WEBVTT 00:00:00.700 --> 00:00:04.120 I believe that having an ostomy for IBD patients 00:00:04.120 --> 00:00:08.060 does help more than getting an ostomy for different 00:00:08.060 --> 00:00:12.240 conditions. It gives your bowel a break from 00:00:12.240 --> 00:00:17.219 where the inflammation is. It's a lot of transitioning 00:00:17.219 --> 00:00:20.460 and practice required with getting an ostomy, 00:00:20.579 --> 00:00:25.519 but it is totally okay to do anything that you 00:00:25.519 --> 00:00:28.710 were doing before. after surgery with an ostomy. 00:00:29.089 --> 00:00:31.690 There's nothing that I can't do that I do now 00:00:31.690 --> 00:00:34.810 that I didn't do before I had an ostomy. This 00:00:34.810 --> 00:00:37.170 is Leah, who got diagnosed with Crohn's disease 00:00:37.170 --> 00:00:41.229 at age nine in Swansea, Illinois. Leah's IBD 00:00:41.229 --> 00:00:44.009 experience is one of transformation, from dealing 00:00:44.009 --> 00:00:46.609 with vicious symptoms as a child to navigating 00:00:46.609 --> 00:00:49.850 multiple surgeries and eventually seeking a career 00:00:49.850 --> 00:00:52.490 as an ostomy nurse who guides her patients to 00:00:52.490 --> 00:00:55.109 the very journey she herself has and is living. 00:00:55.640 --> 00:00:58.439 Leah proves that an existence reshaped by Crohn's 00:00:58.439 --> 00:01:03.039 can be full, meaningful, and joyful. This is 00:01:03.039 --> 00:01:05.739 Talking S***, presented by Colitis Unfiltered. 00:01:05.900 --> 00:01:09.180 My name is Frank Tabing, and Leah, welcome to 00:01:09.180 --> 00:01:12.459 the show. Hi, thank you for having me. Well, 00:01:12.480 --> 00:01:15.540 it's a pleasure. So we briefly talked about your 00:01:15.540 --> 00:01:18.700 journey, but what I always like to start these 00:01:18.700 --> 00:01:22.560 by going into the past, right? Moving on to the 00:01:22.560 --> 00:01:25.019 present and then into the future. So let's start 00:01:25.019 --> 00:01:28.879 with the past and tell us about your diagnosis. 00:01:29.239 --> 00:01:32.799 Tell us how it happened and maybe start with 00:01:32.799 --> 00:01:35.959 the first symptoms. Whatever happened that you 00:01:35.959 --> 00:01:37.920 noticed that there was something wrong and how 00:01:37.920 --> 00:01:40.219 those symptoms then launched to the diagnosis 00:01:40.219 --> 00:01:43.319 and the rest of your journey. So I was diagnosed 00:01:43.319 --> 00:01:47.120 when I was nine. I actually had a bout of food 00:01:47.120 --> 00:01:50.159 poisoning prior to my diagnosis. I feel like 00:01:50.159 --> 00:01:52.180 kind of kick -started some things. I think it 00:01:52.180 --> 00:01:56.159 sent my immune system into overdrive. And then 00:01:56.159 --> 00:01:58.459 after that, I was having symptoms of fatigue, 00:01:58.620 --> 00:02:03.879 bloody diarrhea, just overall just weight loss, 00:02:03.980 --> 00:02:08.159 not feeling well. I became very pale. I was brought 00:02:08.159 --> 00:02:12.319 to the hospital in actually St. Louis Children's. 00:02:12.479 --> 00:02:14.139 That was actually in Missouri, but we were very 00:02:14.139 --> 00:02:18.780 close to it. And I was so afraid of the doctors. 00:02:18.800 --> 00:02:21.060 So they did one test and I was like, I'm never 00:02:21.060 --> 00:02:24.300 going back. My parents were very nervous to bring 00:02:24.300 --> 00:02:25.960 me back to the hospital because I made such a 00:02:25.960 --> 00:02:29.349 fuss of it. of it. And then since we didn't follow 00:02:29.349 --> 00:02:31.990 up, my dad was in the military at the time and 00:02:31.990 --> 00:02:33.449 we were actually stationed in the Netherlands. 00:02:33.949 --> 00:02:36.389 So we left to go to the Netherlands and due to 00:02:36.389 --> 00:02:38.610 the stress of being in a new country, new food, 00:02:38.729 --> 00:02:41.949 new environment, my condition went into overdrive 00:02:41.949 --> 00:02:44.530 again and I started having my first player. We 00:02:44.530 --> 00:02:47.370 had a lot of... doctor visits in the Netherlands 00:02:47.370 --> 00:02:49.830 because I was so tired that I just kind of gave 00:02:49.830 --> 00:02:52.650 up on going back to the hospital. And that's 00:02:52.650 --> 00:02:55.189 where I started seeing Dutch doctors that put 00:02:55.189 --> 00:02:59.810 me on Remicade infusions. And then I was still 00:02:59.810 --> 00:03:04.610 having some symptoms and needed to do like bowel 00:03:04.610 --> 00:03:06.289 preps and stuff. So that's when I got my first 00:03:06.289 --> 00:03:09.490 NG tube as well. The Remicade worked for about 00:03:09.490 --> 00:03:13.419 five weeks and then My next dose was less and 00:03:13.419 --> 00:03:15.639 less. I was having still the same symptoms. So 00:03:15.639 --> 00:03:18.340 we actually went to London at the time to talk 00:03:18.340 --> 00:03:21.000 to other doctors, get a second opinion. And they 00:03:21.000 --> 00:03:23.319 were the first ones that brought up surgery as 00:03:23.319 --> 00:03:26.699 a potential intervention in the future. My parents 00:03:26.699 --> 00:03:28.740 got nervous. We ended up flying back to the States 00:03:28.740 --> 00:03:32.199 for a third opinion from military doctors. And 00:03:32.199 --> 00:03:35.000 in that process, I underwent treatment for two 00:03:35.000 --> 00:03:38.180 weeks, had IVs, had NG2, couldn't eat, I was 00:03:38.180 --> 00:03:42.330 having endoscopies, colonoscopies. And that eventually 00:03:42.330 --> 00:03:46.870 led to like a definitive Crohn's diagnosis. And 00:03:46.870 --> 00:03:50.789 my eighth grade year in middle school, I actually 00:03:50.789 --> 00:03:53.469 ended up getting my first ostomy due to some 00:03:53.469 --> 00:03:57.090 of the medication not working. And I went through 00:03:57.090 --> 00:04:00.610 high school, college, and eventually led to having 00:04:00.610 --> 00:04:04.150 my large intestine removed when I was 18 after 00:04:04.150 --> 00:04:06.789 several medications. And I've actually been great 00:04:06.789 --> 00:04:09.719 ever since. So this is great. You're feeling 00:04:09.719 --> 00:04:13.680 amazing. That's what we want, right? But it's 00:04:13.680 --> 00:04:16.600 definitely been a journey for you. So you touched 00:04:16.600 --> 00:04:18.139 on a lot of things that I would love to follow 00:04:18.139 --> 00:04:20.439 up with, but going back to the diagnosis, and 00:04:20.439 --> 00:04:23.360 I guess in your case, you had sort of almost 00:04:23.360 --> 00:04:27.019 several diagnoses, right? Going back to maybe 00:04:27.019 --> 00:04:30.800 the one that stuck in your head the most or that 00:04:30.800 --> 00:04:34.860 maybe moved you emotionally the most, how did... 00:04:35.149 --> 00:04:37.870 Did the doctor break the news to you? And also 00:04:37.870 --> 00:04:40.689 sort of what went through your mind, not really 00:04:40.689 --> 00:04:42.470 knowing much about the condition that you had, 00:04:42.610 --> 00:04:46.110 right? Yeah, I think being that young, it's really 00:04:46.110 --> 00:04:49.089 hard to wrap your mind around a diagnosis like 00:04:49.089 --> 00:04:52.329 that, especially since, you know, going to the 00:04:52.329 --> 00:04:54.829 bathroom is such a private part of our lives. 