WEBVTT 00:00:01.439 --> 00:00:05.080 I remember the very real moment of the before 00:00:05.080 --> 00:00:08.300 diagnosis, the after diagnosis, and the acceptance 00:00:08.300 --> 00:00:12.019 of diagnosis. So once I had gained weight again 00:00:12.019 --> 00:00:14.660 and I was able to, you know, participate in my 00:00:14.660 --> 00:00:16.739 hobbies that I loved, hang out with my friends. 00:00:17.420 --> 00:00:20.160 Then I really started to love myostomy. I was 00:00:20.160 --> 00:00:23.399 like, hey, I had been so sick for so long and 00:00:23.399 --> 00:00:27.140 I had tolerated and accepted this kind of, you 00:00:27.140 --> 00:00:31.000 know, symptomatic on and off pain. And now I'm 00:00:31.000 --> 00:00:33.840 actually able to enjoy life more with myostomy. 00:00:34.399 --> 00:00:37.820 This is Alicia, who got diagnosed with ulcerative 00:00:37.820 --> 00:00:41.399 colitis at age 14 in Philadelphia, Pennsylvania. 00:00:42.039 --> 00:00:45.119 She's the acting president of Girls With Guts, 00:00:45.240 --> 00:00:49.219 an organization... that helps solve IBD problems 00:00:49.219 --> 00:00:52.979 for women. Today, on the Colitis Unfiltered podcast, 00:00:53.740 --> 00:00:56.380 Alicia is going to talk to me about her own IBD 00:00:56.380 --> 00:00:59.780 journey and why awareness and advocacy is so 00:00:59.780 --> 00:01:02.960 important in the space of inflammatory bowel 00:01:02.960 --> 00:01:06.060 disease. My name is Frank Tabering, and Alicia, 00:01:06.219 --> 00:01:08.760 welcome to the show. Thank you so much for having 00:01:08.760 --> 00:01:12.599 me. I'm really excited to chat. So you don't 00:01:12.599 --> 00:01:16.060 just live with IBD, you basically live and breathe. 00:01:16.540 --> 00:01:20.019 IBD because you have your own, you know, colitis 00:01:20.019 --> 00:01:22.959 journey, of course, but you're super active in 00:01:22.959 --> 00:01:26.079 terms of advocacy, awareness with an amazing 00:01:26.079 --> 00:01:28.700 organization called Girls for Guts. We'll get 00:01:28.700 --> 00:01:30.939 to that in a moment. But first, I want to go 00:01:30.939 --> 00:01:34.340 all the way back to the Alicia at 14 years old. 00:01:34.900 --> 00:01:37.700 And let's start at the beginning, your first 00:01:37.700 --> 00:01:40.959 symptoms. Tell me a little bit about how ulcerative 00:01:40.959 --> 00:01:43.459 colitis started to manifest for you and then 00:01:43.459 --> 00:01:46.260 also how it ultimately led to your diagnosis. 00:01:46.900 --> 00:01:49.900 Absolutely. So I was symptomatic from birth. 00:01:50.060 --> 00:01:53.299 I had some bleeding in infancy. And so my parents 00:01:53.299 --> 00:01:54.959 were bringing me back and forth to the doctors 00:01:54.959 --> 00:01:57.599 to try and figure out what was that about. So 00:01:57.599 --> 00:01:59.560 they were trying different formulas. Eventually, 00:01:59.560 --> 00:02:02.629 that kind of stopped. You know, I was calling 00:02:02.629 --> 00:02:05.469 home from grade school with stomach aches every 00:02:05.469 --> 00:02:08.310 single day. And, you know, the doctors were ruling 00:02:08.310 --> 00:02:11.449 it out off as anxiety. She just doesn't want 00:02:11.449 --> 00:02:13.919 to be at school. Meanwhile, I loved school. School 00:02:13.919 --> 00:02:16.520 was like my safe haven. So I loved being there. 00:02:16.639 --> 00:02:18.919 But yeah, I had stomach aches really early on, 00:02:18.939 --> 00:02:20.879 a lot of issues with bleeding and constipation. 00:02:21.039 --> 00:02:23.180 And it was kind of pushed aside for a really 00:02:23.180 --> 00:02:25.900 long time. And ultimately, I wasn't diagnosed 00:02:25.900 --> 00:02:28.860 until I was 14. And it was very abrupt and very 00:02:28.860 --> 00:02:32.680 scary because the symptoms came on tenfold. I 00:02:32.680 --> 00:02:35.919 mean, I, you know, at some point I was crawling 00:02:35.919 --> 00:02:38.699 to the bathroom because I was so severely dehydrated 00:02:38.699 --> 00:02:42.620 from all the diarrhea. And my primary doctor 00:02:42.620 --> 00:02:45.479 said, said that I had a case of giardia. So I 00:02:45.479 --> 00:02:48.000 was being treated for that with antibiotics. 00:02:48.340 --> 00:02:51.979 And ultimately, surprise, it was actually IBD. 00:02:52.099 --> 00:02:55.039 So yeah, my journey, you know, it kind of ebbed 00:02:55.039 --> 00:02:57.159 and flowed. I had symptoms as a kid and then 00:02:57.159 --> 00:03:00.400 was diagnosed as a teen. And yeah, when the symptoms 00:03:00.400 --> 00:03:03.139 hit, I mean, within a couple of weeks, I was 00:03:03.139 --> 00:03:06.159 hospitalized. And then, you know, they ran the 00:03:06.159 --> 00:03:09.139 gambit of tests. It was all very scary. And then, 00:03:09.139 --> 00:03:11.430 yeah, when the doctor came in and said, hey, 00:03:11.550 --> 00:03:13.610 you have something called ulcerative colitis. 00:03:14.289 --> 00:03:16.969 You know, at 14, I was like, is that cancer? 00:03:17.150 --> 00:03:20.729 Am I going to die? I had no idea. It was traumatizing, 00:03:20.770 --> 00:03:23.430 honestly. You mentioned crawling to the bathroom. 00:03:23.610 --> 00:03:26.169 That sort of just hits me like a brick because 00:03:26.169 --> 00:03:29.009 that, you know, it's a flashback 13 years ago. 00:03:29.069 --> 00:03:32.150 I was in the exact same position and so many 00:03:32.150 --> 00:03:34.349 days literally just crawling because that was 00:03:34.349 --> 00:03:37.189 the only way to get from the couch to the bathroom, 00:03:37.310 --> 00:03:39.689 right? To the toilet. So yeah, I can relate to 00:03:39.689 --> 00:03:44.740 that one. So 14 is a very young age to be hit 00:03:44.740 --> 00:03:49.520 with IBD. Tell me how you mentally but also physically 00:03:49.520 --> 00:03:53.979 navigated the disease post -diagnosis once you 00:03:53.979 --> 00:03:57.080 kind of knew what you had and what inflammatory 00:03:57.080 --> 00:03:59.400 bowel disease was like. When I was diagnosed, 00:03:59.580 --> 00:04:03.080 I went from diagnosis to very severe, you know, 00:04:03.080 --> 00:04:05.139 I was having surgery within six months. I lost 00:04:05.139 --> 00:04:07.280 my colon ultimately within six months due to 00:04:07.280 --> 00:04:10.240 toxic megacolon, because by the time I was diagnosed 00:04:10.240 --> 00:04:12.680 and being untreated for so long, it was so severe. 