WEBVTT 00:00:02.840 --> 00:00:05.280 Honestly, I wish surgery was on the table much 00:00:05.280 --> 00:00:09.560 earlier because my quality of life has, it's 00:00:09.560 --> 00:00:14.859 just been complete 180, right? Like, and I kind 00:00:14.859 --> 00:00:16.640 of wish that was something that was talked through 00:00:16.640 --> 00:00:19.120 in more detail. And it might have been that my 00:00:19.120 --> 00:00:21.100 consultant at the time could have said, look, 00:00:21.219 --> 00:00:23.760 these are all of the treatment options available 00:00:23.760 --> 00:00:27.039 for you. Obviously, as a young man. Or young 00:00:27.039 --> 00:00:29.640 individuals who are out there who are maybe looking 00:00:29.640 --> 00:00:32.560 at surgery. It is a big thing. It is life -changing. 00:00:32.740 --> 00:00:34.479 And I think that's quite key. It is life -changing. 00:00:34.840 --> 00:00:37.939 But my life changed for the better. So much better. 00:00:38.719 --> 00:00:41.039 I wish that had been put on the table earlier 00:00:41.039 --> 00:00:44.759 and sort of discussed through. This is Ent, who 00:00:44.759 --> 00:00:46.880 got diagnosed with ulcerative colitis at age 00:00:46.880 --> 00:00:50.640 19 in London. After struggling with IBD for years, 00:00:50.859 --> 00:00:52.960 Ent ultimately made the call to have surgery. 00:00:53.399 --> 00:00:55.829 Now living with a stoma, He's on a mission to 00:00:55.829 --> 00:00:58.289 challenge the fear and stigma around life with 00:00:58.289 --> 00:01:01.469 an ostomy. Today, he's telling us all about his 00:01:01.469 --> 00:01:04.469 colitis journey. This is Talking S***, presented 00:01:04.469 --> 00:01:07.049 by Colitis Unfiltered. My name is Frank Tavering, 00:01:07.049 --> 00:01:10.609 and welcome to the show. Thanks, Frank. Absolute 00:01:10.609 --> 00:01:13.129 pleasure to be here. Yeah, really looking forward 00:01:13.129 --> 00:01:15.329 to talking s***, as you said. So, yeah, it'll 00:01:15.329 --> 00:01:18.829 be great. So then let's talk shit and let's talk 00:01:18.829 --> 00:01:20.370 shit straight from the beginning. I always say, 00:01:20.390 --> 00:01:21.750 you know, the first question that I typically 00:01:21.750 --> 00:01:24.390 have, because why not start at the beginning? 00:01:24.629 --> 00:01:28.989 And that is symptoms, how your IBD journey started. 00:01:29.129 --> 00:01:31.750 Tell me a little bit about what that moment was 00:01:31.750 --> 00:01:33.709 like for you when you noticed that, hey, something 00:01:33.709 --> 00:01:38.170 is definitely wrong here. Wow, this is, well, 00:01:38.230 --> 00:01:40.799 I'll try and paint a picture. This was back in 00:01:40.799 --> 00:01:43.739 2008. So for some listeners, this was well before 00:01:43.739 --> 00:01:46.959 social media was a thing. Like Instagram wasn't 00:01:46.959 --> 00:01:50.180 really around. TikTok was just the noise that 00:01:50.180 --> 00:01:51.780 your clock made on the wall. It wasn't a thing 00:01:51.780 --> 00:01:58.480 at all. So back then, my symptoms were just really 00:01:58.480 --> 00:02:01.879 bad diarrhea to start with. I remember just sitting 00:02:01.879 --> 00:02:04.739 there being like, this isn't normal. Every time 00:02:04.739 --> 00:02:06.680 I go to the bathroom, I'm like... This is not 00:02:06.680 --> 00:02:09.340 great. And then the frequency just surged. I 00:02:09.340 --> 00:02:10.759 was going like a couple of times a day and then 00:02:10.759 --> 00:02:14.479 it surged to like 10, 15 times a day. Then passing 00:02:14.479 --> 00:02:18.539 blood came. Then the pain came. So, yeah, just 00:02:18.539 --> 00:02:22.039 those first sort of moments, if you will, I remember 00:02:22.039 --> 00:02:25.300 feeling like really worried, really quite frightened, 00:02:25.319 --> 00:02:28.520 like something's really not right. Yeah. And 00:02:28.520 --> 00:02:30.000 then going to doctors and they were just like, 00:02:30.099 --> 00:02:33.349 oh, yeah. it'll be fine. Like take your standard 00:02:33.349 --> 00:02:35.129 over the counter medication. You'll be okay. 00:02:35.849 --> 00:02:39.710 Um, yeah. And then fast forward to 2020, have 00:02:39.710 --> 00:02:42.449 my large colon removed. And now I'm, you know, 00:02:42.449 --> 00:02:45.050 publicly talking about shit and showing my, my 00:02:45.050 --> 00:02:48.889 stoma bag all the time. So, so yeah, that's, 00:02:48.889 --> 00:02:50.430 that's interesting. You said, so you went to 00:02:50.430 --> 00:02:52.729 the doctors and they say, take over. the counter 00:02:52.729 --> 00:02:55.530 medication was it just like a regular like a 00:02:55.530 --> 00:02:58.090 regular doctor did you really go to a gi like 00:02:58.090 --> 00:03:00.930 how did that evolve because 2008 like yes social 00:03:00.930 --> 00:03:03.849 media was not around but ibd was around right 00:03:03.849 --> 00:03:06.930 or at least you think so so how did that develop 00:03:06.930 --> 00:03:10.349 and evolve so it was uh i was at university at 00:03:10.349 --> 00:03:13.069 the time um and i just started as well and i 00:03:13.069 --> 00:03:17.349 wasn't feeling great and then it was sort of 00:03:17.349 --> 00:03:21.080 christmas time where i Kept going to the university 00:03:21.080 --> 00:03:24.599 doctor, which is like a pharmacist. And they 00:03:24.599 --> 00:03:28.719 were like, yeah, have some just standard, like 00:03:28.719 --> 00:03:30.939 we call it Imodium in the UK, like just standard 00:03:30.939 --> 00:03:33.360 medication. And hopefully that should clear. 00:03:34.000 --> 00:03:36.719 It's just a bad bout of diarrhea. Plus being 00:03:36.719 --> 00:03:39.520 a university student, my diet wasn't exactly 00:03:39.520 --> 00:03:42.319 great, probably too much alcohol and partying. 00:03:42.340 --> 00:03:43.960 So I thought that's what it will be. It'll calm 00:03:43.960 --> 00:03:46.840 down. And then it went on and on and on. When 00:03:46.840 --> 00:03:49.719 I got to, I went home in December for Christmas 00:03:49.719 --> 00:03:53.840 time and I went to my local GP where I live, 00:03:53.879 --> 00:03:56.860 like a proper doctor. And he said the same thing, 00:03:56.879 --> 00:03:59.120 like, look, let's just take it step by step. 00:03:59.580 --> 00:04:02.479 But everything seems to be okay. I then came 00:04:02.479 --> 00:04:07.599 back in Easter time and went back to my GP and 00:04:07.599 --> 00:04:09.680 said, nothing's changed. And they were like, 00:04:09.780 --> 00:04:11.879 right, we'll do some stool samples, we'll do 00:04:11.879 --> 00:04:14.199 some tests. But yeah, after doing all those tests, 00:04:14.280 --> 00:04:16.959 they said nothing was wrong. And that was a bit 00:04:16.959 --> 00:04:18.720 for me that I was like, this doesn't make sense. 