WEBVTT 00:00:02.819 --> 00:00:06.740 With Crohn's I'd say the massive common misconception 00:00:06.740 --> 00:00:10.759 is it's just about going to the toilet and pooing 00:00:10.759 --> 00:00:14.859 and I certainly it's a lot more than that it 00:00:14.859 --> 00:00:19.100 you know like I say it it drains you the fatigue 00:00:19.100 --> 00:00:22.800 the mental side of it there's so much more to 00:00:22.800 --> 00:00:27.219 it than just what people see as the physical 00:00:27.219 --> 00:00:30.519 symptoms. Welcome back to the Talking S*** Podcast, 00:00:31.059 --> 00:00:34.259 presented by Colitis Unfiltered. My name is Frank 00:00:34.259 --> 00:00:36.759 Tabering, and today I have the pleasure of speaking 00:00:36.759 --> 00:00:39.719 with October, who got diagnosed with Crohn's 00:00:39.719 --> 00:00:43.600 disease at age 18 in London. October, welcome 00:00:43.600 --> 00:00:46.799 to the show. Hello, nice to meet you. Well, it's 00:00:46.799 --> 00:00:48.859 a pleasure to meet you as well. And what I'd 00:00:48.859 --> 00:00:51.380 like to do typically is sort of dive straight 00:00:51.380 --> 00:00:54.659 into your IBD journey. So if you want to give 00:00:54.659 --> 00:00:58.399 us, in a couple of sentences, a brief overview 00:00:58.399 --> 00:01:02.460 of your journey from diagnosis to where you are 00:01:02.460 --> 00:01:05.420 at today okay yeah i'll try and keep it as brief 00:01:05.420 --> 00:01:10.650 as possible um so i was Diagnosed when I was 00:01:10.650 --> 00:01:13.409 18. I had a lot of stress going on in my life 00:01:13.409 --> 00:01:15.689 at the time and I think that kind of brought 00:01:15.689 --> 00:01:19.689 my symptoms out more so. So I then went back 00:01:19.689 --> 00:01:21.790 and forth to the doctors for about six months 00:01:21.790 --> 00:01:25.849 and then I got referred to our local hospital 00:01:25.849 --> 00:01:29.719 where they then were able to give me my diagnosis 00:01:29.719 --> 00:01:32.920 and then I kind of went on lots of different 00:01:32.920 --> 00:01:35.799 biological treatments for a very long time but 00:01:35.799 --> 00:01:38.079 unfortunately lost quite a lot of reaction to 00:01:38.079 --> 00:01:41.400 all of them which then resulted in having a stoma 00:01:41.400 --> 00:01:44.019 surgery and I've had various other surgeries 00:01:44.019 --> 00:01:46.900 and yeah now I live with a permanent stoma and 00:01:46.900 --> 00:01:50.969 still have Crohn's disease. It doesn't end with 00:01:50.969 --> 00:01:52.790 the surgery, right? That's like what a lot of 00:01:52.790 --> 00:01:55.409 people kind of get wrong. They think, hey, let's 00:01:55.409 --> 00:01:58.090 remove my intestines. It's going to be fine. 00:01:58.150 --> 00:02:00.849 I'm cured. But that's obviously not the case. 00:02:00.950 --> 00:02:05.569 Yes. Yeah, unfortunately not. So let's go back 00:02:05.569 --> 00:02:09.889 a little bit. You got diagnosed. If you go back 00:02:09.889 --> 00:02:13.509 to that very moment, what went through your mind 00:02:13.509 --> 00:02:17.099 when the physician told you that? This was Crohn's 00:02:17.099 --> 00:02:20.039 disease. And had you heard about it before? Was 00:02:20.039 --> 00:02:23.340 it the first time? Yeah, so I'd never heard of 00:02:23.340 --> 00:02:26.719 it before. I think I may have vaguely heard about 00:02:26.719 --> 00:02:29.680 a celebrity that was on a TV show that I watched 00:02:29.680 --> 00:02:31.860 at the time, maybe have it. But I didn't really 00:02:31.860 --> 00:02:34.879 know at all what it was. I went with my mum, 00:02:35.000 --> 00:02:39.219 like I say, I was only 18. And I luckily saw 00:02:39.219 --> 00:02:41.659 a really great consultant. She was really supportive, 00:02:41.919 --> 00:02:45.509 really helpful. She told me... We went through 00:02:45.509 --> 00:02:47.770 my symptoms and she asked me what I thought I 00:02:47.770 --> 00:02:50.050 had and I thought I had IBS because that was 00:02:50.050 --> 00:02:53.430 the only thing I knew that was like that. She 00:02:53.430 --> 00:02:56.009 said then that I had IBD that had Crohn's disease 00:02:56.009 --> 00:02:59.830 and she gave me a leaflet which then I found 00:02:59.830 --> 00:03:01.449 really helpful actually because she then said 00:03:01.449 --> 00:03:03.830 to go away, read the leaflets, read about the 00:03:03.830 --> 00:03:06.330 disease and then go back to them with any questions 00:03:06.330 --> 00:03:08.030 that you may have which actually was a really 00:03:08.030 --> 00:03:12.229 helpful process. What were your first symptoms? 