00:04:12.919 --> 00:04:15.500 I mean, that was a blessing and a curse at the 00:04:15.500 --> 00:04:17.920 same time. One, I was being given this lifelong 00:04:17.920 --> 00:04:20.720 altering illness. But on the other hand, there 00:04:20.720 --> 00:04:23.100 was, you know, an explanation for the symptoms 00:04:23.100 --> 00:04:24.980 that I had been dealing with my entire life. 00:04:25.100 --> 00:04:28.110 And there was treatment. And so, you know, It 00:04:28.110 --> 00:04:31.009 was really a lot to manage physically. I was, 00:04:31.009 --> 00:04:34.149 you know, home on TPN for about six months. I 00:04:34.149 --> 00:04:36.610 had to start high school late. I did homeschooling 00:04:36.610 --> 00:04:39.029 for the first six months of my diagnosis. And 00:04:39.029 --> 00:04:41.449 yeah, I think for me physically, it was just 00:04:41.449 --> 00:04:44.589 trying to get from the severity that it had been 00:04:44.589 --> 00:04:47.870 to adjusting to that new normal and adjusting 00:04:47.870 --> 00:04:51.050 to an ostomy. Back when I was 14, I did not want 00:04:51.050 --> 00:04:53.389 to have an ostomy. I was like, what are the next 00:04:53.389 --> 00:04:56.370 steps to get this thing off of my body? It really 00:04:56.370 --> 00:04:59.550 impacted my, you know, my body image. I didn't 00:04:59.550 --> 00:05:01.550 even want to go outside. I was afraid of it leaking 00:05:01.550 --> 00:05:05.079 all the time and the smell and changing it. want 00:05:05.079 --> 00:05:07.839 to look at the stoma. And I think so physically, 00:05:07.920 --> 00:05:10.600 I think, you know, it was just day to day living 00:05:10.600 --> 00:05:13.220 day to day and trying to navigate that mentally. 00:05:13.639 --> 00:05:16.600 My dad was really, you know, really ahead of 00:05:16.600 --> 00:05:19.480 the curve in terms of finding support for me. 00:05:19.579 --> 00:05:23.040 He actually found a kid's forum online called 00:05:23.040 --> 00:05:26.879 Dragon Pack IBD, which had a kid's forum. And 00:05:26.879 --> 00:05:28.779 I connected with someone named Katie, who I'm 00:05:28.779 --> 00:05:31.579 still in touch with today, 20 years later, who 00:05:31.579 --> 00:05:35.069 also had IBD and an ostomy. And I. think having 00:05:35.069 --> 00:05:38.769 someone to talk to at that age really empowered 00:05:38.769 --> 00:05:41.529 me and allowed me to keep going because I at 00:05:41.529 --> 00:05:44.889 least had someone else to commiserate with. So 00:05:44.889 --> 00:05:47.529 I think she was a really good anchor during my 00:05:47.529 --> 00:05:50.110 initial diagnosis. We always talk about support 00:05:50.110 --> 00:05:52.110 being so important, but then when you're 14, 00:05:52.509 --> 00:05:54.990 you know, your entire life, your world is completely 00:05:54.990 --> 00:05:57.029 different from that of sort of an adult having 00:05:57.029 --> 00:06:00.149 to deal with IBD. And finding somebody to connect 00:06:00.149 --> 00:06:03.329 with, I mean, that was, I'm sure, honestly, that 00:06:03.329 --> 00:06:06.189 was transformative for you and helped you as 00:06:06.189 --> 00:06:08.610 opposed to potentially not having that source 00:06:08.610 --> 00:06:13.209 of support and help. Now, you talked about a 00:06:13.209 --> 00:06:17.350 new normal. You talked about not wanting a surgery 00:06:17.350 --> 00:06:20.949 and who does. How did you eventually come to 00:06:20.949 --> 00:06:24.870 accept this new normal and accept, you know, 00:06:24.870 --> 00:06:28.649 living without a colon to... connect with your 00:06:28.649 --> 00:06:31.029 body again to i guess fall in love with yourself 00:06:31.029 --> 00:06:34.050 again how did you manage to reach that point 00:06:34.600 --> 00:06:37.839 I remember the very real moment of the before 00:06:37.839 --> 00:06:41.019 diagnosis, the after diagnosis, and the acceptance 00:06:41.019 --> 00:06:44.759 of diagnosis. So once I had gained weight again 00:06:44.759 --> 00:06:47.420 and I was able to, you know, participate in my 00:06:47.420 --> 00:06:49.519 hobbies that I loved, hang out with my friends, 00:06:49.740 --> 00:06:52.899 then I really started to love my ostomy. I was 00:06:52.899 --> 00:06:56.160 like, hey, I had been so sick for so long and 00:06:56.160 --> 00:06:59.839 I had tolerated and accepted this kind of, you 00:06:59.839 --> 00:07:03.740 know, symptomatic on and off pain. And now I'm 00:07:03.740 --> 00:07:06.610 actually able to enjoy life more with my ostomy. 00:07:06.790 --> 00:07:09.310 And I had some great, very supportive friends 00:07:09.310 --> 00:07:11.550 when I did start high school. I think that really 00:07:11.550 --> 00:07:13.629 helped as well. They were very curious about 00:07:13.629 --> 00:07:16.790 it. So each of those tiny nuggets of support 00:07:16.790 --> 00:07:20.629 really built in some confidence for me and ultimately 00:07:20.629 --> 00:07:23.910 helped bridge that gap from the initial trauma 00:07:23.910 --> 00:07:27.689 of it all to that full acceptance of the ostomy. 