WEBVTT 00:00:02.899 --> 00:00:07.019 As I've gotten older, I've matured as well. When 00:00:07.019 --> 00:00:09.160 I was in my 20s and I had ulcerative colitis, 00:00:09.259 --> 00:00:12.099 I thought, why me? Why do I have to deal with 00:00:12.099 --> 00:00:15.720 this? But now it's like, oh, wow, I was given 00:00:15.720 --> 00:00:19.760 that because now I can help someone else. And 00:00:19.760 --> 00:00:24.120 I feel I have more empathy. I have more compassion 00:00:24.120 --> 00:00:28.179 towards others. If I didn't have this, would 00:00:28.179 --> 00:00:31.350 I be that kind of person? I don't know, but it 00:00:31.350 --> 00:00:36.929 has made me, in hindsight, I feel like a better 00:00:36.929 --> 00:00:40.549 person in the end. This is Janelle, who got diagnosed 00:00:40.549 --> 00:00:43.310 with ulcerative colitis at age 25 in Milwaukee, 00:00:43.530 --> 00:00:46.570 Wisconsin. For years, Janelle navigated flares 00:00:46.570 --> 00:00:49.130 and remission until the day her body stopped 00:00:49.130 --> 00:00:52.310 fighting back. Janelle eventually opted for surgery, 00:00:52.490 --> 00:00:55.850 which gave her her life back. Today, she opens 00:00:55.850 --> 00:00:58.490 up about how she handled the emotional rollercoaster. 00:00:58.890 --> 00:01:01.670 and how humor got her through the worst. This 00:01:01.670 --> 00:01:04.170 is Talking S***, presented by Colitis Unfiltered. 00:01:04.469 --> 00:01:06.849 My name is Frank Tabering, and on this podcast, 00:01:07.069 --> 00:01:11.609 we talk all things IBD. So Janelle, ulcerative 00:01:11.609 --> 00:01:14.930 colitis, age 25. Let's go back to the beginning, 00:01:15.090 --> 00:01:17.769 to where it all started, even before the diagnosis. 00:01:18.030 --> 00:01:20.569 Tell me a little bit about your first symptoms. 00:01:21.370 --> 00:01:24.150 And also when you noticed that something was 00:01:24.150 --> 00:01:27.170 just off, something was wrong, something prompted 00:01:27.170 --> 00:01:30.629 you to seek medical help. Yes. So around the 00:01:30.629 --> 00:01:35.349 age of 23, two years before my diagnosis, I started 00:01:35.349 --> 00:01:40.010 seeing some really weird things coming in when 00:01:40.010 --> 00:01:46.430 I would defecate. It was like white pieces of 00:01:46.430 --> 00:01:49.730 something. I just didn't know what it was. I 00:01:49.730 --> 00:01:51.670 thought it was really weird. And I thought, okay, 00:01:51.730 --> 00:01:55.489 well, maybe I'm lactose intolerant. You know, 00:01:55.489 --> 00:01:58.030 I was having some problems with my dairy. So 00:01:58.030 --> 00:02:01.750 I cut out all lactose. Still was having issues. 00:02:02.049 --> 00:02:05.390 Still was seeing this white discharge coming 00:02:05.390 --> 00:02:10.009 out in my bowel movements. Fast forward a year, 00:02:10.169 --> 00:02:15.810 I now started seeing blood coming out of with 00:02:15.810 --> 00:02:20.330 my feces. And it kind of scared me. I went to 00:02:20.330 --> 00:02:23.849 go see my doctor. She referred me to a gastroenterologist. 00:02:24.449 --> 00:02:27.870 When I called them, they told me that I wouldn't 00:02:27.870 --> 00:02:31.069 be able to come in for six months because I was 00:02:31.069 --> 00:02:33.830 a new patient. And I said, I don't think I have 00:02:33.830 --> 00:02:37.129 six months. Because at that point, I thought 00:02:37.129 --> 00:02:41.430 I was having cancer. Who bleeds from their rectum? 00:02:42.539 --> 00:02:46.240 I'm 25 years old. I don't know much. I told them 00:02:46.240 --> 00:02:49.360 I don't think I have that long. And I told the 00:02:49.360 --> 00:02:52.639 person who I was talking to my symptoms. And 00:02:52.639 --> 00:02:54.699 she said, you either have Crohn's or colitis. 00:02:55.340 --> 00:02:59.439 She assigned me an emergency colonoscopy. So 00:02:59.439 --> 00:03:04.460 I had to do the prep that day. Let my work know, 00:03:04.699 --> 00:03:07.979 like, I'm going to be out tomorrow. I have a 00:03:07.979 --> 00:03:12.500 procedure tomorrow. When I woke up, I was still 00:03:12.500 --> 00:03:16.400 really drowsy. And the doctor said, yes, you 00:03:16.400 --> 00:03:20.159 have ulcerative colitis. And I just looked at 00:03:20.159 --> 00:03:22.099 him like, I don't know. He's speaking another 00:03:22.099 --> 00:03:24.139 language to me. I don't know what he's talking 00:03:24.139 --> 00:03:27.819 about. They put me on medication. I went on Azacol 00:03:27.819 --> 00:03:33.099 right away. Did I see improvements? No. I wasn't 00:03:33.099 --> 00:03:37.740 bleeding. I wasn't getting the mucus discharge. 00:03:37.939 --> 00:03:40.400 That's what they ended up finding, that white. 00:03:40.729 --> 00:03:42.650 that white substance that was coming out, that 00:03:42.650 --> 00:03:46.090 discharge, it was mucus because my body was trying 00:03:46.090 --> 00:03:50.569 to heal itself and heal the wounds. My white 00:03:50.569 --> 00:03:53.110 cells would just attack it. There were times 00:03:53.110 --> 00:03:56.550 I went in remission. I have some very embarrassing 00:03:56.550 --> 00:04:00.069 moments. I'm trying to even get to work sometimes 00:04:00.069 --> 00:04:03.509 and you'd have an accident. But the best thing 00:04:03.509 --> 00:04:07.150 I can tell people is have an emergency kit with 00:04:07.150 --> 00:04:10.719 you all the time. Here in America, we drive a 00:04:10.719 --> 00:04:13.300 lot instead of using public transportation. So 00:04:13.300 --> 00:04:19.060 in my car, I would have a bin that included like 00:04:19.060 --> 00:04:21.560 a flour container, like something that you would 00:04:21.560 --> 00:04:24.699 hold like flour or sugar in. And I would put 00:04:24.699 --> 00:04:31.839 a doggy bag in it and then use that and put that 00:04:31.839 --> 00:04:36.139 underneath my bum. And it would collect in the 00:04:36.139 --> 00:04:38.899 dog bag. And I could just throw out the doggy 00:04:38.899 --> 00:04:42.060 bag. I also brought like extra clothes, toilet 00:04:42.060 --> 00:04:45.920 paper, you know, wet wipes, like actual wipes. 00:04:46.060 --> 00:04:48.639 So if any feces gets on your hand, you could 00:04:48.639 --> 00:04:52.259 clean it up. This is what I dealt with for nearly 00:04:52.259 --> 00:05:00.240 20 years. And I got to the point where one of 00:05:00.240 --> 00:05:04.100 my colonoscopies, they said that I had ulcers 00:05:04.100 --> 00:05:08.930 now all the way. Colitis starts in your rectum. 00:05:09.509 --> 00:05:13.670 So that's where mine definitely began. And it 00:05:13.670 --> 00:05:16.910 started going up. But it stayed like that for 00:05:16.910 --> 00:05:19.930 years. It stayed like that for like 10, 15 years. 