00:04:55.069 --> 00:04:57.449 I hated all the medical procedures that I had 00:04:57.449 --> 00:05:00.589 to go through, but it was kind of a dramatic 00:05:00.589 --> 00:05:04.120 and emotional experience of... this is what's 00:05:04.120 --> 00:05:06.040 presented to me this is what's happening to me 00:05:06.040 --> 00:05:10.139 I kind of have to just do what I need to do I 00:05:10.139 --> 00:05:11.959 kind of let my parents figure out a lot of it 00:05:11.959 --> 00:05:15.060 but it was really just I was hurting I would 00:05:15.060 --> 00:05:17.079 tell my parents the doctors would tell them what 00:05:17.079 --> 00:05:19.519 to do I would go in for testing and I would kind 00:05:19.519 --> 00:05:22.439 of sit with it and I absolutely did not love 00:05:22.439 --> 00:05:24.699 it when I was that age but it was something that 00:05:24.699 --> 00:05:28.639 I was like okay well It's either this or I feel 00:05:28.639 --> 00:05:31.779 bad. So it was a lot to take in, but it was something 00:05:31.779 --> 00:05:33.839 that I was like, okay, like this is, I kind of 00:05:33.839 --> 00:05:36.439 just accepted as like, this is what life is. 00:05:36.480 --> 00:05:38.800 This is what it's going to have to be. So a lot 00:05:38.800 --> 00:05:42.459 of different emotions. Looking back now, would 00:05:42.459 --> 00:05:45.699 you potentially argue that it was maybe better 00:05:45.699 --> 00:05:48.720 for you to be at such a young age because you 00:05:48.720 --> 00:05:50.399 didn't have that knowledge, right? Or you had 00:05:50.399 --> 00:05:53.759 your parents more as guides and really helping 00:05:53.759 --> 00:05:57.040 you out? Oh, absolutely. I tell people all the 00:05:57.040 --> 00:05:59.879 time that I am so fortunate that I got diagnosed 00:05:59.879 --> 00:06:03.639 at a young age, especially now I see kids that 00:06:03.639 --> 00:06:06.920 get diagnosis that bounce back really easily. 00:06:07.019 --> 00:06:11.910 Kids are way more. And they're way more moldable 00:06:11.910 --> 00:06:14.350 to be able to go with the flow at that time because 00:06:14.350 --> 00:06:17.449 the parents do handle a lot of that stuff. So, 00:06:17.550 --> 00:06:20.310 yes, I would agree that being diagnosed at such 00:06:20.310 --> 00:06:22.290 a young age and also getting an ostomy at such 00:06:22.290 --> 00:06:26.029 a young age was definitely a blessing. And this 00:06:26.029 --> 00:06:27.790 leads to my next question. Surgery at a young 00:06:27.790 --> 00:06:30.269 age, ostomy at a young age. How did you navigate 00:06:30.269 --> 00:06:35.350 those moments, those years, the teens, right? 00:06:35.410 --> 00:06:38.569 Such a crucial point. And yet there you are. 00:06:39.780 --> 00:06:41.360 looking basically a little bit different, feeling 00:06:41.360 --> 00:06:43.360 a little bit different than others. What was 00:06:43.360 --> 00:06:46.139 that period like for you, especially also during 00:06:46.139 --> 00:06:49.620 those crucial teenage years? I was a loner for 00:06:49.620 --> 00:06:52.779 most of those years. I tried my best to be social 00:06:52.779 --> 00:06:56.079 and I wanted so badly to be normal. But there 00:06:56.079 --> 00:06:58.699 was times where I just gave in to how my body 00:06:58.699 --> 00:07:01.100 was feeling and I would stay home. I missed a 00:07:01.100 --> 00:07:04.740 lot of dances and school. I missed a lot of like 00:07:04.740 --> 00:07:07.639 hanging out with my friends. it just took so 00:07:07.639 --> 00:07:09.959 much out of me that I was like, I just, I can't. 00:07:09.959 --> 00:07:12.120 And I don't want to show up and not be present. 00:07:12.220 --> 00:07:14.439 Even now, like if I'm not feeling well, I will 00:07:14.439 --> 00:07:16.980 cancel before I go out and try to bring the mood 00:07:16.980 --> 00:07:21.639 down. But yeah, during my flares, it was, I just, 00:07:21.720 --> 00:07:23.560 I wanted to be alone. I was a very suffer in 00:07:23.560 --> 00:07:25.959 silence kind of person and I had to just ride 00:07:25.959 --> 00:07:28.939 it out. There was nothing, you know, it's your 00:07:28.939 --> 00:07:30.660 body. There's nothing really that you can do. 00:07:30.720 --> 00:07:32.779 So it was just laying low until I felt better. 00:07:34.259 --> 00:07:37.689 And your friends, Again, because of this young 00:07:37.689 --> 00:07:40.910 age, were they able to understand what you were 00:07:40.910 --> 00:07:43.449 going through? Were they able to sort of cope 00:07:43.449 --> 00:07:45.730 with knowing that you, their friend, is experiencing 00:07:45.730 --> 00:07:49.870 this? Or was there also a certain distance because 00:07:49.870 --> 00:07:52.350 of what you were experiencing? I definitely think 00:07:52.350 --> 00:07:54.829 there was some people who were kind of like, 00:07:54.990 --> 00:07:57.930 okay, she's just doing whatever. But at the time 00:07:57.930 --> 00:08:01.279 when I had my... most severe flare and I left 00:08:01.279 --> 00:08:03.139 the Netherlands there was a lot of people who 00:08:03.139 --> 00:08:05.660 knew that I was sick and they they cared for 00:08:05.660 --> 00:08:08.060 me they they sent a lot of like kind of goodbye 00:08:08.060 --> 00:08:10.040 messages and saying like hey you know I hope 00:08:10.040 --> 00:08:12.379 you feel better in the states and then when I 00:08:12.379 --> 00:08:14.339 move back to the states there was a lot of people 00:08:14.339 --> 00:08:16.620 that are like what's going on with her because 00:08:16.620 --> 00:08:19.759 I wasn't super open about it at the time so I 00:08:19.759 --> 00:08:21.660 think it was 50 50 those people who were close 00:08:21.660 --> 00:08:23.699 to me I had like one or two friends that I'd 00:08:23.699 --> 00:08:26.079 be like this is what's going on and then others 00:08:26.079 --> 00:08:28.300 would kind of know something was going on but 00:08:28.300 --> 00:08:32.009 otherwise They would continue with their lives 00:08:32.009 --> 00:08:37.830 as you would. So it was hard to accept that adjustment 00:08:37.830 --> 00:08:41.129 and know that not everyone's going to be able 00:08:41.129 --> 00:08:44.850 to stay with the pace that I'm at. So it was 00:08:44.850 --> 00:08:47.029 an adjustment in every period. So you mentioned 00:08:47.029 --> 00:08:50.850 not being very open about it at that time. Obviously, 00:08:50.870 --> 00:08:55.580 as humans, we get older, we get wiser. What changed 00:08:55.580 --> 00:08:59.159 in you that you started opening up about it more? 00:08:59.299 --> 00:09:01.820 Was it a specific period in your teens? Was it 00:09:01.820 --> 00:09:03.779 a little bit later? Was it an event? Was it just 00:09:03.779 --> 00:09:08.679 getting older, pulling in more experience in 00:09:08.679 --> 00:09:11.080 life? What was it that helped you transition 00:09:11.080 --> 00:09:13.740 from being kind of closed off to being so much 00:09:13.740 --> 00:09:16.679 more open about it today? It was definitely when 00:09:16.679 --> 00:09:19.980 I got my first ostomy when I was 13. When after 00:09:19.980 --> 00:09:23.200 I got my first ostomy, I felt so much better. 00:09:23.259 --> 00:09:26.720 I shot up in growth. My nutrition got better. 00:09:26.820 --> 00:09:30.779 I got color back to my face. And since an ostomy, 00:09:30.919 --> 00:09:34.279 it can be very private, but since it was so open 00:09:34.279 --> 00:09:37.019 and it was something that made me feel so much 00:09:37.019 --> 00:09:40.759 better. I was like, okay, well, this is on my 00:09:40.759 --> 00:09:42.899 stomach. It's going to be seen at some point. 00:09:42.960 --> 00:09:44.919 Like I feel so much better. Like I can do so 00:09:44.919 --> 00:09:46.799 many things. I joined my middle school and high 00:09:46.799 --> 00:09:49.059 school dance team. And just from there, I was 00:09:49.059 --> 00:09:51.840 kind of like, well, I feel better. I'm glad I 00:09:51.840 --> 00:09:54.600 have this. So if anyone wants to know about it, 00:09:54.700 --> 00:09:56.340 like that'd be cool because maybe someone else 00:09:56.340 --> 00:09:58.340 is going through the same thing that I'm going 00:09:58.340 --> 00:10:01.179 through and surgery is very daunting. So I was 00:10:01.179 --> 00:10:02.899 just, I started being very open about it when 00:10:02.899 --> 00:10:04.940 I started feeling better after my first ostomy 00:10:04.940 --> 00:10:07.539 surgery. Great, yeah. And that happens to you 00:10:07.539 --> 00:10:09.059 at such a young age, so it's actually pretty 00:10:09.059 --> 00:10:13.639 inspiring that, you know, at age 13, you not 00:10:13.639 --> 00:10:15.460 only have to go through the whole process, the 00:10:15.460 --> 00:10:17.700 surgery, the recovery, living with it, but then 00:10:17.700 --> 00:10:21.159 it sort of helps you to, I guess, actually maybe 00:10:21.159 --> 00:10:25.159 mature even faster than most people or other 00:10:25.159 --> 00:10:27.399 people, right, around the same age. So that's 00:10:27.399 --> 00:10:30.399 great. At least that's a good positive thing 00:10:30.399 --> 00:10:34.409 that came out of that. You had the first surgery 00:10:34.409 --> 00:10:37.210 pretty early. One thing that always comes up 00:10:37.210 --> 00:10:39.629 when I talk to people that are maybe newly diagnosed 00:10:39.629 --> 00:10:43.149 or that have been sort of on medications that 00:10:43.149 --> 00:10:45.629 are not necessarily biologics, they always have 00:10:45.629 --> 00:10:46.970 this worry about, oh, what if the medication 00:10:46.970 --> 00:10:48.570 doesn't work? Yes, but there is a lot of options. 