00:04:19.439 --> 00:04:21.420 You can see, you can clearly see something's 00:04:21.420 --> 00:04:23.199 wrong. Like, you know, I'm in pain. I'm passing 00:04:23.199 --> 00:04:26.120 blood. This can't be normal results. And they 00:04:26.120 --> 00:04:29.000 said, look, there's nothing more. We can either 00:04:29.000 --> 00:04:32.439 look at changing your food or your diet, like 00:04:32.439 --> 00:04:35.480 maybe tweaking that, but there's not really much 00:04:35.480 --> 00:04:37.040 else we could do. We can try and refer you to 00:04:37.040 --> 00:04:38.560 a specialist, but the waiting list will be a 00:04:38.560 --> 00:04:40.139 very long time. And I remember just chatting 00:04:40.139 --> 00:04:41.720 to my family about it and they said, look, just 00:04:41.720 --> 00:04:46.120 let's go private. And I had... an initial consultation 00:04:46.120 --> 00:04:48.180 with a doctor who just sort of talked me through 00:04:48.180 --> 00:04:50.420 what the procedures would be then had a colonoscopy 00:04:50.420 --> 00:04:52.720 and literally in after the colonoscopy they were 00:04:52.720 --> 00:04:54.879 like yeah you've got severe ulcerative colitis 00:04:54.879 --> 00:04:59.079 and i was like cool what's that hey what what 00:04:59.079 --> 00:05:02.980 is this um yeah and my doctor just said look 00:05:02.980 --> 00:05:05.199 we're going to put you on some medication and 00:05:05.199 --> 00:05:09.319 we'll give you some prednisolone steroids to 00:05:09.769 --> 00:05:11.550 calm the inflammation, then we'll look at, you 00:05:11.550 --> 00:05:13.769 know, long -term treatment. And I remember being 00:05:13.769 --> 00:05:16.569 like, I was 19 at the time. I was like, yeah, 00:05:16.610 --> 00:05:19.569 fine, whatever, no issue. I just saw it as, as 00:05:19.569 --> 00:05:21.170 you kind of do when you're a teen, like, you 00:05:21.170 --> 00:05:23.209 know, a young adult. I'm invincible, it doesn't 00:05:23.209 --> 00:05:26.629 matter. And I think looking back on it now and 00:05:26.629 --> 00:05:29.389 really reflecting, I didn't really take on like 00:05:29.389 --> 00:05:31.370 the enormity of this is a lifelong condition. 00:05:31.629 --> 00:05:35.189 Like this isn't going to go away. Even then when 00:05:35.189 --> 00:05:37.009 someone said it was chronic, I assumed that was 00:05:37.009 --> 00:05:38.769 like, oh, that just means it's more painful than. 00:05:39.209 --> 00:05:43.029 acute if that makes sense um so yeah that was 00:05:43.029 --> 00:05:45.329 that was it that was the start of the very long 00:05:45.329 --> 00:05:48.350 journey that we've been on ever since so there's 00:05:48.350 --> 00:05:51.009 there's definitely let's say at least a period 00:05:51.009 --> 00:05:53.370 of months right that elapsed between you know 00:05:53.370 --> 00:05:55.490 your first symptoms and the first conoscopy right 00:05:55.490 --> 00:05:58.779 based on sort of like your timeline just you 00:05:58.779 --> 00:06:00.560 know as a 19 year old you know normally what's 00:06:00.560 --> 00:06:02.500 going on though like how did you how did you 00:06:02.500 --> 00:06:04.379 navigate this pain because obviously symptoms 00:06:04.379 --> 00:06:06.600 during those months didn't stop right it's just 00:06:06.600 --> 00:06:09.060 a continuous sort of suffering like what was 00:06:09.060 --> 00:06:12.019 that like for you especially at 19 as well oh 00:06:12.019 --> 00:06:14.519 yeah and like i just started university trying 00:06:14.519 --> 00:06:16.680 to make new friends going to my lectures and 00:06:16.680 --> 00:06:18.779 stuff i think it's like most things right when 00:06:18.779 --> 00:06:21.000 most people in this space will just put brave 00:06:21.000 --> 00:06:24.160 face on and then just power through and that's 00:06:24.160 --> 00:06:27.009 just what i did i remember There were a couple 00:06:27.009 --> 00:06:29.170 of times where like, you know, honestly, I was 00:06:29.170 --> 00:06:31.629 with friends. I shat myself a couple of times, 00:06:31.670 --> 00:06:34.870 like genuinely was like, oh, sorry, guys, I'm 00:06:34.870 --> 00:06:39.470 just just going to go. And again, it's not through 00:06:39.470 --> 00:06:41.310 like design or anything like that. It's just 00:06:41.310 --> 00:06:43.250 like I'm not feeling like, oh, my God, what's 00:06:43.250 --> 00:06:45.970 happening? And then, you know, you run off. But 00:06:45.970 --> 00:06:48.470 that was it. Just put brave face on and then 00:06:48.470 --> 00:06:52.329 hopefully things will be OK. Because I remember 00:06:52.329 --> 00:06:55.589 having exams as well. This is like fast forwarding 00:06:55.589 --> 00:06:57.050 a little bit to the summer when I was doing my 00:06:57.050 --> 00:06:59.610 first, first year exams. And I had really, I 00:06:59.610 --> 00:07:02.769 had such a bad IBD flare. Nothing was working. 00:07:02.910 --> 00:07:05.930 And I remember just being like, I can't do my 00:07:05.930 --> 00:07:08.350 exam tomorrow. Like I can't do it. I'm in so 00:07:08.350 --> 00:07:12.449 much pain. And just being like, it'll be all 00:07:12.449 --> 00:07:14.230 right. It will be all right. And like having 00:07:14.230 --> 00:07:16.050 to like manage my own emotions a bit with it 00:07:16.050 --> 00:07:20.069 was challenging, but it was always, I don't know. 00:07:20.110 --> 00:07:21.959 It was always like. this is just part of that 00:07:21.959 --> 00:07:23.860 journey right it will get better i've just got 00:07:23.860 --> 00:07:26.540 to you know navigate this at the moment and then 00:07:26.540 --> 00:07:29.860 fingers crossed things improve yeah so you definitely 00:07:29.860 --> 00:07:32.060 kept a positive mindset the way it seems and 00:07:32.060 --> 00:07:35.620 then because a lot of ibd flare -ups diagnoses 00:07:35.620 --> 00:07:37.379 you know for a lot of people life sort of kind 00:07:37.379 --> 00:07:38.959 of comes to a halt a little bit based on the 00:07:38.959 --> 00:07:41.439 severity of the disease right but you had university 00:07:41.439 --> 00:07:44.360 so you power through now obviously we want to 00:07:44.360 --> 00:07:46.699 get to the point of where you are today and that 00:07:46.699 --> 00:07:49.639 includes surgery so Take us maybe to the next 00:07:49.639 --> 00:07:53.600 step now, which is diagnosis there. You know 00:07:53.600 --> 00:07:56.860 what ulcerative colitis is up to the point where 00:07:56.860 --> 00:07:59.000 I guess you've been told, hey, it's time for 00:07:59.000 --> 00:08:00.740 surgery. What kind of treatments were you on? 00:08:01.079 --> 00:08:04.379 What time elapsed? And then ultimately, what 00:08:04.379 --> 00:08:07.259 led to you having to have surgery? I was in remission 00:08:07.259 --> 00:08:10.480 for quite a long time with the mesalazine. I 00:08:10.480 --> 00:08:14.060 had like one tablet I would take a day. And I 00:08:14.060 --> 00:08:15.959 was like, right, I'll have that forever. And 00:08:15.959 --> 00:08:17.720 I was like, perfect. This is great. Life's easy. 00:08:18.189 --> 00:08:20.649 I can do what I want. It was all good. And I 00:08:20.649 --> 00:08:22.410 remember being on the treatment and it took six 00:08:22.410 --> 00:08:26.490 months for it to really start working. And then 00:08:26.490 --> 00:08:29.569 I remember being, at the time I worked in Sainsbury's 00:08:29.569 --> 00:08:31.870 and I was closing up the shop with one of the 00:08:31.870 --> 00:08:33.950 managers and I went to the toilet and I remember 00:08:33.950 --> 00:08:37.009 having just a normal shit. And I was like, oh 00:08:37.009 --> 00:08:39.029 my God. And I text my family and text my mates 00:08:39.029 --> 00:08:41.809 being like. Best feeling ever. Oh my, honestly, 00:08:41.909 --> 00:08:44.750 best feeling ever. Could not be happier. And 00:08:44.750 --> 00:08:48.690 then from there, it was just like. I'd have periods 00:08:48.690 --> 00:08:50.909 of normal remission. It'd be a couple of months 00:08:50.909 --> 00:08:53.929 and then I'd have a flare up and then I'd go 00:08:53.929 --> 00:08:55.590 back to the GP and they say, right, have some 00:08:55.590 --> 00:08:57.730 more steroids. And it was kind of just that constant 00:08:57.730 --> 00:09:00.850 balancing act of like fine tuning is the way 00:09:00.850 --> 00:09:02.549 I looked at it. It was like my dosage always 00:09:02.549 --> 00:09:04.429 needs to be tuned and then we'll see where it 00:09:04.429 --> 00:09:10.029 gets to. I then did, from there we moved on to 00:09:10.029 --> 00:09:12.710 azathioprine because everything stopped working. 