00:05:20.069 --> 00:05:23.170 And then all of a sudden, one day, my body was 00:05:23.170 --> 00:05:25.889 like, I'm not going to fight this anymore. I'm 00:05:25.889 --> 00:05:29.750 done. And it just, all the ulcers went all the 00:05:29.750 --> 00:05:33.709 way. They weren't able to see in the colonoscopy 00:05:33.709 --> 00:05:36.629 if It was actually going into the small intestine. 00:05:36.990 --> 00:05:39.230 They said they wouldn't know unless the surgeon 00:05:39.230 --> 00:05:43.810 looked at it. Everybody I met with was like, 00:05:43.910 --> 00:05:45.990 you don't want to get rid of your colon. You 00:05:45.990 --> 00:05:48.550 want to keep it. And I said, you know what? I've 00:05:48.550 --> 00:05:54.790 suffered so much and in so much pain that I don't 00:05:54.790 --> 00:05:57.730 want it anymore. I researched. I met with other 00:05:57.730 --> 00:06:01.350 people who had an ostomy bag. And I was like, 00:06:01.490 --> 00:06:04.949 they have their life back. I think I could do 00:06:04.949 --> 00:06:08.129 this. So I told the surgeon, I was very clear 00:06:08.129 --> 00:06:11.350 with him. I want this. I want this ileostomy 00:06:11.350 --> 00:06:14.529 bag and I want it to be permanent. And he was 00:06:14.529 --> 00:06:18.209 like, no, no, you might want a J pouch. Well, 00:06:18.269 --> 00:06:22.050 when I researched the J pouch, all they do is 00:06:22.050 --> 00:06:24.230 they take their small intestine and they sew 00:06:24.230 --> 00:06:27.470 it into the rectum. Well, there I'd have my rectum 00:06:27.470 --> 00:06:31.029 still, which has ulcerative colitis in it. I 00:06:31.029 --> 00:06:33.850 was like, I'm good. And the muscles are gone 00:06:33.850 --> 00:06:37.230 back there. Like I would just go constantly. 00:06:37.850 --> 00:06:43.709 So it was, no, that was not, I said no to the 00:06:43.709 --> 00:06:46.449 J pouch. And I told him, I was like, please remove 00:06:46.449 --> 00:06:50.189 my rectum. It's of no use. And he said, no, no, 00:06:50.209 --> 00:06:52.430 we may keep it. It'll heal on its own. And I 00:06:52.430 --> 00:06:55.449 said, no, it won't. I know my body. I know ulcerative 00:06:55.449 --> 00:06:57.730 colitis. It doesn't heal on its own. And even 00:06:57.730 --> 00:07:00.750 if I have that little. the little bit of rectum 00:07:00.750 --> 00:07:05.050 left, it's going to be a problem. So I had my 00:07:05.050 --> 00:07:09.430 surgery, I woke up. And this, get this, this 00:07:09.430 --> 00:07:12.709 is really funny story. As I get up out of my 00:07:12.709 --> 00:07:16.009 surgery, my surgeon had told me I was so tiny 00:07:16.009 --> 00:07:18.490 and small at that time. He was like, I wasn't, 00:07:18.490 --> 00:07:20.269 he wasn't sure if he was going to be able to 00:07:20.269 --> 00:07:23.529 go in laparoscopically into tiny little incisions, 00:07:23.529 --> 00:07:26.189 or if he was going to have to cut my stomach 00:07:26.189 --> 00:07:29.500 all the way down. So when I got up, out of it. 00:07:29.560 --> 00:07:32.240 I was like, open up my gown, open up my gown. 00:07:32.259 --> 00:07:35.920 I want to see, you know, how it looks. And my 00:07:35.920 --> 00:07:38.680 husband is standing next to me in the hospital 00:07:38.680 --> 00:07:42.899 bed and we're opening this up and I see little 00:07:42.899 --> 00:07:45.899 incisions. And I was like, oh my gosh, he actually 00:07:45.899 --> 00:07:49.019 did little incisions. But you have a clear bag 00:07:49.019 --> 00:07:54.680 and the clear bag is showing black, red, just 00:07:54.680 --> 00:07:58.430 horrible, right? My husband is standing there 00:07:58.430 --> 00:08:04.129 and he sees this and he faints. And I'm like, 00:08:04.189 --> 00:08:07.129 I'm supposed to be treated by the nurses right 00:08:07.129 --> 00:08:09.610 now. And now they're taking care of my husband. 00:08:09.689 --> 00:08:12.949 So, you know, there's little funny things that 00:08:12.949 --> 00:08:16.730 happen along this journey. But I wouldn't change 00:08:16.730 --> 00:08:21.170 anything because it's made me who I am today. 00:08:22.110 --> 00:08:25.069 It's made me strong. It's made me be an advocate 00:08:25.069 --> 00:08:29.730 for myself. And now that I have my ostomy bag, 00:08:29.889 --> 00:08:33.230 I'm back to being myself, actually better than 00:08:33.230 --> 00:08:37.450 I was before. I'm never doubling over in pain. 00:08:37.710 --> 00:08:41.149 I'm never looking every time I enter a store 00:08:41.149 --> 00:08:45.509 or someplace I go, where's the bathroom? Where's 00:08:45.509 --> 00:08:47.710 the bathroom? Because you always had to plan. 00:08:47.870 --> 00:08:51.490 You never knew when. the flare would happen. 00:08:51.809 --> 00:08:55.429 So now I can just actually relax and enjoy my 00:08:55.429 --> 00:08:58.210 life and enjoy going to places without having 00:08:58.210 --> 00:09:01.190 to run for the bathroom. And it's great because 00:09:01.190 --> 00:09:04.669 I can travel and I don't have to stop as much 00:09:04.669 --> 00:09:08.350 to, you know, have a bowel movement because it's 00:09:08.350 --> 00:09:12.129 just happening all the time. Wow. So yeah, that's, 00:09:12.210 --> 00:09:14.730 so thank you for that summary. There's a lot 00:09:14.730 --> 00:09:18.029 to dissect here. So I'm going to go back a little 00:09:18.029 --> 00:09:19.990 bit because there's something interesting that 00:09:19.990 --> 00:09:23.350 you said. You were diagnosed, you were put on 00:09:23.350 --> 00:09:25.690 azacol for a while, and then you said there's 00:09:25.690 --> 00:09:28.929 a period of almost 20 years, right? During those 00:09:28.929 --> 00:09:32.620 20 years... Did you stay on just as a call? How 00:09:32.620 --> 00:09:34.779 did you manage? Were you constantly flaring? 00:09:34.879 --> 00:09:37.179 Were you sporadically flaring? How bad were the 00:09:37.179 --> 00:09:41.639 flares? Because 20 years is a long period, you 00:09:41.639 --> 00:09:43.539 know, before getting to the point to say, oh, 00:09:43.539 --> 00:09:46.139 well, now all of a sudden, like, I cannot take 00:09:46.139 --> 00:09:48.940 it anymore. So maybe talk a little bit about 00:09:48.940 --> 00:09:52.419 those managing the disease for 20 years and what 00:09:52.419 --> 00:09:54.700 that was like for you. Come to think of it, most 00:09:54.700 --> 00:09:57.720 of the time it's been a blur. Thank God for that, 00:09:57.740 --> 00:10:01.549 right? For the most part, I did stay on Azacol. 