00:10:48.950 --> 00:10:51.129 So you mentioned you were on Remicade earlier, 00:10:51.230 --> 00:10:54.350 but it really sort of failed after weeks, you 00:10:54.350 --> 00:10:57.639 said. Were you on other treatments? Did the doctors 00:10:57.639 --> 00:10:59.639 not want to put you on other treatments? Did 00:10:59.639 --> 00:11:00.980 you feel like they were not proactive enough? 00:11:01.240 --> 00:11:03.519 Or did they just tell you, listen, oh, Remicade, 00:11:03.519 --> 00:11:06.179 it failed after five weeks. So there's no bother 00:11:06.179 --> 00:11:09.519 even trying anything else. Like how, what happened 00:11:09.519 --> 00:11:11.139 with your treatments or other treatment options? 00:11:11.620 --> 00:11:13.500 I think it's a little different for me at the 00:11:13.500 --> 00:11:14.899 time because I was living in the Netherlands 00:11:14.899 --> 00:11:18.100 and I think the language barrier. And the fear 00:11:18.100 --> 00:11:20.159 of this new diagnosis was hard on my parents. 00:11:20.559 --> 00:11:22.360 So that's why we got so many different opinions. 00:11:23.259 --> 00:11:25.419 Remicade at the time was the first line drug 00:11:25.419 --> 00:11:29.980 for IBD, to my knowledge. And we did, I mean, 00:11:30.000 --> 00:11:31.860 we did try it a couple times after that. But 00:11:31.860 --> 00:11:35.139 even after our re -infusion, I never got better. 00:11:35.220 --> 00:11:37.539 So when we came back to the States, well, actually, 00:11:37.559 --> 00:11:39.379 when they first mentioned surgery back in London. 00:11:40.120 --> 00:11:42.379 My parents freaked out. Every parent would freak 00:11:42.379 --> 00:11:44.539 out if their child had to get surgery. But we 00:11:44.539 --> 00:11:47.320 went back to the States and they put me on an 00:11:47.320 --> 00:11:51.120 NPO diet, nothing to eat, and let me be on bowel 00:11:51.120 --> 00:11:53.419 rest. And then they're like, okay, well, there's 00:11:53.419 --> 00:11:55.460 certain things that we can do because surgery 00:11:55.460 --> 00:12:00.419 is, again, sometimes a last resort. So they ended 00:12:00.419 --> 00:12:03.179 up putting me on Humira injections. I was on 00:12:03.179 --> 00:12:06.720 methotrexate injections. I was on different pills 00:12:06.720 --> 00:12:11.009 prior to the Netherlands as well. I wasn't on 00:12:11.009 --> 00:12:15.070 them for long. And then even after my first surgery, 00:12:15.169 --> 00:12:17.669 I was on several injections after that. So I 00:12:17.669 --> 00:12:22.070 did try several different medications. But again, 00:12:22.210 --> 00:12:26.870 the bliss of being ignorant as a child, I kind 00:12:26.870 --> 00:12:28.710 of was like, okay, I'll do this. Okay, I'll do 00:12:28.710 --> 00:12:30.350 this. Whatever my parents were like, okay, well, 00:12:30.409 --> 00:12:32.210 we need to try this. I was trying whichever, 00:12:32.470 --> 00:12:36.649 but it wasn't until... later on that i've been 00:12:36.649 --> 00:12:40.549 on the same drug but yes i did trial many medications 00:12:40.549 --> 00:12:43.809 but i guess the fear wasn't there yet of like 00:12:43.809 --> 00:12:45.809 oh this doesn't work because i was running through 00:12:45.809 --> 00:12:48.090 so many things that i was kind of like okay i've 00:12:48.090 --> 00:12:51.070 accepted that this is such a big transition that 00:12:51.070 --> 00:12:53.190 i'm just kind of have to go through trial and 00:12:53.190 --> 00:12:56.470 error so that was a period where i'm assuming 00:12:56.470 --> 00:13:00.809 you you were flaring and your symptoms were pretty 00:13:00.809 --> 00:13:04.659 bad or got to the worst possible stage that you 00:13:04.659 --> 00:13:07.980 were in. Now, you said you were more of a loner, 00:13:07.980 --> 00:13:10.340 an introvert, and I think that may have helped 00:13:10.340 --> 00:13:13.460 you deal better with sort of the isolation, right, 00:13:13.519 --> 00:13:16.379 surrounding the symptoms of this disease. I always 00:13:16.379 --> 00:13:19.340 say this helped me as well. I was actually comfortable 00:13:19.340 --> 00:13:24.039 being alone. But nonetheless, again, you were 00:13:24.039 --> 00:13:27.080 younger. So how did you, in what ways did you 00:13:27.080 --> 00:13:30.980 deal with this isolation? Or did it not bother 00:13:30.980 --> 00:13:36.919 you at all? I think with this condition, I mean, 00:13:36.940 --> 00:13:39.539 I wasn't always I wasn't a quiet child. I wasn't 00:13:39.539 --> 00:13:42.679 always reserved. But I did enjoy my alone time 00:13:42.679 --> 00:13:45.639 when I was sick because I didn't have to explain 00:13:45.639 --> 00:13:49.419 it to anybody. I didn't have to do anything requiring 00:13:49.419 --> 00:13:52.679 exertion. I got really into art. I painted a 00:13:52.679 --> 00:13:55.539 lot. I did a lot of drawings. I really turned 00:13:55.539 --> 00:13:57.840 to artwork because that is such a solo thing 00:13:57.840 --> 00:14:02.710 that you can do. There was singing and dancing 00:14:02.710 --> 00:14:05.889 videos that I would do in my room alone and have 00:14:05.889 --> 00:14:08.149 it post them on social media embarrassingly. 00:14:08.570 --> 00:14:11.990 But I enjoyed those times away because I could 00:14:11.990 --> 00:14:15.629 I could put how much effort I wanted into it, 00:14:15.669 --> 00:14:18.450 but still have some kind of interaction. I could 00:14:18.450 --> 00:14:21.169 show people my art. I could show people the dancing 00:14:21.169 --> 00:14:24.029 and singing videos. But when I wanted my alone 00:14:24.029 --> 00:14:26.169 time, you know, I could post it. I could show 00:14:26.169 --> 00:14:28.129 people and then I could be like, OK. I'm not 00:14:28.129 --> 00:14:31.629 doing anything else. But I think it definitely, 00:14:31.889 --> 00:14:36.789 having a chronic illness has stunted me socially 00:14:36.789 --> 00:14:39.509 and emotionally back then. And it was hard to 00:14:39.509 --> 00:14:42.450 keep up with people my age. So I did turn to 00:14:42.450 --> 00:14:46.080 artwork and singing and dancing on my own. But 00:14:46.080 --> 00:14:48.240 eventually, once I started feeling better, I 00:14:48.240 --> 00:14:50.080 was able to catch up and kind of do more physical 00:14:50.080 --> 00:14:52.919 things like joining my dance team, but taking 00:14:52.919 --> 00:14:55.419 it at my own pace. Obviously, people, adults 00:14:55.419 --> 00:14:58.139 knew that I had a condition at that time. So 00:14:58.139 --> 00:15:01.659 I was kind of just do whatever I needed to do 00:15:01.659 --> 00:15:04.659 to feel better. So you basically were spending 00:15:04.659 --> 00:15:07.899 that little energy that you had on yourself and 00:15:07.899 --> 00:15:11.679 yourself only, right? Which is what I would say. 00:15:12.250 --> 00:15:15.210 the selfishness that we need when we are flaring 00:15:15.210 --> 00:15:20.490 or we're in a bad condition. So what's interesting 00:15:20.490 --> 00:15:24.570 about your story is that you passed through many 00:15:24.570 --> 00:15:27.909 physician's offices, specialist appointments. 