00:03:12.310 --> 00:03:15.349 What were the symptoms that made you think, wow, 00:03:15.409 --> 00:03:17.789 something is seriously wrong here and I better 00:03:17.789 --> 00:03:22.050 get this checked out? Yeah, so I... so like I 00:03:22.050 --> 00:03:25.110 say so I was eight had just turned 18 I was trying 00:03:25.110 --> 00:03:27.629 to learn my do my driving test which took a lot 00:03:27.629 --> 00:03:30.289 of stress out of me I had just started working 00:03:30.289 --> 00:03:33.229 full -time so it was all quite stressful but 00:03:33.229 --> 00:03:35.409 my main symptoms were I was just going to the 00:03:35.409 --> 00:03:38.090 toilet ridiculous amount of times a day about 00:03:38.090 --> 00:03:41.750 20 -25 times a day I would also have no control 00:03:41.750 --> 00:03:44.509 so I remember I used to work somewhere that was 00:03:44.509 --> 00:03:47.090 about an hour's drive away I would drive to work 00:03:47.090 --> 00:03:49.710 and I'd have to rush straight to the toilet because 00:03:49.710 --> 00:03:52.340 I just couldn't make it there'd be times within 00:03:52.340 --> 00:03:54.860 my day that I had to rush to the toilet so it 00:03:54.860 --> 00:03:57.620 was that kind of loose of kind of having no control 00:03:57.620 --> 00:04:00.539 and then also one of my main symptoms was I had 00:04:00.539 --> 00:04:04.919 really achy joints so my knees and my elbows 00:04:04.919 --> 00:04:08.000 were just really tender to the point where I 00:04:08.000 --> 00:04:10.259 remember having to rush out of bed in the night 00:04:10.259 --> 00:04:12.719 to go to the toilet but couldn't quite get myself 00:04:12.719 --> 00:04:16.579 up because I just lost that like strength in 00:04:16.579 --> 00:04:20.189 my elbows. And then I guess the other main symptom 00:04:20.189 --> 00:04:23.529 I had was exhaustion. I was just absolutely exhausted, 00:04:23.870 --> 00:04:27.009 falling asleep in the evening once I got home 00:04:27.009 --> 00:04:30.750 from work, not being able to stay awake and everyone 00:04:30.750 --> 00:04:34.029 thinking that it was a little bit strange and 00:04:34.029 --> 00:04:36.610 then losing weight. I just couldn't keep any 00:04:36.610 --> 00:04:39.980 weight. on at all um to the point where my mum 00:04:39.980 --> 00:04:42.759 used to say to me was i getting food on the way 00:04:42.759 --> 00:04:44.639 home from work and then not eating my dinner 00:04:44.639 --> 00:04:47.759 because i didn't like her food which wasn't the 00:04:47.759 --> 00:04:50.459 case i just my appetite went smaller and smaller 00:04:50.459 --> 00:04:52.920 and smaller i just couldn't couldn't eat much 00:04:52.920 --> 00:04:55.639 so yeah they were probably my main symptoms so 00:04:55.639 --> 00:04:58.850 moving post -diagnosis, you mentioned that you 00:04:58.850 --> 00:05:02.050 went through several treatment options and I 00:05:02.050 --> 00:05:03.930 guess they failed, right? Can you take us a little 00:05:03.930 --> 00:05:06.810 bit through how long or over how many months, 00:05:06.889 --> 00:05:09.430 years you went through treatments, you know, 00:05:09.449 --> 00:05:12.750 biologics, and then also how you navigated that 00:05:12.750 --> 00:05:16.430 part of your disease mentally and physically 00:05:16.430 --> 00:05:20.170 before you got to the point of surgery? Yeah, 00:05:20.170 --> 00:05:22.449 so like I say, so I was diagnosed when I was 00:05:22.449 --> 00:05:27.230 18. I'm now 28. So I went six years trying lots 00:05:27.230 --> 00:05:30.209 of different biological treatments and some would 00:05:30.209 --> 00:05:32.990 work. So my first ever treatment I got put on, 00:05:33.050 --> 00:05:35.949 it lasted and it worked for about a year and 00:05:35.949 --> 00:05:39.189 a half and I felt a lot better. My symptoms improved, 00:05:39.449 --> 00:05:42.550 but then my body just seemed to get... tolerant 00:05:42.550 --> 00:05:45.129 to that and it found a way for my Crohn's to 00:05:45.129 --> 00:05:48.370 come back out. And then kind of after