00:10:01.750 --> 00:10:06.570 They did move me to some other types of medications, 00:10:06.830 --> 00:10:09.970 not remembering some of the names, but they would 00:10:09.970 --> 00:10:12.750 make me feel really sick where I felt like I 00:10:12.750 --> 00:10:16.570 had the flu. So we wouldn't stay on those. I 00:10:16.570 --> 00:10:19.450 would just stay on the Azacol. There were times 00:10:19.450 --> 00:10:23.389 that I would flare up more because we found out 00:10:23.389 --> 00:10:26.909 that I also had irritable bowel syndrome. With 00:10:26.909 --> 00:10:29.889 that, any stressors, anything like that, it's 00:10:29.889 --> 00:10:32.350 going to aggravate it as well. So there were 00:10:32.350 --> 00:10:36.409 times that I would also go on cordial steroids, 00:10:36.470 --> 00:10:40.669 like a prednisone or budesonide. I ballooned 00:10:40.669 --> 00:10:44.110 up really bad within my face. I was constantly 00:10:44.110 --> 00:10:48.179 irritable. wanting food all the time. But I looked 00:10:48.179 --> 00:10:51.240 into a lot of holistic things of changing my 00:10:51.240 --> 00:10:55.039 diet, cutting out seed oils, cutting out carbohydrates, 00:10:55.419 --> 00:10:59.639 cutting out sugar. Sugar causes a lot of inflammation 00:10:59.639 --> 00:11:03.419 in your body. So does seed oils. So learning 00:11:03.419 --> 00:11:06.559 that along my journey, it's really difficult 00:11:06.559 --> 00:11:11.200 in the US to get around these things. So I've 00:11:11.200 --> 00:11:15.240 ended up having to learn how to cook my own food. 00:11:15.419 --> 00:11:20.059 So diet definitely helped. I did a lot of meditations 00:11:20.059 --> 00:11:23.899 as well to help calm my stress that I had in 00:11:23.899 --> 00:11:27.940 my life. And just working with those medications. 00:11:28.039 --> 00:11:30.220 And there's times that I actually had remission 00:11:30.220 --> 00:11:33.879 for three years, had no symptoms. I was having 00:11:33.879 --> 00:11:37.740 normal bowel movements. Those were the most amazing 00:11:37.740 --> 00:11:40.440 times. But the other times when I'd flare up, 00:11:40.539 --> 00:11:43.450 it would get pretty bad. Obviously, when you 00:11:43.450 --> 00:11:45.350 have periods of remission, you think, okay, right, 00:11:45.470 --> 00:11:47.330 the disease is under control. And yeah, you might 00:11:47.330 --> 00:11:49.909 flare up every now and then. But as you got closer 00:11:49.909 --> 00:11:55.090 to a period of it getting worse and worse, so 00:11:55.090 --> 00:11:58.269 much so that you chose surgery, was there never 00:11:58.269 --> 00:12:03.169 a time that your doctors, your GI mentioned biologics 00:12:03.169 --> 00:12:08.649 to try and save the day? So that was offered 00:12:08.649 --> 00:12:14.320 to me. In the middle of my journey. But at that 00:12:14.320 --> 00:12:20.860 time, it was... Remicade and Humira? Remicade, 00:12:20.919 --> 00:12:23.559 yeah. Yeah, exactly. The two early ones. The 00:12:23.559 --> 00:12:27.340 two as early ones. And I needed to go on like 00:12:27.340 --> 00:12:29.820 a trial basis. They weren't just like giving 00:12:29.820 --> 00:12:34.120 it out back then. And that was around like the 00:12:34.120 --> 00:12:40.080 2010s. Then like... As I was getting closer to 00:12:40.080 --> 00:12:42.840 the end of my journey of removing it towards 00:12:42.840 --> 00:12:46.679 the surgery, then I started seeing more biologics 00:12:46.679 --> 00:12:50.580 coming out. And at that time, they were offering 00:12:50.580 --> 00:12:53.980 them, but I said, I just, I feel like my, I felt 00:12:53.980 --> 00:12:57.399 like my colon was at its end of life, that I 00:12:57.399 --> 00:12:59.899 should have had those earlier in my journey. 00:13:00.419 --> 00:13:03.220 You know, now I was at the point where it's like, 00:13:03.299 --> 00:13:08.179 it's irreversible. Because it was so much, the 00:13:08.179 --> 00:13:11.700 whole colon was so damaged with ulcers. Did the 00:13:11.700 --> 00:13:15.779 choice to not go the biological road then, did 00:13:15.779 --> 00:13:19.159 that rest mostly on you? Or like, did the doctor 00:13:19.159 --> 00:13:20.620 say, hey, maybe let's try them? And you just 00:13:20.620 --> 00:13:23.740 said, listen, I know my body, no thank you. And 00:13:23.740 --> 00:13:25.940 also, if that was the case, or even if it wasn't 00:13:25.940 --> 00:13:28.440 the case, if you're looking back, do you ever 00:13:28.440 --> 00:13:32.470 regret not trying them out? I just... didn't 00:13:32.470 --> 00:13:35.970 get the opportunity in my journey. So at the 00:13:35.970 --> 00:13:38.210 beginning, it was Humira, Remicade, and I was 00:13:38.210 --> 00:13:40.889 seriously looking into those because I was put 00:13:40.889 --> 00:13:44.049 into the trial, but they never called me to try 00:13:44.049 --> 00:13:49.049 it. So it wasn't just prescribed. I don't understand 00:13:49.049 --> 00:13:51.649 why, like how other people got it prescribed, 00:13:51.809 --> 00:13:55.509 but my doctor wouldn't prescribe it. And then 00:13:55.509 --> 00:13:59.350 again, later in my journey, they offered it again. 00:14:00.159 --> 00:14:03.879 But then that was when I said, no, I don't think 00:14:03.879 --> 00:14:06.460 that that's going to work either. Just because 00:14:06.460 --> 00:14:08.759 I was getting fed up being a guinea pig with 00:14:08.759 --> 00:14:13.440 medications not working. Sure. Yeah, of course. 00:14:13.480 --> 00:14:15.879 At one point it's very discouraging. So you sort 00:14:15.879 --> 00:14:19.200 of lose the trust in science if it really doesn't 00:14:19.200 --> 00:14:24.820 work anymore. Now, obviously you making the decision 00:14:24.820 --> 00:14:29.779 to have your intestines removed. That meant that 00:14:29.779 --> 00:14:31.759 you were at a stage where you just couldn't take 00:14:31.759 --> 00:14:34.259 it anymore, right? Yes. So obviously your condition 00:14:34.259 --> 00:14:39.039 must have severely degraded. How did you deal 00:14:39.039 --> 00:14:43.320 with that mentally? First of all, you know... 00:14:43.549 --> 00:14:45.289 It getting worse all of a sudden after having 00:14:45.289 --> 00:14:47.789 years of remission and a couple of flares, but 00:14:47.789 --> 00:14:49.429 obviously at one point it really started to go 00:14:49.429 --> 00:14:52.110 bad. How did you deal with that mentally, seeing 00:14:52.110 --> 00:14:54.610 your body basically continuing to turn against 00:14:54.610 --> 00:14:57.230 you to the point that you're the one who has 00:14:57.230 --> 00:14:58.730 to make a decision and say, you know, I want 00:14:58.730 --> 00:15:01.450 this thing out of me? That mental health journey 00:15:01.450 --> 00:15:05.850 was very tough. I will not lie about that. There 00:15:05.850 --> 00:15:08.330 were times that I've wanted to take my own life 00:15:08.330 --> 00:15:11.830 just because I was sick of tired of dealing with 00:15:11.830 --> 