:58.100 you back to the hospital and you need to have 00:15:58.100 --> 00:16:01.340 surgery. So then I went back to the hospital 00:16:01.340 --> 00:16:05.740 and I was too unstable to operate on immediately. 00:16:05.820 --> 00:16:11.259 So I got a PICC line with the TPN nutrition and 00:16:11.259 --> 00:16:14.379 I was on that for a few days to help me like 00:16:14.379 --> 00:16:18.559 regain some strength since I hadn't ate pretty 00:16:18.559 --> 00:16:21.230 much in weeks because Every time I'd talk to 00:16:21.230 --> 00:16:24.289 the doctor and I was hospitalized, they'd put 00:16:24.289 --> 00:16:28.190 me on NPO. So I probably only ate a few times 00:16:28.190 --> 00:16:31.549 within a month. So I was back in the hospital 00:16:31.549 --> 00:16:34.789 and we're like planning on a surgery date and 00:16:34.789 --> 00:16:38.309 just getting all my vitals under control. And 00:16:38.309 --> 00:16:45.309 then finally on July 5th, 2024, I got my ostomy. 00:16:45.490 --> 00:16:49.350 And I remember I was very excited because I'd 00:16:50.090 --> 00:16:53.590 I just remember I was going to wake up and be 00:16:53.590 --> 00:16:55.990 pain -free, which is not exactly what happens 00:16:55.990 --> 00:16:59.370 after abdominal surgery, but you don't have ulcerative 00:16:59.370 --> 00:17:02.289 colitis pain. So there's, you know, win some, 00:17:02.370 --> 00:17:06.089 lose some there. Wow. So you prefaced your answer 00:17:06.089 --> 00:17:08.390 by saying it was quite the journey. So yeah, 00:17:08.490 --> 00:17:10.470 it definitely sounded like quite the journey. 00:17:11.589 --> 00:17:14.490 We always say, let's not dwell on the past, you 00:17:14.490 --> 00:17:18.299 know, life moves on. let's accept the past as 00:17:18.299 --> 00:17:21.299 it is but as humans we we cannot help but sometimes 00:17:21.299 --> 00:17:24.940 being pulled back by regrets right or or nostalgia 00:17:24.940 --> 00:17:27.279 in this case you know i i want to focus more 00:17:27.279 --> 00:17:32.400 on regrets and you looking back now do you think 00:17:32.400 --> 00:17:34.640 that potentially today you could still have a 00:17:34.640 --> 00:17:38.539 colon or relatively healthy colon had you not 00:17:38.539 --> 00:17:41.779 stopped medication on your own accord i thought 00:17:41.779 --> 00:17:47.400 about that a lot when right before surgery and 00:17:47.400 --> 00:17:54.700 the months after surgery. And I'm not sure. I 00:17:54.700 --> 00:18:00.440 think it is definitely possible I wouldn't have 00:18:00.440 --> 00:18:03.700 needed an ostomy because maybe I could have stayed 00:18:03.700 --> 00:18:07.339 in remission and my colon gotten healthier because 00:18:07.339 --> 00:18:09.839 I know that does happen for many people that 00:18:09.839 --> 00:18:12.779 they're able to manage well with medications. 00:18:14.269 --> 00:18:19.789 I thought about that a lot and then I realized, 00:18:19.910 --> 00:18:24.269 well, I can't really go back. And I hated, I 00:18:24.269 --> 00:18:26.410 think what made me feel better is I hated the 00:18:26.410 --> 00:18:31.569 pills and managing an ostomy is easier than managing 00:18:31.569 --> 00:18:36.150 those pills was, at least my ostomy. So I think 00:18:36.150 --> 00:18:38.170 that's how it made me feel a little bit better 00:18:38.170 --> 00:18:41.309 since I can't go back is realizing I'd rather 00:18:41.309 --> 00:18:45.140 change a bag than... Take six giant pills. I 00:18:45.140 --> 00:18:48.299 think for me, I no longer feel regret. I definitely 00:18:48.299 --> 00:18:51.940 felt a lot of regret in the beginning because 00:18:51.940 --> 00:18:58.259 I think, at least for me, the news of meeting 00:18:58.259 --> 00:19:03.480 an ostomy and then relearning how to do life 00:19:03.480 --> 00:19:07.480 in the beginning was very difficult, just mentally. 00:19:07.519 --> 00:19:11.519 It's a huge life change. Your body completely 00:19:11.519 --> 00:19:14.019 changes. It's not the body you've always been 00:19:14.019 --> 00:19:17.539 seeing. A stoma looks a little scary at first 00:19:17.539 --> 00:19:20.920 until you're used to it because your brain's 00:19:20.920 --> 00:19:24.039 not used to being able to see an intestine. So 00:19:24.039 --> 00:19:28.119 that's a terrifying thing to see. So I think 00:19:28.119 --> 00:19:30.140 with all those things, I did feel a lot of regret 00:19:30.140 --> 00:19:36.599 because I wanted my body to be how it was before. 