that was 00:05:48.370 --> 00:05:52.170 probably when I didn't really keep much of a 00:05:52.170 --> 00:05:55.449 tolerance to the medication that I was on. So 00:05:55.449 --> 00:05:57.730 I'd go on steroids quite often to try and help 00:05:57.730 --> 00:06:00.089 it, which we all know that unfortunately steroids 00:06:00.089 --> 00:06:03.250 then have the opposite effect. Massive balloon 00:06:03.250 --> 00:06:06.310 face, always feeling hungry, all that horrible 00:06:06.310 --> 00:06:09.230 side effects that steroids have. So yeah, so 00:06:09.230 --> 00:06:11.910 I... It was a good six years that unfortunately 00:06:11.910 --> 00:06:15.990 I was probably on treatments for a year, six 00:06:15.990 --> 00:06:18.470 months, like various different things. And I'd 00:06:18.470 --> 00:06:20.670 kind of got to the point where I had tried all 00:06:20.670 --> 00:06:23.370 the biological treatment that was available in 00:06:23.370 --> 00:06:26.610 my country and for us. So the only option was 00:06:26.610 --> 00:06:29.389 going to be to have a temporary stoma just to 00:06:29.389 --> 00:06:33.689 give my vows that relief. 2020 was when that 00:06:33.689 --> 00:06:38.069 was booked in to Inferi have that. And I just 00:06:38.069 --> 00:06:40.670 got progressively worse before the actual surgery 00:06:40.670 --> 00:06:43.629 that I had to go in and have it sooner because 00:06:43.629 --> 00:06:47.870 my bowels just got so bad that I couldn't leave 00:06:47.870 --> 00:06:51.269 the house. I was just unable to not be with the 00:06:51.269 --> 00:06:55.370 toilet really and stuff. So yes, I had my temporary 00:06:55.370 --> 00:06:59.819 stoma, which was quite a lot. That's then kind 00:06:59.819 --> 00:07:03.120 of resulted in, unfortunately, my Crohn's still 00:07:03.120 --> 00:07:06.600 coming back really with a force when I had my 00:07:06.600 --> 00:07:10.060 temporary stoma. So I then I felt much better 00:07:10.060 --> 00:07:14.540 with a temporary stoma. And I thought it was 00:07:14.540 --> 00:07:16.879 an adjustment, of course, but I felt better. 00:07:16.920 --> 00:07:21.600 But actually, my symptoms inside and my bowels 00:07:21.600 --> 00:07:24.620 were still very inflamed. So it then resulted 00:07:24.620 --> 00:07:29.779 in February. of that year so 2021 I had to have 00:07:29.779 --> 00:07:33.060 emergency surgery which is where I then had my 00:07:33.060 --> 00:07:37.060 whole large intestines and my bum removed and 00:07:37.060 --> 00:07:39.879 a permanent stoma because it was just too inflamed 00:07:39.879 --> 00:07:43.740 really so you got a little bit better you got 00:07:43.740 --> 00:07:47.420 worse again leading up to the surgery how did 00:07:47.420 --> 00:07:50.540 you navigate life because you were pretty young 00:07:50.540 --> 00:07:53.779 right and as a young person There's a lot of 00:07:53.779 --> 00:07:56.300 things you typically want to do in life and do 00:07:56.300 --> 00:08:01.060 in life. How did you navigate that part of sort 00:08:01.060 --> 00:08:04.800 of growing up with this uncertainty and this 00:08:04.800 --> 00:08:08.639 constant fluctuation in your condition? Yeah, 00:08:08.680 --> 00:08:11.639 I mean, I would say it was very hard. I'm very 00:08:11.639 --> 00:08:14.519 lucky I've got really supportive family and friends. 00:08:14.579 --> 00:08:18.500 So they understood as much as they could. But 00:08:18.500 --> 00:08:21.620 I mean, I guess they only really... saw the going 00:08:21.620 --> 00:08:23.480 to the toilet part they didn't really understand 00:08:23.480 --> 00:08:25.740 what it's like living with it I don't think you 00:08:25.740 --> 00:08:28.139 do it until unfortunately you do live with it 00:08:28.139 --> 00:08:33.299 I was luck quite I say quite lucky and but I 00:08:33.299 --> 00:08:36.220 was with my now husband at the time so I didn't 00:08:36.220 --> 00:08:39.139 have to kind of go down the route of a relationship 00:08:39.139 --> 00:08:42.240 a new relationship and things so I had his support 00:08:42.240 --> 00:08:45.620 throughout which was his husband amazing especially 00:08:45.620 --> 00:08:47.759 then when I had my stoma I didn't have to navigate 00:08:48.669 --> 00:08:51.669 two sides of all of it I just had to focus on 00:08:51.669 --> 00:08:54.509 that