WEBVTT 00:00:02.920 --> 00:00:06.280 It made me see how strong and capable I was in 00:00:06.280 --> 00:00:10.460 certain ways. I did find it eventually to become 00:00:10.460 --> 00:00:14.060 empowering. It definitely taught me the importance 00:00:14.060 --> 00:00:17.120 of listening to your body, to your intuition. 00:00:17.859 --> 00:00:21.140 You know, even when you have doctors telling 00:00:21.140 --> 00:00:23.679 you certain things, advocate for yourself. I 00:00:23.679 --> 00:00:28.179 cannot stress that enough. Advocate for yourself. 00:00:29.230 --> 00:00:32.189 Welcome back to Colitis Unfiltered. My name is 00:00:32.189 --> 00:00:34.250 Frank Tabering, and today I have the pleasure 00:00:34.250 --> 00:00:36.929 of speaking with Jamie, who got diagnosed with 00:00:36.929 --> 00:00:40.689 ulcerative colitis at age 25 in Chicago, Illinois. 00:00:40.929 --> 00:00:42.950 Jamie, it's a pleasure to have you on the show 00:00:42.950 --> 00:00:46.990 today. Thank you for having me. So let's dive 00:00:46.990 --> 00:00:50.109 right into it. We're going to talk about colitis 00:00:50.109 --> 00:00:53.450 today, and colitis, well, mostly starts with 00:00:53.450 --> 00:00:57.460 symptoms. Going back for you, at age 25, what 00:00:57.460 --> 00:01:00.119 were the first symptoms that showed up? What 00:01:00.119 --> 00:01:03.140 indicated to you that there was something wrong? 00:01:03.759 --> 00:01:06.400 Well, it's actually kind of a funny story. I 00:01:06.400 --> 00:01:09.760 had every symptom by the book, you know, the 00:01:09.760 --> 00:01:15.060 abdominal pain, diarrhea, just you name it, the 00:01:15.060 --> 00:01:20.159 bloating. If it was on WebMD, I had it. And I 00:01:20.159 --> 00:01:23.099 actually, eight months prior to getting diagnosed, 00:01:24.000 --> 00:01:26.939 I diagnosed myself on my lunch break at work 00:01:26.939 --> 00:01:29.439 and I called my mom and I said, oh, my gosh, 00:01:29.519 --> 00:01:32.459 I think I have ulcerative colitis. And she was 00:01:32.459 --> 00:01:34.819 like, oh, Jamie, like she thought I was being 00:01:34.819 --> 00:01:38.659 dramatic. Right. And and she was like, if you 00:01:38.659 --> 00:01:40.959 actually think that you need to go to the doctor 00:01:40.959 --> 00:01:43.359 and get that looked at. And I was like, yeah, 00:01:43.439 --> 00:01:45.019 no, I'm probably not going to do that because 00:01:45.019 --> 00:01:51.760 what if something's wrong? And then I. Ended 00:01:51.760 --> 00:01:54.379 up getting a really bad reaction on my legs. 00:01:54.700 --> 00:01:57.959 And so they gave me a dose of prednisone where 00:01:57.959 --> 00:01:59.819 it's like, you know, the 5, 4, 3, 2, 1 pack. 00:02:00.280 --> 00:02:04.700 And when I got down to the one, the rash flared 00:02:04.700 --> 00:02:09.479 up again. So they gave me another pack. And then 00:02:09.479 --> 00:02:11.840 I was really good. Like I felt good for months 00:02:11.840 --> 00:02:16.620 after that. And so I never went. I never went 00:02:16.620 --> 00:02:19.979 to the doctor. I later found out that prednisone 00:02:19.979 --> 00:02:22.620 was one of the only medications that worked really 00:02:22.620 --> 00:02:26.780 well for me. So I had a really interesting start 00:02:26.780 --> 00:02:31.300 to what I was feeling and then in a lot of denial 00:02:31.300 --> 00:02:35.439 about. So you're probably the first person that 00:02:35.439 --> 00:02:38.240 I heard who actually self -diagnosed. you know, 00:02:38.240 --> 00:02:41.620 colitis, especially it's a complex disease. At 00:02:41.620 --> 00:02:43.719 least when I was diagnosed, that was the first 00:02:43.719 --> 00:02:47.080 time that I've ever heard of it. And I'm sure 00:02:47.080 --> 00:02:49.219 it was the same for you, but you picked up your 00:02:49.219 --> 00:02:51.659 knowledge from the internet, right? Well, yeah, 00:02:51.740 --> 00:02:53.560 I had never heard of it. I just like typed in 00:02:53.560 --> 00:02:56.330 my symptoms in Google and that came up. I had 00:02:56.330 --> 00:02:57.889 never heard of ulcerative colitis. I had heard 00:02:57.889 --> 00:03:00.289 of Crohn's, but I had never heard of ulcerative 00:03:00.289 --> 00:03:04.409 colitis prior to my WebMD search. And then when 00:03:04.409 --> 00:03:06.669 I actually got diagnosed with it was the first 00:03:06.669 --> 00:03:09.870 time that I really was like, oh, OK. And then, 00:03:09.870 --> 00:03:12.469 you know, started hearing about other people 00:03:12.469 --> 00:03:14.729 having it and learning more about it. But it 00:03:14.729 --> 00:03:18.409 was completely foreign to me initially. And I 00:03:18.409 --> 00:03:21.129 didn't even go to the doctor then. Like I said, 00:03:21.210 --> 00:03:24.240 I. When I took that prednisone, I mean, I felt 00:03:24.240 --> 00:03:26.280 like I was on top of the world again. It was 00:03:26.280 --> 00:03:31.199 just the kick I needed to mask the symptoms at 00:03:31.199 --> 00:03:37.740 the time. And so I had gone to my hometown for 00:03:37.740 --> 00:03:41.960 this little festival, this like Halloween festival 00:03:41.960 --> 00:03:46.199 they have every year. And I was 25 and I just 00:03:46.199 --> 00:03:48.539 turned 25 and hanging out with my friends and 00:03:48.539 --> 00:03:52.180 having fun on Friday night. And felt totally 00:03:52.180 --> 00:03:55.199 fine. And then the next morning, I woke up. And 00:03:55.199 --> 00:03:58.520 I didn't think that I had had that much to drink. 00:03:58.580 --> 00:04:01.080 But I definitely was, you know, cutting up and 00:04:01.080 --> 00:04:03.680 letting loose a little bit. So I thought, oh, 00:04:03.719 --> 00:04:06.219 maybe I did overdo it a little bit. And thought 00:04:06.219 --> 00:04:08.219 I was hungover. And as the day went on, I felt 00:04:08.219 --> 00:04:12.240 worse and worse and worse. And tried to eat. 00:04:12.360 --> 00:04:16.259 And that made me feel even more sick. And so 00:04:16.259 --> 00:04:20.670 I thought, oh, my gosh. must have the flu. I 00:04:20.670 --> 00:04:24.769 was teaching second grade at the time and it 00:04:24.769 --> 00:04:27.629 was end of October. So, you know, we're starting 00:04:27.629 --> 00:04:30.709 to get into cold and flu season and a lot of 00:04:30.709 --> 00:04:32.689 my kids were sick. And so I thought, oh, I must 00:04:32.689 --> 00:04:35.870 have what, you know, what's going around with 00:04:35.870 --> 00:04:41.189 my students. So by about Wednesday, I was like, 00:04:41.230 --> 00:04:45.459 I don't actually think this is the flu. I'm Every 00:04:45.459 --> 00:04:49.779 day I'm feeling worse instead of better. I better 00:04:49.779 --> 00:04:55.000 call the doctor. And so I did. And they did some 00:04:55.000 --> 00:04:58.899 blood work. And of course, my white blood cell 00:04:58.899 --> 00:05:05.100 count was like outrageous. And my doctor said, 00:05:05.240 --> 00:05:09.379 I want you to go and see this GI. And so I had 00:05:09.379 --> 00:05:12.509 to wait almost another week. I finally get into 00:05:12.509 --> 00:05:17.149 the GI and he's an older gentleman and he tells 00:05:17.149 --> 00:05:20.750 me he asked me what my symptoms are and I kind 00:05:20.750 --> 00:05:22.889 of fibbed about them because I was raised very 00:05:22.889 --> 00:05:25.569 like girls don't talk about those things you 00:05:25.569 --> 00:05:29.970 don't share and he said you know your your symptoms 00:05:29.970 --> 00:05:33.230 don't seem real severe but you look like you 00:05:33.230 --> 00:05:35.250 don't feel that well. I think he kind of like 00:05:35.250 --> 00:05:38.509 knew I was embarrassed to be totally honest about 00:05:38.509 --> 00:05:41.860 what was really happening. And he said, you have 00:05:41.860 --> 00:05:43.639 to have a colonoscopy. And I started laughing. 