00:19:37.519 --> 00:19:40.019 I think after a while, I just really grown to 00:19:40.019 --> 00:19:43.720 love my ostomy and my life with my ostomy. And 00:19:43.720 --> 00:19:49.000 I've never in my life been this healthy. I'm 00:19:49.000 --> 00:19:52.059 able to be so active because I don't have the 00:19:52.059 --> 00:19:55.240 fatigue from ulcerative colitis. I'm never worried 00:19:55.240 --> 00:19:58.240 that I'm going to like poop my pants while doing 00:19:58.240 --> 00:20:03.740 something. I'm not in pain ever. It's insane 00:20:03.740 --> 00:20:06.900 to have gone. over a year, like a year and a 00:20:06.900 --> 00:20:10.160 half almost now without any intestinal pain, 00:20:10.279 --> 00:20:13.140 that is just mind blowing for me. I haven't experienced 00:20:13.140 --> 00:20:17.640 that since I can't remember much of how my stomach 00:20:17.640 --> 00:20:21.500 felt before 15. So I just, what I do remember 00:20:21.500 --> 00:20:24.039 is the many hours I sat on the toilet and in 00:20:24.039 --> 00:20:29.660 pain. So I think just now focusing more on my 00:20:29.660 --> 00:20:37.359 life with my ostomy helps a lot. And so I no 00:20:37.359 --> 00:20:40.259 longer feel regret. But I definitely did in the 00:20:40.259 --> 00:20:43.819 beginning when I was just working through all 00:20:43.819 --> 00:20:47.559 the feelings with getting an ostomy. Sure. Absolutely. 00:20:47.759 --> 00:20:50.259 Absolutely. So you've grown as a person and you've 00:20:50.259 --> 00:20:54.660 grown to accept your fate in a sense. You touched 00:20:54.660 --> 00:20:58.480 on it. So we're right at the present now. You're 00:20:58.480 --> 00:21:00.970 living with an ostomy. There's a misconception 00:21:00.970 --> 00:21:04.930 sometimes that having surgery is a cure, right? 00:21:05.029 --> 00:21:07.609 And a lot of people with ostomies, they still 00:21:07.609 --> 00:21:10.410 occasionally experience symptoms. I mean, sometimes 00:21:10.410 --> 00:21:12.069 more with Crohn's than with colitis potentially. 00:21:12.849 --> 00:21:15.690 Tell us now, how are you feeling today? Do you 00:21:15.690 --> 00:21:18.410 have any challenges in terms of just purely medically? 00:21:18.710 --> 00:21:20.329 Because I mean, living with a stomach can present 00:21:20.329 --> 00:21:22.049 its own little challenges here and there. But 00:21:22.049 --> 00:21:25.970 so just medically, physically, what's your life 00:21:25.970 --> 00:21:30.960 like right now post -surgery? So medically, I 00:21:30.960 --> 00:21:34.980 do not have any problems currently. Right after 00:21:34.980 --> 00:21:38.859 surgery, I did have a lot of complications, which 00:21:38.859 --> 00:21:42.359 we can, we can touch on that next. But present 00:21:42.359 --> 00:21:48.920 tense, I don't have any, any issues. I mean, 00:21:48.940 --> 00:21:54.539 I have no recurrence of my ulcerative colitis. 00:21:54.900 --> 00:22:00.460 I have no other The extra intestinal manifestations, 00:22:00.759 --> 00:22:03.079 I haven't personally dealt with any of those. 00:22:03.319 --> 00:22:08.380 For me, it's just given me a lot of physical 00:22:08.380 --> 00:22:11.599 strength and stamina. So, like, tomorrow I'm 00:22:11.599 --> 00:22:14.539 actually running a 10 -mile race. I wasn't able 00:22:14.539 --> 00:22:19.799 to run before getting an ostomy, and now I can 00:22:19.799 --> 00:22:22.900 run for 10 miles straight, which is really exciting 00:22:22.900 --> 00:22:28.329 for me. And other things, I'm able to hike long 00:22:28.329 --> 00:22:33.549 distances and do things that are very physically 00:22:33.549 --> 00:22:37.930 challenging without it being extremely taxing 00:22:37.930 --> 00:22:41.849 on my body. Before I got my ostomy, if I was 00:22:41.849 --> 00:22:46.009 even like had prolonged stress, like for even 00:22:46.009 --> 00:22:49.430 an exam, I would get like flu -like symptoms. 00:22:50.400 --> 00:22:53.119 And I used to call it like fake sick. So anytime 00:22:53.119 --> 00:22:56.480 I was stressed, I would get fake sick. And I 00:22:56.480 --> 00:23:01.440 haven't gotten fake sick in over a year. So I 00:23:01.440 --> 00:23:05.599 think, at least for me personally, it's only 00:23:05.599 --> 00:23:13.359 brought like positive physical health. So I'm 00:23:13.359 --> 00:23:18.700 correct to assess then that. having a surgery 00:23:18.700 --> 00:23:20.640 and living with an ostomy gave you your life 00:23:20.640 --> 00:23:24.299 back, right? Yeah. Yeah, it gave me a life I 00:23:24.299 --> 00:23:29.140 didn't know I could have. And so obviously the 00:23:29.140 --> 00:23:32.559 idea here is to break down the stigmas of fear 00:23:32.559 --> 00:23:35.359 surrounding surgeries. A lot of people who have 00:23:35.359 --> 00:23:38.519 not had surgeries yet, right, but may not have 00:23:38.519 --> 00:23:41.619 a choice moving forward. You did say you had 00:23:41.619 --> 00:23:45.200 some complications, and I want to talk to you 00:23:45.200 --> 00:23:47.539 about those because, you know, I think it's part 00:23:47.539 --> 00:23:49.519 of the journey. And again, this is not to scare 00:23:49.519 --> 00:23:51.880 other people, but it doesn't mean that it happens 00:23:51.880 --> 00:23:54.579 to everybody either, right? But yeah, take us 00:23:54.579 --> 00:23:57.700 a little bit through then how your journey evolved 00:23:57.700 --> 00:24:00.079 right after surgery, before you arrive at the 00:24:00.079 --> 00:24:02.299 present day where you actually feel really great. 