00:07:28.029 --> 00:07:32.110 And so fast forward to today, let's talk about 00:07:32.110 --> 00:07:34.680 how you're feeling. Because for many many IBD 00:07:34.680 --> 00:07:37.779 warriors surgery is not necessarily the end it's 00:07:37.779 --> 00:07:40.600 not the cure right how is it looking for you 00:07:40.600 --> 00:07:44.079 today what's your life like do you have any challenges 00:07:44.079 --> 00:07:46.620 you know anything that you still wrestle with 00:07:46.620 --> 00:07:51.180 yeah I mean so my journey has definitely ebbed 00:07:51.180 --> 00:07:54.139 and flowed so I was originally diagnosed with 00:07:54.139 --> 00:07:57.600 UC, and that first ostomy teleported me into 00:07:57.600 --> 00:08:01.019 the J -Pouch series where I had so many chronic 00:08:01.019 --> 00:08:03.720 issues with rectovaginal fistula. So I was having 00:08:03.720 --> 00:08:06.100 back -to -back surgery, you know, during school 00:08:06.100 --> 00:08:09.139 breaks to try and alleviate that, and ultimately 00:08:09.139 --> 00:08:12.379 was re -diagnosed with Crohn's disease right 00:08:12.379 --> 00:08:14.519 after I graduated college, which allowed me to 00:08:14.519 --> 00:08:17.519 get onto treatment. So from my diagnosis to, 00:08:17.720 --> 00:08:20.899 you know, 23 years old, I had been untreated, 00:08:21.040 --> 00:08:23.259 allowing my disease. disease to sort of continue 00:08:23.259 --> 00:08:26.639 to ravage my body. And after I was re -diagnosed 00:08:26.639 --> 00:08:29.959 and that process of grieving again, a new diagnosis 00:08:29.959 --> 00:08:33.460 and ultimately meaning there was no cure, I, 00:08:33.580 --> 00:08:36.600 you know, started a biologic and felt after about 00:08:36.600 --> 00:08:40.879 six months so much better. And yeah, so, I mean, 00:08:40.919 --> 00:08:46.289 ultimately, I would say that my diagnosis. changed 00:08:46.289 --> 00:08:48.970 the trajectory of my life, but in a good way. 00:08:49.070 --> 00:08:52.350 It allowed me to become more empathetic, more 00:08:52.350 --> 00:08:55.409 compassionate, more in touch with my surroundings 00:08:55.409 --> 00:08:58.990 and the people around me, more aware of everything 00:08:58.990 --> 00:09:02.049 around me as well, and the ability to enjoy the 00:09:02.049 --> 00:09:05.639 small things. I didn't realize how much I missed 00:09:05.639 --> 00:09:08.539 being outside and having the freedom to walk 00:09:08.539 --> 00:09:10.639 around without thinking about a bathroom until 00:09:10.639 --> 00:09:13.980 I ultimately had my permanent ostomy surgery. 00:09:14.360 --> 00:09:18.139 So I think full circle from the ostomy that I 00:09:18.139 --> 00:09:21.200 hated to this permanent ostomy that I love, it 00:09:21.200 --> 00:09:24.399 has been quite a journey. And before we actually 00:09:24.399 --> 00:09:29.620 move on to what you're doing today, so we have 00:09:29.620 --> 00:09:33.360 the people with IBD who are rushed to the hospital. 00:09:33.720 --> 00:09:35.340 And I don't know, you know, they wake up the 00:09:35.340 --> 00:09:37.779 next day, their colon is gone. Then we have the 00:09:37.779 --> 00:09:39.460 category of people who know that they'll have 00:09:39.460 --> 00:09:41.039 to have surgery. They actually have time to prepare 00:09:41.039 --> 00:09:44.700 physically, but also mentally. You said that 00:09:44.700 --> 00:09:47.059 it was a very short period of six months, basically, 00:09:47.059 --> 00:09:48.899 from your diagnosis to when you had your first 00:09:48.899 --> 00:09:51.519 surgery. Tell me a little bit about, especially 00:09:51.519 --> 00:09:55.519 as such a young adult, how did you manage that 00:09:55.519 --> 00:09:59.909 mentally, you know, that path to surgery? And 00:09:59.909 --> 00:10:02.450 especially before it happened, did you have time 00:10:02.450 --> 00:10:05.950 to prepare for it, to sort of imagine what your 00:10:05.950 --> 00:10:09.149 life would be like? Or was it rather abrupt and 00:10:09.149 --> 00:10:13.169 you didn't really have any space to get ready 00:10:13.169 --> 00:10:17.409 mentally for what was coming post -surgery? When 00:10:17.409 --> 00:10:19.750 I was initially diagnosed, I was hospitalized 00:10:19.750 --> 00:10:22.250 for two months just to try and get some weight 00:10:22.250 --> 00:10:24.809 on. I had dropped about 60 pounds, which for 00:10:24.809 --> 00:10:27.970 me, I... That impacted my ability to walk, my 00:10:27.970 --> 00:10:30.669 muscles, everything. So I was ultimately hospitalized, 00:10:30.809 --> 00:10:35.570 put on bowel rest, TPN, just to try and help 00:10:35.570 --> 00:10:39.029 heal some of the internal damage that had been 00:10:39.029 --> 00:10:41.870 done. And when they went to do a scope to see 00:10:41.870 --> 00:10:45.529 if the bowel rest was helping. I woke up with 00:10:45.529 --> 00:10:49.850 an ostomy. So I had zero time to mentally prepare. 00:10:50.409 --> 00:10:52.830 It was basically worst case scenario. I woke 00:10:52.830 --> 00:10:54.990 up a few days later after, you know, a medically 00:10:54.990 --> 00:10:57.769 induced coma. They told me that my colon perforated 00:10:57.769 --> 00:11:01.350 during the scope and you have an ostomy. My surgeon, 00:11:01.509 --> 00:11:03.610 you know, she tried to be positive and she was 00:11:03.610 --> 00:11:06.879 like, well, the good news is, you know. We have 00:11:06.879 --> 00:11:09.600 the option of the J pouch down the line. Right 00:11:09.600 --> 00:11:11.720 now, we're focused on getting you well again. 00:11:12.039 --> 00:11:14.679 But I still, with the abruptness of it all, I 00:11:14.679 --> 00:11:18.080 really struggled to get over some of those hurdles 00:11:18.080 --> 00:11:20.500 that I think having more time to prepare would 00:11:20.500 --> 00:11:23.440 have helped with. So all you've been through, 00:11:23.600 --> 00:11:27.519 like for many of us, it led you to where you 00:11:27.519 --> 00:11:31.740 are today. And not only from a health standpoint, 00:11:31.779 --> 00:11:34.960 but also, you know, how you spend your time and, 00:11:35.000 --> 00:11:38.129 you know. your advocacy, your awareness. You 00:11:38.129 --> 00:11:41.429 are acting president of an organization called 00:11:41.429 --> 00:11:44.909 Girls for Guts. And for someone hearing about 00:11:44.909 --> 00:11:48.090 Girls with Guts for the first time, give me a 00:11:48.090 --> 00:11:51.629 pitch. What is this? Girls with Guts is my absolute 00:11:51.629 --> 00:11:54.190 heart and soul. It is an organization that changed 00:11:54.190 --> 00:11:57.500 my life. And what I would say is that it's a 00:11:57.500 --> 00:12:00.120 community. It's a safe place to land for people 00:12:00.120 --> 00:12:03.440 who are newly diagnosed, maybe have been diagnosed 00:12:03.440 --> 00:12:05.639 for several years, but don't have that support. 