00:05:43.839 --> 00:05:45.939 I was 25 years old. I started laughing. I said, 00:05:46.000 --> 00:05:49.800 no, cancer patients and old men have colonoscopies. 00:05:49.800 --> 00:05:53.300 Not me. I'm young. I'm healthy. And he said, 00:05:53.420 --> 00:05:57.420 well, cancer patients, old men, and you have 00:05:57.420 --> 00:06:01.939 colonoscopies now. I said, okay. So I called 00:06:01.939 --> 00:06:04.660 my parents and told them what was going on. Because 00:06:04.660 --> 00:06:06.720 of course, they're worried sick. They live like 00:06:06.720 --> 00:06:09.100 five hours away from me at the time. My mother's 00:06:09.100 --> 00:06:12.920 really worried. What's going on with you? So 00:06:12.920 --> 00:06:15.420 they came up because I needed a driver for my 00:06:15.420 --> 00:06:20.180 colonoscopy, my first of many colonoscopies. 00:06:20.180 --> 00:06:25.399 And I had a huge phobia of needles at the time, 00:06:25.420 --> 00:06:28.199 like a full -on panic attack getting my first 00:06:28.199 --> 00:06:33.639 IV, which is important too, a little later. And, 00:06:33.639 --> 00:06:36.060 you know, my dad's upset watching this all go 00:06:36.060 --> 00:06:38.319 down. He starts to get choked up. He has to leave. 00:06:38.379 --> 00:06:40.680 My mom like puts on the mother warrior face, 00:06:40.800 --> 00:06:42.439 you know, like you just have to do this. You 00:06:42.439 --> 00:06:43.800 have to get through this. We have to find out 00:06:43.800 --> 00:06:47.680 what's going on. So I have my colonoscopy and 00:06:47.680 --> 00:06:52.120 my doctor, my GI comes out and he tells me, I 00:06:52.120 --> 00:06:54.319 don't know how you've been living like this. 00:06:54.379 --> 00:06:57.699 You are the worst I have ever seen undiagnosed 00:06:57.699 --> 00:07:02.629 in my entire career. It is the the damage from 00:07:02.629 --> 00:07:05.129 the ulcerative colitis is all the way through 00:07:05.129 --> 00:07:09.949 your entire colon already. And he slid a Valium 00:07:09.949 --> 00:07:16.629 script across the table to me. He said, get this 00:07:16.629 --> 00:07:18.550 filled. You're going to need it because you have 00:07:18.550 --> 00:07:22.930 a lot more needles coming your way because you 00:07:22.930 --> 00:07:26.829 witnessed my IV meltdown. Now I can take a shot, 00:07:26.829 --> 00:07:29.050 get an IV with no problems. I've come a long 00:07:29.050 --> 00:07:31.720 way, but. You know, that was like my biggest 00:07:31.720 --> 00:07:34.480 medical fear at the time, which is just so hysterical 00:07:34.480 --> 00:07:38.800 to me now because I've been through so much and 00:07:38.800 --> 00:07:41.040 I've had so much trauma since that it's just 00:07:41.040 --> 00:07:44.459 like, you know, I look at myself like, oh, that 00:07:44.459 --> 00:07:49.699 poor girl, you know, she had no idea, no idea 00:07:49.699 --> 00:07:53.779 what was coming in the next year. But yeah, that's 00:07:53.779 --> 00:07:55.779 how it started. And it just got a little crazier 00:07:55.779 --> 00:07:58.699 from there. That's great. And we're going to 00:07:58.699 --> 00:08:01.480 get to that there. I got to tell you, it's been 00:08:01.480 --> 00:08:04.180 12 years now that I've been diagnosed. I was 00:08:04.180 --> 00:08:08.980 29. But still to this day, I can't with the needles. 00:08:09.019 --> 00:08:12.560 So I still load up on glucose every infusion 00:08:12.560 --> 00:08:16.740 I have for my biologics just to make sure my 00:08:16.740 --> 00:08:18.939 body doesn't trick me into want to faint. And 00:08:18.939 --> 00:08:24.319 so I can definitely relate to that part. Obviously, 00:08:24.319 --> 00:08:28.199 by the time you saw this GI and by the time you 00:08:28.199 --> 00:08:31.160 got officially diagnosed, at least you heard 00:08:31.160 --> 00:08:35.940 of colitis at that point. But hearing an unofficial 00:08:35.940 --> 00:08:39.019 diagnosis, hearing somebody say that the condition 00:08:39.019 --> 00:08:43.559 of your intestines is very dramatic, for the 00:08:43.559 --> 00:08:46.360 lack of a better word, what went through your 00:08:46.360 --> 00:08:51.240 mind when he said that? In one sense, I was relieved 00:08:51.240 --> 00:08:55.600 that I had a diagnosis and a care plan set in 00:08:55.600 --> 00:09:02.480 place. I'm very like results driven, but I was 00:09:02.480 --> 00:09:05.259 probably in a little bit of denial slash didn't 00:09:05.259 --> 00:09:10.179 fully understand what was coming or what that 00:09:10.179 --> 00:09:14.340 meant for me. I didn't fully understand how sick 00:09:14.340 --> 00:09:16.779 I was. I don't even know if I processed how truly 00:09:16.779 --> 00:09:20.159 sick I was until well after. I was, I would say 00:09:20.159 --> 00:09:22.480 like through it, like after my surgeries and 00:09:22.480 --> 00:09:26.179 stuff, you know, and, and I remember multiple 00:09:26.179 --> 00:09:28.519 people telling me like, well, at least you don't 00:09:28.519 --> 00:09:34.899 have cancer. You know, it's like, well, yeah, 00:09:35.139 --> 00:09:39.580 I mean, you're comparing apples and oranges here 00:09:39.580 --> 00:09:42.820 a little bit, you know, it's like, that was always 00:09:42.820 --> 00:09:45.639 like a confusing reaction or response for me. 00:09:45.679 --> 00:09:48.899 And I never knew like, what to say to it, or 00:09:48.899 --> 00:09:53.279 you would get things like, um, oh, wow, I need 00:09:53.279 --> 00:09:55.879 to, you know, I need to get what you have so 00:09:55.879 --> 00:09:58.940 I can lose the last like baby weight or, you 00:09:58.940 --> 00:10:01.620 know, people, people just say these like really 00:10:01.620 --> 00:10:04.159 wild things to you. And, and I think a lot because 00:10:04.159 --> 00:10:06.200 they don't know what to say, but you're trying 00:10:06.200 --> 00:10:08.779 to process what you're going through and understand 00:10:08.779 --> 00:10:12.480 it. And then you have people saying these ridiculous 00:10:12.480 --> 00:10:15.159 things to you, even though they, they mean well. 00:10:15.879 --> 00:10:19.240 It's an interesting place to sit at. Yeah, for 00:10:19.240 --> 00:10:22.340 sure. For sure, for sure. So you kind of gave 00:10:22.340 --> 00:10:26.220 it away. That diagnosis obviously was not the 00:10:26.220 --> 00:10:29.019 end of your IBD journey. You mentioned surgeries. 