and him supporting me which was great but 00:08:54.509 --> 00:08:57.230 it definitely my life felt very isolating even 00:08:57.230 --> 00:09:01.570 though I had lots of support I got to the point 00:09:01.570 --> 00:09:04.169 where obviously I didn't want to go out I didn't 00:09:04.169 --> 00:09:08.299 want to socialize I Didn't really even want to 00:09:08.299 --> 00:09:11.240 go on holiday or anything like that because I 00:09:11.240 --> 00:09:14.500 had scenarios where I'd go to, you know, on an 00:09:14.500 --> 00:09:16.580 aeroplane and then need to get to the toilet 00:09:16.580 --> 00:09:19.820 quickly and things. So my world became very, 00:09:19.879 --> 00:09:23.220 very small. I kind of just went to friends and 00:09:23.220 --> 00:09:25.879 family's houses where I knew I had a safe. place 00:09:25.879 --> 00:09:28.639 to go to the toilet if I did go out for the day 00:09:28.639 --> 00:09:31.419 I pre -looked and planned where a toilet was 00:09:31.419 --> 00:09:35.340 so I knew I'd be able to get to a toilet so you 00:09:35.340 --> 00:09:38.320 know I had up to that point been very fortunate 00:09:38.320 --> 00:09:42.720 that never struggled with anxiety panic attacks 00:09:42.720 --> 00:09:45.559 anything like that but by the time my Crohn's 00:09:45.559 --> 00:09:49.460 got really aggressive and affected my life I 00:09:49.460 --> 00:09:52.379 definitely struggled with that I got to the point 00:09:52.379 --> 00:09:54.490 where I couldn't leave the house without having 00:09:54.490 --> 00:09:57.950 a panic attack about thinking about what could 00:09:57.950 --> 00:09:59.850 happen if I was going to mess myself wherever 00:09:59.850 --> 00:10:02.990 I was. It made my working life very hard. I didn't 00:10:02.990 --> 00:10:06.330 feel like a normal new person in the working 00:10:06.330 --> 00:10:09.879 world. Then had to have quite a lot of time off 00:10:09.879 --> 00:10:11.679 sick, which obviously is quite hard to navigate 00:10:11.679 --> 00:10:15.220 with employers. I work in the beauty industry, 00:10:15.340 --> 00:10:17.700 so I would be with clients for a big chunk of 00:10:17.700 --> 00:10:19.539 time, which was then quite hard to navigate. 00:10:19.659 --> 00:10:23.120 So, yeah, I would say overall it was quite a 00:10:23.120 --> 00:10:27.399 hard time with my Crohn's. I mean, I guess the 00:10:27.399 --> 00:10:29.919 flip side to that is since having my stoma as 00:10:29.919 --> 00:10:33.549 much as navigating a stoma. I feel like I have 00:10:33.549 --> 00:10:36.149 a life back with a stoma. So that would guess 00:10:36.149 --> 00:10:38.730 be the only positive with a stoma in comparison 00:10:38.730 --> 00:10:43.169 to my Crohn's disease at least. Yeah. And I'm 00:10:43.169 --> 00:10:45.269 going to ask you about how you're doing in a 00:10:45.269 --> 00:10:48.570 minute. Before we get there, I want to go back 00:10:48.570 --> 00:10:51.370 to the moment where you were told that surgery 00:10:51.370 --> 00:10:53.389 was essentially the only option. So receiving 00:10:53.389 --> 00:10:56.350 an IBD diagnosis is one thing, but then you struggle 00:10:56.350 --> 00:10:58.769 the way you did. And then on top of that, at 00:10:58.769 --> 00:11:01.230 one point, somebody tells you, hey, we need... 00:11:01.470 --> 00:11:03.830 to consider surgery or basically surgery is the 00:11:03.830 --> 00:11:07.210 only option. How did you deal with that from 00:11:07.210 --> 00:11:10.049 a sort of psychological point of view when you 00:11:10.049 --> 00:11:13.250 heard those news that this was actually going 00:11:13.250 --> 00:11:18.549 to happen? I didn't. I totally thought I wouldn't 00:11:18.549 --> 00:11:22.629 need surgery. I fighted against it. I was quite 00:11:22.629 --> 00:11:26.070 stubborn and thought I could change what was 00:11:26.070 --> 00:11:28.090 happening, even though I think deep down I knew 00:11:28.090 --> 00:11:31.779 I couldn't, but I just... wasn't prepared for 00:11:31.779 --> 00:11:34.019 that massive change that I thought was going 00:11:34.019 --> 00:11:37.320 to happen at that point I hadn't really seen 00:11:37.320 --> 00:11:40.720 much on social media with stomas especially with 00:11:40.720 --> 00:11:44.799 younger people so I only had in my head like 00:11:44.799 --> 00:11:47.820 