00:12:06.019 --> 00:12:08.799 It's sister to sister, you know, sisterhood, 00:12:08.840 --> 00:12:11.779 bonding. It's building people up. It's preparing 00:12:11.779 --> 00:12:15.320 people for those surgeries ahead of time, talking 00:12:15.320 --> 00:12:17.879 about our disease in a candid way so that, you 00:12:17.879 --> 00:12:20.539 know, we can reduce some of the stigmas. And 00:12:20.539 --> 00:12:23.120 ultimately, yeah, it's community. It's a movement. 00:12:23.740 --> 00:12:27.559 What made you pick advocacy instead of maybe 00:12:27.559 --> 00:12:32.379 just focusing on your recovery or on your own 00:12:32.379 --> 00:12:35.580 personal IB journey? How did you get into being 00:12:35.580 --> 00:12:38.820 so active? I always say that advocacy actually 00:12:38.820 --> 00:12:44.700 picked me. I went to Syracuse for film and I 00:12:44.700 --> 00:12:47.480 loved storytelling. I loved writing. I loved 00:12:47.480 --> 00:12:51.240 creating, you know, small documentaries and things 00:12:51.240 --> 00:12:53.960 on important matters. And for one of my classes, 00:12:53.980 --> 00:12:56.700 we had a project that was tell the class something 00:12:56.700 --> 00:12:59.139 they might not know about you just by looking 00:12:59.139 --> 00:13:02.720 at you from the outside. And I said, huh, do 00:13:02.720 --> 00:13:06.039 I share something, you know? you know, basic, 00:13:06.179 --> 00:13:08.820 or do I tell everyone that I currently have an 00:13:08.820 --> 00:13:11.220 ostomy and I have this chronic condition? And 00:13:11.220 --> 00:13:15.080 I said, let me be bold. Let me create this project 00:13:15.080 --> 00:13:18.159 around, you know, my ostomy. And so the whole 00:13:18.159 --> 00:13:21.159 video like sort of painted the picture of my 00:13:21.159 --> 00:13:23.960 diagnosis journey. And then at the end, I did 00:13:23.960 --> 00:13:28.120 like a reveal of my ostomy. And that little clip. 00:13:28.649 --> 00:13:31.230 Got a standing ovation in my class. They wanted 00:13:31.230 --> 00:13:33.909 to see it again. I had people coming up to me 00:13:33.909 --> 00:13:36.409 after that were like, my dad has Crohn's disease. 00:13:36.549 --> 00:13:39.570 My sister has Crohn's disease. I've never seen 00:13:39.570 --> 00:13:42.169 someone, you know, someone's ostomy. How are 00:13:42.169 --> 00:13:46.330 you so confident in showing that off? And again, 00:13:46.570 --> 00:13:48.809 it was it was hearing those stories that really 00:13:48.809 --> 00:13:52.259 propelled me towards the thinking like. oh, this 00:13:52.259 --> 00:13:55.740 kind of storytelling matters. Sharing your own 00:13:55.740 --> 00:13:59.480 story really matters. And you can make an impact 00:13:59.480 --> 00:14:02.980 by doing that. Absolutely. Absolutely. And eventually 00:14:02.980 --> 00:14:06.179 it led you to Girls With Guts. So you kind of 00:14:06.179 --> 00:14:11.840 told me a bit about what it is. Now, what specific 00:14:11.840 --> 00:14:15.779 problems does this organization solve for women 00:14:15.779 --> 00:14:19.409 with IBD? Some of the biggest hurdles and problems 00:14:19.409 --> 00:14:22.970 that we try to solve are those body image and 00:14:22.970 --> 00:14:26.590 societal, you know, dysmorphic things that people 00:14:26.590 --> 00:14:29.470 place on women specifically. You have surgery, 00:14:29.629 --> 00:14:32.370 you know, your body's covered in scars. There's 00:14:32.370 --> 00:14:35.309 a lot of vulnerability in sharing that with other 00:14:35.309 --> 00:14:38.029 people and, you know, feeling like yourself and 00:14:38.029 --> 00:14:41.590 your skin again. We also focus on intimacy, motherhood, 00:14:41.629 --> 00:14:44.830 sexuality, you know, navigating life transitions 00:14:44.830 --> 00:14:47.529 and aging with IBD. which, you know, a lot of 00:14:47.529 --> 00:14:50.549 people, we are the aging generation with IBD. 00:14:50.590 --> 00:14:53.169 So trying to talk about those things that are 00:14:53.169 --> 00:14:56.820 really important to our community. And tell me 00:14:56.820 --> 00:14:58.659 a little bit about how this works with Girls 00:14:58.659 --> 00:15:02.820 With Guts. Are you nationwide? And you don't 00:15:02.820 --> 00:15:04.879 have to give me specific numbers, but still, 00:15:04.960 --> 00:15:08.539 I'm curious to see what sort of a range you have 00:15:08.539 --> 00:15:12.139 and how many people basically you help out and 00:15:12.139 --> 00:15:16.419 support. And how does this translate, this concept 00:15:16.419 --> 00:15:19.759 of Girls With Guts into action, really? Yeah, 00:15:19.820 --> 00:15:22.639 so we have a very active private forum of about 00:15:22.639 --> 00:15:26.000 10 ,000. And then from our social media pages 00:15:26.000 --> 00:15:29.299 span between 21 ,000 to 24 ,000, depending where. 00:15:29.519 --> 00:15:33.139 And so the way that we turn our mission into 00:15:33.139 --> 00:15:36.500 action is through education, medically reviewed 00:15:36.500 --> 00:15:38.720 information and education that we can share with 00:15:38.720 --> 00:15:40.840 our community. Because sometimes understanding 00:15:40.840 --> 00:15:44.539 that medical jargon is very hard for the lay 00:15:44.539 --> 00:15:47.000 patient. So we want people to feel like they 00:15:47.000 --> 00:15:49.700 are empowered with the tools. questions to ask 00:15:49.700 --> 00:15:52.600 their doctors, especially as it relates to women's 00:15:52.600 --> 00:15:55.679 issues. We also have a variety of other programming. 00:15:55.860 --> 00:15:58.600 We have, you know, in -person retreats. We invite 00:15:58.600 --> 00:16:02.480 60 to 70 women annually to join us at a different 00:16:02.480 --> 00:16:05.259 location just to create that access across the 00:16:05.259 --> 00:16:08.639 nationally. We do have some friends in Europe 00:16:08.639 --> 00:16:10.899 as well and some Canadian friends that do travel 00:16:10.899 --> 00:16:13.279 in to come to our retreats, which is really awesome. 00:16:13.519 --> 00:16:16.220 And then, yeah, we have, you know, other programs. 