00:10:29.120 --> 00:10:30.840 That's eventually where you ended up. Can you 00:10:30.840 --> 00:10:33.879 basically take us through the timeline between 00:10:33.879 --> 00:10:37.159 your diagnosis and then where you are today? 00:10:37.899 --> 00:10:42.320 Did your GI start you off with just five ASAs, 00:10:42.419 --> 00:10:46.120 prednisone, biologics? Did he tell you, listen, 00:10:46.320 --> 00:10:48.379 the damage is so bad that we'll have to go to 00:10:48.379 --> 00:10:52.100 surgery right away? What was that path like from 00:10:52.100 --> 00:10:56.399 then to where you ended up surgery? So we're 00:10:56.399 --> 00:10:58.620 into November now. That was October. We're into 00:10:58.620 --> 00:11:01.820 November now. And he said, you know, there's 00:11:01.820 --> 00:11:04.659 this great drug. I'm going to put you on and 00:11:04.659 --> 00:11:09.389 it should work. And it was... azacol and i took 00:11:09.389 --> 00:11:12.210 it for about three days and i thought wow like 00:11:12.210 --> 00:11:16.350 i'm getting so much relief and when i got hospitalized 00:11:16.350 --> 00:11:20.929 it got way worse i was in the hospital for like 00:11:20.929 --> 00:11:23.269 four or five days getting back on my feet and 00:11:23.269 --> 00:11:27.090 feeling good again from the um iv antibiotics 00:11:27.090 --> 00:11:32.929 and um they released me and they put me on lealda 00:11:32.929 --> 00:11:39.059 and Same thing happened. I was on it for like 00:11:39.059 --> 00:11:43.460 three, four days and then got hospitalized again, 00:11:43.559 --> 00:11:48.159 spent Thanksgiving in the hospital. And they 00:11:48.159 --> 00:11:53.059 realized that I probably had a mesalamine allergy 00:11:53.059 --> 00:11:58.820 and the drug wasn't going to work. And they just 00:11:58.820 --> 00:12:07.409 pumped up the prednisone. So the GI issues, actually 00:12:07.409 --> 00:12:10.610 felt, I felt pretty good. And I went on a really 00:12:10.610 --> 00:12:14.049 strict diet and, uh, you know, at one point I 00:12:14.049 --> 00:12:16.429 was up to like 70 milligrams a day or something 00:12:16.429 --> 00:12:18.850 like that of prednisone. It was a lot. So it's 00:12:18.850 --> 00:12:20.809 like, my belly's feeling great, but you're getting 00:12:20.809 --> 00:12:23.470 joint pain. You're not sleeping well. You know, 00:12:23.470 --> 00:12:27.009 my face, I was so thin from being sick, but my 00:12:27.009 --> 00:12:29.389 face looked like you put a pin in and I would 00:12:29.389 --> 00:12:33.289 just like pop like a balloon, you know? And, 00:12:33.570 --> 00:12:37.830 uh, Then I just kept having flares. Then it got 00:12:37.830 --> 00:12:39.330 to a point where the prednisone wasn't really 00:12:39.330 --> 00:12:41.990 working anymore. And my doctor was like, we can't 00:12:41.990 --> 00:12:45.830 put you on more prednisone. You're like maxing 00:12:45.830 --> 00:12:49.070 out at this point. So we started Remicade and 00:12:49.070 --> 00:12:54.090 it was working really well for a while or so 00:12:54.090 --> 00:12:57.110 I thought. And then it seemed like my symptoms 00:12:57.110 --> 00:12:58.830 were starting to flare up again. So along with 00:12:58.830 --> 00:13:01.590 the Remicade, he went old school and prescribed 00:13:01.590 --> 00:13:06.649 me sulfur drugs. around June of that year. And 00:13:06.649 --> 00:13:09.149 I thought I was doing really well. And I had 00:13:09.149 --> 00:13:12.570 gone back home to visit my parents again. And 00:13:12.570 --> 00:13:15.029 I woke up one morning and I called my mom at 00:13:15.029 --> 00:13:17.750 work and I said, you've got to, you have to come 00:13:17.750 --> 00:13:22.789 home. Like something is severely wrong. And my 00:13:22.789 --> 00:13:24.710 parents live in Southern Illinois. So I was about 00:13:24.710 --> 00:13:27.029 five, six hours away from my doctor. So I called 00:13:27.029 --> 00:13:28.610 my, cause there was no way I was going to be 00:13:28.610 --> 00:13:31.360 able to ride in the car for that long. And so 00:13:31.360 --> 00:13:34.820 I called my doctor. I said, you know, I'm six 00:13:34.820 --> 00:13:40.240 hours away. What do I do? And he said, go to 00:13:40.240 --> 00:13:44.000 St. Louis. So we load up in the car. We go there. 00:13:44.580 --> 00:13:48.259 I stayed there for four or five nights. And I 00:13:48.259 --> 00:13:52.779 basically begged them to let me out and let me 00:13:52.779 --> 00:13:56.460 go home because I had been waiting to get into 00:13:56.460 --> 00:14:00.070 this doctor. actually in chicago i was out in 00:14:00.070 --> 00:14:01.929 the suburbs and i had an appointment that i'd 00:14:01.929 --> 00:14:04.610 been calling to try to see this doctor and get 00:14:04.610 --> 00:14:08.549 in and i said i have this appointment coming 00:14:08.549 --> 00:14:13.309 up will you please let me go so that i can go 00:14:13.309 --> 00:14:15.669 to this appointment and they released me from 00:14:15.669 --> 00:14:18.309 the hospital and said yes that's actually a better 00:14:18.309 --> 00:14:20.610 place for you to be if you can get in there that's 00:14:20.610 --> 00:14:25.919 great And so they released me the next day and 00:14:25.919 --> 00:14:29.080 I went straight from the hospital to my doctor 00:14:29.080 --> 00:14:35.039 and told him what was going on. And I got a lovely 00:14:35.039 --> 00:14:38.460 rush hour ambulance ride from my doctor out in 00:14:38.460 --> 00:14:43.399 the suburbs to the hospital in the city that 00:14:43.399 --> 00:14:46.879 I was wanting to, that I was trying to get into 00:14:46.879 --> 00:14:48.980 and was supposed to go to the following week. 00:14:50.539 --> 00:14:56.000 And they admitted me into the hospital. And I 00:14:56.000 --> 00:14:59.919 got a lovely 31 -day stay after that. I got the 00:14:59.919 --> 00:15:03.679 entire month of August and some of September 00:15:03.679 --> 00:15:09.840 in this hospital where I was no longer eating. 