00:15:15.049 the pain. dealing with medications that didn't 00:15:15.049 --> 00:15:19.129 work, dealing with doctors who just didn't understand 00:15:19.129 --> 00:15:23.110 it as much as you would think they would. Towards 00:15:23.110 --> 00:15:27.230 the end of my journey, I think I got better about 00:15:27.230 --> 00:15:29.889 it because I was like, this is my life. This 00:15:29.889 --> 00:15:31.809 is what I've been dealt with. These are the cards 00:15:31.809 --> 00:15:35.149 I've been dealt, right? How can I make the best 00:15:35.149 --> 00:15:38.690 of these moments? That's when I started standing 00:15:38.690 --> 00:15:42.049 up for myself more and becoming more of an advocate 00:15:42.049 --> 00:15:46.610 for myself and really researching things. I mean, 00:15:46.610 --> 00:15:51.090 now the internet is blown up with so much information 00:15:51.090 --> 00:15:56.190 that I was able to do a lot of research on my 00:15:56.190 --> 00:15:59.570 own, especially social media helped me as well 00:15:59.570 --> 00:16:02.549 with people sharing their stories and going, 00:16:02.629 --> 00:16:06.149 hey, I'm dealing with the same thing. That helped 00:16:06.149 --> 00:16:10.570 me along going, hey, I'm not alone on this. And 00:16:10.570 --> 00:16:13.669 I started connecting with people to help get 00:16:13.669 --> 00:16:16.309 me through it. Because when you're around your 00:16:16.309 --> 00:16:19.049 own family and friends, if they don't have it, 00:16:19.090 --> 00:16:22.250 they don't understand. They may be empathetic, 00:16:22.250 --> 00:16:26.809 but they don't fully grasp the day in, day out 00:16:26.809 --> 00:16:31.529 of what you actually deal with. And so when you 00:16:31.529 --> 00:16:33.870 actually talk to someone that actually has dealt 00:16:33.870 --> 00:16:40.549 with it, It feels like, oh my gosh, I'm home. 00:16:40.690 --> 00:16:43.190 I have someone now that gets it. You know, you're 00:16:43.190 --> 00:16:46.850 not alone. For sure. It's interesting that you 00:16:46.850 --> 00:16:51.110 say this because you would expect that family 00:16:51.110 --> 00:16:54.289 and close friends are really your main support 00:16:54.289 --> 00:16:56.529 system. And of course, they can be in many ways 00:16:56.529 --> 00:17:02.110 as you struggle with IBD. But I feel the same 00:17:02.110 --> 00:17:05.119 way. It's like... For us, it's pretty obvious 00:17:05.119 --> 00:17:08.700 what's going on. IBD is referred to as an invisible 00:17:08.700 --> 00:17:11.319 illness for a reason. But then, you know, especially 00:17:11.319 --> 00:17:13.339 close family members or even partners, you know, 00:17:13.339 --> 00:17:16.099 they do see us suffer to a certain extent, right? 00:17:16.180 --> 00:17:17.720 Whether it's fatigue, whether it's like just 00:17:17.720 --> 00:17:20.640 hiding out in the bathroom or just wanting to 00:17:20.640 --> 00:17:22.880 sort of isolate ourselves and dealing with the 00:17:22.880 --> 00:17:26.829 pain in silence. But in your case... Did you 00:17:26.829 --> 00:17:29.589 try to explain this to your close family members 00:17:29.589 --> 00:17:32.809 or to your partner or husband? I don't know if 00:17:32.809 --> 00:17:35.849 that was a husband at that point. And how did 00:17:35.849 --> 00:17:37.589 you try to communicate? How did you try to explain 00:17:37.589 --> 00:17:38.869 it? Because a lot of people seem to struggle 00:17:38.869 --> 00:17:43.670 to like sort of find the right way to share what 00:17:43.670 --> 00:17:45.609 we're going through with loved ones. Yeah. And 00:17:45.609 --> 00:17:49.170 this is a funny story I'll share with you because 00:17:49.170 --> 00:17:53.150 I felt like no matter what I said, it wouldn't. 00:17:54.700 --> 00:17:58.200 come to like it didn't hold with people like 00:17:58.200 --> 00:18:01.920 they didn't really understand or the grasp the 00:18:01.920 --> 00:18:06.039 the the pain I'm more of a person who I think 00:18:06.039 --> 00:18:08.799 rather than talk about it I'll have to show it 00:18:08.799 --> 00:18:14.759 right so do I need to prove this to you fine 00:18:14.759 --> 00:18:17.980 I will put myself in pain to prove to you that 00:18:17.980 --> 00:18:22.299 I have this problem so my mother -in -law decided 00:18:23.069 --> 00:18:26.329 She's going to make a chili, and she used six 00:18:26.329 --> 00:18:30.089 different beans in it. I can't have that much 00:18:30.089 --> 00:18:34.589 fiber, as I was explaining before. So I told 00:18:34.589 --> 00:18:36.710 her, I can't eat your chili. She's like, oh, 00:18:36.730 --> 00:18:39.910 it'll be fine, Janelle. You can have this. It'll 00:18:39.910 --> 00:18:41.490 be fine. I said, you know what? You're right. 00:18:41.630 --> 00:18:44.869 It will be fine, knowing it wouldn't, right? 00:18:45.130 --> 00:18:48.509 But I was like, I'm at the point now where I 00:18:48.509 --> 00:18:51.779 just want to prove to her that it's not. Within 00:18:51.779 --> 00:18:55.539 an hour after eating, the chili was good, by 00:18:55.539 --> 00:18:59.480 the way. But within an hour, I was running to 00:18:59.480 --> 00:19:02.799 the bathroom. I was actually crying a little 00:19:02.799 --> 00:19:07.539 bit in pain. And my mother -in -law came to me 00:19:07.539 --> 00:19:11.640 and said, I am so sorry. I now understand what 00:19:11.640 --> 00:19:14.319 you're going through. They don't get that until 00:19:14.319 --> 00:19:17.890 they actually physically see it. And that's hard. 00:19:18.210 --> 00:19:22.269 But I'm that kind of strong -willed mind person 00:19:22.269 --> 00:19:24.750 who's like, all right, fine, let's just go do 00:19:24.750 --> 00:19:29.970 this. I'll prove it to you. You gave them a front 00:19:29.970 --> 00:19:32.809 row seat. I sure did. And they smelled it too. 00:19:36.700 --> 00:19:40.720 So, I mean, let me say that's probably a quite 00:19:40.720 --> 00:19:44.500 unconventional way of explaining what you're 00:19:44.500 --> 00:19:47.920 going through. Right. But this is interesting 00:19:47.920 --> 00:19:51.779 because I can tell that you have your own particular 00:19:51.779 --> 00:19:54.559 sense of humor, right? Yes. And clearly, you 00:19:54.559 --> 00:19:58.039 know, we use our sense of humor when we feel 00:19:58.039 --> 00:19:59.559 good, but sometimes, you know, our sense of humor 00:19:59.559 --> 00:20:01.480 then also helps us through some of the times 00:20:01.480 --> 00:20:05.359 when we feel bad. Now, going back to the surgery. 