00:24:02.900 --> 00:24:08.579 So I, right after surgery, I think within a week, 00:24:08.829 --> 00:24:12.750 I hadn't been discharged yet because I got an 00:24:12.750 --> 00:24:17.250 ileus, which is basically where part of your 00:24:17.250 --> 00:24:20.569 intestine is paralyzed. The gut motility stops. 00:24:20.750 --> 00:24:24.130 And so you're more prone to a blockage. So some 00:24:24.130 --> 00:24:28.109 food I had ate wasn't able to pass because my 00:24:28.109 --> 00:24:32.369 intestines were not moving. So I ended up with 00:24:32.369 --> 00:24:38.480 a blockage. And... They tried to irrigate it 00:24:38.480 --> 00:24:41.619 through the stoma. So they would stick like a 00:24:41.619 --> 00:24:45.299 catheter into the stoma, which doesn't hurt at 00:24:45.299 --> 00:24:47.240 all. There's like some slight pressure as if 00:24:47.240 --> 00:24:50.740 someone's pressing on your stomach, but it's 00:24:50.740 --> 00:24:55.940 not painful. And they would put water into it 00:24:55.940 --> 00:24:59.000 and then pull the water back out to try to pull 00:24:59.000 --> 00:25:04.059 the blockage. That was able to relieve some of 00:25:04.059 --> 00:25:06.980 the pressure for me. I would get that done like 00:25:06.980 --> 00:25:11.740 twice a day, but it was not clearing the blockage 00:25:11.740 --> 00:25:17.259 at all. And then I think it was about seven days 00:25:17.259 --> 00:25:23.500 post -surgery, I spiked a fever and my heart 00:25:23.500 --> 00:25:27.039 rate was extremely high. I think it was like 00:25:27.039 --> 00:25:30.380 while I was trying to sleep, it was at 150. which 00:25:30.380 --> 00:25:32.920 it should not be at 150 when you're at complete 00:25:32.920 --> 00:25:37.640 rest. So one of the nurses called a rapid code 00:25:37.640 --> 00:25:41.779 and that was quite terrifying because there was 00:25:41.779 --> 00:25:44.640 like 30 people in my room in the span of a minute 00:25:44.640 --> 00:25:51.420 all of a sudden. And then I think I got a CT 00:25:51.420 --> 00:25:55.880 scan that showed my bowel had perforated. where 00:25:55.880 --> 00:25:59.099 the blockage was, which is what caused the heart 00:25:59.099 --> 00:26:04.119 rate and fever. So the next day I had a resection 00:26:04.119 --> 00:26:08.000 of that part of my intestine, which luckily it 00:26:08.000 --> 00:26:11.599 was a part of my intestine closest to my stoma. 00:26:11.960 --> 00:26:15.019 So they didn't have to reconnect any bowel. They 00:26:15.019 --> 00:26:18.799 ended up just, I don't know how to describe it, 00:26:18.819 --> 00:26:21.859 but I guess pulling the stoma out with that part 00:26:21.859 --> 00:26:23.759 of the intestine and then making a new stoma. 00:26:24.220 --> 00:26:27.460 So then after that, I was doing really well. 00:26:27.859 --> 00:26:31.940 I think a week or two after that, I went home. 00:26:33.099 --> 00:26:40.119 And then within 24 hours, I spiked a really high 00:26:40.119 --> 00:26:44.720 heart rate again and had, I think, 103 fever. 00:26:45.460 --> 00:26:48.079 And that was really confusing because I had been 00:26:48.079 --> 00:26:51.140 doing really well for days. But all of a sudden... 00:26:52.259 --> 00:26:57.299 I was not good. And then I had to take an ambulance 00:26:57.299 --> 00:27:00.119 to the hospital because I couldn't stand up. 00:27:00.160 --> 00:27:02.859 If I tried to stand, I felt like I was going 00:27:02.859 --> 00:27:06.259 to faint. And I think I would have if I tried 00:27:06.259 --> 00:27:09.680 to stand for too long. So I didn't feel safe, 00:27:09.720 --> 00:27:13.599 my family taking me to the hospital. So we took 00:27:13.599 --> 00:27:17.599 an ambulance. And due to my symptoms, they said 00:27:17.599 --> 00:27:21.799 I had severe sepsis, which I'm still not sure 00:27:21.799 --> 00:27:25.559 if they ruled that out or not because my chart 00:27:25.559 --> 00:27:29.420 is all over the place. So I potentially had severe 00:27:29.420 --> 00:27:37.880 sepsis and due to my symptoms and the CT scan 00:27:37.880 --> 00:27:42.200 that had said suddenly all of my intestines were 00:27:42.200 --> 00:27:50.069 inflamed. that the CT technician thought I had 00:27:50.069 --> 00:27:52.710 Crohn's and I've never had a history of Crohn's, 00:27:52.730 --> 00:27:56.450 but because everything that was left was inflamed, 00:27:56.589 --> 00:28:00.690 my surgeon said we needed to immediately go into 00:28:00.690 --> 00:28:05.089 surgery to just see what's going on. So the original 00:28:05.089 --> 00:28:09.390 plan was to just pop a camera in there and see 00:28:09.390 --> 00:28:12.940 what's going on. And so it was going to be just 00:28:12.940 --> 00:28:17.779 a laparoscopic exploratory surgery, but they 00:28:17.779 --> 00:28:20.759 couldn't fit the camera in my abdomen because 00:28:20.759 --> 00:28:25.579 the pressure was so high that I ended up with 00:28:25.579 --> 00:28:29.259 a full laparotomy, which is like, now it's like 00:28:29.259 --> 00:28:33.700 a six inch scar, not maybe longer, but they opened 00:28:33.700 --> 00:28:37.079 me up. And as soon as I was open, they said my 00:28:37.079 --> 00:28:40.430 heart rate started to decrease. And based on 00:28:40.430 --> 00:28:43.250 those symptoms, it looked like abdominal compartment 00:28:43.250 --> 00:28:48.250 syndrome caused by post -colectomy panenteritis. 