00:15:09.919 --> 00:15:17.720 I was being fed by IV. I got my sixth colonoscopy 00:15:17.720 --> 00:15:21.720 in one year. with a nice display you know it 00:15:21.720 --> 00:15:23.980 was a teaching hospital also so I had like six 00:15:23.980 --> 00:15:27.240 med students a fellow the doctor the you know 00:15:27.240 --> 00:15:30.600 had a whole audience for that it was wonderful 00:15:30.600 --> 00:15:36.600 and uh they I got a little bout of c -diff on 00:15:36.600 --> 00:15:39.360 my hospital stay and had an accident getting 00:15:39.360 --> 00:15:42.039 tangled up in my wires trying to get out of bed 00:15:42.039 --> 00:15:45.519 in front of like six people in my room and so 00:15:45.519 --> 00:15:49.769 I had an MRI trying to figure out first make 00:15:49.769 --> 00:15:52.309 sure it's not Crohn's, figure out what to do 00:15:52.309 --> 00:15:56.610 with me. Um, I had during my MRI, they did like 00:15:56.610 --> 00:15:59.789 a whole ink contrast thing and my IV blew out. 00:15:59.909 --> 00:16:02.990 Ink went all over my face and my hair was in 00:16:02.990 --> 00:16:09.309 the tube. Like it was just rough. Yeah. And, 00:16:09.450 --> 00:16:16.230 uh, so my doctor came and talked to me on a Friday 00:16:16.230 --> 00:16:19.700 and he said, These are your options. I'm going 00:16:19.700 --> 00:16:23.059 to think about it over the weekend. One of them 00:16:23.059 --> 00:16:27.559 being cyclosporine or surgery. My doctor said, 00:16:27.600 --> 00:16:29.360 I'm going to think about you over the weekend. 00:16:29.500 --> 00:16:32.639 Let's talk on Monday. So he comes back on Monday. 00:16:32.679 --> 00:16:36.460 He sits down on my bed and he's just the loveliest 00:16:36.460 --> 00:16:41.409 man. gentle, soft -spoken, extremely caring, 00:16:41.629 --> 00:16:43.909 just excellent bedside manner. And he puts his 00:16:43.909 --> 00:16:46.970 hand on my leg as I'm laying there withering 00:16:46.970 --> 00:16:50.289 away. And he says, I've thought about you all 00:16:50.289 --> 00:16:55.090 weekend, nonstop. I just, you know, and I think 00:16:55.090 --> 00:16:58.309 the best option is surgery. And if you want to 00:16:58.309 --> 00:17:00.429 try the other things, I can try to get you into 00:17:00.429 --> 00:17:04.009 a case study. I can, you know, I'll do the cyclosporine 00:17:04.009 --> 00:17:07.029 for you. But I really think that surgery is, 00:17:07.880 --> 00:17:09.980 where we need to go. Sorry, I'm getting a little 00:17:09.980 --> 00:17:17.039 emotional. That was my worst fear and my biggest 00:17:17.039 --> 00:17:20.420 fear come true. Before I had gone to that doctor, 00:17:20.559 --> 00:17:22.519 like when this all started, my sister had gone 00:17:22.519 --> 00:17:25.559 to an appointment with me and with my original 00:17:25.559 --> 00:17:27.680 GI. And we'd gone through like, what's the worst 00:17:27.680 --> 00:17:30.460 case scenario? And of course, at that time, that 00:17:30.460 --> 00:17:33.400 surgery was it. And my sister laughed, just kind 00:17:33.400 --> 00:17:37.150 of. speaking in hyperbole and being silly, said 00:17:37.150 --> 00:17:39.710 to me, oh my God, Jamie, if you end up with a 00:17:39.710 --> 00:17:42.369 bag, you'll never get another date again. And 00:17:42.369 --> 00:17:45.950 of course, we didn't fully understand what that 00:17:45.950 --> 00:17:49.170 was. And she was just kind of being a silly big 00:17:49.170 --> 00:17:51.950 sister or whatever. And we never thought it would 00:17:51.950 --> 00:17:54.470 get to that either. But of course, now I'm laying 00:17:54.470 --> 00:17:58.849 there in that bed and I'm 25 and single and I'm... 00:17:59.629 --> 00:18:02.089 terrified and that's all I can hear is her voice 00:18:02.089 --> 00:18:04.670 in my head and of course when she found out that 00:18:04.670 --> 00:18:06.869 was what was happening she called me she said 00:18:06.869 --> 00:18:08.589 I instantly thought of that and I'm so sorry 00:18:08.589 --> 00:18:11.630 and I didn't mean it and it's not true and you 00:18:11.630 --> 00:18:14.150 know that I think the guilt was pretty high for 00:18:14.150 --> 00:18:18.089 her and Also, I knew the side effects of how 00:18:18.089 --> 00:18:21.069 that could impact like fertility or ability to, 00:18:21.069 --> 00:18:24.089 you know, conceive. And so that's racing through 00:18:24.089 --> 00:18:26.710 my mind at the time. I had always really wanted 00:18:26.710 --> 00:18:30.869 to be a mother. And so it's including all of 00:18:30.869 --> 00:18:33.609 those fears. And my parents at that time were 00:18:33.609 --> 00:18:35.509 taking turns staying in the hospital with me. 00:18:35.549 --> 00:18:38.890 And so my dad was with me that day. After the 00:18:38.890 --> 00:18:44.109 doctor left, he just sat down on my bed. on my 00:18:44.109 --> 00:18:46.950 hospital bed and he said we'll just cry together 00:18:46.950 --> 00:18:54.029 and that's what we did and uh I didn't know that 00:18:54.029 --> 00:18:55.990 day that that was going to be the best thing 00:18:55.990 --> 00:18:58.529 that ever happened to me but it really was it 00:18:58.529 --> 00:19:01.130 it saved my life and it gave me my life back 00:19:01.130 --> 00:19:04.730 um but it was really really scary in the moment 00:19:05.669 --> 00:19:08.910 Yeah, I can imagine. And what a journey, by the 00:19:08.910 --> 00:19:11.670 way. I mean, you basically covered a period of 00:19:11.670 --> 00:19:14.750 one, one and a half years and going through so 00:19:14.750 --> 00:19:18.029 much. It sounds like you were basically on the 00:19:18.029 --> 00:19:20.990 edge nonstop, right? Between periods of feeling 00:19:20.990 --> 00:19:22.730 okay, but then again, landing in the hospital. 00:19:22.789 --> 00:19:26.410 So it was a back and forth. Now, after all of 00:19:26.410 --> 00:19:32.950 this, today, how are you feeling? And, you know, 00:19:33.029 --> 00:19:35.660 I... I think you have a J -pouch now, right? 00:19:35.799 --> 00:19:41.619 So tell me, what is life like with that? And 00:19:41.619 --> 00:19:44.059 how are you feeling? They did it in a three -step 00:19:44.059 --> 00:19:47.099 process because I was so sick. And so in the 00:19:47.099 --> 00:19:50.220 first surgery, they removed my colon and created 00:19:50.220 --> 00:19:53.180 an ileostomy. And so I still had to be really 00:19:53.180 --> 00:19:55.299 careful about what I was eating and letting that 00:19:55.299 --> 00:19:59.000 heal and learning how to take care of my ostomy. 00:20:00.410 --> 00:20:02.230 You know, it's shocking to see your stoma for 00:20:02.230 --> 00:20:05.230 the first few times and all of that. So that 00:20:05.230 --> 00:20:07.309 all happened in that August, September timeframe. 00:20:07.509 --> 00:20:11.849 And then in the following April of 2010, they 00:20:11.849 --> 00:20:15.569 removed the rectum, created a J pouch and a loop 00:20:15.569 --> 00:20:18.589 ostomy. And again, I had to go back to the strict 00:20:18.589 --> 00:20:21.829 diet and letting it heal. But during that time, 00:20:21.849 --> 00:20:24.230 I wasn't taking any medication, just vitamins. 