00:15:28.389 --> 00:15:31.809 And I always say that for somebody with active 00:15:31.809 --> 00:15:34.389 disease, or even when you're in remission, that 00:15:34.389 --> 00:15:37.590 sort of a connection or relationship with a gastroenterologist, 00:15:37.629 --> 00:15:40.289 especially, is extremely important to have somebody 00:15:40.289 --> 00:15:43.279 who's proactive. Is this something that you actually 00:15:43.279 --> 00:15:45.379 ever experienced, seeing all these different 00:15:45.379 --> 00:15:47.899 doctors? Or did you at one point have a doctor 00:15:47.899 --> 00:15:51.240 that you could stick with, right, and build that 00:15:51.240 --> 00:15:55.490 kind of a relationship with? Or not really? I, 00:15:55.490 --> 00:15:58.710 after the Netherlands, when I was brought back 00:15:58.710 --> 00:16:01.529 to the States, we did go to Walter Reed Medical 00:16:01.529 --> 00:16:05.070 Center that is near me now. And the pediatric 00:16:05.070 --> 00:16:07.289 gastroenterologist that took me on at the time, 00:16:07.309 --> 00:16:10.970 he was a fellow. So in his last year before he 00:16:10.970 --> 00:16:14.769 was in attending, he really took a strong hold 00:16:14.769 --> 00:16:19.720 of my case. And we, I mean, I. How often that 00:16:19.720 --> 00:16:22.340 I saw him and how difficult my case was when 00:16:22.340 --> 00:16:27.039 I was presented to him. We grew such a connection. 00:16:27.460 --> 00:16:31.860 I was very resistant against him because I was 00:16:31.860 --> 00:16:35.039 a child. But even now, I still have a strong 00:16:35.039 --> 00:16:38.460 connection with him. He was a pediatric gastroenterologist, 00:16:38.460 --> 00:16:41.220 so it was difficult when I did have to transition 00:16:41.220 --> 00:16:44.299 to adulthood and no longer have him as a doctor. 00:16:46.200 --> 00:16:48.120 I'm not going to lie, it has been kind of difficult 00:16:48.120 --> 00:16:50.919 as an adult to establish a connection with a 00:16:50.919 --> 00:16:54.259 gastroenterologist at this age. I think that 00:16:54.259 --> 00:16:56.460 I have found one that has been communicative, 00:16:56.500 --> 00:16:59.240 but I definitely don't see them as often as I 00:16:59.240 --> 00:17:03.379 did my pediatric gastroenterologist. And I think 00:17:03.379 --> 00:17:05.599 that's just how I'm learning. That's how things 00:17:05.599 --> 00:17:08.220 work. But I do think it is important to at least 00:17:08.220 --> 00:17:11.680 have yearly checkups with your GI. And if you 00:17:11.680 --> 00:17:14.750 can establish that rapport. I think it will take 00:17:14.750 --> 00:17:16.950 more from the patient on that part, especially 00:17:16.950 --> 00:17:19.750 as an adult. But it is good to have someone that 00:17:19.750 --> 00:17:22.349 knows your case, especially if it is something 00:17:22.349 --> 00:17:25.329 that you've dealt with for a long time and have 00:17:25.329 --> 00:17:28.309 gone through several medications. So great. I 00:17:28.309 --> 00:17:30.910 think that was a pretty good summary about what 00:17:30.910 --> 00:17:34.930 you went through. Let's transition to today. 00:17:35.589 --> 00:17:38.150 Earlier, you mentioned you're feeling great, 00:17:38.349 --> 00:17:41.049 but I would love for you to delve a little bit 00:17:41.049 --> 00:17:44.539 deeper on this. Tell me today. How are you feeling? 00:17:44.740 --> 00:17:48.619 I'm feeling good. You know, there's still that 00:17:48.619 --> 00:17:52.140 deep -seated fear of, you know, one day I might 00:17:52.140 --> 00:17:54.880 not feel good. I am currently on one medication 00:17:54.880 --> 00:17:56.779 that has been helping me for a couple of years. 00:17:57.140 --> 00:17:59.500 And back to your original questions earlier, 00:17:59.599 --> 00:18:03.079 there is a fear that it will stop working. And 00:18:03.079 --> 00:18:05.940 I still hopefully have so much life to live that 00:18:05.940 --> 00:18:08.140 there are different complications that can come 00:18:08.140 --> 00:18:11.710 up. But right now, how I'm feeling day to day 00:18:11.710 --> 00:18:14.430 is amazing. I couldn't have asked for a better 00:18:14.430 --> 00:18:19.049 turnout, but I'm hoping to continue that. You 00:18:19.049 --> 00:18:20.430 touched on something very briefly there, and 00:18:20.430 --> 00:18:21.930 I would like to go a little bit deeper there 00:18:21.930 --> 00:18:24.349 as well, because there's certain misconceptions 00:18:24.349 --> 00:18:26.609 around ostomies as well that are like, hey, once 00:18:26.609 --> 00:18:29.029 you have surgery, you're cured. You don't have 00:18:29.029 --> 00:18:31.529 an intestine anymore. There's nothing to worry 00:18:31.529 --> 00:18:35.910 about. But that's not always the case. So you 00:18:35.910 --> 00:18:37.430 mentioned your medication. Can you quickly... 00:18:37.869 --> 00:18:39.890 Take us through why you are on that medication. 00:18:40.130 --> 00:18:42.289 What is that medication? And then at the same 00:18:42.289 --> 00:18:45.329 time, also talk about what your current challenges, 00:18:45.490 --> 00:18:50.589 if any, you have living with an ostomy. So after 00:18:50.589 --> 00:18:54.990 I had a total colectomy when I was 18, and that's 00:18:54.990 --> 00:18:57.950 mainly because my disease was in that portion 00:18:57.950 --> 00:19:01.970 of my intestine at the time. So we thought if 00:19:01.970 --> 00:19:05.869 we got rid of the colon at the time that my disease 00:19:05.869 --> 00:19:09.250 would. kind of mellow out. Unfortunately, that 00:19:09.250 --> 00:19:11.130 did not happen. Since I do have Crohn's disease, 00:19:11.269 --> 00:19:12.890 it can happen anywhere from the mouth to the 00:19:12.890 --> 00:19:16.970 anus. So I did develop disease in different parts 00:19:16.970 --> 00:19:20.670 of my digestive tract that was left. So I did 00:19:20.670 --> 00:19:22.490 have to go back on medication after my total 00:19:22.490 --> 00:19:25.009 colectomy. I'm currently on Humira injections. 00:19:25.289 --> 00:19:29.509 I think it's adalimumab is the actual term. I'm 00:19:29.509 --> 00:19:32.269 on injections every other week. They have been 00:19:32.269 --> 00:19:36.710 working for the diseased parts of my bowel that's 00:19:36.710 --> 00:19:41.289 left. And I've been on it since 2018, I believe. 00:19:41.890 --> 00:19:44.230 I've heard that people have been on it for years. 00:19:44.390 --> 00:19:46.890 I've also heard that it has not been a drug of 00:19:46.890 --> 00:19:50.329 choice for other IBD patients. And then personally 00:19:50.329 --> 00:19:52.470 for me, a different story, having an ostomy. 00:19:52.690 --> 00:19:56.190 I do believe that having an ostomy has helped 00:19:56.190 --> 00:20:00.009 my condition immensely, but I do have IBD friends 00:20:00.009 --> 00:20:02.210 that don't have ostomies and they still have. 00:20:02.730 --> 00:20:04.670 an incredible life. They still feel great as 00:20:04.670 --> 00:20:07.730 well. I was just that lucky that I got an ostomy. 00:20:08.210 --> 00:20:12.269 But the challenges I think nowadays for having 00:20:12.269 --> 00:20:16.230 an ostomy is my disease process is more focused 00:20:16.230 --> 00:20:20.140 on having an ostomy because they can be you know, 00:20:20.180 --> 00:20:22.640 a little more difficult to handle on top of already 00:20:22.640 --> 00:20:25.779 having a chronic illness. So I think my day -to 00:20:25.779 --> 00:20:27.779 -day actually focuses more on my ostomy care 00:20:27.779 --> 00:20:31.380 rather than my IBD because my IBD is kept at 00:20:31.380 --> 00:20:33.380 bay luckily right now by my humor injections. 00:20:34.180 --> 00:20:37.539 So if somebody is potentially facing surgery, 00:20:37.759 --> 00:20:40.559 potentially facing ostomy, and they're scared, 00:20:40.839 --> 00:20:44.559 they're worried, what would you tell that person? 00:20:45.099 --> 00:20:49.400 I would tell them that it's going to be okay. 00:20:50.640 --> 00:20:53.940 I believe that having an ostomy for IBD patients 00:20:53.940 --> 00:20:57.880 does help more than getting an ostomy for different 00:20:57.880 --> 00:21:02.059 conditions. It gives your bowel a break from 00:21:02.059 --> 00:21:06.759 where the inflammation is. I don't think that 00:21:06.759 --> 00:21:09.619 it's a sole intervention. I do think in my case, 00:21:09.619 --> 00:21:12.799 I did have to go back on medication, but it is 00:21:12.799 --> 00:21:17.109 a day -to -day thing. It's a lot of There's transitioning 00:21:17.109 --> 00:21:20.349 and practice required with getting an ostomy, 00:21:20.450 --> 00:21:25.410 but it is totally okay to do anything that you 00:21:25.410 --> 00:21:28.589 were doing before after surgery with an ostomy. 