00:28:48.410 --> 00:28:59.349 And they found no cause. There was no cause whatsoever 00:28:59.349 --> 00:29:02.450 for this inflammation, even though they checked 00:29:02.450 --> 00:29:06.210 all of my intestines. So they ended up leaving 00:29:06.210 --> 00:29:10.779 me open. And put me on a ventilator in the ICU 00:29:10.779 --> 00:29:13.980 for a few days so that my abdomen could decompress. 00:29:15.079 --> 00:29:19.599 And then I had two more surgeries to slowly close 00:29:19.599 --> 00:29:24.259 up my abdomen after. So my second complication, 00:29:24.259 --> 00:29:28.220 I guess, was just a lot of inflammation and pressure 00:29:28.220 --> 00:29:31.420 that had built up in my abdomen. And they don't 00:29:31.420 --> 00:29:34.880 know why. There's only been a few cases of this. 00:29:35.799 --> 00:29:38.220 Although it was really scary and I think it sounds 00:29:38.220 --> 00:29:41.700 really scary for someone going into surgery, 00:29:42.059 --> 00:29:46.140 this is not something that happens often whatsoever. 00:29:46.740 --> 00:29:50.980 It was very rare and very confusing even for 00:29:50.980 --> 00:29:56.900 the doctors. But luckily they, you know, were 00:29:56.900 --> 00:30:00.500 able to figure out how to treat it. And other 00:30:00.500 --> 00:30:02.759 than needing to be on a ventilator for a few 00:30:02.759 --> 00:30:05.019 days, which I was awake and that was not fun. 00:30:05.660 --> 00:30:11.599 In the end, it ended up being okay. And I'm very 00:30:11.599 --> 00:30:15.960 thankful for the doctors I had. You paid quite 00:30:15.960 --> 00:30:19.519 a hefty price to get to where you are today, 00:30:19.720 --> 00:30:22.920 obviously, based on just listening to you. So 00:30:22.920 --> 00:30:26.460 now I'm really interested in hearing you explain 00:30:26.460 --> 00:30:30.440 to me how you stayed sane mentally throughout 00:30:30.440 --> 00:30:34.079 those surgeries, hospital stays. the complications 00:30:34.079 --> 00:30:38.339 and not just staying sane mentally, but how did 00:30:38.339 --> 00:30:41.539 you manage to hold on to hope that you would 00:30:41.539 --> 00:30:43.859 get better, that, you know, you would actually 00:30:43.859 --> 00:30:48.160 pull through and, well, walk again, right? Like, 00:30:48.160 --> 00:30:50.380 how did you deal with this? Where did you get 00:30:50.380 --> 00:30:53.859 the strength from? So in my surgeries before 00:30:53.859 --> 00:30:57.779 the final set of them were, I needed to be on 00:30:57.779 --> 00:31:02.140 a ventilator in the ICU. I had a lot of hope. 00:31:02.670 --> 00:31:08.190 And I just like, it never crossed my mind that 00:31:08.190 --> 00:31:10.549 I wouldn't be okay. And I think I was just so 00:31:10.549 --> 00:31:14.269 excited for what my new life was going to be. 00:31:14.930 --> 00:31:18.849 And there's a lot of free time when you're sitting 00:31:18.849 --> 00:31:21.150 in the hospital. And so I kind of just planned 00:31:21.150 --> 00:31:23.690 out activities I was going to do when I was better. 00:31:24.009 --> 00:31:26.269 I mean, I had planned like I wanted to dye my 00:31:26.269 --> 00:31:29.630 hair even, like little things, like go to a park 00:31:29.630 --> 00:31:32.690 with my friends. spend time with my dog again 00:31:32.690 --> 00:31:34.309 because I couldn't see my dog when I was in the 00:31:34.309 --> 00:31:39.109 hospital. So I just kept making plans for after, 00:31:39.210 --> 00:31:41.910 even though I ended up having to cancel all of 00:31:41.910 --> 00:31:43.710 those plans because I didn't realize how long 00:31:43.710 --> 00:31:46.410 it would take to recover from surgery. But it 00:31:46.410 --> 00:31:49.349 did help me a lot to continue to make all of 00:31:49.349 --> 00:31:53.309 these plans. But even during that time, it was 00:31:53.309 --> 00:31:57.700 still really hard because No matter how often 00:31:57.700 --> 00:32:00.279 your family and friends visit you, you're so 00:32:00.279 --> 00:32:03.599 isolated because you're stuck in the hospital. 