00:20:25.980 --> 00:20:28.420 Just kind of letting my body, focusing on gaining 00:20:28.420 --> 00:20:33.380 weight, letting my body heal and making sure 00:20:33.380 --> 00:20:37.119 that I was strong enough for each step. And a 00:20:37.119 --> 00:20:39.039 lot of doctor's appointments, a lot of tears 00:20:39.039 --> 00:20:43.880 still. And then in July 2010, I had my ostomy 00:20:43.880 --> 00:20:48.539 takedown. And since then, I haven't been on medication 00:20:48.539 --> 00:20:51.910 other than, you know, I've had some. bouts of 00:20:51.910 --> 00:20:54.589 pouchitis here and there and you take antibiotics 00:20:54.589 --> 00:20:58.490 for it but I have really learned my body I've 00:20:58.490 --> 00:21:01.890 learned how to take care of myself and how to 00:21:01.890 --> 00:21:08.609 monitor a lot with diet and it just it's it I 00:21:08.609 --> 00:21:11.150 just keep saying it but it saved my life it gave 00:21:11.150 --> 00:21:15.769 me my life back I I mean I can even eat obviously 00:21:15.769 --> 00:21:19.950 in moderation but salad nuts popcorn doesn't 00:21:19.950 --> 00:21:24.490 bother me like I am just so incredibly lucky 00:21:24.490 --> 00:21:30.130 to wake up most days and feel really good. You 00:21:30.130 --> 00:21:33.029 know, you have to factor in dehydration. That's 00:21:33.029 --> 00:21:36.890 an issue with a pouch. And so monitoring that, 00:21:37.049 --> 00:21:41.710 I was able to have children. I had two. The first 00:21:41.710 --> 00:21:45.630 one, I had to work with a fertility doctor and 00:21:45.630 --> 00:21:50.029 we did four rounds of IUI to conceive him. hormones 00:21:50.029 --> 00:21:53.369 from pregnancy and postpartum definitely have 00:21:53.369 --> 00:21:56.269 had an impact. And I have kind of been in a state 00:21:56.269 --> 00:22:00.190 of chronic inflammation since then with my pouch 00:22:00.190 --> 00:22:02.410 that I'm still currently working through. I just 00:22:02.410 --> 00:22:06.910 had another baby in January. She was a surprise, 00:22:07.130 --> 00:22:11.950 but a wonderful blessing. We just didn't think 00:22:11.950 --> 00:22:14.150 that was an option for us after everything we 00:22:14.150 --> 00:22:19.730 had gone through to conceive our son. you know, 00:22:19.730 --> 00:22:23.430 we're kind of back with the stress that puts 00:22:23.430 --> 00:22:25.710 on your body and the hormone changes and everything 00:22:25.710 --> 00:22:28.230 where, you know, I'm working with my current 00:22:28.230 --> 00:22:32.009 GI on trying to figure out what the best plan 00:22:32.009 --> 00:22:34.670 of action is to, to kind of reel that back in. 00:22:34.730 --> 00:22:39.289 And for pouchitis, we, you know, it's Cipro used 00:22:39.289 --> 00:22:41.569 to be my go -to and that's kind of run its course 00:22:41.569 --> 00:22:45.730 where I started having more negative side effects 00:22:45.730 --> 00:22:49.049 than the the benefits and so we've moved on to 00:22:49.049 --> 00:22:51.329 other things like you know we've done the rectal 00:22:51.329 --> 00:22:54.049 foams and the suppositories and all the other 00:22:54.049 --> 00:22:58.269 fun things and medications that come with um 00:22:58.269 --> 00:23:02.170 the trade -off you know um but we're we're figuring 00:23:02.170 --> 00:23:06.609 it out and i also take a probiotic every day 00:23:06.609 --> 00:23:11.369 um that i have found to be really helpful so 00:23:11.369 --> 00:23:14.619 happy ending More or less, regardless, based 00:23:14.619 --> 00:23:17.279 on what you want. And I want to, before we move 00:23:17.279 --> 00:23:19.599 on, I want to very quickly go back. So a lot 00:23:19.599 --> 00:23:21.839 of people or most people are familiar with ostomy, 00:23:21.960 --> 00:23:25.460 but today you have a J pouch. You and I were 00:23:25.460 --> 00:23:27.960 not doctors, but could you very briefly explain 00:23:27.960 --> 00:23:32.099 to our audience this concept of a J pouch versus 00:23:32.099 --> 00:23:37.180 an ostomy? Sure. So an ostomy is what most people 00:23:37.180 --> 00:23:39.539 are familiar with. It's a bag on the outside 00:23:39.539 --> 00:23:44.799 of your body that you use. for exit, I guess. 00:23:44.819 --> 00:23:49.539 Is that the polite way to say it? And then... 00:23:49.819 --> 00:23:54.099 A J -pouch is basically that internally. So you 00:23:54.099 --> 00:23:57.559 don't have the medical devices and the actual 00:23:57.559 --> 00:24:00.180 physical bag. They take the first part of your 00:24:00.180 --> 00:24:03.259 small bowel and they create what they call a 00:24:03.259 --> 00:24:08.500 J -pouch and essentially create a new rectum 00:24:08.500 --> 00:24:11.940 or reservoir for you. They have to leave a small 00:24:11.940 --> 00:24:15.019 cuff of your rectum because they need something 00:24:15.019 --> 00:24:21.809 to stitch or staple to. then you just learn how 00:24:21.809 --> 00:24:26.250 to reuse your body again, which can be an interesting 00:24:26.250 --> 00:24:32.130 experience. You go traditionally the way you 00:24:32.130 --> 00:24:36.329 would have before having the external bag, but 00:24:36.329 --> 00:24:41.529 you have to change your expectations a bit. It's 00:24:41.529 --> 00:24:43.990 not the way you remember it before you're... 00:24:45.690 --> 00:24:49.450 before your colon is removed but you you know 00:24:49.450 --> 00:24:54.230 a modium can can be your best friend helps and 00:24:54.230 --> 00:24:58.369 just making sure that you're watching your diet 00:24:58.369 --> 00:25:01.529 in different ways than you did with like with 00:25:01.529 --> 00:25:04.529 a uc flare so i had to watch my diet to not um 00:25:04.529 --> 00:25:08.309 irritate the ulcers now i watch my diet to make 00:25:08.309 --> 00:25:11.869 sure that I'm not dehydrating myself and flushing 00:25:11.869 --> 00:25:15.650 my system because you don't have all the things 00:25:15.650 --> 00:25:19.670 in your colon you need to make it make your output 00:25:19.670 --> 00:25:23.690 more formed and you're missing the key bacterias 00:25:23.690 --> 00:25:26.170 and all the good things that are in the colon 00:25:26.170 --> 00:25:31.569 and so it's a lot of carb loading it's a lot 00:25:31.569 --> 00:25:36.460 of It helps to avoid foods that do create more 00:25:36.460 --> 00:25:38.880 gas, drinking through a straw, even though I 00:25:38.880 --> 00:25:42.079 personally choose to still use straws and do 00:25:42.079 --> 00:25:43.740 some of those things, knowing the consequences 00:25:43.740 --> 00:25:46.160 or knowing how to balance it. And a lot of it 00:25:46.160 --> 00:25:50.380 is just learning your body after that. So for 00:25:50.380 --> 00:25:54.000 me, I avoid caffeine because I know that's just 00:25:54.000 --> 00:25:59.839 an unnecessary obstacle for me. Um, but then, 00:25:59.839 --> 00:26:02.799 you know, like I said, I'll have salad or popcorn 00:26:02.799 --> 00:26:04.940 knowing that I might have to balance that out 00:26:04.940 --> 00:26:07.839 a little bit later with eating a sandwich or, 00:26:07.900 --> 00:26:10.680 um, I can't even tell you the, I've probably 00:26:10.680 --> 00:26:13.019 eaten my weight plus some pretzels over the last 00:26:13.019 --> 00:26:16.980 15 years. That's just a really easy, quick go 00:26:16.980 --> 00:26:20.480 -to food or snack for me when I know that I need 00:26:20.480 --> 00:26:26.039 to thicken up output and get myself back on track. 