00:09:13.149 --> 00:09:15.490 And I remember having. conversation with my consultant 00:09:15.490 --> 00:09:17.870 then and he just said like these are quite heavy 00:09:17.870 --> 00:09:19.870 drugs these are drugs that you give to people 00:09:19.870 --> 00:09:23.029 that are having like organ transplants like he 00:09:23.029 --> 00:09:25.210 said very similar to people have like kidney 00:09:25.210 --> 00:09:29.330 transplants and i was like oh wow that's uh so 00:09:29.330 --> 00:09:30.889 i've got to take this forever he was like yes 00:09:30.889 --> 00:09:32.769 i remember sitting the thing like this is getting 00:09:32.769 --> 00:09:35.529 more serious and he just said yeah we'll take 00:09:35.529 --> 00:09:37.210 the medication again we'll find your dosages 00:09:37.210 --> 00:09:40.450 and it was just next step literally next step 00:09:40.450 --> 00:09:43.200 up in the ladder if you will before surgery fine 00:09:43.200 --> 00:09:46.080 tune it periods of remission then i moved on 00:09:46.080 --> 00:09:52.200 to cyclosporine which was another one and i remember 00:09:52.200 --> 00:09:55.019 getting like just really weird side effects like 00:09:55.019 --> 00:09:58.019 my eyes would just dehydrate like gel had really 00:09:58.019 --> 00:10:01.919 sore eyes all the time my hands would shake uh 00:10:01.919 --> 00:10:03.620 hair started falling out so i was like look i'm 00:10:03.620 --> 00:10:06.259 gonna go change these and then the doctor said 00:10:06.259 --> 00:10:08.019 if you're not getting on with these we can look 00:10:08.019 --> 00:10:11.110 at other things like I know Vendelizolab or whatever 00:10:11.110 --> 00:10:14.490 it's called, methotrexate and all these other 00:10:14.490 --> 00:10:16.269 things. And they decided to go into like anti 00:10:16.269 --> 00:10:19.690 -cancer categories. And I was like, this isn't 00:10:19.690 --> 00:10:23.269 great. And then we literally hit a brick wall. 00:10:23.470 --> 00:10:26.409 My doctor just said, look, we don't really know. 00:10:26.490 --> 00:10:28.269 Let's see what other drugs come out. So he put 00:10:28.269 --> 00:10:30.350 me back on azathioprine and was like, let's just 00:10:30.350 --> 00:10:32.750 play the waiting game. And I said, enough's enough. 00:10:33.009 --> 00:10:36.610 I want to, what's the point? The solution here 00:10:36.610 --> 00:10:41.539 is. Get rid of your colon. And then I don't have 00:10:41.539 --> 00:10:43.740 to be on these drugs. I don't have to have this 00:10:43.740 --> 00:10:47.480 way of life. I don't have to have the poor quality 00:10:47.480 --> 00:10:49.840 of life that I have. Surely that's the next logical 00:10:49.840 --> 00:10:52.519 step, right? And he was like, yeah, we can do 00:10:52.519 --> 00:10:54.899 that. He's like, but you will elect surgery. 00:10:55.139 --> 00:10:58.279 He's like, you're not unwell enough to have surgery. 00:10:59.220 --> 00:11:01.039 And then again, I sat there going, but what do 00:11:01.039 --> 00:11:05.250 you mean? Like I'm so unwell because I'm going 00:11:05.250 --> 00:11:07.269 to the bathroom like 30 times a day. None of 00:11:07.269 --> 00:11:09.710 these medications are working. We're now going 00:11:09.710 --> 00:11:11.950 back down to the drugs that weren't working. 00:11:12.009 --> 00:11:14.169 Like it doesn't make sense to me. And he's like, 00:11:14.269 --> 00:11:15.929 look, this is just what we can do. We can manage 00:11:15.929 --> 00:11:18.730 your symptoms as best we can until we do surgery 00:11:18.730 --> 00:11:20.289 or we look at all the other drugs that we can 00:11:20.289 --> 00:11:24.269 try. It's up to you. So yeah, I chose let's go 00:11:24.269 --> 00:11:26.409 with surgery because I just want to get it done. 00:11:26.710 --> 00:11:30.870 And it was initially we can have this in. Maybe 00:11:30.870 --> 00:11:32.750 like three months or so. So you've only got to 00:11:32.750 --> 00:11:34.750 wait like 12 weeks. You're on the waiting list. 00:11:34.909 --> 00:11:38.450 I was like, perfect. Okay. Not too long. Then 00:11:38.450 --> 00:11:41.190 it turned into over a year. I think it was like 00:11:41.190 --> 00:11:46.309 13, 13 months or so. Because I'm not from a, 00:11:46.330 --> 00:11:50.370 I'm not an emergency case, right? And there are 00:11:50.370 --> 00:11:52.330 other people who need to have that surgery who 00:11:52.330 --> 00:11:55.139 may have to have like. preventative surgery for 00:11:55.139 --> 00:11:57.100 cancer because they may have to have their bowel 00:11:57.100 --> 00:12:00.059 removed so every time I'm on this list I'm getting 00:12:00.059 --> 00:12:02.480 to the top here's your surgery date great three 00:12:02.480 --> 00:12:05.080 weeks time start going through all the prep drop 00:12:05.080 --> 00:12:08.740 back down it's moved six weeks up the ladder 00:12:08.740 --> 00:12:10.379 drop back down and it was just that constant 00:12:10.379 --> 00:12:14.000 cycle for 13 months until finally had surgery 00:12:14.000 --> 00:12:17.159 I want to say the 12th or 13th of February I 00:12:17.159 --> 00:12:19.440 can't remember the date exactly I should do but 00:12:19.440 --> 00:12:24.490 12th or 13th February 2020. The word surgery 00:12:24.490 --> 00:12:27.889 has sort of this stigma, and I think for a reason 00:12:27.889 --> 00:12:30.090 attached to it, that, you know, this is the last 00:12:30.090 --> 00:12:32.669 resort. This is what nobody wants, you know, 00:12:32.669 --> 00:12:34.830 or this is what people are afraid of the most, 00:12:34.850 --> 00:12:37.230 especially, you know, people who get diagnosed 00:12:37.230 --> 00:12:39.470 with IBD, who actually find out a little bit 00:12:39.470 --> 00:12:41.610 more about Crohn's, about colitis, obviously, 00:12:41.730 --> 00:12:43.490 or if the doctor does a really great job sort 00:12:43.490 --> 00:12:45.090 of at explaining, you know, the different treatment 00:12:45.090 --> 00:12:48.899 options and, you know, climbing the ladder. And 00:12:48.899 --> 00:12:50.419 let's face it, nobody really wants to get to 00:12:50.419 --> 00:12:51.980 surgery, right? Unless they have to, or unless 00:12:51.980 --> 00:12:54.480 their lifestyle is, their life is just so, so, 00:12:54.539 --> 00:12:57.340 so, so bad that that's the only option left for 00:12:57.340 --> 00:13:00.620 them to reclaim their life. So what would you 00:13:00.620 --> 00:13:05.779 kind of tell the people? who might face surgery 00:13:05.779 --> 00:13:08.899 in the future, right? As somebody who has experienced 00:13:08.899 --> 00:13:10.539 it. And that's my first part of the question. 