00:32:04.099 --> 00:32:14.660 And it's so hard to just be stuck and have basically 00:32:14.660 --> 00:32:17.140 nothing to do until someone comes and visits 00:32:17.140 --> 00:32:20.579 you again. And so that would really get to me 00:32:20.579 --> 00:32:23.740 and all of the days kind of run together. And 00:32:23.740 --> 00:32:27.299 somehow they eventually start going very quickly. 00:32:27.519 --> 00:32:30.940 So I woke up, ate breakfast, and then it somehow 00:32:30.940 --> 00:32:32.980 felt like it's already 4 p .m. And I'm like, 00:32:33.019 --> 00:32:35.460 well, I haven't gotten to do anything today. 00:32:35.559 --> 00:32:39.779 But you can't do anything. So when it's three 00:32:39.779 --> 00:32:42.759 months of that, it really gets into your head. 00:32:42.839 --> 00:32:47.150 But then... After the last three surgeries and 00:32:47.150 --> 00:32:52.390 after I had been on a ventilator, I honestly 00:32:52.390 --> 00:32:56.349 did lose all of the strength I had to continue 00:32:56.349 --> 00:33:01.470 fighting. It was really scary for me to be on 00:33:01.470 --> 00:33:04.990 a ventilator. And after I was taken off, I was 00:33:04.990 --> 00:33:08.250 actually hallucinating for a few days. So anytime 00:33:08.250 --> 00:33:12.640 I closed my eyes, I... would like start to see 00:33:12.640 --> 00:33:15.579 like figures like even if I blinked for too long 00:33:15.579 --> 00:33:19.460 so then I stopped sleeping until they were able 00:33:19.460 --> 00:33:22.579 to give me like sedatives so then being like 00:33:22.579 --> 00:33:26.859 sleep deprived and like in a ton of pain I just 00:33:26.859 --> 00:33:31.400 kind of like lost all the strength and I was 00:33:31.400 --> 00:33:34.359 like crying all the time I was I was honestly 00:33:34.359 --> 00:33:37.720 really struggling so I think I remember like 00:33:37.720 --> 00:33:40.640 thinking back to then All my friends were texting 00:33:40.640 --> 00:33:46.279 me that I'm so strong. And I just remember thinking, 00:33:46.380 --> 00:33:49.160 but, like, I'm not. Like, at that point, it felt 00:33:49.160 --> 00:33:51.180 like my doctors were really strong. Like, they 00:33:51.180 --> 00:33:55.839 were the ones fighting. I was just there. And 00:33:55.839 --> 00:34:02.099 they kept fighting for me. So I am very thankful 00:34:02.099 --> 00:34:06.140 for... Also my family and friends who continued 00:34:06.140 --> 00:34:09.480 to check on me and support me during that time 00:34:09.480 --> 00:34:13.000 because it felt like it was my medical team and 00:34:13.000 --> 00:34:15.260 my support system who were the ones who were 00:34:15.260 --> 00:34:18.099 strong and who were fighting for me when I no 00:34:18.099 --> 00:34:21.340 longer could. And yet you did in your own way 00:34:21.340 --> 00:34:24.900 because I always say those around us, they... 00:34:25.340 --> 00:34:27.300 Help us with the strength, but you yourself, 00:34:27.760 --> 00:34:32.239 your mental capacity, your body, you're certainly 00:34:32.239 --> 00:34:37.300 contributing, right? Yeah. Now, symptoms at 15, 00:34:37.599 --> 00:34:42.199 diagnosis at 23, surgery, ostomy today. You were 00:34:42.199 --> 00:34:45.699 very young, so you went through all of this while 00:34:45.699 --> 00:34:47.500 you're growing up to a crucial stage in your 00:34:47.500 --> 00:34:49.920 life, right? Teenage years and then becoming 00:34:49.920 --> 00:34:54.989 an adult. Looking back. at this quite extensive, 00:34:55.190 --> 00:35:00.550 quite hard journey, how has your IBD changed 00:35:00.550 --> 00:35:04.829 you as a person, you think? It's given me a lot 00:35:04.829 --> 00:35:10.989 of perspective on life. And I think also like 00:35:10.989 --> 00:35:14.349 resilience, just in like my daily life things, 00:35:14.469 --> 00:35:19.150 because nothing I go through feels as bad as 00:35:19.150 --> 00:35:22.269 what... IBD has put me through so I just feel 00:35:22.269 --> 00:35:25.170 like I'm able to get through those things because 00:35:25.170 --> 00:35:29.670 I've already been through worse and I think it's 00:35:29.670 --> 00:35:31.650 also on the funny side it's giving me a great 00:35:31.650 --> 00:35:35.429 sense of humor I think it's like just really 00:35:35.429 --> 00:35:39.530 been able allowed well that's not allowed me 00:35:39.530 --> 00:35:43.110 but made me be very comfortable with myself because 00:35:43.110 --> 00:35:45.449 the choices were either be very uncomfortable 00:35:45.449 --> 00:35:51.599 with myself or to be extremely comfortable with 00:35:51.599 --> 00:35:56.500 myself. And my brain ended up choosing the latter. 