00:26:27.659 --> 00:26:31.119 So a lot of trade -offs. And I think the message 00:26:31.119 --> 00:26:33.500 here is clear because there's a general misconception 00:26:33.500 --> 00:26:37.440 around surgery or on ostomy. And I think also 00:26:37.440 --> 00:26:40.000 Jay Pouch that, hey, they take the colon out 00:26:40.000 --> 00:26:44.980 and I am cured, right? However, in a way, yes, 00:26:45.079 --> 00:26:49.019 but in another way, no. So based on what I'm 00:26:49.019 --> 00:26:51.930 hearing here. Yes, you feel much better. Yes, 00:26:52.130 --> 00:26:54.369 you have had a lot more blessings coming your 00:26:54.369 --> 00:26:56.549 way ever since you've had the surgeries. However, 00:26:56.789 --> 00:27:00.349 your IBD journey does not end there, right? Yeah, 00:27:00.369 --> 00:27:03.250 it's definitely a trade -off, but I would choose 00:27:03.250 --> 00:27:08.130 this compared to how I was living or not living 00:27:08.130 --> 00:27:13.450 prior to surgery every single time. And it's 00:27:13.450 --> 00:27:16.970 just so much about educating yourself and understanding 00:27:16.970 --> 00:27:20.259 your body. learning your cues, knowing how to 00:27:20.259 --> 00:27:23.160 take care of yourself so that it doesn't get 00:27:23.160 --> 00:27:25.700 away from you. And I've, I have personally found 00:27:25.700 --> 00:27:30.660 it to be so much more manageable than what life 00:27:30.660 --> 00:27:33.759 was like with active UC. Now that's not to say 00:27:33.759 --> 00:27:37.279 that there was not a learning curve because there 00:27:37.279 --> 00:27:40.539 definitely was. And it was not an easy transition 00:27:40.539 --> 00:27:43.720 physically or emotionally going through having 00:27:43.720 --> 00:27:49.059 the bag and even transitioning. um from not having 00:27:49.059 --> 00:27:52.019 the external bag anymore and going to the jay 00:27:52.019 --> 00:27:54.000 pouch and like i said learning how to use your 00:27:54.000 --> 00:27:57.099 body again and like being paranoid about not 00:27:57.099 --> 00:28:00.019 having an accident or when i had the bag i would 00:28:00.019 --> 00:28:03.920 constantly ask my friends like i was so insecure 00:28:03.920 --> 00:28:06.960 that i was worried like that you could smell 00:28:06.960 --> 00:28:11.059 it or that you could see it or and also at that 00:28:11.059 --> 00:28:15.940 time there was not the positivity around having 00:28:15.940 --> 00:28:19.160 an ostomy or being open talking about these things 00:28:19.160 --> 00:28:21.500 like there is now like I get on Instagram now 00:28:21.500 --> 00:28:23.779 and I see these girls in their swimsuits and 00:28:23.779 --> 00:28:25.900 these adorable outfits with their bag out and 00:28:25.900 --> 00:28:30.339 I just think like it's so awesome it's so inspiring 00:28:30.339 --> 00:28:34.140 and I just was not in that place and I didn't 00:28:34.140 --> 00:28:40.700 have anyone to look to when I was in that place 00:28:40.700 --> 00:28:44.680 in my journey to like inspire me In connection 00:28:44.680 --> 00:28:47.339 to this, you mentioned that one of the good things 00:28:47.339 --> 00:28:50.019 that came out of this entire ordeal that you 00:28:50.019 --> 00:28:52.960 went through is that you learned a lot more about 00:28:52.960 --> 00:28:55.940 your body, a lot more conscience about your health. 00:28:56.440 --> 00:28:59.539 I always refer to it as a blessing and a curse, 00:28:59.680 --> 00:29:03.400 right? There's bad when we are at our worst, 00:29:03.500 --> 00:29:05.759 and then when we get better, either through surgery, 00:29:05.819 --> 00:29:08.000 through remission, there's a lot of good that 00:29:08.000 --> 00:29:11.359 comes from it. In your case, how do you relate 00:29:11.359 --> 00:29:14.000 to that thought of it being a blessing and a 00:29:14.000 --> 00:29:17.640 curse? And also your journey, how has it changed 00:29:17.640 --> 00:29:22.440 you as a person fundamentally? As far as the 00:29:22.440 --> 00:29:24.920 curse, that's pretty obvious. It's a rough journey. 00:29:25.019 --> 00:29:29.279 So, you know, it's self -explanatory. The blessing, 00:29:29.279 --> 00:29:32.180 though, I think it made me see how strong and 00:29:32.180 --> 00:29:36.319 capable I was in certain ways. I did find it. 00:29:36.589 --> 00:29:40.029 eventually to become empowering. It definitely 00:29:40.029 --> 00:29:43.009 taught me the importance of listening to your 00:29:43.009 --> 00:29:48.089 body, to your intuition. Even when you have doctors 00:29:48.089 --> 00:29:50.650 telling you certain things, advocate for yourself. 00:29:50.730 --> 00:29:55.480 I cannot stress that enough. advocate for yourself 00:29:55.480 --> 00:29:58.519 if you feel something is wrong something is off 00:29:58.519 --> 00:30:01.539 because i had my main doctors i had really incredible 00:30:01.539 --> 00:30:04.640 care but i've met er doctors along the way when 00:30:04.640 --> 00:30:06.940 i've been in you know when i've had a bump along 00:30:06.940 --> 00:30:09.059 the way on a weekend or in the middle of the 00:30:09.059 --> 00:30:11.740 night or whatever you know or an urgent care 00:30:11.740 --> 00:30:16.720 doctor that you advocate for yourself and feel 00:30:16.720 --> 00:30:21.240 strong in your voice and share your story Because 00:30:21.240 --> 00:30:25.279 it's not something to be embarrassed of or feel 00:30:25.279 --> 00:30:29.400 shame about. It's unfortunately a very common 00:30:29.400 --> 00:30:33.359 issue for a lot more people than we realize. 00:30:33.460 --> 00:30:36.160 And I think it's so important that we stick together 00:30:36.160 --> 00:30:41.240 and we support each other. And there's just so 00:30:41.240 --> 00:30:43.700 much healing in that. And I think that's some 00:30:43.700 --> 00:30:47.980 of the blessing is the community that you can 00:30:47.980 --> 00:30:50.200 find in it, that you don't have to suffer alone. 00:30:50.750 --> 00:30:52.710 Absolutely. And you hit the nail on the head. 00:30:52.829 --> 00:30:56.769 This is exactly my main point as well. I always 00:30:56.769 --> 00:30:59.910 say, put your foot down, speak up for yourselves. 00:31:00.890 --> 00:31:04.089 Not every doctor is equal. Not every doctor, 00:31:04.109 --> 00:31:07.369 not even every GI is a colitis, Crohn's or IBD 00:31:07.369 --> 00:31:09.930 specialist. You need somebody who is proactive. 