00:21:29.109 --> 00:21:31.549 There's nothing that I can't do that I do now 00:21:31.549 --> 00:21:35.349 that I didn't do before I had an ostomy. So it 00:21:35.349 --> 00:21:37.849 doesn't limit you at all. It is an adjustment, 00:21:38.029 --> 00:21:42.450 but it does not limit you. That's great. So you 00:21:42.450 --> 00:21:45.819 just mentioned what... sort of impact this has 00:21:45.819 --> 00:21:49.160 on your life. Now I would like to know what sort 00:21:49.160 --> 00:21:52.839 of impact this has had on you. In other words, 00:21:52.839 --> 00:21:55.579 what you went through with the Crohn's, with 00:21:55.579 --> 00:21:59.779 the surgeries, the ostomy. How has this changed 00:21:59.779 --> 00:22:04.539 you as a person over the years? I definitely 00:22:04.539 --> 00:22:09.299 think this condition has made me humble. I've 00:22:09.299 --> 00:22:11.259 definitely been humbled to the fact that life 00:22:11.259 --> 00:22:14.099 can change very easily and I can be in pain one 00:22:14.099 --> 00:22:17.640 day and not pain in the other. I think I've become 00:22:17.640 --> 00:22:20.839 very empathetic with those who are going through 00:22:20.839 --> 00:22:23.940 the same thing, especially having to go through 00:22:23.940 --> 00:22:25.960 multiple medications and then ended up needing 00:22:25.960 --> 00:22:31.119 a surgery. I'm still greedy and needy how normal 00:22:31.119 --> 00:22:33.859 people would be in some light, but I do take 00:22:33.859 --> 00:22:36.119 those moments and see a different side of things 00:22:36.119 --> 00:22:39.079 because I know that Life is not always black 00:22:39.079 --> 00:22:41.019 and white. There's going to be some areas where 00:22:41.019 --> 00:22:42.779 you're not going to be able to give your all 00:22:42.779 --> 00:22:46.720 every day. And that may not pertain to just IBD 00:22:46.720 --> 00:22:49.500 patients. That's generally how everyone is day 00:22:49.500 --> 00:22:51.579 to day, that there's something that someone else 00:22:51.579 --> 00:22:54.559 is going through that you have no idea. They're 00:22:54.559 --> 00:22:57.819 having silent battles of their own. So I definitely 00:22:57.819 --> 00:23:00.599 think that gave me perspective having this condition 00:23:00.599 --> 00:23:05.059 that no one's normal. Everybody has something 00:23:05.059 --> 00:23:08.759 that. is going to knock them down sometimes. 00:23:09.099 --> 00:23:12.740 And I think that we need to accept people for 00:23:12.740 --> 00:23:15.299 who they are and what they can give with a grain 00:23:15.299 --> 00:23:17.740 of salt and know that, you know, no one has control 00:23:17.740 --> 00:23:23.000 over what happens to them, you know? So I think 00:23:23.000 --> 00:23:25.559 it's just giving me a different perspective overall. 00:23:26.359 --> 00:23:30.680 I always refer to, or in my case, my IBD as a 00:23:30.680 --> 00:23:34.319 blessing and a curse. Based on what you just 00:23:34.319 --> 00:23:38.099 said, thinking back, How do you relate to that? 00:23:38.539 --> 00:23:41.240 Well, I could not agree with you more for the 00:23:41.240 --> 00:23:46.259 same reason. For obvious physical conditions, 00:23:46.440 --> 00:23:49.900 it's a curse. But for the emotional and social 00:23:49.900 --> 00:23:55.000 aspect of it, it is a blessing. I think being 00:23:55.000 --> 00:23:58.940 humbled is not necessarily a negative thing. 00:23:59.099 --> 00:24:02.490 I think that it is. helpful to, especially in 00:24:02.490 --> 00:24:05.869 my line of work right now, to be able to relate 00:24:05.869 --> 00:24:10.970 and not know any struggles in life. I think knowing 00:24:10.970 --> 00:24:13.730 the struggles and being able to go through some 00:24:13.730 --> 00:24:17.930 of the hardships has molded me into the person 00:24:17.930 --> 00:24:21.769 that I'm proud of today. I don't think that if 00:24:21.769 --> 00:24:23.690 I didn't go through any hardships or struggles 00:24:23.690 --> 00:24:25.970 with this condition, I could be a completely 00:24:25.970 --> 00:24:29.349 different person. And I like the person who I 00:24:29.349 --> 00:24:32.049 am today. So I'm thankful for the experiences 00:24:32.049 --> 00:24:36.750 that I have, regardless of what I went through 00:24:36.750 --> 00:24:39.650 to get there, if that makes sense. Oh, absolutely. 00:24:39.829 --> 00:24:42.829 It really, really does. And you touched on it. 00:24:42.890 --> 00:24:44.529 You touched on what you're doing today because 00:24:44.529 --> 00:24:47.769 it's very heavily involved with sort of the ostomy 00:24:47.769 --> 00:24:51.089 world. But before we get to that. In your answer 00:24:51.089 --> 00:24:53.349 now, you mentioned the social aspect really quickly. 00:24:53.470 --> 00:24:55.890 So I do want to go back into the past one more 00:24:55.890 --> 00:24:57.490 time, just because I'm interested to see how 00:24:57.490 --> 00:25:00.289 you navigated this. With what you went through, 00:25:00.390 --> 00:25:03.970 again, through this crucial period of teenage 00:25:03.970 --> 00:25:08.309 years, when most people, you know, they go dancing 00:25:08.309 --> 00:25:10.930 to clubs. I mean, you did it in your room. Great. 00:25:11.269 --> 00:25:14.049 You know, they date, you know, they have sort 00:25:14.049 --> 00:25:17.390 of, they go through that natural stage of adolescence 00:25:17.390 --> 00:25:20.490 and moving into adulthood. You had a surgery 00:25:20.490 --> 00:25:30.130 at 18. So how has this affected this aspect of 00:25:30.130 --> 00:25:34.170 growing up, like relationships, body image, right? 00:25:34.289 --> 00:25:37.430 In what ways has this impacted you? And how did 00:25:37.430 --> 00:25:42.009 you live those moments at those different ages? 00:25:42.730 --> 00:25:47.450 Yeah. Well, from a very young age, when my condition 00:25:47.450 --> 00:25:51.349 was at its worst, I was pooping my pants. Like 00:25:51.349 --> 00:25:54.349 outright, I was going, I was, I could not hold 00:25:54.349 --> 00:25:56.750 it. My condition was so bad that it was just, 00:25:56.789 --> 00:25:58.369 I was running to the bathroom all the time. So 00:25:58.369 --> 00:26:01.750 body image wise, there is definitely things that 00:26:01.750 --> 00:26:04.559 I had to think about before going anywhere. Like, 00:26:04.579 --> 00:26:06.759 OK, well, maybe I shouldn't eat that. Or is this 00:26:06.759 --> 00:26:09.440 going to affect me? Where's the nearest bathroom? 00:26:09.680 --> 00:26:12.160 I think that was such a major part of my life 00:26:12.160 --> 00:26:16.660 that I had some social anxiety of like, if I 00:26:16.660 --> 00:26:19.279 were to poop my pants, where can I run to first? 00:26:20.259 --> 00:26:22.960 Like, what clothing should I bring? And then 00:26:22.960 --> 00:26:26.240 later on, when I got my first ostomate was. oh, 00:26:26.240 --> 00:26:27.940 like, are people going to be able to notice it 00:26:27.940 --> 00:26:30.579 through my clothes? Am I going to be able to 00:26:30.579 --> 00:26:35.700 sit down crisscross? Or, like, general day -to 00:26:35.700 --> 00:26:39.420 -day stuff, like, that you don't second guess, 00:26:39.480 --> 00:26:42.339 I guess. I was thinking about, like, how are 00:26:42.339 --> 00:26:45.180 people going to view me? And even today, I'm 00:26:45.180 --> 00:26:48.519 still, how are people going to view me? But I 00:26:48.519 --> 00:26:52.470 think it came with time and exception that okay, 00:26:52.529 --> 00:26:55.349 maybe people don't notice my ostomy. People don't 00:26:55.349 --> 00:26:57.849 notice my stomach gurgling. People don't notice 00:26:57.849 --> 00:27:00.470 how often I'm going to the bathroom. And if they 00:27:00.470 --> 00:27:03.569 did, it was kind of like, well, I don't know. 00:27:03.589 --> 00:27:06.210 I've dealt with it for this long. People go to 00:27:06.210 --> 00:27:08.930 the bathroom. I kind of just accepted like everybody's 00:27:08.930 --> 00:27:10.829 poop stinks. Everybody goes to the bathroom. 