00:16:16.299 --> 00:16:19.120 One program our butt basket program. So we send 00:16:19.120 --> 00:16:22.580 out these post -op care packs and infusion kits 00:16:22.580 --> 00:16:25.419 to our community members who might need that 00:16:25.419 --> 00:16:28.399 extra support during those. And yeah, we ultimately, 00:16:28.559 --> 00:16:31.419 we try to bridge the gaps through in -person 00:16:31.419 --> 00:16:33.559 programming and virtual programming as well. 00:16:33.620 --> 00:16:35.759 So we could bring our community together. That's 00:16:35.759 --> 00:16:37.440 really amazing. So for anybody who's listening 00:16:37.440 --> 00:16:39.220 or is interested in sort of looking into this, 00:16:39.220 --> 00:16:41.600 this is Girls With Guts. You have a strong online 00:16:41.600 --> 00:16:43.480 presence, obviously, and the link is going to 00:16:43.480 --> 00:16:45.919 be in the show notes as well. So Alicia, what 00:16:45.919 --> 00:16:49.100 does a day look like for you as president of 00:16:49.100 --> 00:16:53.860 Girls With Guts? So a day for me, I mean, it's 00:16:53.860 --> 00:16:56.500 not just emails. It's a lot of strategy, you 00:16:56.500 --> 00:16:58.940 know, community building, prepping and planning 00:16:58.940 --> 00:17:01.340 out our retreats, our programming. It's checking 00:17:01.340 --> 00:17:03.860 in on different volunteers, our board members, 00:17:03.980 --> 00:17:06.539 making sure that we are all still unified in 00:17:06.539 --> 00:17:09.359 the mission of the organization, talking to other 00:17:09.359 --> 00:17:12.380 advocate friends, picking their brains on ways 00:17:12.380 --> 00:17:14.759 we can collaborate and things like that. And 00:17:14.759 --> 00:17:16.579 then, yeah, it's connecting with our partners, 00:17:16.680 --> 00:17:19.539 our sponsors, you know, maintaining those relationships. 00:17:20.430 --> 00:17:22.710 And with all that going on, do you actually still 00:17:22.710 --> 00:17:26.490 have the time to really talk to the people that 00:17:26.490 --> 00:17:29.490 are seeking help from you and your organization? 00:17:30.230 --> 00:17:33.690 So that's one thing that I refuse to let go of 00:17:33.690 --> 00:17:36.049 because that is just a personal piece for me 00:17:36.049 --> 00:17:39.329 that I... I feel so strongly, you know, tied 00:17:39.329 --> 00:17:41.430 to our mission and it affects me personally. 00:17:41.630 --> 00:17:44.950 And so if, you know, we're at a retreat and there's 00:17:44.950 --> 00:17:47.630 someone who just had ostomy surgery and needs 00:17:47.630 --> 00:17:49.950 someone to talk to, I will sit down with them, 00:17:50.109 --> 00:17:52.470 connect with them, share my tips and tricks. 00:17:52.650 --> 00:17:54.730 Or if that's answering, you know, somebody's 00:17:54.730 --> 00:17:56.710 post in the forum where they're seeking support, 00:17:56.890 --> 00:18:00.250 I do try. And, you know, as much as my other 00:18:00.250 --> 00:18:02.630 board members would like me to step back a little 00:18:02.630 --> 00:18:05.009 bit so that I could focus on some of the other 00:18:05.009 --> 00:18:07.640 things that we need to do. I still really like 00:18:07.640 --> 00:18:09.720 to be as close to the community as possible. 00:18:10.359 --> 00:18:14.400 I totally understand. And I think that's the 00:18:14.400 --> 00:18:17.259 heart of the whole thing anyway, right? And you 00:18:17.259 --> 00:18:18.740 cannot just step away from the heart of the whole 00:18:18.740 --> 00:18:23.220 organization and its purpose. Now, how has Girls 00:18:23.220 --> 00:18:26.380 With Guts evolved since you've taken on this 00:18:26.380 --> 00:18:29.539 role? And looking ahead also, what's your vision 00:18:29.539 --> 00:18:31.849 for this organization? When I started with the 00:18:31.849 --> 00:18:34.470 organization back in 2013, I actually started 00:18:34.470 --> 00:18:37.390 as the director of multimedia, so I was responsible 00:18:37.390 --> 00:18:39.569 for getting our social media off the ground. 00:18:39.690 --> 00:18:41.609 I remember when I had to get our Facebook page 00:18:41.609 --> 00:18:43.890 set up as a business and it was like, you need 00:18:43.890 --> 00:18:46.269 at least 100 likes to make it like an official 00:18:46.269 --> 00:18:50.369 Facebook page. Not to age myself, but back in 00:18:50.369 --> 00:18:52.190 the day when it was, you know, everything was 00:18:52.190 --> 00:18:55.529 sort of newer and fresh. And I also did our retreat 00:18:55.529 --> 00:18:59.130 recaps as well. But so we started with our first 00:18:59.130 --> 00:19:02.509 retreat had 30 attendees. And that has tremendously 00:19:02.509 --> 00:19:06.750 blown up to the, you know, the way that we actually 00:19:06.750 --> 00:19:09.490 have two retreats now to support 100 women a 00:19:09.490 --> 00:19:12.769 year. So we've expanded in that way. We've expanded 00:19:12.769 --> 00:19:14.910 on social media and our educational outreach. 00:19:15.230 --> 00:19:18.400 And we've also, you know. expanded in some of 00:19:18.400 --> 00:19:21.119 our educational components as well so trying 00:19:21.119 --> 00:19:23.500 to stay up to date with you know what's going 00:19:23.500 --> 00:19:26.500 on how can we bring that to our community and 00:19:26.500 --> 00:19:30.910 yeah it's it's been A shocking amount of growth, 00:19:31.009 --> 00:19:33.410 not only with our organization, but with the 00:19:33.410 --> 00:19:37.069 IBD community and advocacy space at large. One 00:19:37.069 --> 00:19:39.089 thing that I'm very passionate about, and a lot 00:19:39.089 --> 00:19:40.910 of organizations are already doing this well, 00:19:41.089 --> 00:19:43.769 but for teen girls specifically, I would love 00:19:43.769 --> 00:19:46.210 for us to eventually get into the teen programming 00:19:46.210 --> 00:19:51.130 space, doing teen and caregiver retreats to build 00:19:51.130 --> 00:19:53.549 up some of that empowerment that I learned early 00:19:53.549 --> 00:19:56.650 on and gained early on and being able to give 00:19:56.650 --> 00:19:59.630 that to the next generation. That's the direction 00:19:59.630 --> 00:20:02.789 that you want Girls for Guts to take into, right? 