most people I think do elderly people with a 00:11:47.820 --> 00:11:51.139 stoma the idea of poo on your stomach you know 00:11:51.139 --> 00:11:54.340 like all this stuff that I was just I didn't 00:11:54.340 --> 00:11:59.299 want it and I sunk my head down and I said to 00:11:59.299 --> 00:12:02.360 my surgeons that I would do what they felt was 00:12:02.360 --> 00:12:04.759 best but I really didn't want it and was there 00:12:04.759 --> 00:12:07.179 any other options and then I think I had like 00:12:07.179 --> 00:12:11.419 a light bulb moment where I went shopping and 00:12:11.419 --> 00:12:14.100 I just couldn't even last 10 minutes without 00:12:14.100 --> 00:12:16.220 having to rush to the nearest toilet in the shopping 00:12:16.220 --> 00:12:20.200 centre and then I couldn't even make the drive 00:12:20.200 --> 00:12:23.500 home without having to stop and I think there 00:12:23.500 --> 00:12:26.649 was just this like really bizarre cliche light 00:12:26.649 --> 00:12:29.570 bulb moment where I went I can't do this I'm 00:12:29.570 --> 00:12:34.110 gonna have to try it and see what happens really 00:12:34.110 --> 00:12:37.350 and like I say I then that's when they then said 00:12:37.350 --> 00:12:40.190 let's do a temporary one to kind of I guess soften 00:12:40.190 --> 00:12:45.029 it for me to make it a bit of a yeah like a nicer 00:12:45.029 --> 00:12:47.549 feeling knowing that maybe you could go back 00:12:47.549 --> 00:12:52.149 to a normal body which I say that in quotations 00:12:52.149 --> 00:12:55.950 because now I don't see my body as not normal 00:12:55.950 --> 00:12:59.389 but at the time I felt that that was going to 00:12:59.389 --> 00:13:04.389 be really alien and not very nice so yeah I think 00:13:04.389 --> 00:13:08.789 it was a lot but I think the last straw was not 00:13:08.789 --> 00:13:13.169 having a life really and relying on just staying 00:13:13.169 --> 00:13:15.250 in the four walls of your house and having your 00:13:15.250 --> 00:13:17.289 toilet and stuff I just realized I couldn't do 00:13:17.289 --> 00:13:21.710 that so it was like an epiphany triggered by 00:13:22.820 --> 00:13:25.480 Misery, essentially, right? Yeah. That you kind 00:13:25.480 --> 00:13:29.299 of accepted. So you mentioned that back then 00:13:29.299 --> 00:13:32.200 you hadn't really seen a lot of people with ostomies, 00:13:32.200 --> 00:13:34.639 you know, on social media. But interesting enough, 00:13:34.720 --> 00:13:37.879 this has really changed. And I see myself now. 00:13:37.960 --> 00:13:41.360 It's like everybody who sort of shares their 00:13:41.360 --> 00:13:45.539 story or living with ostomy on TikTok, on Instagram, 00:13:45.620 --> 00:13:48.669 seems to have... at least the people that actually 00:13:48.669 --> 00:13:51.149 put themselves out there, seem to be very confident 00:13:51.149 --> 00:13:54.309 in even showing their stoma. And then you are 00:13:54.309 --> 00:13:57.850 basically just as outspoken now. You have no 00:13:57.850 --> 00:14:01.110 issue showing yourself, talking about the stoma. 00:14:01.250 --> 00:14:04.769 So I'm interested to know then what made you 00:14:04.769 --> 00:14:07.169 go from this person who sort of like was very 00:14:07.169 --> 00:14:09.470 timid about it or potentially even embarrassed 00:14:09.470 --> 00:14:13.700 and really not wanting it to... essentially now 00:14:13.700 --> 00:14:17.460 embracing it in the sense that you're very outspoken 00:14:17.460 --> 00:14:19.500 about it. Was that another light bulb moment? 00:14:19.659 --> 00:14:21.940 Did that gradually change? Where did that come 00:14:21.940 --> 00:14:24.679 from? Yeah, so I think it gradually changed. 