00:27:10.930 --> 00:27:13.789 I just go a little bit more. And then I guess 00:27:13.789 --> 00:27:16.630 romantic relationship wise, I was very private 00:27:16.630 --> 00:27:19.109 initially. It wasn't until later in life that 00:27:19.109 --> 00:27:22.759 I did share. more of that stuff because I feel 00:27:22.759 --> 00:27:25.079 like in relationships, that is one of the harder 00:27:25.079 --> 00:27:29.500 things to talk about is intimacy and toileting. 00:27:30.380 --> 00:27:33.680 But over time, again, with the other things, 00:27:33.799 --> 00:27:38.819 I kind of just adjusted to it is what it is. 00:27:38.880 --> 00:27:41.460 Everyone pooped and pees. Everyone goes to the 00:27:41.460 --> 00:27:44.599 bathroom. People wear different clothing. It 00:27:44.599 --> 00:27:47.339 doesn't mean that you're you know, less than, 00:27:47.460 --> 00:27:50.440 more than, anything like that. So it took a lot 00:27:50.440 --> 00:27:54.720 of exception on my part to be comfortable with, 00:27:54.859 --> 00:27:58.819 one, my condition and how my body image was, 00:27:58.920 --> 00:28:01.079 but it did take time and it did take a lot of 00:28:01.079 --> 00:28:04.680 reassurance as well, even today. Reassurance 00:28:04.680 --> 00:28:07.579 is great for me, but having those people that 00:28:07.579 --> 00:28:10.880 do reassure you in your life and acceptance that, 00:28:10.920 --> 00:28:14.640 like, It is what it is. It definitely helped 00:28:14.640 --> 00:28:17.599 me get through most relationships in my life. 00:28:19.359 --> 00:28:22.220 So just listening to this again, yes, absolutely. 00:28:22.599 --> 00:28:26.660 This is not necessarily dinner talk, but, and 00:28:26.660 --> 00:28:28.579 you said poop, which was, you know, very, very 00:28:28.579 --> 00:28:30.240 nice, but it's okay. This is a podcast so we 00:28:30.240 --> 00:28:32.660 can use explicit language. It's true. Everyone 00:28:32.660 --> 00:28:35.380 shits. Everyone shits. And that's just the lesson 00:28:35.380 --> 00:28:37.599 here, you know? I mean, again, no need to talk 00:28:37.599 --> 00:28:39.619 about it all the time, but it's completely fine 00:28:39.619 --> 00:28:42.819 because everybody can relate to it. So it's okay. 00:28:43.799 --> 00:28:45.460 So I don't want to, with my next question, I 00:28:45.460 --> 00:28:47.079 don't want to spoil it. So I'm going to let you 00:28:47.079 --> 00:28:50.079 answer it because not only do you live with an 00:28:50.079 --> 00:28:53.299 ostomy, but you really carried this through into 00:28:53.299 --> 00:28:55.799 your professional life. Tell us what you do today, 00:28:56.000 --> 00:28:58.779 what that entails. And most importantly, I would 00:28:58.779 --> 00:29:01.619 love to know how did you get into that field? 00:29:01.759 --> 00:29:05.559 What made you want to do this? Well, I am a certified 00:29:05.559 --> 00:29:10.829 ostomy nurse and I have been for... In this role 00:29:10.829 --> 00:29:13.910 about a year now, working as an ostomy nurse. 00:29:14.089 --> 00:29:16.890 Prior to this, actually, I was a GI nurse working 00:29:16.890 --> 00:29:20.390 in endoscopy. So both sides of the condition. 00:29:21.029 --> 00:29:24.009 I think it's not hard to conclude that my condition 00:29:24.009 --> 00:29:27.549 and my ostomy led me to want to work with patients 00:29:27.549 --> 00:29:30.450 that have these conditions. I think it's very 00:29:30.450 --> 00:29:34.269 fulfilling and rewarding to come in contact with 00:29:34.269 --> 00:29:36.809 other people that are like me. Again, that's 00:29:36.809 --> 00:29:40.819 the reassurance part. enjoy seeing patients that 00:29:40.819 --> 00:29:42.759 have kind of gone through what I've gone through 00:29:42.759 --> 00:29:47.579 but I ever since I actually had my first GI nurse 00:29:47.579 --> 00:29:51.099 in the hospital I've been like that's what I 00:29:51.099 --> 00:29:53.720 want to do like I want to be her and she was 00:29:53.720 --> 00:29:55.859 this little Filipino lady who worked in a big 00:29:55.859 --> 00:30:00.259 military hospital and she was so blunt um and 00:30:00.259 --> 00:30:04.160 at times I did not like her for that but it definitely 00:30:04.160 --> 00:30:08.960 shaped me into what I wanted to do. So I got 00:30:08.960 --> 00:30:12.619 my bachelor's in nursing. I made a plan. I was 00:30:12.619 --> 00:30:15.400 like, I'm going to do this by this time at this 00:30:15.400 --> 00:30:18.279 date. I knew I wanted to be in the GI field, 00:30:18.359 --> 00:30:21.220 but since I had an ostomy, I was leaning more 00:30:21.220 --> 00:30:24.099 towards ostomy patients who don't necessarily 00:30:24.099 --> 00:30:28.720 always get an ostomy for IBD reasons. I worked 00:30:28.720 --> 00:30:30.799 as a nurse for one year. I actually went into 00:30:30.799 --> 00:30:33.339 endoscopy and worked there for two years. Absolutely 00:30:33.339 --> 00:30:36.640 loved it. Loved the procedural part of it. And 00:30:36.640 --> 00:30:39.720 then went back to school to get my certifications 00:30:39.720 --> 00:30:43.839 for wound, ostomy, and continence nursing. And 00:30:43.839 --> 00:30:46.079 then I ended up getting a job at my hospital 00:30:46.079 --> 00:30:50.839 working with inpatients from neonates to geriatric 00:30:50.839 --> 00:30:55.240 population who have ostomies for... A plethora 00:30:55.240 --> 00:30:58.819 of reasons, but it's been very rewarding and 00:30:58.819 --> 00:31:01.960 very fulfilling. And so right now in your current 00:31:01.960 --> 00:31:06.940 position, take us through a day in the life of 00:31:06.940 --> 00:31:10.220 Leah. What is it that you do? What are your responsibilities? 00:31:11.279 --> 00:31:16.880 So as an ostominer, I do have like a list of 00:31:16.880 --> 00:31:20.920 patients. Believe it or not, there are at least... 00:31:21.390 --> 00:31:24.509 two patients getting an ostomy a day. So we will 00:31:24.509 --> 00:31:27.569 have ostomy patients that are straight out of 00:31:27.569 --> 00:31:32.089 the OR, day one post -op, who we have to go and 00:31:32.089 --> 00:31:36.170 say, hey, this is your life now. This is how 00:31:36.170 --> 00:31:39.009 you live with an ostomy. And so we see patients 00:31:39.009 --> 00:31:42.210 from post -op day one up until they're discharged, 00:31:42.269 --> 00:31:44.789 and we teach them the basics of ostomy care, 00:31:44.970 --> 00:31:48.910 how to live day to day, how to change their bag, 00:31:49.109 --> 00:31:53.150 how to empty their bag, how to adjust their diet 00:31:53.150 --> 00:31:56.009 and hydration around having an ostomy. And we 00:31:56.009 --> 00:31:58.509 see them up until discharge. And then unfortunately, 00:31:58.750 --> 00:32:01.690 I don't get to see the post -op, but there are 00:32:01.690 --> 00:32:06.970 patients every day that I see or I see in the 00:32:06.970 --> 00:32:08.349 future that come back and they're like, yeah, 00:32:08.390 --> 00:32:11.130 I'm dealing with it just fine. It ended up being 00:32:11.130 --> 00:32:14.049 no big deal. There's definitely patients that 00:32:14.349 --> 00:32:16.829 don't handle it that way. And it is very hard. 00:32:16.990 --> 00:32:21.130 I did have one particular patient that was did 00:32:21.130 --> 00:32:23.710 not have an ostomy for IBD reasons, but nevertheless 00:32:23.710 --> 00:32:27.950 was a huge change in their life. And I think 00:32:27.950 --> 00:32:31.650 the connotation around ostomies is so negative, 00:32:31.710 --> 00:32:35.349 usually, that it is an even bigger adjustment 00:32:35.349 --> 00:32:38.289 when you have that already that mindset to having 00:32:38.289 --> 00:32:41.930 an ostomy. But he made such an incredible turnaround 00:32:41.930 --> 00:32:46.369 on being able to help people accept this as part 00:32:46.369 --> 00:32:49.470 of their life and their day to day and say, hey, 00:32:49.549 --> 00:32:53.069 like, it's you can take a break. Like, this is 00:32:53.069 --> 00:32:55.309 a lot of information. This is a lot that you're 00:32:55.309 --> 00:32:58.470 going through. You have other things to worry 00:32:58.470 --> 00:33:01.210 about. But we're for this hour, we're going to 00:33:01.210 --> 00:33:04.349 focus on this. And then continue your day to 00:33:04.349 --> 00:33:07.950 day. So it's really just a lot of emotional support 00:33:07.950 --> 00:33:11.210 as well as physical and like educational support. 