00:13:10.600 --> 00:13:12.100 My second part of the question is how did you 00:13:12.100 --> 00:13:14.720 deal with that? Did you have any fear attached 00:13:14.720 --> 00:13:17.240 to it? Any sort of, you know, uncertainty of 00:13:17.240 --> 00:13:20.460 what was to come? Because, you know, going to 00:13:20.460 --> 00:13:22.919 a doctor and saying, hey, I want surgery is very 00:13:22.919 --> 00:13:24.799 much different from the doctor coming to you 00:13:24.799 --> 00:13:27.100 and saying, hey, we really need to do the surgery 00:13:27.100 --> 00:13:30.360 now. Otherwise, you know, who knows what may 00:13:30.360 --> 00:13:35.799 happen. Yeah, 100%. So, To the first point, people 00:13:35.799 --> 00:13:39.620 who are facing surgery, I think to your point 00:13:39.620 --> 00:13:42.620 you said earlier, doctors usually introduce it 00:13:42.620 --> 00:13:46.539 as this is the last resort. And honestly, I wish 00:13:46.539 --> 00:13:49.639 surgery was on the table much earlier because 00:13:49.639 --> 00:13:53.360 my quality of life has, it's just been complete 00:13:53.360 --> 00:13:58.000 180, right? Like, and I kind of wish that was 00:13:58.000 --> 00:13:59.919 something that was talked through in a more detail. 00:14:00.279 --> 00:14:02.860 And it might've been that my consultant at the 00:14:02.860 --> 00:14:05.429 time could have said, look, These are all of 00:14:05.429 --> 00:14:07.309 the treatment options available for you. Obviously, 00:14:07.389 --> 00:14:10.710 as a young man or young individuals who are out 00:14:10.710 --> 00:14:12.210 there who are having, you know, maybe looking 00:14:12.210 --> 00:14:14.750 at surgery, like it is a big thing. It is life 00:14:14.750 --> 00:14:16.549 changing. And I think that's quite key. It is 00:14:16.549 --> 00:14:19.009 life changing. But my life changed for the better, 00:14:19.149 --> 00:14:22.870 so much better. I wish that had been put on the 00:14:22.870 --> 00:14:24.950 table earlier and sort of discussed through. 00:14:25.909 --> 00:14:28.289 One of my consultants said it as soon as I stopped 00:14:28.289 --> 00:14:30.830 azathioprine and started looking at other drugs. 00:14:30.870 --> 00:14:33.309 He was like, we can do it. he was like but i 00:14:33.309 --> 00:14:35.309 won't force you and he was the first doctor was 00:14:35.309 --> 00:14:37.629 like we can do it and i remember sitting there 00:14:37.629 --> 00:14:40.429 at the time just being like oh that seems a bit 00:14:40.429 --> 00:14:44.590 scary i won't do that but there wasn't at that 00:14:44.590 --> 00:14:47.470 point there wasn't many people on social media 00:14:47.470 --> 00:14:48.929 necessarily talking about surgery and things 00:14:48.929 --> 00:14:53.950 or like not as many that i saw now there's okay 00:14:53.950 --> 00:14:56.169 i'm not a podcast with you john i mean so there's 00:14:56.169 --> 00:14:57.490 so many more people talking about it which is 00:14:57.490 --> 00:15:01.269 amazing i've seen that transition firsthand So 00:15:01.269 --> 00:15:04.370 I think to people who are facing surgery, really 00:15:04.370 --> 00:15:07.330 have a conversation about it, speak to others 00:15:07.330 --> 00:15:09.529 who have gone through it, and that will hopefully 00:15:09.529 --> 00:15:11.710 alleviate some of your fears by hopefully having 00:15:11.710 --> 00:15:14.389 this conversation and listening to this podcast 00:15:14.389 --> 00:15:18.330 may also give you that. And secondly, one thing 00:15:18.330 --> 00:15:20.230 that helped me, which then comes to your second 00:15:20.230 --> 00:15:23.789 part of the question, is what did I do? Because 00:15:23.789 --> 00:15:27.509 I elected, I had time to mentally prepare, whereas 00:15:27.509 --> 00:15:30.110 if you are an emergency patient, you don't. necessarily 00:15:30.110 --> 00:15:32.649 have that and that's where the exception your 00:15:32.649 --> 00:15:35.690 body and stuff can be very challenging i bought 00:15:35.690 --> 00:15:40.389 some test kits from some stone supplies so in 00:15:40.389 --> 00:15:42.009 the uk you can actually get them for free but 00:15:42.009 --> 00:15:44.649 i messaged some some companies and said do you 00:15:44.649 --> 00:15:47.350 have any trial kits because i'm due to have surgery 00:15:47.350 --> 00:15:50.090 and i want to essentially get familiar with what 00:15:50.090 --> 00:15:53.269 my body is going to look and feel like so i got 00:15:53.269 --> 00:15:55.809 a couple they sent me some i just put a stoma 00:15:55.809 --> 00:15:58.939 bag on for the day filled up with water walked 00:15:58.939 --> 00:16:02.740 around, like went to the gym with it on. And 00:16:02.740 --> 00:16:04.340 I was just like, this is what my life's going 00:16:04.340 --> 00:16:07.720 to be like. So I was like, okay, like it's not 00:16:07.720 --> 00:16:11.480 as, the first time I saw a stoma bag, I was like, 00:16:11.600 --> 00:16:13.039 oh, it's going to be like wearing a nappy, isn't 00:16:13.039 --> 00:16:15.279 it? Like, it's going to be so embarrassing. Not 00:16:15.279 --> 00:16:17.240 at all. And I was like, it's going to smell, 00:16:17.360 --> 00:16:19.639 doesn't smell. Like you can't tell that I've 00:16:19.639 --> 00:16:22.679 got a bag unless I physically show you. And it's, 00:16:22.679 --> 00:16:26.039 I think those are my biggest concerns. And then 00:16:26.039 --> 00:16:29.830 body image. what am i going to look like fortunately 00:16:29.830 --> 00:16:32.970 like the bags i use and i haven't prepared this 00:16:32.970 --> 00:16:36.370 but the bags i use are black so they look cool 00:16:36.370 --> 00:16:39.070 right and that's why i'm like oh that's not too 00:16:39.070 --> 00:16:41.750 bad and that sort of really helped mentally for 00:16:41.750 --> 00:16:44.809 me get me in a place where i was like this is 00:16:44.809 --> 00:16:47.789 happening i've chosen to do this this seems to 00:16:47.789 --> 00:16:49.870 be like the right decision and i'll never forget 00:16:49.870 --> 00:16:54.879 waking up after surgery your your stoma For those 00:16:54.879 --> 00:16:56.960 of you, if you're going to get one or have one, 00:16:57.100 --> 00:17:00.240 like it's huge, it's ginormous. And that is like, 00:17:00.360 --> 00:17:03.200 whoa, what's that? And then you've got a big 00:17:03.200 --> 00:17:05.859 clear bag. Obviously that's for doctors to look 00:17:05.859 --> 00:17:08.859 at. It shrinks down. But I remember just looking 00:17:08.859 --> 00:17:11.700 at it being like, oh my God, this is crazy. But 00:17:11.700 --> 00:17:15.680 I wasn't in pain. And like I was in hospital 00:17:15.680 --> 00:17:18.799 for 19 days, I think it was in total, because 00:17:18.799 --> 00:17:20.579 my stoma fell asleep and then we had to wake 00:17:20.579 --> 00:17:24.480 up and it was this sort of cycle. But I had no 00:17:24.480 --> 00:17:27.359 urgency and I couldn't get my head around that 00:17:27.359 --> 00:17:30.880 because for like, at that time I was 30. So for 00:17:30.880 --> 00:17:33.359 a third of my adult life, a third of my life, 00:17:33.500 --> 00:17:36.220 I was like, I have to run away and go to the 00:17:36.220 --> 00:17:39.140 toilet. And I wasn't, I was just sat there like, 00:17:39.319 --> 00:17:42.400 okay, well, this is working. I can't feel really 00:17:42.400 --> 00:17:44.019 feel this. I've noticed the bags filling up, 00:17:44.079 --> 00:17:46.740 but, but that's it. And that was the, that was 00:17:46.740 --> 00:17:50.539 such a weird transition. And even now, like I 00:17:50.539 --> 00:17:55.400 can't. I can't remember like that sensation, 00:17:55.500 --> 00:17:57.359 that pain of having to run off to the toilet 00:17:57.359 --> 00:17:59.819 all the time, but that was my, my everyday. So 00:17:59.819 --> 00:18:02.299 yeah, so that massively helped. And then connecting 00:18:02.299 --> 00:18:03.920 with other people. There's a few people I reached 00:18:03.920 --> 00:18:06.559 out to who had stoma bags and I was like, what's 00:18:06.559 --> 00:18:10.200 it like? And they just said, honestly, my life 00:18:10.200 --> 00:18:12.640 is so much better. They're like, you'll get like 00:18:12.640 --> 00:18:14.079 the first couple of weeks, obviously is going 00:18:14.079 --> 00:18:16.799 to be, it's major surgery. You'll have hiccups, 00:18:16.859 --> 00:18:19.779 you'll have like teething problems, but honestly 00:18:19.779 --> 00:18:23.950 you will be. so much better off and i'm really 00:18:23.950 --> 00:18:27.650 glad i listened to them because well i am so 00:18:27.650 --> 00:18:31.869 there you go sure sure that that's that's really 00:18:31.869 --> 00:18:35.730 great so in a sense rehearsing really did help 00:18:35.730 --> 00:18:37.789 you prepare it's a very interesting story i mean 00:18:37.789 --> 00:18:40.029 this is the first time that i you know talked 00:18:40.029 --> 00:18:41.849 to someone who literally like you said you know 00:18:41.849 --> 00:18:43.849 ordered a trial kit and rehearsed living with 00:18:43.849 --> 00:18:46.299 it before actually experiencing it So rehearsal 00:18:46.299 --> 00:18:48.059 can work, definitely. And then yet, you know, 00:18:48.079 --> 00:18:49.500 you wake up, you see the stoma for the first 00:18:49.500 --> 00:18:51.500 time, you're like, whoa, you know, it still obviously 00:18:51.500 --> 00:18:53.539 takes a little bit of, you know, adjusting and 00:18:53.539 --> 00:18:56.500 sort of overcoming the change, at least visually. 00:18:57.240 --> 00:19:02.180 Now, do you consider yourself cured? Oh, what 00:19:02.180 --> 00:19:08.559 a question. No, yes and no. I still have colitis. 00:19:08.680 --> 00:19:12.240 It's still in my body. So I had a subcolectomy, 00:19:12.279 --> 00:19:16.789 so I still have my rectum. I have to monitor 00:19:16.789 --> 00:19:19.849 that because that's where my colitis was active. 00:19:20.589 --> 00:19:23.230 So it could return. I know in a couple of years, 00:19:23.630 --> 00:19:27.029 I'm going to have to have that removed because 00:19:27.029 --> 00:19:29.890 A, it's a cancer risk because I've got an organ 00:19:29.890 --> 00:19:32.670 or part of my organ that isn't working. And B, 00:19:32.930 --> 00:19:36.089 if the colitis flares up in that area again, 00:19:36.230 --> 00:19:44.609 not really. But for the main. It's interesting. 00:19:44.690 --> 00:19:48.450 I'd say yes, because I haven't got any real symptoms 00:19:48.450 --> 00:19:51.809 at this time, but I've had all the side effects 00:19:51.809 --> 00:19:54.170 of years and years and years of taking very strong 00:19:54.170 --> 00:19:59.390 medication. So I guess it is. Does that make 00:19:59.390 --> 00:20:02.250 sense? Absolutely. And I asked the question because 00:20:02.250 --> 00:20:07.470 typically... it's not really easy to say, yes, 00:20:07.509 --> 00:20:10.130 I'm cured, right? And surgery is actually not 00:20:10.130 --> 00:20:12.089 always the cure. I mean, yes, we're talking about 00:20:12.089 --> 00:20:14.049 colitis, but a lot of Crohn's patients that I 00:20:14.049 --> 00:20:15.910 talk to as well, then typically it's like, no, 00:20:16.089 --> 00:20:19.069 you know, it can still be there, you know, even 00:20:19.069 --> 00:20:22.390 though they might live with a stoma. So, but 00:20:22.390 --> 00:20:24.750 you know, definitely, I think you put it very 00:20:24.750 --> 00:20:27.470 well. So it's no secret, you mentioned it earlier 00:20:27.470 --> 00:20:30.750 as well, you're extremely... active online as 00:20:30.750 --> 00:20:32.950 well on social media. And that's part of your 00:20:32.950 --> 00:20:35.890 efforts to raise awareness, but also to share 00:20:35.890 --> 00:20:38.670 your story. And I think sharing our stories is 00:20:38.670 --> 00:20:42.130 really the core, the heart of awareness. In one 00:20:42.130 --> 00:20:44.230 of your posts, I don't know exactly if you remember 00:20:44.230 --> 00:20:47.349 what it was, but in one of your posts, you wrote 00:20:47.349 --> 00:20:50.089 or you said in a kind of quote, some days are 00:20:50.089 --> 00:20:53.789 easier and some are harder. I would love for 00:20:53.789 --> 00:20:58.039 you to tell me about the hard ones. Yeah, it's 00:20:58.039 --> 00:21:02.000 interesting because I try to, as best I can, 00:21:02.059 --> 00:21:05.000 portray a very positive attitude and mindset 00:21:05.000 --> 00:21:07.960 just generally towards things. So even with what 00:21:07.960 --> 00:21:11.140 I post, I want to show that even after life -changing 00:21:11.140 --> 00:21:14.880 surgery, battling chronic conditions, you can 00:21:14.880 --> 00:21:16.720 still have an amazing life, right? And I think 00:21:16.720 --> 00:21:18.480 that's, for me, that's always going to be the 00:21:18.480 --> 00:21:20.279 important part because there will be people out 00:21:20.279 --> 00:21:24.279 there that will be struggling. The days that 00:21:24.279 --> 00:21:27.000 I struggle with, I'll be brutally honest, I hate 00:21:27.000 --> 00:21:30.180 my stoma sometimes. So that's why I'm like, am 00:21:30.180 --> 00:21:33.839 I cured? That's another part of it. I'd reframe 00:21:33.839 --> 00:21:36.519 cured to have I got my quality of life back? 00:21:36.740 --> 00:21:39.099 And the answer is yes. I've now got a different 00:21:39.099 --> 00:21:42.299 route that I've taken to get back to where I 00:21:42.299 --> 00:21:47.000 was before. But there are days where I'll get 00:21:47.000 --> 00:21:49.410 really sore skin. You do the best things you 00:21:49.410 --> 00:21:52.430 can. I'll get sore skin and I'll itch my skin. 00:21:52.529 --> 00:21:55.150 And it's like, oh, this is crazy. Blockages. 