00:20:03.069 --> 00:20:06.509 I mean, I love that we support 18 and up women 00:20:06.509 --> 00:20:09.589 with IBD and their ostomies for any reason. I 00:20:09.589 --> 00:20:11.789 think there are some programming things that 00:20:11.789 --> 00:20:13.829 we're bringing in in the next year to continue 00:20:13.829 --> 00:20:17.309 to support that. But I do see us eventually getting 00:20:17.309 --> 00:20:20.970 into that teen programming gap to help between 00:20:20.970 --> 00:20:24.250 the teen to the adult transition. I think there's 00:20:24.250 --> 00:20:26.269 still a big gap there, and I would love to be 00:20:26.269 --> 00:20:28.009 able to figure out how to bridge that. And that 00:20:28.009 --> 00:20:29.630 makes perfect sense because you personally have 00:20:29.630 --> 00:20:32.170 a lot of experience in that specific category 00:20:32.170 --> 00:20:34.250 and age range, right? So yeah, that makes complete 00:20:34.250 --> 00:20:37.170 sense. So this all sounds amazing. This all sounds 00:20:37.170 --> 00:20:40.549 positive, but there's no job without challenges. 00:20:40.690 --> 00:20:46.690 And I'm just curious to see what your main challenges 00:20:46.690 --> 00:20:49.789 are, especially running such an organization 00:20:49.789 --> 00:20:52.930 in this particular space. I mean, obviously, 00:20:53.069 --> 00:20:55.069 one of the biggest challenges for nonprofits 00:20:55.069 --> 00:20:58.769 is funding. I feel like that's a constant hurdle 00:20:58.769 --> 00:21:02.190 that we are trying to get over annually. And 00:21:02.190 --> 00:21:05.450 it's also trying to find the balance and not 00:21:05.450 --> 00:21:08.920 taking on. all of the emotional weight of the 00:21:08.920 --> 00:21:12.400 stories so that we can remain a strong foundation 00:21:12.400 --> 00:21:15.779 for our community. I think it can become very 00:21:15.779 --> 00:21:19.380 easy to try and, you know, solve each individual 00:21:19.380 --> 00:21:22.240 person's problem that's coming to us. But we 00:21:22.240 --> 00:21:23.940 want to make sure that we are really, you know, 00:21:23.940 --> 00:21:26.640 sustainable and can be around for a long time 00:21:26.640 --> 00:21:30.039 to serve as that piece of support. Really, really 00:21:30.039 --> 00:21:34.359 great. I want to take a very quick deep dive 00:21:34.359 --> 00:21:38.769 into some of the issues that you help women with 00:21:38.769 --> 00:21:41.769 in regards to IBD. So you mentioned body image, 00:21:41.910 --> 00:21:43.809 you mentioned intimacy, you mentioned relationships. 00:21:44.029 --> 00:21:46.069 So let's talk about these three very briefly. 00:21:47.109 --> 00:21:52.009 How do you think surgeries, ostomies, scars impact 00:21:52.009 --> 00:21:56.619 how women see themselves? Knowing my own personal 00:21:56.619 --> 00:21:59.740 journey, there's a lot of grief that comes with, 00:21:59.759 --> 00:22:01.980 you know, feeling like you're losing autonomy 00:22:01.980 --> 00:22:04.460 of your body as it's changing with, you know, 00:22:04.460 --> 00:22:07.759 surgical scars, weight loss, different things 00:22:07.759 --> 00:22:10.759 like that. So I feel like that grief is very 00:22:10.759 --> 00:22:13.900 real and it kind of ebbs and flows. One day you 00:22:13.900 --> 00:22:16.240 may be feeling very confident in your body. One 00:22:16.240 --> 00:22:18.299 day you might be wearing a pair of jeans that 00:22:18.299 --> 00:22:20.799 don't quite fit over your ostomy and that, you 00:22:20.799 --> 00:22:23.700 know, the wave of grief comes back again. I think 00:22:23.700 --> 00:22:27.940 in our society. body image is just a huge disfigurement 00:22:27.940 --> 00:22:30.660 to our community. And then when you layer chronic 00:22:30.660 --> 00:22:32.900 illness and the fluctuations with that on top 00:22:32.900 --> 00:22:35.960 of it, it can be really hard to navigate if you 00:22:35.960 --> 00:22:38.900 don't have a sense of support that can help you 00:22:38.900 --> 00:22:44.140 really lean in through that. So obviously, at 00:22:44.140 --> 00:22:47.740 least over the last years, I could not say decade, 00:22:47.779 --> 00:22:50.740 but at least the last years, the presence of 00:22:50.740 --> 00:22:54.460 IBD IBD community advocacy awareness, especially 00:22:54.460 --> 00:22:57.640 on social media, has really exploded, which is 00:22:57.640 --> 00:23:00.180 really fantastic. And I still think to this day 00:23:00.180 --> 00:23:04.000 that there are times where mental health is one 00:23:04.000 --> 00:23:06.339 of those issues that are sort of kept a little 00:23:06.339 --> 00:23:08.900 bit on the side or not talked about enough. Another 00:23:08.900 --> 00:23:12.960 one that I kind of rarely see is intimacy. So 00:23:12.960 --> 00:23:16.400 how often do you actually see women struggling 00:23:16.400 --> 00:23:19.339 with intimacy and relationships because of the 00:23:19.339 --> 00:23:21.980 IBD journey that they're going through? Oh my 00:23:21.980 --> 00:23:24.539 gosh. I think I see a question in our private 00:23:24.539 --> 00:23:28.240 forum probably every other day about this. It's 00:23:28.240 --> 00:23:30.900 starting with dating. How do I tell someone? 00:23:30.980 --> 00:23:33.319 When do I tell someone that I have this disease? 00:23:33.859 --> 00:23:37.799 It's will I have an accident during sex? Will 00:23:37.799 --> 00:23:41.460 my ostomy bag come off? Are there things that 00:23:41.460 --> 00:23:45.039 I can wear to feel better in my skin? It's all 00:23:45.039 --> 00:23:49.279 of those pieces and all of those layers and trying 00:23:49.279 --> 00:23:52.200 to find a new way to have a relationship. with 00:23:52.200 --> 00:23:56.140 your body, we hear it constantly. Still, you 00:23:56.140 --> 00:23:58.960 know, things have really shifted over the years, 00:23:58.980 --> 00:24:02.160 but, you know, intimacy and relationships, it's 00:24:02.160 --> 00:24:04.359 a big one. It's still a very big one. It really 00:24:04.359 --> 00:24:07.380 is. And if I go back 13 years in the year that 00:24:07.380 --> 00:24:10.380 I was diagnosed, when I was... Still flaring, 00:24:10.380 --> 00:24:14.039 actually. And I used to go on dates. The very 00:24:14.039 --> 00:24:16.240 first one I went, I