00:33:11.410 --> 00:33:13.650 That's really great. And in connection to that 00:33:13.650 --> 00:33:16.450 earlier, I asked Leah, the patient, to sort of 00:33:16.450 --> 00:33:19.390 offer some words of advice to people that might 00:33:19.390 --> 00:33:21.690 face an ostomy, right? Or that, you know, just 00:33:21.690 --> 00:33:26.049 had surgery. I'll ask you this again, but slightly 00:33:26.049 --> 00:33:29.059 different now as Leah, the professional. When 00:33:29.059 --> 00:33:32.099 you see people with ostomies, there's leaks sometimes, 00:33:32.339 --> 00:33:36.460 there's skin irritations, rashes, frustrations 00:33:36.460 --> 00:33:41.140 that pop up left and right. And sometimes I think 00:33:41.140 --> 00:33:43.440 it really affects people from a mental point 00:33:43.440 --> 00:33:45.799 of view as well. What words of encouragement 00:33:45.799 --> 00:33:49.680 do you have for people sort of navigating daily 00:33:49.680 --> 00:33:53.859 struggles with ostomies? That's it's a it's a 00:33:53.859 --> 00:33:56.619 big feat for sure, because everyone's different. 00:33:56.720 --> 00:33:59.579 Everyone handles things differently. I kind of 00:33:59.579 --> 00:34:04.539 do it the personal way of things. I don't openly 00:34:04.539 --> 00:34:07.180 share about my ostomy unless it's appropriate. 00:34:07.480 --> 00:34:09.840 Like at least I if I know that they're mentally 00:34:09.840 --> 00:34:12.099 there to accept that information, I will tell 00:34:12.099 --> 00:34:16.670 them. But I tell them without telling them. I 00:34:16.670 --> 00:34:19.710 know that this is a lot. I know that you're dealing 00:34:19.710 --> 00:34:21.789 with a lot of things and a lot of things are 00:34:21.789 --> 00:34:24.869 happening, complications that you weren't expecting 00:34:24.869 --> 00:34:28.329 coming with an ostomy. But there are ways to 00:34:28.329 --> 00:34:30.670 mitigate these things. There are ways to treat 00:34:30.670 --> 00:34:35.050 these things. And if the patients are in the 00:34:35.050 --> 00:34:36.590 hospital long enough, we can teach them a lot 00:34:36.590 --> 00:34:39.730 of things. But basic ostomy care those first 00:34:39.730 --> 00:34:42.869 few days after surgery. is just knowing how to 00:34:42.869 --> 00:34:45.250 protect their skin, knowing how to prevent leaks 00:34:45.250 --> 00:34:48.110 and knowing how to keep a pouch on. It is very 00:34:48.110 --> 00:34:51.210 fast, but I would let patients know that there's 00:34:51.210 --> 00:34:54.750 so many resources out there, IBD population or 00:34:54.750 --> 00:34:58.750 just ostomy population. So many people, including 00:34:58.750 --> 00:35:01.710 myself, like do different things that are out 00:35:01.710 --> 00:35:05.650 of the norm, but that work for them. So professionally, 00:35:05.909 --> 00:35:10.670 I say it's a lot. I know, take a breath. I acknowledge 00:35:10.670 --> 00:35:13.610 that it is a big thing and is a big adjustment 00:35:13.610 --> 00:35:18.010 in your life to accept. But this is your life 00:35:18.010 --> 00:35:20.969 now. And we do have to focus on what is going 00:35:20.969 --> 00:35:23.090 on right now. So it's kind of like a tough love 00:35:23.090 --> 00:35:25.710 thing. Like, I get that this is a lot for you. 00:35:26.550 --> 00:35:29.769 But this is what we got to do. And the sooner 00:35:29.769 --> 00:35:32.449 that they accept it, the better. It does take 00:35:32.449 --> 00:35:35.550 longer than others. But it is just kind of a, 00:35:35.570 --> 00:35:38.380 you're going to be okay. that this is how life 00:35:38.380 --> 00:35:40.460 is going to be right now. And sometimes people 00:35:40.460 --> 00:35:42.820 don't have ostomies permanently. Some get them 00:35:42.820 --> 00:35:45.840 reversed. So we don't try to bring that up because 00:35:45.840 --> 00:35:49.480 that might be false hope. But if we can, we kind 00:35:49.480 --> 00:35:51.679 of shed a little bit of light on the future. 00:35:52.820 --> 00:35:57.099 So you're spending your days in and out basically 00:35:57.099 --> 00:36:01.579 offering guidance to patients. However, there's 00:36:01.579 --> 00:36:04.579 a whole population out there that is not... necessarily 00:36:04.579 --> 00:36:07.440 physically affected by ostomies or by IBD however 00:36:07.440 --> 00:36:11.619 they are supporting someone with IBD or an ostomy 00:36:11.619 --> 00:36:13.619 they're in love with somebody who has an ostomy 00:36:13.619 --> 00:36:18.699 or IBD what kind of advice do you have for friends 00:36:18.699 --> 00:36:22.920 for family members for partners supporting someone 00:36:22.920 --> 00:36:27.300 with IBD or someone with an ostomy there was 00:36:27.300 --> 00:36:29.730 a very good article that my mom sent me very 00:36:29.730 --> 00:36:33.329 while back when I was like teenage years, that 00:36:33.329 --> 00:36:36.309 covers how to love someone with Crohn's disease. 00:36:36.489 --> 00:36:39.570 So specifically my condition, but IBD in general. 00:36:40.210 --> 00:36:44.150 And a lot of the article touched on a lot of 00:36:44.150 --> 00:36:46.429 people will suffer in silence. There's a lot 00:36:46.429 --> 00:36:48.389 of things that they will want to do for themselves. 00:36:48.869 --> 00:36:51.210 And although they may look like they're struggling 00:36:51.210 --> 00:36:54.329 doing it, sometimes, as we've talked before, 00:36:54.449 --> 00:36:58.440 it is a comfort. for that alone time to figure 00:36:58.440 --> 00:37:01.840 things out for yourself so i think if you love 00:37:01.840 --> 00:37:03.820 someone in your life or caring for someone in 00:37:03.820 --> 00:37:07.780 your life with an ostomy or ibd it's going to 00:37:07.780 --> 00:37:11.079 be hard but you have to give them space to accept 00:37:11.079 --> 00:37:14.159 and to work through the condition because it 00:37:14.159 --> 00:37:16.840 is something that is happening to them so you 00:37:16.840 --> 00:37:19.219 have to give them grace with what they're going 00:37:19.219 --> 00:37:22.340 through whether it's a new diagnosis or a new 00:37:22.340 --> 00:37:27.719 ostomy it is such a big adjustment period that 00:37:27.719 --> 00:37:31.039 I know a lot of people I even have a best friend 00:37:31.039 --> 00:37:32.699 that's very like what do you need what you know 00:37:32.699 --> 00:37:36.400 like what can I do and I'm like let me just sit 00:37:36.400 --> 00:37:39.239 with this for a second uh I had a situation the 00:37:39.239 --> 00:37:41.019 other day my bag leaked at my friend's house 00:37:41.019 --> 00:37:43.059 right before we were going out and it has not 00:37:43.059 --> 00:37:46.059 leaked in a very long time it's just like what 00:37:46.059 --> 00:37:47.860 can I do do you need to change it like do you 00:37:47.860 --> 00:37:50.599 have supplies blah blah and I was like let's 00:37:50.599 --> 00:37:52.900 slow down here. Like, let me accept the fact 00:37:52.900 --> 00:37:56.739 that my bag leaked after years. Like, I'm still 00:37:56.739 --> 00:38:00.260 trying to grasp, like, how did it leak? Or sometimes 00:38:00.260 --> 00:38:02.940 if my stomach hurts from my condition, sometimes 00:38:02.940 --> 00:38:05.400 I'm like, why is it hurting? And someone's like, 00:38:05.500 --> 00:38:06.980 well, what does it feel like? What are you doing? 