00:31:10.049 --> 00:31:12.549 And if you feel that they're not proactive enough, 00:31:12.769 --> 00:31:17.200 just be relentless. Because somebody out there 00:31:17.200 --> 00:31:19.420 will listen to you. And sometimes it takes a 00:31:19.420 --> 00:31:21.500 little bit of time to sort of be paired or matched 00:31:21.500 --> 00:31:24.900 with that person, that GI that really, you know, 00:31:24.900 --> 00:31:29.440 works in your favor. But I think more commonly 00:31:29.440 --> 00:31:31.599 what I'm seeing is Crohn's and colitis. This 00:31:31.599 --> 00:31:34.180 is not something that you want to lose time over 00:31:34.180 --> 00:31:38.119 because of a lack of productivity from a physician, 00:31:38.339 --> 00:31:41.619 right? I mean, we just don't have that time to 00:31:41.619 --> 00:31:44.970 waste sometimes. So, you know. To paraphrase 00:31:44.970 --> 00:31:47.609 your words, speak up. Absolutely. I think this 00:31:47.609 --> 00:31:49.349 is like one of the most crucial things. Absolutely. 00:31:49.769 --> 00:31:55.049 So you've learned a lot during these turbulent 00:31:55.049 --> 00:32:00.309 years. If you could go back now to when you first 00:32:00.309 --> 00:32:02.529 diagnosed, what are some of the things that you 00:32:02.529 --> 00:32:05.970 wish you had known back then that you've picked 00:32:05.970 --> 00:32:10.990 up along your journey? It's bad or it's hard. 00:32:11.789 --> 00:32:15.450 But it's not as awful or scary as I thought. 00:32:15.589 --> 00:32:18.750 I think especially around the surgery piece. 00:32:19.069 --> 00:32:25.930 To not hide away in my room or feel sorry for 00:32:25.930 --> 00:32:29.509 myself or feel sad. I missed out on opportunities 00:32:29.509 --> 00:32:32.809 with my friends. Maybe I should have gone ahead 00:32:32.809 --> 00:32:37.119 and gone to dinner and just... not eaten or just, 00:32:37.180 --> 00:32:39.779 you know, enjoyed the being with my friends aspect 00:32:39.779 --> 00:32:42.440 of it instead of completely sitting at home alone 00:32:42.440 --> 00:32:44.279 while they were all out making memories together. 00:32:44.460 --> 00:32:47.759 Like don't stop living your life because of it. 00:32:47.940 --> 00:32:50.140 Don't hide away at home. And, you know, sometimes 00:32:50.140 --> 00:32:53.240 we have to hide away at home and we can't go 00:32:53.240 --> 00:32:55.859 too far from the bathroom. And some days are 00:32:55.859 --> 00:32:58.539 just like that and that's okay. But the days 00:32:58.539 --> 00:33:01.990 that are not like that don't continue. to hide 00:33:01.990 --> 00:33:04.930 away. If there's something you want to do, people 00:33:04.930 --> 00:33:06.789 you want to see, memories you want to make, an 00:33:06.789 --> 00:33:10.670 adventure you want to go on, do it. Don't let 00:33:10.670 --> 00:33:15.509 it stop you. It's not a death sentence. You don't 00:33:15.509 --> 00:33:21.109 have to hide away. I wish when I first started 00:33:21.109 --> 00:33:24.849 feeling some of these things and instinctually 00:33:24.849 --> 00:33:28.329 knew that something was off, that I would have 00:33:28.329 --> 00:33:32.970 sought help then. And the journey still would 00:33:32.970 --> 00:33:35.509 have been hard, but maybe it didn't have to be 00:33:35.509 --> 00:33:41.289 as hard as mine was because I was so sick by 00:33:41.289 --> 00:33:44.410 the time that I got diagnosed. Yeah, absolutely. 00:33:44.730 --> 00:33:47.769 Absolutely. There's no shame in heading to the 00:33:47.769 --> 00:33:50.670 doctor or the urgent care or emergency room right 00:33:50.670 --> 00:33:53.269 away. So these are all very valuable tips. And 00:33:53.269 --> 00:33:56.599 thank you for sharing that. One of the reasons 00:33:56.599 --> 00:33:59.940 why I started this podcast is to, first of all, 00:33:59.940 --> 00:34:02.839 raise awareness, but also sort of build out a 00:34:02.839 --> 00:34:05.039 platform for people who have questions, who might 00:34:05.039 --> 00:34:07.319 feel alone, who don't have all the answers, who 00:34:07.319 --> 00:34:10.039 might be embarrassed to ask their doctor, friends 00:34:10.039 --> 00:34:14.039 and family. And you are also doing your part. 00:34:14.179 --> 00:34:18.420 And in your case, you told me you released a 00:34:18.420 --> 00:34:22.840 journal and a guide titled Rooted and Resilient. 00:34:23.519 --> 00:34:26.920 that could be beneficial to people who were recently 00:34:26.920 --> 00:34:29.139 diagnosed. Can you tell us a little bit more 00:34:29.139 --> 00:34:31.960 about Rooted and Resilient, where the idea come 00:34:31.960 --> 00:34:34.400 from and what it is exactly and how it can benefit 00:34:34.400 --> 00:34:39.480 people with IBD? Sure. I always had a goal of 00:34:39.480 --> 00:34:42.139 writing a book. That was the original plan. I 00:34:42.139 --> 00:34:45.280 wanted to write a book kind of like a memoir 00:34:45.280 --> 00:34:49.800 of my journey because I was so lonely going through 00:34:49.800 --> 00:34:52.960 my journey. And at that time, the only thing 00:34:52.960 --> 00:34:57.219 I could find was medical journals, articles. 00:34:57.960 --> 00:35:00.300 And there wasn't anything out there that was 00:35:00.300 --> 00:35:02.679 just like, hey, this sucks. But like there's 00:35:02.679 --> 00:35:04.500 a light at the end of the tunnel. You can do 00:35:04.500 --> 00:35:06.619 this. You can get through this. You're not alone. 00:35:06.840 --> 00:35:09.219 You're not the only one going through it. Just 00:35:09.219 --> 00:35:12.840 that isolation that I felt. And so I did start 00:35:12.840 --> 00:35:16.679 writing a book just kind of as my own therapy. 00:35:16.760 --> 00:35:20.300 And then I decided. I didn't actually want to 00:35:20.300 --> 00:35:22.539 share it because by the time I got to a point 00:35:22.539 --> 00:35:26.199 where I felt like it was potentially ready or 00:35:26.199 --> 00:35:29.300 could be shared, I wasn't that person anymore. 