00:14:24.799 --> 00:14:28.580 So when I had my temporary stoma, it was very 00:14:28.580 --> 00:14:32.220 foreign to me. I didn't really know what I was 00:14:32.220 --> 00:14:35.580 doing. It took a long time and I didn't feel... 00:14:36.190 --> 00:14:40.350 happy with it and I kept saying yes when I get 00:14:40.350 --> 00:14:42.509 my reversal it'll be fine like I kept talking 00:14:42.509 --> 00:14:45.450 about my reversal as if like this was just a 00:14:45.450 --> 00:14:48.789 temporary fix and we would be over it the the 00:14:48.789 --> 00:14:54.169 main moment for me was my surgery in February 00:14:54.169 --> 00:14:58.509 2021 when I had to have then my permanent stoma 00:14:58.509 --> 00:15:02.470 that ended up being an emergency surgery so I 00:15:02.470 --> 00:15:07.250 went down to theatre I was in hospital and they 00:15:07.250 --> 00:15:09.909 were treating my I had an infection so they were 00:15:09.909 --> 00:15:11.750 treating the infection while I was in hospital 00:15:11.750 --> 00:15:16.250 and the plan was to get better and then have 00:15:16.250 --> 00:15:19.750 more surgery in like a month two months time 00:15:19.750 --> 00:15:22.149 once my body was in a better state to be able 00:15:22.149 --> 00:15:28.799 to cope with the surgery but unfortunately literally 00:15:28.799 --> 00:15:30.860 I was just about to be discharged and I didn't 00:15:30.860 --> 00:15:34.620 and that evening I had an abscess which burst 00:15:34.620 --> 00:15:39.480 inside me in my large bowels so I then got rushed 00:15:39.480 --> 00:15:43.840 down to theatre and that's when I had my emergency 00:15:43.840 --> 00:15:48.059 surgery to then have my whole large intestines 00:15:48.059 --> 00:15:52.149 and rectum removed. And that surgery was quite 00:15:52.149 --> 00:15:54.629 intense where obviously it was an emergency. 00:15:55.169 --> 00:15:58.029 I was then in intensive care. They had to then 00:15:58.029 --> 00:16:00.889 go finish the surgery halfway through because 00:16:00.889 --> 00:16:05.110 I was kind of losing grip and other parts of 00:16:05.110 --> 00:16:07.929 my organs were failing. So they had to stop the 00:16:07.929 --> 00:16:10.950 surgery and then go back in the next day. And 00:16:10.950 --> 00:16:14.230 I think when you have like a scenario like that 00:16:14.230 --> 00:16:16.690 and no one wants it, I don't wish it on anyone. 00:16:16.909 --> 00:16:20.620 But I think that... made me then respect my body 00:16:20.620 --> 00:16:23.559 so once I recovered from all of that which was 00:16:23.559 --> 00:16:27.580 a long time I realized one I wanted to share 00:16:27.580 --> 00:16:30.220 my journey because I think if I hadn't buried 00:16:30.220 --> 00:16:33.600 my head for so long I may have not resulted in 00:16:33.600 --> 00:16:37.460 what it did but I never wanted to rush to the 00:16:37.460 --> 00:16:41.740 hospital doctors because I always thought oh 00:16:41.740 --> 00:16:45.100 it'll be fine you know I'm sure it will sort 00:16:45.100 --> 00:16:48.659 itself um now I know that unfortunately it doesn't 00:16:48.659 --> 00:16:51.320 sort itself it's something you need to have medical 00:16:51.320 --> 00:16:55.259 help with and also I think I just in that moment 00:16:55.259 --> 00:16:59.580 then I thought I if I can give something to one 00:16:59.580 --> 00:17:01.860 other person is to give that confidence that 00:17:01.860 --> 00:17:06.319 if you need to have a stoma it will be okay so 00:17:06.319 --> 00:17:08.960 I think that's kind of the moment that I thought 00:17:08.960 --> 00:17:11.460 I want to get this out there I want to show people 00:17:11.460 --> 00:17:14.279 that living with a stoma You can have a normal 00:17:14.279 --> 00:17:18.200 life. You can value it. You kind of respect your 00:17:18.200 --> 00:17:20.200 body more than probably someone who hasn't been 00:17:20.200 --> 00:17:22.519 through a lot of trauma. So yeah, I think that 00:17:22.519 --> 00:17:27.099 was kind of my moment, my epiphany, my life experience 00:17:27.099 --> 00:17:29.500 that kind of resulted in then my change in attitude. 00:17:30.920 --> 00:17:34.500 Yeah, absolutely. You said that now you have 00:17:34.500 --> 00:17:38.940 your life back, but it's not over. So tell me 00:17:38.940 --> 00:17:41.599 a little bit about the... challenges that you're 00:17:41.599 --> 00:17:45.799 experiencing well currently so I had a stage 00:17:45.799 --> 00:17:47.940 where my Crohn's did go into remission which 00:17:47.940 --> 00:17:50.640 was amazing but then unfortunately my Crohn's 00:17:50.640 --> 00:17:54.819 seemed to reappear in my small intestines and 00:17:54.819 --> 00:17:57.539 my consultants were quite confused to how it 00:17:57.539 --> 00:18:00.640 kind of came back but it did so that's why I'm 00:18:00.640 --> 00:18:03.400 now on new Crohn's treatments I've tried a couple 00:18:03.400 --> 00:18:06.700 of