00:21:56.170 --> 00:21:58.930 So for those of you that don't know, you do have 00:21:58.930 --> 00:22:00.730 to be careful what food you eat. You can't just 00:22:00.730 --> 00:22:06.130 shove it all in. And I've had three or four blockable, 00:22:06.130 --> 00:22:07.829 I think, but yeah, about three or four major 00:22:07.829 --> 00:22:10.930 blockages in my life. So I've been hospitalized 00:22:10.930 --> 00:22:17.609 because of it. I sometimes just hate. how my 00:22:17.609 --> 00:22:23.470 bag sits. So for example, when your bag is full, 00:22:23.650 --> 00:22:25.490 you can tell you've got a big bag, right? You 00:22:25.490 --> 00:22:28.549 can just tell. And you might be walking somewhere 00:22:28.549 --> 00:22:31.529 and the wind is blowing at you and it just looks 00:22:31.529 --> 00:22:33.349 like you've got this massive lump just sticking 00:22:33.349 --> 00:22:36.710 out of your top, right? And sometimes my stoma, 00:22:36.769 --> 00:22:39.849 like, although I love it, it's quite a long stoma. 00:22:40.049 --> 00:22:42.890 So it's about the size of my thumb, just underneath, 00:22:43.049 --> 00:22:46.930 right? And I see other people who've got stomas 00:22:46.930 --> 00:22:48.710 and they're like, oh, theirs is smaller and flatter. 00:22:48.890 --> 00:22:51.269 Like I wish mine was like that. And there's just 00:22:51.269 --> 00:22:53.809 times where I'm like, sometimes I'm just very 00:22:53.809 --> 00:22:58.309 aware that I've got a bag. And those are the 00:22:58.309 --> 00:23:02.230 challenging days because I sit there going, I'm 00:23:02.230 --> 00:23:03.730 not cured. Do you know what I mean? That's, that's 00:23:03.730 --> 00:23:07.869 my point. I'm not, I still got this. So lots 00:23:07.869 --> 00:23:10.180 of people ask me normally like. Do you consider 00:23:10.180 --> 00:23:11.960 yourself disabled? And that's something that's 00:23:11.960 --> 00:23:15.059 quite pertinent in sort of from our side. And 00:23:15.059 --> 00:23:17.000 I'll say yes, because I've got this big medical 00:23:17.000 --> 00:23:18.900 device that I have to physically wear all the 00:23:18.900 --> 00:23:22.500 time. And those are days where I'm like, although 00:23:22.500 --> 00:23:26.640 surgery has helped me, I wish this wasn't the 00:23:26.640 --> 00:23:30.279 only way to get to where I am now. So yeah, that's 00:23:30.279 --> 00:23:35.400 it. So you very bluntly said some days I hate 00:23:35.400 --> 00:23:39.039 my stoma. But it's with you. It's with you for 00:23:39.039 --> 00:23:43.480 life. So how do you mentally make peace with 00:23:43.480 --> 00:23:47.539 it? How do you make peace with your stoma? I 00:23:47.539 --> 00:23:50.700 mean, to be fair, it's like anything. I'm just 00:23:50.700 --> 00:23:54.759 frustrated. It's emotional. So I'll end up just 00:23:54.759 --> 00:23:56.240 feeling like, look, I'm annoyed about something. 00:23:56.440 --> 00:24:02.039 It'll be fine. I'll go away. And then I'll take 00:24:02.039 --> 00:24:03.819 my mind off it, go and do something, whatever. 00:24:04.380 --> 00:24:08.799 And I... and then forget why i was angry do you 00:24:08.799 --> 00:24:10.240 know what i mean like it is one of those things 00:24:10.240 --> 00:24:12.980 it's more of an emotive reaction um because i'll 00:24:12.980 --> 00:24:14.319 then go and do something like i'll go to the 00:24:14.319 --> 00:24:17.240 gym we'll go for a walk or do whatever i'm not 00:24:17.240 --> 00:24:20.359 having to plan my whole day or my activity around 00:24:20.359 --> 00:24:23.480 how close is the nearest toilet i think that's 00:24:23.480 --> 00:24:25.799 the hardest thing what i say the hardest thing 00:24:25.799 --> 00:24:30.079 the solution to those harder days is where am 00:24:30.079 --> 00:24:33.500 i now where was i looking and i'm being reflective 00:24:33.500 --> 00:24:36.289 and looking back to go There were days where 00:24:36.289 --> 00:24:37.849 I couldn't, like literally I couldn't stand, 00:24:38.049 --> 00:24:41.009 like I'd just have to pass out and go to sleep 00:24:41.009 --> 00:24:44.029 to I'm deciding what I want to eat and I'm going 00:24:44.029 --> 00:24:45.509 to go cook dinner or I'm going to go to the gym 00:24:45.509 --> 00:24:47.269 and all these things I couldn't really do before 00:24:47.269 --> 00:24:50.690 surgery. So yeah, there were days where I'm like, 00:24:50.769 --> 00:24:56.029 oh, that bottom line is it's, yeah, saved me 00:24:56.029 --> 00:24:59.589 from so much worse. I would like to know from 00:24:59.589 --> 00:25:02.650 you, especially since you've... had the diagnosis 00:25:02.650 --> 00:25:05.109 at 19 then a surgery around like the age of 30 00:25:05.109 --> 00:25:06.589 you know now you've had it a couple of years 00:25:06.589 --> 00:25:11.250 you know how has colitis and your ostomy as well 00:25:11.250 --> 00:25:15.890 changed you as a person before even having like 00:25:15.890 --> 00:25:19.549 stoma or even even being diagnosed with colitis 00:25:19.549 --> 00:25:23.829 like i was just a normal happy -go -lucky individual 00:25:23.829 --> 00:25:27.630 couldn't care less i'll just do anything try 00:25:27.630 --> 00:25:29.730 and get away with like being naughty or whatever 00:25:29.730 --> 00:25:31.579 stuff like that like you know Typical teenager, 00:25:31.839 --> 00:25:35.380 right? And I think having this condition, like 00:25:35.380 --> 00:25:39.640 colitis, immediately made me think I need to 00:25:39.640 --> 00:25:44.140 grow up. I know it sounds a bit weird, but like 00:25:44.140 --> 00:25:47.019 this is serious. So we need to start thinking 00:25:47.019 --> 00:25:50.559 about this seriously. But also like how everything 00:25:50.559 --> 00:25:53.680 doesn't matter other than your health. Your health 00:25:53.680 --> 00:25:55.519 is seriously the most important thing. Jobs will 00:25:55.519 --> 00:25:59.160 come and go, you know. Partners, girlfriends, 00:25:59.359 --> 00:26:01.779 boyfriends, whomever they can come and go, but 00:26:01.779 --> 00:26:03.339 your health bottom line is always going to be 00:26:03.339 --> 00:26:05.519 the most important thing. And then getting a 00:26:05.519 --> 00:26:10.740 stoma that changed me to be so much more vigilant 00:26:10.740 --> 00:26:17.299 of inclusivity, how people have different differing 00:26:17.299 --> 00:26:19.799 needs and how like a lot of the world is not 00:26:19.799 --> 00:26:21.859 catered for people have differing needs. Um, 00:26:22.079 --> 00:26:27.140 and I, again, like. going into disabled toilets 00:26:27.140 --> 00:26:30.519 going into like general toys things like there's 00:26:30.519 --> 00:26:32.640 still a huge stigma around these sorts of things 00:26:32.640 --> 00:26:35.440 and yeah my again to point back to my bio my 00:26:35.440 --> 00:26:37.920 mission is to be like the bag life's not bad 00:26:37.920 --> 00:26:41.279 and i've been very privileged to be able to not 00:26:41.279 --> 00:26:43.380 just go on podcasts like yours but work with 00:26:43.380 --> 00:26:46.019 medical companies i've gone and spoken in parliament 00:26:46.019 --> 00:26:50.680 in the uk i've been on the news and it's it's 00:26:50.680 --> 00:26:53.619 like i have an opportunity to try and progress 00:26:53.619 --> 00:26:56.920 things and make things better. Whereas if I hadn't 00:26:56.920 --> 00:26:59.380 had this condition, probably wouldn't be doing 00:26:59.380 --> 00:27:00.759 any of that. I'd probably just be going down 00:27:00.759 --> 00:27:03.200 the pub with my mates. Do you know what I mean? 00:27:03.240 --> 00:27:05.380 So I guess it's giving me a bit more of a unique 00:27:05.380 --> 00:27:09.119 selling point as well. And a purpose, right? 