00:35:29.420 --> 00:35:33.599 I had come so far and I had healed so much that 00:35:33.599 --> 00:35:37.940 when I read it, I felt really sorry for that 00:35:37.940 --> 00:35:43.420 girl when I reread it because I had grown so 00:35:43.420 --> 00:35:47.139 much and I had come so far in my journey and 00:35:47.789 --> 00:35:52.130 I felt like she was just a little too sad to 00:35:52.130 --> 00:35:57.510 release on the world, you know? And so I took 00:35:57.510 --> 00:36:00.769 the important pieces of that and instead I shifted 00:36:00.769 --> 00:36:03.829 it and tried to turn it into more of a guide 00:36:03.829 --> 00:36:08.670 and a journal or resource that I wish I had on 00:36:08.670 --> 00:36:13.550 my journey to make it easier. And so, you know, 00:36:13.550 --> 00:36:18.920 there's... some food ideas in there and there's 00:36:18.920 --> 00:36:21.820 a section on if you do end up with an ostomy 00:36:21.820 --> 00:36:24.420 how to hide or dress for it if you're someone 00:36:24.420 --> 00:36:27.480 who is in a place like i was that wasn't ready 00:36:27.480 --> 00:36:30.659 to show it to the world yet and i think that's 00:36:30.659 --> 00:36:34.760 super awesome for the people who do and and i 00:36:34.760 --> 00:36:38.519 i wish that i had that inspiration when i was 00:36:38.519 --> 00:36:41.179 going through it but i also know how i personally 00:36:41.179 --> 00:36:45.960 felt about mine so for anyone who hasn't arrived 00:36:45.960 --> 00:36:49.840 to that boldness and that empowerment yet here 00:36:49.840 --> 00:36:52.280 a little like here's some tips and tricks that 00:36:52.280 --> 00:36:55.519 I found to help me along the way as I was learning 00:36:55.519 --> 00:37:00.719 to to love it and appreciate my ostomy and this 00:37:00.719 --> 00:37:03.800 new version of myself so that's in there and 00:37:03.800 --> 00:37:07.219 then a big chunk of it is the journal section, 00:37:07.400 --> 00:37:11.800 which has a BM tracker on it, a place for you 00:37:11.800 --> 00:37:15.880 to write down your meals and track your medications. 00:37:16.059 --> 00:37:19.880 And I try to include a large mental health piece. 00:37:19.960 --> 00:37:22.719 So a place to write an affirmation every day 00:37:22.719 --> 00:37:25.099 and focus on like, what are you doing for yourself 00:37:25.099 --> 00:37:26.960 to make yourself feel better? Whether that's 00:37:27.440 --> 00:37:30.860 Physically, emotionally, spiritually, what is 00:37:30.860 --> 00:37:33.079 something that triggered you today? Maybe emotionally 00:37:33.079 --> 00:37:35.599 triggered you and caused stress, or maybe it 00:37:35.599 --> 00:37:38.920 was a physical trigger symptom. And then a place 00:37:38.920 --> 00:37:40.980 for what brought you joy today? Because I think 00:37:40.980 --> 00:37:45.019 it's so important to have that gratitude and 00:37:45.019 --> 00:37:47.579 highlight even when you are like, I need to go 00:37:47.579 --> 00:37:50.139 to bed. I need this day to be over. This day 00:37:50.139 --> 00:37:54.559 straight up just sucked. It's very important 00:37:54.559 --> 00:37:59.869 to not get sucked into that. and find the the 00:37:59.869 --> 00:38:03.369 small joys in the day even if it's just that 00:38:03.369 --> 00:38:07.710 you got out of bed today if that is the only 00:38:07.710 --> 00:38:10.170 thing that you were able to accomplish that day 00:38:11.659 --> 00:38:14.500 that's worth celebrating. It's a big deal, you 00:38:14.500 --> 00:38:17.139 know, or you left the house, you went on an errand 00:38:17.139 --> 00:38:19.400 by yourself, depending on where you're at in 00:38:19.400 --> 00:38:21.440 your journey. Or, you know, maybe you went to 00:38:21.440 --> 00:38:23.960 a concert you really wanted to go to, whatever 00:38:23.960 --> 00:38:27.360 it is, that's your joy or your accomplishment 00:38:27.360 --> 00:38:29.599 for that day. I think it's really important to 00:38:29.599 --> 00:38:32.440 highlight that and celebrate that. And that looks 00:38:32.440 --> 00:38:34.920 different for everybody. And that's okay. So 00:38:34.920 --> 00:38:39.380 that's the goal. And I told my friends and family 00:38:39.380 --> 00:38:42.099 when i wrote it that you know if it only reaches 00:38:42.099 --> 00:38:45.340 one person but it helps them then i'm i'm happy 00:38:45.340 --> 00:38:48.500 with that that's exactly the attitude to have 00:38:48.500 --> 00:38:52.420 and i gotta tell you which is which is great 00:38:52.420 --> 00:38:54.219 and i hope it will continue to reach a lot of 00:38:54.219 --> 00:38:58.059 people and i i now hearing you talk about i wish 00:38:58.480 --> 00:39:00.739 I had something like that because when I go back, 00:39:00.880 --> 00:39:04.460 this was in 2013, basically my journal consists 00:39:04.460 --> 00:39:07.139 of just email exchanges between me and my medical 00:39:07.139 --> 00:39:09.440 team and most of them are just very depressing. 00:39:09.820 --> 00:39:13.760 So, you know, so basically my good moments or 00:39:13.760 --> 00:39:15.559 the small wins, the small victories that you 00:39:15.559 --> 00:39:18.139 touched on, I mean, they're luckily stored in 00:39:18.139 --> 00:39:20.880 my memory as best as I can remember them. But 00:39:20.880 --> 00:39:22.579 this is a great initiative. And where can people 00:39:22.579 --> 00:39:27.150 find this, purchase this? It's on Amazon. Well, 00:39:27.150 --> 00:39:29.809 the original and then there's, if you like the 00:39:29.809 --> 00:39:32.150 journal pages, there's a companion guide that's 00:39:32.150 --> 00:39:35.070 really just the journal. There's a little bit 00:39:35.070 --> 00:39:36.550 of other stuff in it, but it's really focused 00:39:36.550 --> 00:39:39.889 on just the journal pages. And it's three months 00:39:39.889 --> 00:39:43.090 instead of one month. So that's not too overwhelming. 00:39:43.809 --> 00:39:47.130 But yeah, they're both listed on there. And please 00:39:47.130 --> 00:39:50.610 go free check them out. I hope that it, I hope 00:39:50.610 --> 00:39:54.329 it helps someone. That's really the goal. Absolutely. 00:39:54.389 --> 00:39:57.969 And we will put the link to both of those editions 00:39:57.969 --> 00:40:00.909 in the show notes as well for ease of use. So 00:40:00.909 --> 00:40:03.369 Jamie, I want to thank you so much for being 00:40:03.369 --> 00:40:05.829 with us today and sharing your journey. I really 00:40:05.829 --> 00:40:09.550 do admire your resilience, especially through 00:40:09.550 --> 00:40:13.480 those years of... you know, hospital stays and 00:40:13.480 --> 00:40:17.739 flares and uncertainty. I wish you nothing but 00:40:17.739 --> 00:40:20.860 the best moving forward with your J -Pouch and 00:40:20.860 --> 00:40:23.579 with your family and all the blessings that you've 00:40:23.579 --> 00:40:25.920 sort of picked up during your journey. And I 00:40:25.920 --> 00:40:29.219 want to just thank you again for being here with 00:40:29.219 --> 00:40:31.800 us today. Thank you. Thank you for having me. 00:40:32.559 --> 00:40:35.519 That's it for today's episode of Colitis Unfiltered. 00:40:35.940 --> 00:40:38.980 I'm Frank Klebring. And if this hit home or hit 00:40:38.980 --> 00:40:41.829 your gut, do us a favor. subscribe to the show 00:40:41.829 --> 00:40:44.949 and follow us at colitis unfiltered on youtube 00:40:44.949 --> 00:40:48.610 substack instagram threads tick tock and reddit 00:40:48.610 --> 00:40:51.050 we'll see you soon for more inspiring stories 00:40:51.050 --> 00:40:52.210 from the bathroom floor