00:20:06.869 --> 00:20:09.589 you had the story, you know, that you joked about 00:20:09.589 --> 00:20:11.309 like, hey, you know, your husband was the one 00:20:11.309 --> 00:20:13.509 fainting and, you know, nurses took care of him 00:20:13.509 --> 00:20:19.529 and stuff. So did you apply this mental approach, 00:20:19.789 --> 00:20:22.750 like this sort of sense of humor as well, preparing 00:20:22.750 --> 00:20:26.289 for surgery, going through surgery, or were you 00:20:26.289 --> 00:20:30.269 scared? Were you not scared? Oh, gosh, all of 00:20:30.269 --> 00:20:33.119 those, all of those, yes. Humor is one of the 00:20:33.119 --> 00:20:35.319 things that has gotten me through all of this. 00:20:35.619 --> 00:20:39.819 The poop jokes just get me through that because 00:20:39.819 --> 00:20:42.000 there's a lot that you can just joke about. I 00:20:42.000 --> 00:20:44.240 mean, even your podcast is like, let's just talk 00:20:44.240 --> 00:20:46.940 about shit, right? I mean, this is what we deal 00:20:46.940 --> 00:20:52.220 with, right? So was I scared? Absolutely. You 00:20:52.220 --> 00:20:55.559 have a 50 -50 shot of making it or not making 00:20:55.559 --> 00:20:58.960 it. But I felt comfortable knowing that I was 00:20:58.960 --> 00:21:03.549 in good hands. things were to not go right, well, 00:21:03.589 --> 00:21:06.609 then that was my time. When I woke up, I mean, 00:21:06.690 --> 00:21:09.630 we were just laughing, you know, a lot, especially 00:21:09.630 --> 00:21:12.230 when it came to my husband. And I actually had 00:21:12.230 --> 00:21:15.630 to calm myself from laughing because, because 00:21:15.630 --> 00:21:17.910 I, because it was painful. You know, I just had 00:21:17.910 --> 00:21:21.230 all this, like, I've just been stabbed with tons 00:21:21.230 --> 00:21:25.630 of stuff going on in my abdomen. And, you know, 00:21:25.630 --> 00:21:30.099 so, and And as I went on my journey after the 00:21:30.099 --> 00:21:32.180 surgery, you know, they come in, they want you 00:21:32.180 --> 00:21:34.920 to walk right away to like get your blood flowing. 00:21:35.119 --> 00:21:40.039 It makes you heal faster. I was out there every 00:21:40.039 --> 00:21:43.859 day, three times a day, walking the halls. And 00:21:43.859 --> 00:21:46.200 I had a nurse with me and I was like, I would 00:21:46.200 --> 00:21:47.839 tell her, I'm like, I want to go again for a 00:21:47.839 --> 00:21:49.660 walk. And she's like, wow, you're really pushing 00:21:49.660 --> 00:21:51.460 yourself. And I said, no, it's because I want 00:21:51.460 --> 00:21:54.700 to heal. I want to get better. I want to start 00:21:54.700 --> 00:21:58.980 my life. And we would. make jokes as we would 00:21:58.980 --> 00:22:01.839 walk. I'm not saying I was walking really fast, 00:22:02.000 --> 00:22:09.059 but my surgeon came in and he told me, Janelle, 00:22:09.140 --> 00:22:11.299 you are one of my stellar patients that I've 00:22:11.299 --> 00:22:13.940 ever had. He's like, you're out there walking. 00:22:14.119 --> 00:22:17.220 You take everything I tell you, you do it. And 00:22:17.220 --> 00:22:19.579 I said, yeah, this is my body. This is my health. 00:22:19.759 --> 00:22:22.880 If I don't do this, I don't want to, I don't. 00:22:23.150 --> 00:22:25.190 I will be miserable just laying in a bed all 00:22:25.190 --> 00:22:28.650 day becoming a vegetable. And going back to that 00:22:28.650 --> 00:22:31.950 surgery, he didn't take out my rectum, my first 00:22:31.950 --> 00:22:36.529 surgery when he did the ileostomy. So as I had 00:22:36.529 --> 00:22:38.829 mentioned, you know, I have colitis. It starts 00:22:38.829 --> 00:22:42.410 in your rectum. Guess what? I had issues. Six 00:22:42.410 --> 00:22:47.849 months after my ileostomy, I started having a 00:22:47.849 --> 00:22:51.170 lot of water. and mucus. I had two inches back 00:22:51.170 --> 00:22:56.849 there, two inches. And I was having the muscle 00:22:56.849 --> 00:22:59.490 spasms, you know, like you have to go. You know 00:22:59.490 --> 00:23:01.210 how painful that is when you're still trying 00:23:01.210 --> 00:23:04.710 to recover from surgery? So I actually had to 00:23:04.710 --> 00:23:07.069 go back to the surgeon and I told him, I was 00:23:07.069 --> 00:23:10.809 like, I told you to take out my rectum. And he 00:23:10.809 --> 00:23:15.430 was like, yes, you were right. So after that 00:23:15.430 --> 00:23:19.589 surgery, when I woke up, you know, now I don't 00:23:19.589 --> 00:23:24.549 have a rectum. I don't fart. I, you know, I don't 00:23:24.549 --> 00:23:26.789 have to worry about anything back there. It's 00:23:26.789 --> 00:23:32.690 so wonderful. So I have to joke around. And so 00:23:32.690 --> 00:23:35.569 my surgeon comes in and he's like, how you doing? 00:23:35.809 --> 00:23:37.849 How you feeling today? And I was like, I have 00:23:37.849 --> 00:23:41.410 to really ask you a serious question. Does this 00:23:41.410 --> 00:23:47.069 mean I can't do anal beads anymore? He's just 00:23:47.069 --> 00:23:49.549 sit there with a straight face because he's got 00:23:49.549 --> 00:23:51.869 to be professional. And he goes, no, Janelle, 00:23:52.009 --> 00:23:55.769 you don't have a butthole anymore. And I was 00:23:55.769 --> 00:23:58.430 like, I'm just trying to make him laugh, you 00:23:58.430 --> 00:24:00.890 know, because I'm trying to get through this 00:24:00.890 --> 00:24:06.049 with making jokes. You know, there's times that 00:24:06.049 --> 00:24:08.670 I would joke around with people at work that 00:24:08.670 --> 00:24:12.440 I got a new office desk. chair for my my job 00:24:12.440 --> 00:24:14.740 and I was like it's so great because there's 00:24:14.740 --> 00:24:17.180 no farts on it you know I don't fart anymore 00:24:17.180 --> 00:24:22.339 and then I'll tell him oh but then my husband's 00:24:22.339 --> 00:24:24.579 down on it and then he farted on it now it's 00:24:24.579 --> 00:24:28.200 ruined but you have to make jokes about some 00:24:28.200 --> 00:24:30.279 of these things because it gets you through it 00:24:30.279 --> 00:24:34.180 before I would be sitting on the toilet for hours 00:24:35.369 --> 00:24:38.410 just hoping something would pass because it felt 00:24:38.410 --> 00:24:41.990 like I either dealt with diarrhea or constipation 00:24:41.990 --> 00:24:45.890 with colitis. It was always, every day was different 00:24:45.890 --> 00:24:47.809 with colitis. I never knew what I was getting. 