since having my stoma surgery and I guess 00:18:06.700 --> 00:18:10.240 naively I thought once you have a stoma you your 00:18:10.240 --> 00:18:13.859 Crohn's, your IBD, whatever you have will disappear 00:18:13.859 --> 00:18:18.019 and that will resolve it. But I learnt the hard 00:18:18.019 --> 00:18:20.700 way that no, it can still come, it can still 00:18:20.700 --> 00:18:23.079 be there and you can still be living with a stoma 00:18:23.079 --> 00:18:27.240 and then all the other effects that any IBD condition 00:18:27.240 --> 00:18:31.519 has. So yeah, I think that's quite hard to juggle 00:18:31.519 --> 00:18:35.299 because a stoma, you kind of fall, it's a bit 00:18:35.299 --> 00:18:39.099 like... any other routine in your life you do 00:18:39.099 --> 00:18:42.539 it does become part of your routine you find 00:18:42.539 --> 00:18:46.400 a way to just make that work with your life but 00:18:46.400 --> 00:18:50.180 when you then have your IBD symptoms with your 00:18:50.180 --> 00:18:53.880 stoma it sometimes heightens it so if you have 00:18:53.880 --> 00:18:57.680 a flare -up say it sometimes can be a lot worse 00:18:57.680 --> 00:18:59.720 with your stoma because then your output can 00:18:59.720 --> 00:19:03.490 affect your stoma and then you get harder pain 00:19:03.490 --> 00:19:06.569 so yeah it is challenging but you know you find 00:19:06.569 --> 00:19:09.890 a way around it that's for sure if you look at 00:19:09.890 --> 00:19:14.250 the person at age 18 diagnosis and the person 00:19:14.250 --> 00:19:17.289 you are today your entire IBD journey so far 00:19:17.289 --> 00:19:21.450 how has it changed you as an individual as a 00:19:21.450 --> 00:19:23.829 human being you think I think I'm a lot more 00:19:23.829 --> 00:19:29.690 resilient to life now I definitely try and find 00:19:29.690 --> 00:19:33.690 a more positive outlook on anything I think when 00:19:33.690 --> 00:19:36.509 you've been so low you appreciate the smallness 00:19:36.509 --> 00:19:39.329 of things which I actually really love that that 00:19:39.329 --> 00:19:42.789 it gives you that because I think just you know 00:19:42.789 --> 00:19:45.450 there was a stage when I couldn't even walk after 00:19:45.450 --> 00:19:48.150 my surgery so being able to just take myself 00:19:48.150 --> 00:19:51.210 and go for a nice long walk with the dog is is 00:19:51.210 --> 00:19:54.650 so nice so I think the strength and the resilience 00:19:54.650 --> 00:19:58.910 is the yeah the main things I'd say. It's a good 00:19:58.910 --> 00:20:01.130 start. Yeah. Really good start. It'll keep you 00:20:01.130 --> 00:20:04.730 going, essentially. Yeah. So in your case, essentially, 00:20:04.789 --> 00:20:08.990 there was a part where you were told that a surgery 00:20:08.990 --> 00:20:10.869 would need to happen, but then you had an emergent 00:20:10.869 --> 00:20:13.289 surgery, which kind of just crept up on you and 00:20:13.289 --> 00:20:14.589 you didn't really have any say in the matter, 00:20:14.650 --> 00:20:18.809 right? It was a life -changing event. To the 00:20:18.809 --> 00:20:22.490 people out there who know that they may have 00:20:22.490 --> 00:20:27.470 to undergo surgery for a permanent ostomy, who 00:20:27.470 --> 00:20:31.089 are afraid, who might be embarrassed, who are 00:20:31.089 --> 00:20:34.849 just completely in the unknown of what life will 00:20:34.849 --> 00:20:39.230 be like, what is your message to them? What would 00:20:39.230 --> 00:20:42.329 you tell them to sort of calm them down a little 00:20:42.329 --> 00:20:44.930 bit based on your own experience? It will be 00:20:44.930 --> 00:20:47.789 okay. That will be my main thing. It will all 00:20:47.789 --> 00:20:51.730 be okay. It may not, you know... fix overnight 00:20:51.730 --> 00:20:55.089 it may take longer than others certainly don't 00:20:55.089 --> 00:20:59.150 compare to other people with a stoma but you 00:20:59.150 --> 00:21:03.430 also that community within social media is amazing 00:21:03.430 --> 00:21:05.529 if you need to lean on people who will understand 00:21:05.529 --> 00:21:09.269 but I would definitely say it will get better 00:21:09.269 --> 00:21:13.509 um you will get a life and you'll be able to 00:21:13.509 --> 00:21:17.430 live as normal as you can there