00:38:07.059 --> 00:38:08.260 Like, what did you eat? Blah, blah, blah. And 00:38:08.260 --> 00:38:11.460 I'm like, give me some time. Give me some space 00:38:11.460 --> 00:38:14.780 because it is so overwhelming when some people 00:38:14.780 --> 00:38:17.500 try to overhelp that you just need some time. 00:38:18.349 --> 00:38:21.650 My one piece of advice would be give people a 00:38:21.650 --> 00:38:24.389 grace period and accept that there's some things 00:38:24.389 --> 00:38:27.289 that they need to just do themselves to feel 00:38:27.289 --> 00:38:31.949 physically and mentally okay. Yeah, that's right. 00:38:32.030 --> 00:38:34.289 Give them some space. Give them some time. Maybe 00:38:34.289 --> 00:38:38.289 feel free to educate yourself, but make sure 00:38:38.289 --> 00:38:42.630 you use that. newfound knowledge carefully as 00:38:42.630 --> 00:38:44.949 well, right? You don't want to crush somebody 00:38:44.949 --> 00:38:48.909 with like facts and figures and yeah, so that's 00:38:48.909 --> 00:38:51.349 very good. So we spoke about you speaking to 00:38:51.349 --> 00:38:54.889 a lot of other people, but if you could go back 00:38:54.889 --> 00:38:58.969 to the nine -year -old self, potentially even 00:38:58.969 --> 00:39:01.389 on the day that you were diagnosed or, you know, 00:39:01.389 --> 00:39:03.929 you received the news that there's something 00:39:03.929 --> 00:39:07.130 fundamentally wrong, what would you tell yourself? 00:39:08.110 --> 00:39:10.849 Hmm. I don't know if my nine year old self would 00:39:10.849 --> 00:39:14.170 listen to me. It could be the 13 one year old, 00:39:14.230 --> 00:39:21.110 you know? I think it would be nice if I sat with 00:39:21.110 --> 00:39:26.670 myself in like a quiet place. And I think it's 00:39:26.670 --> 00:39:30.230 hard to hear that everything will be okay. But 00:39:30.230 --> 00:39:34.090 knowing that, I mean, because my future self 00:39:34.090 --> 00:39:38.110 knows now that I'm okay. But understand that, 00:39:38.110 --> 00:39:40.690 like, again, this is a lot that you're going 00:39:40.690 --> 00:39:43.349 through. I know that you're in pain and I know 00:39:43.349 --> 00:39:44.989 you're questioning, like, why is this happening 00:39:44.989 --> 00:39:48.889 to you? And it's unfortunate that it did. But 00:39:48.889 --> 00:39:53.269 I would tell her to be strong and to take it 00:39:53.269 --> 00:39:56.050 with a grain of salt, to endure what I can and 00:39:56.050 --> 00:39:59.369 make sure that I set limits with people who are 00:39:59.369 --> 00:40:01.389 either trying to tell me things or trying to 00:40:01.389 --> 00:40:03.670 make me do things. I have a choice when it comes 00:40:03.670 --> 00:40:07.650 to. medications, procedures, stuff like that. 00:40:08.070 --> 00:40:11.150 You don't have to tell people about your condition. 00:40:11.329 --> 00:40:15.250 You don't have to feel like you have to be 100 00:40:15.250 --> 00:40:19.409 % all the time. If you're not feeling well, communicate 00:40:19.409 --> 00:40:22.570 at least that, that you're not feeling well. 00:40:24.309 --> 00:40:26.929 It's just not a good day for you. And don't let 00:40:26.929 --> 00:40:30.329 people push you. And don't let people tell you 00:40:30.329 --> 00:40:33.650 what is and what isn't. You know your body. You 00:40:33.650 --> 00:40:38.389 know yourself. It's you who have to live with 00:40:38.389 --> 00:40:40.750 yourself at the end of the day. So accept what 00:40:40.750 --> 00:40:43.210 you can. If you can't, just communicate that. 00:40:43.309 --> 00:40:45.110 I would definitely tell her to communicate better 00:40:45.110 --> 00:40:49.570 than how I was when I was younger. And just take 00:40:49.570 --> 00:40:51.570 it day by day. Each day is going to be different. 00:40:52.610 --> 00:40:55.570 But they're knowing now. I didn't know at the 00:40:55.570 --> 00:40:57.130 time. There's a lot of other people going through 00:40:57.130 --> 00:41:00.670 the same thing. So, you know, lean on your peers. 00:41:00.809 --> 00:41:04.969 Lean on your family. And just take time for yourself 00:41:04.969 --> 00:41:08.849 and just accept kind of what is and that maybe 00:41:08.849 --> 00:41:12.510 things will look up someday. Sometimes the sort 00:41:12.510 --> 00:41:16.469 of simple reassurance is all the reassurance 00:41:16.469 --> 00:41:20.610 that humans need. So I think that's great. So 00:41:20.610 --> 00:41:24.389 my final question for you is about the future. 00:41:26.219 --> 00:41:28.219 And even though I always say this, it's very 00:41:28.219 --> 00:41:31.559 difficult to answer. At least all we want to 00:41:31.559 --> 00:41:34.960 have is hope, right? So do you believe that in 00:41:34.960 --> 00:41:40.300 our lifetime we will find a cure for IBD? I think 00:41:40.300 --> 00:41:45.059 there won't be a cure for one condition. I think 00:41:45.059 --> 00:41:47.719 that it's going to take probably more than our 00:41:47.719 --> 00:41:49.900 lifetime to figure out something for everyone's 00:41:49.900 --> 00:41:53.420 condition. But I do think we are. making positive 00:41:53.420 --> 00:41:56.780 strides, huge strides in the IBD world. I do 00:41:56.780 --> 00:41:59.099 think that people who have the milder conditions 00:41:59.099 --> 00:42:05.440 that are manageable, I think if we catch it early 00:42:05.440 --> 00:42:09.000 on, I do think that people can, there will be 00:42:09.000 --> 00:42:11.860 a cure for those people. I do think that IBD 00:42:11.860 --> 00:42:16.519 is a spectrum, it ranges. So yes and no. I think 00:42:16.519 --> 00:42:18.559 for some people, we definitely can have a cure 00:42:18.559 --> 00:42:21.849 and mitigate their early stages. More complicated 00:42:21.849 --> 00:42:25.389 situations, I think, will be a little more lifetime. 00:42:26.429 --> 00:42:28.289 That's still enough hope for me. So I'll take 00:42:28.289 --> 00:42:29.849 it, you know, and then we'll see how it goes. 00:42:29.949 --> 00:42:32.190 And, you know, I agree with you. I think you're 00:42:32.190 --> 00:42:34.309 absolutely right. And then, of course, you know, 00:42:34.369 --> 00:42:37.789 on the other part, let's hope that science will 00:42:37.789 --> 00:42:41.289 advance quickly enough to... to help the more 00:42:41.289 --> 00:42:45.309 serious conditions as well. Well, Leah, thank 00:42:45.309 --> 00:42:47.789 you so much. This was really great. I love the 00:42:47.789 --> 00:42:50.150 fact that you're so open about it. I really enjoy 00:42:50.150 --> 00:42:54.170 your story of going from a nine -year -old who's 00:42:54.170 --> 00:42:56.690 basically being told that she has this certain 00:42:56.690 --> 00:43:00.090 condition to somebody who actually works in that 00:43:00.090 --> 00:43:02.130 same field later on. So that's really, really 00:43:02.130 --> 00:43:05.250 inspiring. So keep doing that. Keep helping people 00:43:05.250 --> 00:43:07.730 and keep on singing and dancing, even if it's 00:43:07.730 --> 00:43:09.510 just in your room, you know. with yourself. I 00:43:09.510 --> 00:43:11.889 think that is the right spirit to have when we're 00:43:11.889 --> 00:43:14.449 faced with such adversity. So thank you so much 00:43:14.449 --> 00:43:15.869 again for being on the show today. It was really 00:43:15.869 --> 00:43:17.289 a pleasure to talk to you and I wish you nothing 00:43:17.289 --> 00:43:20.090 but the best, you know, moving forward. Thank 00:43:20.090 --> 00:43:21.849 you so much for having me. I've enjoyed this. 00:43:23.550 --> 00:43:25.929 That's it for today's episode of Talking S*** 00:43:25.929 --> 00:43:29.369 presented by Colitis Unfiltered. I'm Frank Tabering 00:43:29.369 --> 00:43:32.789 and if this hit home or hit your gut, do us a 00:43:32.789 --> 00:43:35.570 favor, subscribe to the show and follow us at 00:43:35.570 --> 00:43:38.980 Colitis Unfiltered on YouTube, Substack, instagram 00:43:38.980 --> 00:43:42.159 threads tick tock and reddit we'll see you soon 00:43:42.159 --> 00:43:44.340 for more inspiring stories from the bathroom 00:43:44.340 --> 00:43:44.639 floor