00:24:48.190 --> 00:24:52.470 Now it's just, I can live my life again. You 00:24:52.470 --> 00:24:55.410 know, yes, it might be an inconvenience at first 00:24:55.410 --> 00:24:58.579 that you always have to empty this bag, but Your 00:24:58.579 --> 00:25:01.420 life could be so much more worse if you didn't 00:25:01.420 --> 00:25:04.579 have that. If you had a digestive disease that 00:25:04.579 --> 00:25:06.720 caused you to go to the bathroom constantly with 00:25:06.720 --> 00:25:11.160 a lot of pain, it caused you fatigue, it takes 00:25:11.160 --> 00:25:14.819 away your malnutrition of your food at times, 00:25:14.980 --> 00:25:18.140 you're dealing with anemia, just so many different 00:25:18.140 --> 00:25:19.660 things that you're dealing with when you have 00:25:19.660 --> 00:25:22.299 ulcerative colitis that you don't have to deal 00:25:22.299 --> 00:25:25.210 with when you have an ostomy anymore. Absolutely. 00:25:25.430 --> 00:25:29.509 You're absolutely right. And I'm really happy 00:25:29.509 --> 00:25:32.750 to hear that humor served you well and that you 00:25:32.750 --> 00:25:36.289 bring humor into your advocacy as well and your 00:25:36.289 --> 00:25:39.170 awareness. So keep doing that because it's a 00:25:39.170 --> 00:25:41.970 strength and not everybody has the strength to 00:25:41.970 --> 00:25:44.509 relate on something like humor to get them through 00:25:44.509 --> 00:25:49.069 an ordeal like this one. You touched as we segue 00:25:49.069 --> 00:25:52.130 into the present and slowly inch towards the 00:25:52.130 --> 00:25:54.150 closing and look into the future as well. You 00:25:54.150 --> 00:25:56.829 mentioned it yourself. You talked about how you 00:25:56.829 --> 00:25:59.589 are today. Seems to be going relatively well. 00:25:59.730 --> 00:26:02.589 I can deduct for sure that you have your life 00:26:02.589 --> 00:26:06.049 back. But just very bluntly, do you consider 00:26:06.049 --> 00:26:08.769 yourself cured? I've asked that to my doctor, 00:26:08.829 --> 00:26:11.230 actually, because now that I have no colon or 00:26:11.230 --> 00:26:16.269 rectum, I don't have colitis. However, it is 00:26:16.269 --> 00:26:20.049 an autoimmune disease. Because I had colitis 00:26:20.049 --> 00:26:24.289 for over 10 years, once you have an autoimmune 00:26:24.289 --> 00:26:26.190 disease for over 10 years, you start getting 00:26:26.190 --> 00:26:31.109 other autoimmune diseases. So yes, my colitis 00:26:31.109 --> 00:26:35.130 journey is over, but it's not over as far as 00:26:35.130 --> 00:26:37.250 autoimmune diseases. I now have other autoimmune 00:26:37.250 --> 00:26:40.849 diseases that I deal with. How are you dealing 00:26:40.849 --> 00:26:44.470 with those? Let's say if we want to compare. 00:26:45.450 --> 00:26:47.170 I'm assuming you're still better off than you 00:26:47.170 --> 00:26:50.069 were before. Oh, absolutely. How are you feeling 00:26:50.069 --> 00:26:53.210 just on a general basis than today? Yeah, so 00:26:53.210 --> 00:26:57.670 as I've gotten older, I've matured as well. When 00:26:57.670 --> 00:26:59.829 I was in my 20s and I had ulcerative colitis, 00:26:59.930 --> 00:27:02.769 I thought, why me? Why do I have to deal with 00:27:02.769 --> 00:27:06.369 this? But now it's like, oh, wow, I was given 00:27:06.369 --> 00:27:10.450 that because now I can help someone else. And 00:27:10.450 --> 00:27:14.789 I feel... I have more empathy. I have more compassion 00:27:14.789 --> 00:27:18.869 towards others. If I didn't have this, would 00:27:18.869 --> 00:27:22.009 I be that kind of person? I don't know. But it 00:27:22.009 --> 00:27:27.589 has made me, in hindsight, I feel like a better 00:27:27.589 --> 00:27:34.009 person in the end. Because I never wanted to 00:27:34.009 --> 00:27:36.390 be a helpful person before, and now I want to 00:27:36.390 --> 00:27:39.809 be helpful. Because I had those people who helped 00:27:39.809 --> 00:27:42.599 me on my journey. I want to help someone else 00:27:42.599 --> 00:27:45.779 on their journey now. And it's going to be a 00:27:45.779 --> 00:27:51.059 bumpy road. I'm not going to lie. But speak up 00:27:51.059 --> 00:27:53.619 for yourself. Be an advocate for yourself. Because 00:27:53.619 --> 00:27:56.559 the only one who knows your body the best is 00:27:56.559 --> 00:28:00.640 you. And if you don't like what your doctor is 00:28:00.640 --> 00:28:03.500 saying, see another doctor if you can. Because 00:28:03.500 --> 00:28:06.259 you can get different opinions from different 00:28:06.259 --> 00:28:10.109 doctors. Well, you just answered about... three 00:28:10.109 --> 00:28:13.250 questions in one answer, which is really great. 00:28:13.329 --> 00:28:14.690 You know what that means? I can go straight to 00:28:14.690 --> 00:28:17.349 my next one. Yes, yes. But thank you for sharing 00:28:17.349 --> 00:28:18.950 that. Yes, absolutely. I was going to ask you 00:28:18.950 --> 00:28:20.190 how it changed you as a person. You certainly 00:28:20.190 --> 00:28:22.490 addressed that. And I always do like to ask, 00:28:22.589 --> 00:28:24.589 you know, what kind of advice or word of advice 00:28:24.589 --> 00:28:26.470 you have for people who are going through something 00:28:26.470 --> 00:28:29.950 similar. Something else that I think a lot of 00:28:29.950 --> 00:28:31.789 people struggle with, especially when it comes 00:28:31.789 --> 00:28:36.329 to surgery, living with an ostomy, is body image. 00:28:37.519 --> 00:28:41.099 How has colitis and also your surgery affected 00:28:41.099 --> 00:28:46.279 your body image? Yeah, there were times I've 00:28:46.279 --> 00:28:48.980 always felt dirty. You know, when you poop your 00:28:48.980 --> 00:28:52.740 pants as an adult and you're like, oh, my God, 00:28:52.799 --> 00:28:56.759 I'm a toddler and I have to take care of this. 00:28:56.859 --> 00:29:00.660 You start to degrade yourself like, oh, man, 00:29:00.980 --> 00:29:06.539 like my whole pants are ruined. I was always 00:29:06.539 --> 00:29:11.140 thinner, so I felt like I was okay with the way 00:29:11.140 --> 00:29:13.559 I looked, but I always felt that I was too thin. 00:29:14.099 --> 00:29:16.619 So when I would actually put on a little weight, 00:29:16.720 --> 00:29:19.039 I would get really, really excited. And I was 00:29:19.039 --> 00:29:20.799 like, I'm finally being healthy. I'm finally 00:29:20.799 --> 00:29:23.599 being healthy. I remember dancing around sometimes 00:29:23.599 --> 00:29:26.839 like that when I put on two pounds. But as my 00:29:26.839 --> 00:29:33.579 journey now, having an ostomy, I think I'm even 00:29:33.579 --> 00:29:37.619 sexier now. Because I don't have anything holding 00:29:37.619 --> 00:29:40.160 me back. And I have this cool little bag on my 00:29:40.160 --> 00:29:43.160 belly that nobody else has. It's kind of like 00:29:43.160 --> 00:29:48.859 another accessory that no one sees. You know, 00:29:48.859 --> 00:29:52.700 I love to accessorize with glasses and fun, cool 00:29:52.700 --> 00:29:55.539 things. But at the same time, I look at it as 00:29:55.539 --> 00:30:00.640 like, this is my lifesaver. I think I look sexy 00:30:00.640 --> 00:30:04.460 having a little ostomy bag. And, you know, not 00:30:04.460 --> 00:30:07.759 using the clear one, obviously. But my husband 00:30:07.759 --> 00:30:12.539 doesn't see it when we're together. He doesn't 00:30:12.539 --> 00:30:17.480 say anything to me like, oh, that's disgusting. 