00:35:56.719 --> 00:36:01.519 So I am the friend who everyone comes to to talk 00:36:01.519 --> 00:36:05.760 about their poop. So my friends who do not have 00:36:05.760 --> 00:36:08.800 IBD, don't have any kind of stomach problems, 00:36:09.000 --> 00:36:11.659 they will tell me about when they've had a weird 00:36:11.659 --> 00:36:15.739 poop, when their stomach hurts, just about poop 00:36:15.739 --> 00:36:19.800 in general. So I just make people feel very comfortable 00:36:19.800 --> 00:36:24.860 about it. And so I get the extremely TMI conversations 00:36:24.860 --> 00:36:29.320 with my friends. And I think I do appreciate 00:36:29.320 --> 00:36:33.079 that it's made people feel comfortable with vulnerable 00:36:33.079 --> 00:36:37.460 topics with me. But I guess on the negative side, 00:36:37.800 --> 00:36:42.179 it has, for like many years, it made body image 00:36:42.179 --> 00:36:48.510 very difficult. Because... I always wanted to 00:36:48.510 --> 00:36:52.389 be like strong in the gym and to like gain weight. 00:36:52.690 --> 00:36:56.170 And then every time I would have a flare up, 00:36:56.250 --> 00:36:59.329 I'd lose all of the strength and I would get 00:36:59.329 --> 00:37:07.250 really thin. And for some reason, my brain decided 00:37:07.250 --> 00:37:10.829 to think that when I lost weight, I was no longer 00:37:10.829 --> 00:37:15.190 lovable. So then it just felt... Like I was in 00:37:15.190 --> 00:37:22.909 this cycle of like trying so hard to like feel 00:37:22.909 --> 00:37:29.130 like my body was like physically like pretty 00:37:29.130 --> 00:37:33.130 enough for to be lovable. But then my body would 00:37:33.130 --> 00:37:38.030 betray me and I would lose all that weight and 00:37:38.030 --> 00:37:40.599 then no longer feel lovable again. And then I'd 00:37:40.599 --> 00:37:44.159 feel like I would need to hide. And I think there's 00:37:44.159 --> 00:37:50.699 like, you know, obviously there is so much of, 00:37:50.699 --> 00:37:54.059 you know, people want to lose weight and like 00:37:54.059 --> 00:37:56.539 being thin isn't seen as a bad thing. But then 00:37:56.539 --> 00:37:59.340 I think when you're sickly thin, it's a little 00:37:59.340 --> 00:38:03.019 bit different. And I was always looking sickly 00:38:03.019 --> 00:38:08.909 thin where I have friends who Well, not friends, 00:38:09.050 --> 00:38:11.349 but people in school who tell me to eat a burger 00:38:11.349 --> 00:38:13.809 and my little brother as a joke would call me 00:38:13.809 --> 00:38:16.269 like Skeletor, which I love him and that's fine. 00:38:16.489 --> 00:38:20.429 I think just little siblings bully you, but stuff 00:38:20.429 --> 00:38:23.190 like that. And then I remember I would have like 00:38:23.190 --> 00:38:25.630 previous boyfriends when I was younger who would 00:38:25.630 --> 00:38:27.730 tell me I should just like gain weight and like 00:38:27.730 --> 00:38:29.670 have curves like the other girls. But then I 00:38:29.670 --> 00:38:33.090 would get sick and lose all of my weight and 00:38:33.090 --> 00:38:37.570 then I couldn't. So I was really mad at my body. 00:38:38.199 --> 00:38:41.480 for a long time because I felt like it was keeping 00:38:41.480 --> 00:38:46.059 me from being lovable. On your Instagram feed, 00:38:46.179 --> 00:38:49.340 you once made a post, I think not too long ago, 00:38:49.460 --> 00:38:56.300 where you described a few statements. And if 00:38:56.300 --> 00:38:57.739 you're okay with it, I'm going to read you about 00:38:57.739 --> 00:39:00.880 four of these. And I would like to get a very 00:39:00.880 --> 00:39:03.260 brief perspective because it's one thing for 00:39:03.260 --> 00:39:05.079 us to write something, but then I think it's 00:39:05.079 --> 00:39:07.679 a different thing of... hearing basically what 00:39:07.679 --> 00:39:10.280 we once wrote, right? Coming back to us when 00:39:10.280 --> 00:39:12.179 somebody else read it. So I'm going to read each 00:39:12.179 --> 00:39:14.360 one, but we're going to do it one by one. And 00:39:14.360 --> 00:39:16.260 you just give me sort of like your quick short 00:39:16.260 --> 00:39:19.699 insight into what you feel and how you feel about 00:39:19.699 --> 00:39:24.139 those today. All right? Okay. The first one you 00:39:24.139 --> 00:39:27.320 wrote, having a leostomy doesn't stop me from 00:39:27.320 --> 00:39:34.900 anything. And I feel like that one is still... 00:39:35.320 --> 00:39:42.360 true for me. I can't think of any time after 00:39:42.360 --> 00:39:44.980 I recovered from surgery, because recovering 00:39:44.980 --> 00:39:47.320 from surgery is something completely on its own, 00:39:47.380 --> 00:39:52.000 but there hasn't been anything it's stopped me 00:39:52.000 --> 00:39:57.039 from doing. I'm actually able to do so much more 00:39:57.039 --> 00:40:03.519 than I was able to before. I mean, with activities, 00:40:03.659 --> 00:40:08.000 with work, making new friends, intimacy, there's 00:40:08.000 --> 00:40:11.599 been nothing it's stopped me personally from 00:40:11.599 --> 00:40:15.559 being able to do. That's great. The second one, 00:40:15.639 --> 00:40:18.820 you talked about it at great length. And I