00:27:09.220 --> 00:27:12.339 Yeah, 100%. Like I've always been somebody who 00:27:12.339 --> 00:27:15.119 wants to give back. Like my whole career path 00:27:15.119 --> 00:27:16.759 has always been around how can I help others? 00:27:17.640 --> 00:27:21.680 I've had people reach out to me. Like generally 00:27:21.680 --> 00:27:24.519 just through messages, like stuff like all these 00:27:24.519 --> 00:27:26.079 sorts of things. I remember once, it will always 00:27:26.079 --> 00:27:28.660 stick with me. I had a young mum whose daughter 00:27:28.660 --> 00:27:30.920 was going to go have surgery and she was really 00:27:30.920 --> 00:27:33.359 scared. So she was like, can I call you? And 00:27:33.359 --> 00:27:34.900 this was during the pandemic. So I was like, 00:27:34.960 --> 00:27:37.619 yeah, sure. So she called me and she was really 00:27:37.619 --> 00:27:39.339 upset, cried down the phone. I was like, it's 00:27:39.339 --> 00:27:41.859 all right. Like this will be what happens. Like 00:27:41.859 --> 00:27:43.660 they'll go into theater and then this will happen 00:27:43.660 --> 00:27:46.299 and this will happen. And it had nothing to do 00:27:46.299 --> 00:27:49.009 with. like the daughter who i think it was the 00:27:49.009 --> 00:27:51.230 daughter who was having surgery it was the mom 00:27:51.230 --> 00:27:53.289 and i was just chatting to her mom and she was 00:27:53.289 --> 00:27:55.069 after it she was like you've been so helpful 00:27:55.069 --> 00:27:57.089 like everything you've done is just incredible 00:27:57.089 --> 00:28:01.309 like thank you and that's it all everything we 00:28:01.309 --> 00:28:04.230 do is just to help that one person yeah yeah 00:28:04.230 --> 00:28:07.980 it's it's very interesting you say that and And 00:28:07.980 --> 00:28:09.660 I'm going to share a very similar story that 00:28:09.660 --> 00:28:11.420 happened to me recently as well. And then just, 00:28:11.440 --> 00:28:13.480 I'm telling this as well to really sort of lift 00:28:13.480 --> 00:28:15.299 the spirit of positivity and this importance 00:28:15.299 --> 00:28:17.180 of awareness is that I had somebody recently 00:28:17.180 --> 00:28:19.920 who was struggling. And then I asked, you know, 00:28:19.920 --> 00:28:21.079 cause this is one of the questions I was asked, 00:28:21.119 --> 00:28:23.140 like, so how proactive is your specialist, right? 00:28:23.180 --> 00:28:26.279 Your GI and, um, basically responded and saying 00:28:26.279 --> 00:28:28.980 that not very much takes a long time to get an 00:28:28.980 --> 00:28:31.240 answer. It's not very clear. And I basically 00:28:31.240 --> 00:28:33.099 said. I think what you should really consider 00:28:33.099 --> 00:28:35.619 is try and change, right? Try and find somebody 00:28:35.619 --> 00:28:37.519 else. And in the end, you know, the person came 00:28:37.519 --> 00:28:39.279 back and said, you know what, thank you so much 00:28:39.279 --> 00:28:42.119 because I just, tomorrow I'm going to call my 00:28:42.119 --> 00:28:44.240 network and see what other sort of clinics I 00:28:44.240 --> 00:28:46.700 can have, right? Sort of like just finding this 00:28:46.700 --> 00:28:48.720 tiny little courage to make something, to do 00:28:48.720 --> 00:28:50.180 something very simple, which is picking up the 00:28:50.180 --> 00:28:52.180 phone potentially and, you know, try and find 00:28:52.180 --> 00:28:55.460 another medical team, another provider, right? 00:28:56.650 --> 00:28:57.809 And then I thought about this and I was like, 00:28:57.890 --> 00:28:59.630 you know, in the end, it's really not about views. 00:28:59.769 --> 00:29:02.049 It's not about engagement. It's about like, you 00:29:02.049 --> 00:29:04.670 know, here's one day been able to sort of help 00:29:04.670 --> 00:29:07.750 or motivate or inspire one person to do something 00:29:07.750 --> 00:29:10.430 that could potentially change something positively 00:29:10.430 --> 00:29:14.289 in that person's IBD journey. I mean, that's 00:29:14.289 --> 00:29:17.470 what a great purpose, right? Yeah, 100%. And 00:29:17.470 --> 00:29:19.430 look, what an amazing story for you as well. 00:29:19.549 --> 00:29:21.190 Like, thank you for sharing that. That's awesome. 00:29:21.309 --> 00:29:24.269 Sure. And it's, you're right. That's the main 00:29:24.269 --> 00:29:27.240 thing is. If you can help just that one person. 00:29:27.380 --> 00:29:29.680 And I don't even have to reach out and tell you, 00:29:29.700 --> 00:29:32.220 right? What you're doing, especially with your 00:29:32.220 --> 00:29:34.619 amazing podcast, is people will be listening 00:29:34.619 --> 00:29:36.519 to it and they'll be going, oh, I didn't think 00:29:36.519 --> 00:29:39.480 of it that way around. Or maybe I should try 00:29:39.480 --> 00:29:42.019 and do something different. That's it, right? 00:29:42.559 --> 00:29:44.700 That's it. And that comes through the stories 00:29:44.700 --> 00:29:47.940 of people like you and others who go through 00:29:47.940 --> 00:29:50.799 this journey. So that's really great. Now, if 00:29:50.799 --> 00:29:54.299 you could go back to the 19 -year -old self, 00:29:55.309 --> 00:29:57.289 based on everything you've experienced based 00:29:57.289 --> 00:29:58.750 on everything that you've learned now through 00:29:58.750 --> 00:30:01.589 this journey what would you tell yourself if 00:30:01.589 --> 00:30:03.130 i knew the journey ahead was going to be exactly 00:30:03.130 --> 00:30:07.849 the same i think i would simply say embrace it 00:30:07.849 --> 00:30:12.650 uh don't be scared it'll be all right and there'll 00:30:12.650 --> 00:30:16.329 be hard days but you'll pull through and where 00:30:16.329 --> 00:30:20.230 you end up like today as of recording everything 00:30:20.230 --> 00:30:23.520 you ever wanted in your life you will get So 00:30:23.520 --> 00:30:26.000 I've got a beautiful wife. I've got a house. 00:30:26.200 --> 00:30:28.799 I've got an amazing job. I am doing some incredible 00:30:28.799 --> 00:30:32.000 things on social media. And at 19, those are 00:30:32.000 --> 00:30:33.779 all the questions and the doubts and the fears 00:30:33.779 --> 00:30:35.640 that I had, right? How am I going to be able 00:30:35.640 --> 00:30:38.920 to do this? Will someone love me for my condition? 00:30:39.019 --> 00:30:41.220 All these sorts of things. And the answer is, 00:30:41.259 --> 00:30:43.740 yeah, all of those things and more. And I think 00:30:43.740 --> 00:30:46.359 to anyone that's listening to this, that's just 00:30:46.359 --> 00:30:48.799 the start of their journey. Like it's natural. 