00:30:17.640 --> 00:30:20.920 Or, you know, he doesn't see it. He's like, I 00:30:20.920 --> 00:30:24.440 see you. He doesn't faint anymore. No, no, he 00:30:24.440 --> 00:30:30.279 doesn't faint. No. Oh, yeah. But, you know, he's 00:30:30.279 --> 00:30:34.319 gotten used to it. And our intimacy has not changed 00:30:34.319 --> 00:30:36.759 at all because of that. Because he loves me. 00:30:37.119 --> 00:30:39.920 And when you're out there, if you're single and 00:30:39.920 --> 00:30:42.819 you have an ostomy and you're feeling insecure 00:30:42.819 --> 00:30:45.500 about yourself, you will find somebody who's 00:30:45.500 --> 00:30:48.359 not going to find that that's gross or disgusting. 00:30:48.440 --> 00:30:51.619 They're going to love you. And they're just going 00:30:51.619 --> 00:30:53.519 to go, oh, well, that's just something that's 00:30:53.519 --> 00:30:56.210 a part of you. You know, that's, it's like as 00:30:56.210 --> 00:30:58.130 if we didn't have a leg, you know, you'd have 00:30:58.130 --> 00:31:02.950 to have a prosthesis. So you just have to, there 00:31:02.950 --> 00:31:07.069 are people who don't look at that as a problem. 00:31:07.230 --> 00:31:10.730 They just don't. Yeah, it's all about your own 00:31:10.730 --> 00:31:15.630 mind and keeping yourself strong -willed. I found 00:31:15.630 --> 00:31:19.250 that easier later on in my life as I've matured. 00:31:19.250 --> 00:31:22.740 And also, I should mention that I also did seek 00:31:22.740 --> 00:31:25.140 a lot of therapy throughout this journey as well. 00:31:25.839 --> 00:31:27.920 Very important. Very important and something 00:31:27.920 --> 00:31:32.440 that I feel is often bypassed almost, especially 00:31:32.440 --> 00:31:35.240 with IBD. I mean, I was lucky enough that my 00:31:35.240 --> 00:31:38.400 specialist in the US when I was out in LA also 00:31:38.400 --> 00:31:41.460 offered me to go see a therapist, actually a 00:31:41.460 --> 00:31:43.940 therapist specializing in digestive diseases. 00:31:45.339 --> 00:31:48.339 Think about that, a specialist, you know, a therapist, 00:31:48.539 --> 00:31:51.740 especially in IBD. That's fantastic to have people 00:31:51.740 --> 00:31:53.339 like this. Again, you know, I mean, it's one 00:31:53.339 --> 00:31:55.119 thing to be seen by a therapist and work with 00:31:55.119 --> 00:31:57.720 your therapist to work to whatever you're dealing 00:31:57.720 --> 00:32:00.599 with. But again, to have somebody really focusing 00:32:00.599 --> 00:32:03.079 on IBD and everything that's associated with 00:32:03.079 --> 00:32:05.160 it, all these insecurities, the fears, the embarrassment, 00:32:05.380 --> 00:32:09.079 it's important. And I think we don't stress this 00:32:09.079 --> 00:32:11.720 enough that, you know, even though you might 00:32:11.720 --> 00:32:14.220 be wanting to isolate yourself in the beginning, 00:32:15.440 --> 00:32:17.880 Even though you might be embarrassed, therapy 00:32:17.880 --> 00:32:21.420 can go a long ways. I mean, I can certainly speak 00:32:21.420 --> 00:32:23.819 to that. You can speak to that, I'm sure, because 00:32:23.819 --> 00:32:26.400 the way you're paying to me, you're open. You're 00:32:26.400 --> 00:32:30.640 not embarrassed at all. So don't forget about 00:32:30.640 --> 00:32:33.180 that aspect as well when it comes to the mental 00:32:33.180 --> 00:32:36.279 health. You will deal with embarrassing moments. 00:32:37.130 --> 00:32:39.710 dealing with ulcerative colitis or even Crohn's, 00:32:39.710 --> 00:32:42.990 I'm sure. I can only tell you from my experience, 00:32:43.109 --> 00:32:47.109 but there were one time that I lived in Atlanta, 00:32:47.390 --> 00:32:51.509 Georgia for a while and the commute was horrendous. 00:32:51.970 --> 00:32:54.170 There would be times I'd be in the car for up 00:32:54.170 --> 00:32:56.769 to two hours just trying to get through traffic. 00:32:57.349 --> 00:33:00.369 There was one time that I really had to go and 00:33:00.369 --> 00:33:04.630 I wasn't near a bathroom. And I got to my place 00:33:04.630 --> 00:33:06.890 of business and I parked in the parking structure 00:33:06.890 --> 00:33:10.369 and I knew I would never make it to the bathroom. 00:33:10.690 --> 00:33:12.329 I was like, I'm never going to make it. I'm not 00:33:12.329 --> 00:33:15.890 going to make it. So I had brought my lunch in 00:33:15.890 --> 00:33:19.349 a, you know, a grocery bag, you know, that you 00:33:19.349 --> 00:33:24.730 would get. And I had a bunch of napkins in my 00:33:24.730 --> 00:33:28.180 car console. just because of spills or whatever. 00:33:28.319 --> 00:33:30.819 I always love to have napkins around. Well, I 00:33:30.819 --> 00:33:34.640 ended up using those to defecate on and then 00:33:34.640 --> 00:33:37.200 ended up carrying my lunch into work because 00:33:37.200 --> 00:33:39.619 I had to dump all of that into the grocery bag. 00:33:39.859 --> 00:33:42.539 I mean, these are those moments that you're like 00:33:42.539 --> 00:33:45.420 so embarrassed about, but I'm like, did anyone 00:33:45.420 --> 00:33:48.079 notice? No, there was nobody around, you know, 00:33:48.079 --> 00:33:52.950 and I just threw it in the garbage. And I went 00:33:52.950 --> 00:33:55.589 on about my day. And it's just like you would 00:33:55.589 --> 00:33:58.069 be super embarrassed. And there's times that 00:33:58.069 --> 00:34:02.250 I've I've had feces on the back of my pants and 00:34:02.250 --> 00:34:04.470 someone's noticed and they're like, did you sit 00:34:04.470 --> 00:34:09.849 in chocolate? No, I didn't. You know, so those 00:34:09.849 --> 00:34:11.849 are those embarrassing moments. But when you 00:34:11.849 --> 00:34:14.769 actually share with people like, oh, I actually 00:34:14.769 --> 00:34:18.869 have a problem, you know, they they even if they 00:34:18.869 --> 00:34:22.809 don't understand, they usually were. Like, oh, 00:34:22.989 --> 00:34:26.889 OK, you know, like I probably shouldn't have 00:34:26.889 --> 00:34:29.050 said anything or, you know, I didn't want to 00:34:29.050 --> 00:34:31.929 make them feel bad, you know. But yeah, it's 00:34:31.929 --> 00:34:34.619 those moments that you have to. look back at 00:34:34.619 --> 00:34:37.340 the time it's embarrassing and yeah your face 00:34:37.340 --> 00:34:39.239 is going to get red and you're