think 00:40:18.820 --> 00:40:20.219 what you said is great. So I'm going to read 00:40:20.219 --> 00:40:22.199 it, but no need to comment. We can skip because 00:40:22.199 --> 00:40:25.239 you mentioned it. I'm still lovable. You definitely 00:40:25.239 --> 00:40:27.880 talked about that one. So let's get to the next 00:40:27.880 --> 00:40:32.760 one. I am not the sick friend. I wrote that one 00:40:32.760 --> 00:40:39.420 because before surgery, I was so scared of being 00:40:39.420 --> 00:40:44.380 the sick friend. I didn't want, when I was at 00:40:44.380 --> 00:40:51.800 a gathering of people, to be the person that 00:40:51.800 --> 00:40:54.219 they were like, oh, we can't do things because 00:40:54.219 --> 00:40:59.090 of Sarah. Or like, Sarah is a problem. Because 00:40:59.090 --> 00:41:01.929 she's disabled, which is a horrible way of thinking. 00:41:02.150 --> 00:41:05.969 But I was scared. I was, I can't control the 00:41:05.969 --> 00:41:08.550 way people think. And this is the way some people 00:41:08.550 --> 00:41:12.409 do think. So I was so scared that people weren't 00:41:12.409 --> 00:41:14.329 going to want to be around me because I was going 00:41:14.329 --> 00:41:21.730 to be the sick friend. And I realized before 00:41:21.730 --> 00:41:27.630 surgery that one, I already was the sick friend. 00:41:28.159 --> 00:41:30.719 I mean, I was always needing to use the bathroom. 00:41:30.780 --> 00:41:33.639 I was always sick because of IBD, even if it 00:41:33.639 --> 00:41:38.420 was like fake sick. And so I always had to cancel 00:41:38.420 --> 00:41:42.980 plans because I wasn't feeling good. So my therapist 00:41:42.980 --> 00:41:45.519 was the one who told me, but Sarah, you already 00:41:45.519 --> 00:41:49.719 are the sick friend. And that call out kind of 00:41:49.719 --> 00:41:52.260 made me feel a little better because I realized 00:41:52.260 --> 00:41:58.409 everyone in my life does still love me, even 00:41:58.409 --> 00:42:03.269 though I have always canceled plans. I've always 00:42:03.269 --> 00:42:05.769 needed accommodations for our hangouts or to 00:42:05.769 --> 00:42:09.110 find the nearest bathroom. Like, our activities 00:42:09.110 --> 00:42:13.309 would be suddenly stopped because we need to 00:42:13.309 --> 00:42:16.530 emergently find a restroom or, like, I need to 00:42:16.530 --> 00:42:18.690 go to the restroom in someone's front lawn, which 00:42:18.690 --> 00:42:23.570 has happened multiple times. So, even though 00:42:23.570 --> 00:42:26.480 all of... that has happened. I've never lost 00:42:26.480 --> 00:42:31.019 a friend from it. And it's, for me, it's only 00:42:31.019 --> 00:42:33.619 created funny stories with my friends or like 00:42:33.619 --> 00:42:39.139 bonded us. So I think realizing like, even though 00:42:39.139 --> 00:42:44.559 I was the sick friend, it didn't change the way 00:42:44.559 --> 00:42:48.980 people loved me. And so I think that statement 00:42:48.980 --> 00:42:56.710 is that Even if I am the sick friend, no one 00:42:56.710 --> 00:42:59.130 sees me as the sick friend. Like that's not my 00:42:59.130 --> 00:43:02.230 identity to my friends. I am just their friend. 00:43:04.469 --> 00:43:10.610 Last one, you wrote, my body is not ruined. I 00:43:10.610 --> 00:43:12.710 was also really worried about that one before 00:43:12.710 --> 00:43:18.610 surgery. I, as someone who before surgery was 00:43:18.610 --> 00:43:21.150 in a really toxic cycle with my body and never 00:43:21.150 --> 00:43:27.599 happy with my body. I just thought that this 00:43:27.599 --> 00:43:30.599 was going to make me so ugly and it was going 00:43:30.599 --> 00:43:33.400 to ruin my body and I was never going to look 00:43:33.400 --> 00:43:42.000 pretty again. And then I will, before surgery, 00:43:42.199 --> 00:43:44.840 I was also talking to my therapist about it and 00:43:44.840 --> 00:43:48.199 we were talking about how all of the different 00:43:48.199 --> 00:43:51.429 things in life. how your body will change. So 00:43:51.429 --> 00:43:54.369 as I get older and have different experiences, 00:43:54.489 --> 00:43:58.329 have kids, get injured at some point, my body 00:43:58.329 --> 00:44:04.409 is going to constantly be changing. And that 00:44:04.409 --> 00:44:09.690 doesn't mean it's becoming ruined. And I think 00:44:09.690 --> 00:44:15.610 now when I look at my body, I don't view it negatively 00:44:15.610 --> 00:44:21.750 ever. I... I like my laparotomy scar. Now I think 00:44:21.750 --> 00:44:24.869 it looks cool because now when I'm in the gym, 00:44:24.949 --> 00:44:28.010 I don't have abs, but I have a really cool scar 00:44:28.010 --> 00:44:32.469 when I'm in a sports bra. And I think that looks 00:44:32.469 --> 00:44:36.650 cool. And now when I look at my bag or I have 00:44:36.650 --> 00:44:39.070 the top of my bag out when I'm