00:30:48.900 --> 00:30:49.779 You're going to have doubts. You're going to 00:30:49.779 --> 00:30:54.609 have worries, but everything will work out. That's 00:30:54.609 --> 00:30:56.910 a very positive way and it's exactly how I'd 00:30:56.910 --> 00:30:58.650 like to end the show. But before I let you go, 00:30:58.769 --> 00:31:02.509 there is one question that I have and it's a 00:31:02.509 --> 00:31:05.750 very difficult question. I am going to ask you 00:31:05.750 --> 00:31:07.589 that question because earlier when we were talking 00:31:07.589 --> 00:31:09.609 about this, you know, are you cured or not cured, 00:31:09.750 --> 00:31:12.329 you said yes and no. So you didn't say yes and 00:31:12.329 --> 00:31:16.210 you didn't say no. So I'd like to know from you, 00:31:16.289 --> 00:31:19.609 based on sort of your hopes, your sort of optimism, 00:31:20.589 --> 00:31:23.589 Do you think that we'll see a cure to IBD in 00:31:23.589 --> 00:31:29.170 our lifetime? Yes. I think we will for the advancement 00:31:29.170 --> 00:31:33.710 of, I think AI is going to play a huge part in 00:31:33.710 --> 00:31:36.529 the medical scene. There's so many advancements 00:31:36.529 --> 00:31:39.329 that have taken place in the last five to 10 00:31:39.329 --> 00:31:41.349 years anyway. Like there's more drugs available 00:31:41.349 --> 00:31:46.359 on the market. Stoma care is improving. And I 00:31:46.359 --> 00:31:48.299 think generally our understanding of our sort 00:31:48.299 --> 00:31:50.779 of gut, our biome that we have, all these sorts 00:31:50.779 --> 00:31:53.619 of things, our health is going to improve. So 00:31:53.619 --> 00:31:55.839 yeah, in my lifetime, I think there would definitely 00:31:55.839 --> 00:31:59.619 be, there would definitely be some, a cure. The 00:31:59.619 --> 00:32:02.700 only reason why it wouldn't be is because there's 00:32:02.700 --> 00:32:04.779 other conditions that then take the priority 00:32:04.779 --> 00:32:06.960 in that list for funding and research, you know? 00:32:07.519 --> 00:32:10.640 And I think we'll have more people talking about 00:32:10.640 --> 00:32:12.720 it. And do you know what? It might be something 00:32:12.720 --> 00:32:15.970 so simple that it's like, Don't have olives. 00:32:16.750 --> 00:32:18.690 All right, cool. Amazing. Then no one gets it. 00:32:18.690 --> 00:32:20.410 It'll be, it could be something so simple or 00:32:20.410 --> 00:32:23.049 don't use this type of plastic and microwaving 00:32:23.049 --> 00:32:25.470 stuff or do you know what I mean? And I'm, I'm 00:32:25.470 --> 00:32:29.109 really hopeful that the work that, that obviously 00:32:29.109 --> 00:32:30.549 you're doing, other people are doing in this 00:32:30.549 --> 00:32:34.210 space, um, will help at least push that narrative 00:32:34.210 --> 00:32:37.410 forward. So our, you know, next generations, 00:32:37.630 --> 00:32:40.329 my children, um, I mean, I haven't had them yet, 00:32:40.369 --> 00:32:43.130 but hopefully I will, um, won't have to go through 00:32:43.130 --> 00:32:46.700 the same. So. So, yeah. What about you? Do you 00:32:46.700 --> 00:32:49.960 think that'll be a cure? You know, it's interesting 00:32:49.960 --> 00:32:52.099 to say because you seem so convinced and I'm 00:32:52.099 --> 00:32:54.539 very positive about this as well, even though 00:32:54.539 --> 00:32:55.819 sometimes I look at the world, you know, and 00:32:55.819 --> 00:32:57.839 it's tough to stay positive. But in this domain 00:32:57.839 --> 00:33:00.599 as well, I say yes. Now, the one thing I would 00:33:00.599 --> 00:33:04.059 say is, will it happen in my lifetime? I am not 00:33:04.059 --> 00:33:07.000 so sure. Things sort of tend to move a little 00:33:07.000 --> 00:33:10.200 bit slower sometimes based on the reality. But 00:33:10.200 --> 00:33:12.500 then again, there's a hope. So I'm confident 00:33:12.500 --> 00:33:14.779 there's something positive is going to happen. 00:33:14.819 --> 00:33:18.200 I just hope that we'll not be dragged through 00:33:18.200 --> 00:33:20.920 lots of political or bureaucratic things and 00:33:20.920 --> 00:33:22.500 that people will actually be able to benefit 00:33:22.500 --> 00:33:26.299 from a cure, a really, really positive development. 00:33:26.519 --> 00:33:29.480 But I do also believe that it is going to come. 00:33:29.599 --> 00:33:32.430 And listen, you and I are both young still. Who 00:33:32.430 --> 00:33:35.329 knows, right? So maybe it will be in our lifetime, 00:33:35.470 --> 00:33:39.450 right? Maybe we change the question. Maybe we 00:33:39.450 --> 00:33:41.349 change it to, will everyone have access to the 00:33:41.349 --> 00:33:43.849 healthcare for their stoma care and things? And 00:33:43.849 --> 00:33:45.750 I think if we can at least strive towards that, 00:33:45.849 --> 00:33:47.529 then a cure should hopefully come after that. 00:33:48.299 --> 00:33:51.200 Absolutely. Absolutely. Yeah. And there's a lot 00:33:51.200 --> 00:33:53.460 of optimism needed in that space as well. So 00:33:53.460 --> 00:33:56.400 we'll send that optimism into the universe and 00:33:56.400 --> 00:33:59.579 we'll hopefully get to that point quicker than 00:33:59.579 --> 00:34:02.579 potentially the real cure or while we wait for 00:34:02.579 --> 00:34:04.960 the cure. So, Anne, thank you so much. This has 00:34:04.960 --> 00:34:06.559 really been fascinating. Obviously, this is a 00:34:06.559 --> 00:34:08.920 topic that we could keep on talking about for 00:34:08.920 --> 00:34:10.880 hours and hours, but I'd say we'll just leave 00:34:10.880 --> 00:34:13.019 that to our respective audiences, right, and 00:34:13.019 --> 00:34:16.659 the community. So, you know, we can continue 00:34:16.659 --> 00:34:19.300 the conversation. conversation there. We're going 00:34:19.300 --> 00:34:21.500 to also have your social media handles in the 00:34:21.500 --> 00:34:23.559 show notes so that people can reach out to you 00:34:23.559 --> 00:34:26.500 and bring all these great questions that they 00:34:26.500 --> 00:34:29.260 have. From my end, I wish you nothing but the 00:34:29.260 --> 00:34:33.179 best moving forward with your life and your health 00:34:33.179 --> 00:34:35.800 as well. And keep doing what you're doing because 00:34:35.800 --> 00:34:38.420 it's really, really important. And I think you're 00:34:38.420 --> 00:34:41.519 definitely one of the major players in this field. 00:34:42.780 --> 00:34:45.400 Keep it up, man. Thank you. I'm going to go red. 00:34:45.619 --> 00:34:47.760 That means a lot. Thank you. But same to you. 00:34:47.760 --> 00:34:49.440 Keep doing what you're doing. Keep getting amazing 00:34:49.440 --> 00:34:52.960 people on your podcast. And yeah, just keep smashing 00:34:52.960 --> 00:34:55.820 it. We'll do it together. Perfect. Ant, thank 00:34:55.820 --> 00:34:58.199 you so much. Really appreciate it. Thanks, mate. 00:34:58.280 --> 00:35:01.079 Appreciate it. That's it for today's episode 00:35:01.079 --> 00:35:04.019 of Talking S***, presented by Colitis Unfiltered. 00:35:04.599 --> 00:35:07.480 I'm Frank Tabering. And if this hit home or hit 00:35:07.480 --> 00:35:10.400 your gut, do us a favor. Subscribe to the show. 00:35:10.889 --> 00:35:13.449 And follow us at Kaleidos Unfiltered on YouTube, 00:35:13.670 --> 00:35:17.030 Substack, Instagram, Threads, TikTok, and Reddit. 00:35:17.309 --> 00:35:19.469 We'll see you soon for more inspiring stories 00:35:19.469 --> 00:35:20.710 from the bathroom floor.