going to be embarrassed 00:34:39.239 --> 00:34:42.280 and you hope nobody sees you but at the end when 00:34:42.280 --> 00:34:44.519 you look back you're like man I got through that 00:34:44.519 --> 00:34:47.099 moment and I did it really with my head held 00:34:47.099 --> 00:34:50.760 high right as much as it can be when you're dealing 00:34:50.760 --> 00:34:54.699 with poop Yeah, so absolutely. I think sometimes 00:34:54.699 --> 00:34:58.579 going through embarrassing experiences will help 00:34:58.579 --> 00:35:01.000 us mature, will help us then eventually to kind 00:35:01.000 --> 00:35:04.219 of get rid of that embarrassment and accept what 00:35:04.219 --> 00:35:05.679 we're dealing with because we don't really have, 00:35:05.840 --> 00:35:11.239 like you said, a choice, right? Right. So I always 00:35:11.239 --> 00:35:13.159 like to end on a positive note. And I think your 00:35:13.159 --> 00:35:15.000 story that you just mentioned and the outcome 00:35:15.000 --> 00:35:18.179 of at least, you know, is definitely optimistic, 00:35:18.460 --> 00:35:22.780 right? And filled with hope. I have a final question 00:35:22.780 --> 00:35:27.619 for you. And that one is, if you could go back 00:35:27.619 --> 00:35:33.800 in time, back to that 25 -year -old self, what 00:35:33.800 --> 00:35:37.199 would you tell that person? And I know that you 00:35:37.199 --> 00:35:39.179 probably would, whatever you would say, you would 00:35:39.179 --> 00:35:42.159 probably say it with humor, having gotten to 00:35:42.159 --> 00:35:45.679 know you a little bit. But what would be your 00:35:45.679 --> 00:35:49.530 message to yourself at age 25? I think the first 00:35:49.530 --> 00:35:52.570 thing I would do is hug myself and tell myself 00:35:52.570 --> 00:35:54.809 everything's going to be okay and that I'm going 00:35:54.809 --> 00:35:57.949 to get through it and it's going to make me become 00:35:57.949 --> 00:36:00.909 stronger and that the journey is going to be 00:36:00.909 --> 00:36:09.409 a bit bumpy and a bit shitty, actually. Literally. 00:36:10.710 --> 00:36:16.289 But, you know. I would warn myself about some 00:36:16.289 --> 00:36:17.809 of the things that I'm going to deal with so 00:36:17.809 --> 00:36:22.590 that I don't fall into those mental lows that 00:36:22.590 --> 00:36:25.510 I did get at the beginning. And sometimes throughout 00:36:25.510 --> 00:36:28.449 the journey where I felt like suicide might be 00:36:28.449 --> 00:36:30.929 better. And I'm glad that I never went through 00:36:30.929 --> 00:36:34.670 with that because I did contact Suicide Hotline 00:36:34.670 --> 00:36:37.869 and they did get me through it. So all of the 00:36:37.869 --> 00:36:40.090 people that you talk to there are volunteers. 00:36:40.530 --> 00:36:44.860 So they... are the most wonderful volunteers 00:36:44.860 --> 00:36:48.800 I'd ever met. Just getting you through your struggle 00:36:48.800 --> 00:36:51.380 and trying to understand what you're going through 00:36:51.380 --> 00:36:54.539 and making you feel like you're a person. Because 00:36:54.539 --> 00:36:57.000 that's where I didn't feel like throughout this 00:36:57.000 --> 00:36:59.400 journey. Sometimes I was like, what is happening 00:36:59.400 --> 00:37:02.659 to me? I don't feel like a person. But at the 00:37:02.659 --> 00:37:06.739 end of this whole thing is I wouldn't change 00:37:06.739 --> 00:37:11.889 anything about anything because it's... what 00:37:11.889 --> 00:37:15.409 i knew like if i were diagnosed now i would probably 00:37:15.409 --> 00:37:17.030 treat it a lot differently because of all the 00:37:17.030 --> 00:37:19.829 knowledge that's out there but i didn't know 00:37:19.829 --> 00:37:21.869 a lot of that stuff back then i got a lot of 00:37:21.869 --> 00:37:24.889 books but they only tell you so much um they 00:37:24.889 --> 00:37:26.809 don't tell you i don't talk to you about the 00:37:26.809 --> 00:37:30.210 mental health part of all of this as well and 00:37:30.210 --> 00:37:35.369 um dealing with relationships as well and how 00:37:35.369 --> 00:37:38.510 to explain this to people so that they understand 00:37:38.510 --> 00:37:41.219 and not make you feel like you're Because they 00:37:41.219 --> 00:37:44.880 don't see it, they may think you're a hypochondriac. 00:37:44.880 --> 00:37:48.519 And that's not the case. And that's why, you 00:37:48.519 --> 00:37:50.820 know, I shared earlier that sometimes you just 00:37:50.820 --> 00:37:53.179 have to prove it to people if that's what it 00:37:53.179 --> 00:37:56.039 takes. But I don't recommend that. Don't recommend 00:37:56.039 --> 00:38:00.940 that. No, no. And yet you did prove it. I did, 00:38:01.059 --> 00:38:03.940 yes. Exactly. And the most important thing is 00:38:03.940 --> 00:38:06.219 that you actually got through it, right? You 00:38:06.219 --> 00:38:10.900 found your way. And you found yourself, you got 00:38:10.900 --> 00:38:13.619 your life back. And I think that's what matters 00:38:13.619 --> 00:38:19.519 most. And if you achieve that with the help of 00:38:19.519 --> 00:38:22.199 humor, then so be it, right? More power to you. 00:38:23.079 --> 00:38:27.329 So Janelle, don't lose that humor. For sure, 00:38:27.389 --> 00:38:30.530 because I think it's very inspiring. First of 00:38:30.530 --> 00:38:31.989 all, it helped you and I think it's helping other 00:38:31.989 --> 00:38:35.489 people as well. I want to thank you so much for 00:38:35.489 --> 00:38:38.570 taking the time to open up about your story today. 00:38:38.809 --> 00:38:42.289 Very inspiring. And I'm going to leave you with 00:38:42.289 --> 00:38:46.590 nothing but the best. I hope that you... Continue 00:38:46.590 --> 00:38:49.489 to manage whatever sort of other autoimmune diseases 00:38:49.489 --> 00:38:51.570 you're struggling with and that's going well. 00:38:51.909 --> 00:38:54.809 And wishing nothing but the best for the future. 00:38:54.969 --> 00:38:56.789 Thanks, Frank. And thanks so much for having 00:38:56.789 --> 00:38:58.849 me and hope that my journey can help someone 00:38:58.849 --> 00:39:02.989 else through theirs. That's it for today's episode 00:39:02.989 --> 00:39:05.949 of Talking S***, presented by Colitis Unfiltered. 00:39:06.389 --> 00:39:09.389 I'm Frank Tabering. And if this hit home or hit 00:39:09.389 --> 00:39:12.250 your gut, do us a favor. Subscribe to the show. 00:39:12.809 --> 00:39:15.369 And follow us at Kaleidos Unfiltered on YouTube, 00:39:15.590 --> 00:39:18.949 Substack, Instagram, Threads, TikTok, and Reddit. 00:39:19.210 --> 00:39:21.389 We'll see you soon for more inspiring stories 00:39:21.389 --> 00:39:22.630 from the bathroom floor.