basically spilled everything 00:24:16.240 --> 00:24:18.519 on the first date. And I don't think it went 00:24:18.519 --> 00:24:20.099 very well because I think it was information 00:24:20.099 --> 00:24:25.200 overload. So just very bluntly, when do I tell 00:24:25.200 --> 00:24:29.039 someone about my IBD? I think it varies. I think 00:24:29.039 --> 00:24:32.480 it varies on your comfortability level. In the 00:24:32.480 --> 00:24:34.660 beginning of my journey, I would wait for, you 00:24:34.660 --> 00:24:36.819 know, a few dates, see if things were really 00:24:36.819 --> 00:24:38.859 going to take off. And then I would sort of slip 00:24:38.859 --> 00:24:40.640 it in there like, hey, by the way, I have this 00:24:40.640 --> 00:24:42.960 thing. You don't have to worry about it right 00:24:42.960 --> 00:24:45.480 now. I'm in remission. But these things could 00:24:45.480 --> 00:24:48.880 happen to when I started dating my girlfriend 00:24:48.880 --> 00:24:52.079 in the last couple of years. I had all of the 00:24:52.079 --> 00:24:54.730 information about myself. very publicly on my 00:24:54.730 --> 00:24:57.349 social channels. So she could see it. It was 00:24:57.349 --> 00:25:00.890 out there. There was no hiding it. And so I think 00:25:00.890 --> 00:25:03.589 that that really helped to bridge the gap in 00:25:03.589 --> 00:25:05.869 that conversation, you know, and she did her 00:25:05.869 --> 00:25:08.329 own research. She was really incredible in that 00:25:08.329 --> 00:25:11.170 way. And she wanted to see my ostomy and see 00:25:11.170 --> 00:25:13.950 me do a bag change and very supportive. And I 00:25:13.950 --> 00:25:17.130 think it really depends on your comfort level 00:25:17.130 --> 00:25:21.059 and, you know, the way the readiness, the. in 00:25:21.059 --> 00:25:22.920 sharing. I don't think there's anything wrong 00:25:22.920 --> 00:25:24.920 with waiting. And I don't think there's anything 00:25:24.920 --> 00:25:27.160 wrong with sharing it on the first date. If you're 00:25:27.160 --> 00:25:29.319 just trying to rip the bandaid off, you know, 00:25:29.319 --> 00:25:32.019 it takes some practice sometimes. Exactly. If 00:25:32.019 --> 00:25:33.700 you're a risk taker, hey, just, you know, blow 00:25:33.700 --> 00:25:36.759 it all out and put all the fish on the table, 00:25:36.799 --> 00:25:43.910 right? Great. Now... How do you think IBD intersects 00:25:43.910 --> 00:25:45.950 with things like, you know, dating, marriage, 00:25:46.069 --> 00:25:47.829 and then also particularly wanting children? 00:25:47.910 --> 00:25:50.549 And I mentioned the children part because just 00:25:50.549 --> 00:25:53.049 today on TikTok or all places, somebody sent 00:25:53.049 --> 00:25:56.289 me a message and said, hey, you know, a pregnancy 00:25:56.289 --> 00:25:59.150 and ulcerative colitis, is that safe? What does 00:25:59.150 --> 00:26:01.930 that look like? I think that, you know, obviously 00:26:01.930 --> 00:26:04.430 there's a lot of changing data with pregnancy 00:26:04.430 --> 00:26:07.710 and IBD. What medicines can you be on? Does surgery 00:26:07.710 --> 00:26:11.119 impact that? And I think it's having that conversation 00:26:11.119 --> 00:26:13.279 with your doctor. I think that's the best place 00:26:13.279 --> 00:26:15.900 to start because your care team can really come 00:26:15.900 --> 00:26:18.000 up with a personalized plan for you depending 00:26:18.000 --> 00:26:21.500 on where you are in your journey. I have many 00:26:21.500 --> 00:26:23.940 a friend who has had a very successful pregnancy 00:26:23.940 --> 00:26:26.799 with IBD being on their medications and safely, 00:26:26.960 --> 00:26:29.799 you know, having children. And then I know, you 00:26:29.799 --> 00:26:32.259 know, a gambit of us who have had issues with 00:26:32.259 --> 00:26:35.380 fertility. And I think it really is personal. 00:26:35.680 --> 00:26:38.740 And ultimately, your care team is the best. place 00:26:38.740 --> 00:26:42.200 to start with that. Shifting back to you, you've 00:26:42.200 --> 00:26:46.079 had your IBD journey. You've had this girls with 00:26:46.079 --> 00:26:49.259 guts journey. Now you've spoken to, I'm assuming 00:26:49.259 --> 00:26:51.380 just hundreds and hundreds of people, you know, 00:26:51.380 --> 00:26:56.680 dealing with IBD, mental health, physical challenges. 00:26:57.480 --> 00:27:01.180 And I always say that IBD, like any other, you 00:27:01.180 --> 00:27:04.500 know, serious disease. It changes you as a person 00:27:04.500 --> 00:27:06.980 or it shapes you as a person as well. In your 00:27:06.980 --> 00:27:09.059 case, you were 14 when you were diagnosed and 00:27:09.059 --> 00:27:12.440 you already had symptoms before that. So in what 00:27:12.440 --> 00:27:17.259 way has inflammatory bowel disease shaped the 00:27:17.259 --> 00:27:21.259 Alicia that you are today? Like I said, I'm a 00:27:21.259 --> 00:27:24.230 big storyteller. Got a typewriter when I was 00:27:24.230 --> 00:27:26.150 like eight years old and I immediately was on 00:27:26.150 --> 00:27:29.710 that thing writing stories. And so I think, one, 00:27:29.869 --> 00:27:32.970 again, it has given me empathy and compassion 00:27:32.970 --> 00:27:36.109 for all kinds of illnesses. I feel like I know 00:27:36.109 --> 00:27:38.849 how to level with people who are really struggling. 00:27:39.170 --> 00:27:42.450 It doesn't have to be IBD. And then that storytelling 00:27:42.450 --> 00:27:46.009 element. I feel like I, having lived through 00:27:46.009 --> 00:27:48.690 this, have a... very, you know, different lens 00:27:48.690 --> 00:27:52.289 on life that other people might not have. And 00:27:52.289 --> 00:27:54.829 I would say it's given me a unique perspective 00:27:54.829 --> 00:27:58.289 on living because each day is not guaranteed 00:27:58.289 --> 00:28:03.630 to be the same. I like to really skim Reddit 00:28:03.630 --> 00:28:05.829 communities because on Reddit, you know, you 00:28:05.829 --> 00:28:09.829 have actually a lot of activity, ostomy, subreddits, 00:28:09.910 --> 00:28:14.269 colitis subreddits, Crohn's subreddits, and lots 00:28:14.269 --> 00:28:17.079 of times. So that's sort of the starting point 00:28:17.079 --> 00:28:19.019 for people who have just been diagnosed, right? 