wearing certain 00:44:39.070 --> 00:44:44.230 pants, I don't ever look in the mirror and think, 00:44:44.269 --> 00:44:50.050 oh, my body's ruined now. kind of view it almost 00:44:50.050 --> 00:44:53.909 like an accessory like to me i think it makes 00:44:53.909 --> 00:44:57.889 my body look cool and it's different and but 00:44:57.889 --> 00:45:03.050 not in a bad way so most of these statements 00:45:03.050 --> 00:45:06.929 all these statements still feel true to you now 00:45:06.929 --> 00:45:09.630 which is really really great i think what you 00:45:09.630 --> 00:45:13.309 just said about your body and your ostomy and 00:45:13.789 --> 00:45:15.449 what it looks like today. I think that's a really 00:45:15.449 --> 00:45:18.150 positive and a hopeful message. And of course, 00:45:18.170 --> 00:45:20.789 we want to always end on a hopeful note. But 00:45:20.789 --> 00:45:22.789 before we end, before we actually also look into 00:45:22.789 --> 00:45:25.489 the future, I want to travel back in time with 00:45:25.489 --> 00:45:29.789 you one last time. And I want you to tell me, 00:45:29.869 --> 00:45:33.510 and you can pick either one, either pick diagnosis 00:45:33.510 --> 00:45:36.269 day, the official diagnosis when you were 23, 00:45:36.449 --> 00:45:40.110 or you can pick the 15 -year -old you when the 00:45:40.110 --> 00:45:42.840 symptoms started. So pick one of the two and 00:45:42.840 --> 00:45:46.099 then tell me if you could speak to yourself at 00:45:46.099 --> 00:45:52.039 15 or at 23, what would you say? I think I'd 00:45:52.039 --> 00:45:58.280 pick the 15 year old me. And I would want to 00:45:58.280 --> 00:46:02.079 tell her that she's going to go through a lot, 00:46:02.099 --> 00:46:04.960 but she's also going to learn a lot through it. 00:46:05.099 --> 00:46:07.780 And even though there's going to be a lot of 00:46:07.780 --> 00:46:13.550 ups and downs. It's really going to be a journey 00:46:13.550 --> 00:46:19.650 and there's so much that's going to come from 00:46:19.650 --> 00:46:24.590 it. So everything she will go through has a purpose 00:46:24.590 --> 00:46:29.269 and will help her become the best version of 00:46:29.269 --> 00:46:32.670 herself that she'll reach later on. Sound advice. 00:46:32.909 --> 00:46:36.510 I like the way you put that. So now that we've 00:46:36.510 --> 00:46:37.969 looked in the past one more time, let's look 00:46:37.969 --> 00:46:41.250 into the future. This is a tough one to answer, 00:46:41.389 --> 00:46:43.329 but everybody sort of has at least a feeling 00:46:43.329 --> 00:46:45.769 about this one. And that's why I like to keep 00:46:45.769 --> 00:46:49.050 asking it. And that is, do you think we will 00:46:49.050 --> 00:46:55.150 see a cure to IBD in our lifetime? I don't. There 00:46:55.150 --> 00:46:59.750 are so many different causes of IBD, it seems. 00:47:00.570 --> 00:47:06.210 And I think maybe we'll be able to cure some 00:47:06.210 --> 00:47:09.130 of them by figuring out what the root of it is. 00:47:09.659 --> 00:47:12.639 But I don't think there'll ever be a one -size 00:47:12.639 --> 00:47:18.699 -fits -all cure. So I'm honestly not sure. I 00:47:18.699 --> 00:47:24.840 have a feeling that no, only because IBD is so 00:47:24.840 --> 00:47:28.280 different for so many people and can be caused 00:47:28.280 --> 00:47:32.820 by so many things. But I do think like with research, 00:47:32.960 --> 00:47:38.400 maybe some of the reasons that IBD... comes about 00:47:38.400 --> 00:47:40.719 maybe they'll be able to find a cure for those 00:47:40.719 --> 00:47:46.679 that's a good way to put it so sarah your story 00:47:46.679 --> 00:47:50.800 is definitely one of resilience but also a very 00:47:50.800 --> 00:47:53.840 deep introspection so i want to thank you so 00:47:53.840 --> 00:47:55.760 much for taking the time today to share your 00:47:55.760 --> 00:47:58.460 journey a lot of inspiration to find in there 00:47:58.460 --> 00:48:02.280 and i'm very happy that you are at a stage now 00:48:02.280 --> 00:48:04.679 where you were able to reclaim your life and 00:48:05.369 --> 00:48:07.329 I wish you nothing but the best moving forward. 00:48:07.469 --> 00:48:10.469 And thank you again for being with us today. 00:48:10.989 --> 00:48:13.150 Thank you. And thank you for letting me talk 00:48:13.150 --> 00:48:15.610 shit with you. That's it for today's episode 00:48:15.610 --> 00:48:19.030 of Colitis Unfiltered. I'm Frank Klebring. And 00:48:19.030 --> 00:48:22.110 if this hit home or hit your gut, do us a favor. 00:48:22.309 --> 00:48:25.230 Subscribe to the show and follow us at Colitis 00:48:25.230 --> 00:48:28.710 Unfiltered on YouTube, Substack, Instagram, Threads, 00:48:28.710 --> 00:48:31.909 TikTok, and Reddit. We'll see you soon for more 00:48:31.909 --> 00:48:33.710 inspiring stories from the bathroom floor.