00:28:19.099 --> 00:28:21.660 And then just today I saw a post for somebody 00:28:21.660 --> 00:28:25.319 who said, you know, my life is over, question 00:28:25.319 --> 00:28:31.519 mark, or I just got diagnosed, now what? If for 00:28:31.519 --> 00:28:35.259 somebody who just got told that they have colitis 00:28:35.259 --> 00:28:38.660 or Crohn's, somebody who's overwhelmed a bit, 00:28:38.720 --> 00:28:41.900 what would your first words of advice be? It 00:28:41.900 --> 00:28:44.519 would be that you are not alone. There are hundreds 00:28:44.519 --> 00:28:47.500 of thousands of us out here. There are niche 00:28:47.500 --> 00:28:50.960 communities for each person. And it's okay to 00:28:50.960 --> 00:28:54.200 grieve. It's okay to grieve. It's a lot to process. 00:28:54.579 --> 00:28:57.160 You know, it does change your life in a variety 00:28:57.160 --> 00:28:59.940 of ways. And then the last piece of advice I 00:28:59.940 --> 00:29:02.519 would give is to find one person that you can 00:29:02.519 --> 00:29:05.279 talk to candidly about the disease. That takes 00:29:05.279 --> 00:29:09.059 off a huge burden and mental load for you. And 00:29:09.059 --> 00:29:11.900 I think ultimately for me, having had Katie back 00:29:11.900 --> 00:29:14.259 in the day, that changed the trajectory of my 00:29:14.259 --> 00:29:17.140 entire journey without having had that connection. 00:29:18.109 --> 00:29:21.250 I'm not sure that I would feel as empowered or 00:29:21.250 --> 00:29:24.529 as confident or able to talk about my experience 00:29:24.529 --> 00:29:27.970 as I would have otherwise. So then what's one 00:29:27.970 --> 00:29:31.210 thing that you wish every person with IBD understood 00:29:31.210 --> 00:29:34.269 earlier? For me personally, I think one thing 00:29:34.269 --> 00:29:37.009 that I wish I understood earlier is that IBD 00:29:37.009 --> 00:29:39.410 is lifelong, so you have to learn how to befriend 00:29:39.410 --> 00:29:41.990 it. Because when I was diagnosed, my priority 00:29:41.990 --> 00:29:44.410 was how do I get rid of it? How do I hide it? 00:29:44.529 --> 00:29:47.009 How do I minimize it? How do I get rid of this? 00:29:47.089 --> 00:29:50.450 What can I take that just erases it from my life? 00:29:50.670 --> 00:29:52.970 And then I quickly realized, no, it was here 00:29:52.970 --> 00:29:55.930 to stay, and it's better to befriend it, figure 00:29:55.930 --> 00:29:58.309 out what works for you, figure out the adjustments 00:29:58.309 --> 00:30:05.029 that you need to make. It's better to find ways 00:30:05.029 --> 00:30:07.529 to work with it than just pretend that it doesn't 00:30:07.529 --> 00:30:09.549 exist. I think that that will impact your mental 00:30:09.549 --> 00:30:11.809 health. That will make you feel more isolated 00:30:11.809 --> 00:30:15.970 as well. And yeah, I think for me, befriending 00:30:15.970 --> 00:30:18.769 it was ultimately, you know, what made the most 00:30:18.769 --> 00:30:21.750 sense and has been the best for my journey. So 00:30:21.750 --> 00:30:24.730 looking into the future, do you think that we'll 00:30:24.730 --> 00:30:28.019 see an IBD cure in our lifetime? I would love 00:30:28.019 --> 00:30:30.579 to say yes, I really would. And so many things 00:30:30.579 --> 00:30:34.339 have changed in the last 20 years, but I'm not 00:30:34.339 --> 00:30:37.980 sure. I mean, I will say I hope so. Fingers crossed. 00:30:38.180 --> 00:30:40.799 But if nothing else, the support has changed. 00:30:41.079 --> 00:30:43.740 The medication landscape has changed. I think 00:30:43.740 --> 00:30:46.700 that there is a great chance and a better chance 00:30:46.700 --> 00:30:49.720 of success and remission for patients that are 00:30:49.720 --> 00:30:52.759 newly diagnosed now with the treatments and support 00:30:52.759 --> 00:30:55.599 that's out there. So fingers crossed that we 00:30:55.599 --> 00:30:57.220 do have a treatment in our lifetime. But if not, 00:30:57.319 --> 00:30:59.519 I think, you know, being diagnosed now versus 00:30:59.519 --> 00:31:01.299 20 years ago, you're in a much better place. 00:31:01.759 --> 00:31:03.680 And even if it might take a little bit longer 00:31:03.680 --> 00:31:05.740 to get to that point, like you just mentioned, 00:31:05.819 --> 00:31:08.579 though, the support, the community, basically 00:31:08.579 --> 00:31:11.099 Wilkhart has really grown and Girls With Guts 00:31:11.099 --> 00:31:13.400 is certainly doing its part. You are certainly 00:31:13.400 --> 00:31:17.700 doing its part. So keep doing that. I think you're 00:31:17.700 --> 00:31:20.740 not just helping people. I'm pretty convinced 00:31:20.740 --> 00:31:23.000 that you're actually changing a lot of people's 00:31:23.000 --> 00:31:26.339 lives as well. And that's really great. So Alicia, 00:31:26.420 --> 00:31:28.779 thank you so much for speaking to me today and 00:31:28.779 --> 00:31:32.529 for also sharing. your world, your journey, and 00:31:32.529 --> 00:31:34.809 what you do with Girls With Guts. I wish you 00:31:34.809 --> 00:31:37.589 nothing but the best moving forward. And like 00:31:37.589 --> 00:31:39.150 I just mentioned, keep doing what you're doing, 00:31:39.230 --> 00:31:42.490 because even if you just help one person, that's 00:31:42.490 --> 00:31:46.109 a massive success already. Yeah, thank you so 00:31:46.109 --> 00:31:48.569 much for having me. It's been a pleasure. Thanks. 00:31:49.529 --> 00:31:52.390 That's it for today's episode of Colitis Unfiltered. 00:31:52.890 --> 00:31:55.849 I'm Frank Klabring, and if this hit home or hit 00:31:55.849 --> 00:31:58.789 your gut, do us a favor, subscribe to the show, 00:31:59.289 --> 00:32:01.829 And follow us at Kaleidos Unfiltered on YouTube, 00:32:02.049 --> 00:32:05.410 Substack, Instagram, Threads, TikTok, and Reddit. 00:32:05.710 --> 00:32:07.849 We'll see you soon for more inspiring stories 00:32:07.849 --> 00:32:09.089 from the bathroom floor.