will be times 00:21:17.430 --> 00:21:20.319 obviously there'll be bad days but There'll be 00:21:20.319 --> 00:21:22.680 more good days than bad days. That's what I would, 00:21:22.759 --> 00:21:25.359 yeah, that's the biggest thing that I think I 00:21:25.359 --> 00:21:29.339 can take from it is I now can't really like, 00:21:29.420 --> 00:21:31.700 it takes a lot to reflect and think, oh, actually 00:21:31.700 --> 00:21:33.700 that was a bad day because now there's so many 00:21:33.700 --> 00:21:36.799 better days than there was previously. So from 00:21:36.799 --> 00:21:39.039 my experience, that's what I would say that there 00:21:39.039 --> 00:21:41.920 is a light at the end of that tunnel and you 00:21:41.920 --> 00:21:45.720 are going to, you will get there. A lot of self 00:21:45.720 --> 00:21:49.119 -care. positive reinforcement that comes from 00:21:49.119 --> 00:21:53.859 within you, but then having sort of supporting 00:21:53.859 --> 00:21:56.819 characters around you can be a large contributing 00:21:56.819 --> 00:21:59.640 factor on how well you deal with the situation. 00:21:59.900 --> 00:22:02.019 You mentioned that your family was there for 00:22:02.019 --> 00:22:05.740 you, especially also your husband, which I couldn't... 00:22:06.119 --> 00:22:08.279 deduct, I guess, that he was sort of the central 00:22:08.279 --> 00:22:10.859 main supporting character for you, right? Yes. 00:22:11.079 --> 00:22:14.440 Can you tell me a little bit about the different 00:22:14.440 --> 00:22:19.400 ways that he helped you and also how he sort 00:22:19.400 --> 00:22:22.019 of got, for the lack of a better word, onboarded 00:22:22.019 --> 00:22:24.819 to Crohn's disease? Did you discuss this together? 00:22:25.079 --> 00:22:27.660 Did you make plans together? Were you completely 00:22:27.660 --> 00:22:30.480 able to be open with him about everything from 00:22:30.480 --> 00:22:33.460 the beginning? What was that dynamic like with 00:22:33.460 --> 00:22:37.490 him in particular for you? I think like I say 00:22:37.490 --> 00:22:40.450 very luckily we've been together since we were 00:22:40.450 --> 00:22:43.809 at school so um our relationship by the time 00:22:43.809 --> 00:22:46.789 my symptoms with my Crohn's and then definitely 00:22:46.789 --> 00:22:50.690 by the time I needed my stoma we were in a very 00:22:50.690 --> 00:22:54.109 solid position and we were very open with each 00:22:54.109 --> 00:22:59.650 other anyway so I think with my Crohn's I had 00:22:59.650 --> 00:23:02.750 to he could obviously see the physical symptoms 00:23:02.750 --> 00:23:07.480 but I did have to kind of try and explain to 00:23:07.480 --> 00:23:10.819 him the exhaustion, you know, all that side of 00:23:10.819 --> 00:23:13.980 it. But when it came to my stoma, he was the 00:23:13.980 --> 00:23:16.559 one that was kind of saying that I needed to 00:23:16.559 --> 00:23:18.880 go for it when I was kind of against it, because 00:23:18.880 --> 00:23:22.079 I think he could see the bigger picture after 00:23:22.079 --> 00:23:25.279 the surgery, whereas I was very stuck on just 00:23:25.279 --> 00:23:27.680 the surgery and I couldn't see the life after 00:23:27.680 --> 00:23:32.250 a surgery. Whereas for him, like I say, We didn't 00:23:32.250 --> 00:23:34.890 go out much anymore. We didn't go anywhere together 00:23:34.890 --> 00:23:36.990 because I was so worried about needing to go 00:23:36.990 --> 00:23:40.109 to the toilet. So he was really supportive with 00:23:40.109 --> 00:23:44.410 listening to me and not pushing me, but also 00:23:44.410 --> 00:23:49.470 trying to show and explain to me what he felt 00:23:49.470 --> 00:23:54.740 would be the positives with it, I guess. And 00:23:54.740 --> 00:23:56.660 basically what you just said there, because I 00:23:56.660 --> 00:23:58.460 was going to ask you, what would you tell people 00:23:58.460 --> 00:24:01.779 who know somebody with Crohn's or who knows somebody 00:24:01.779 --> 00:24:03.059 who has to go through surgery, how should they 00:24:03.059 --> 00:24:05.019 behave? But I think they should just follow what 00:24:05.019 --> 00:24:06.900 your husband did, right? I mean, it really seems 00:24:06.900 --> 00:24:11.019 like he had it down and the right attitude. Yeah. 00:24:11.119 --> 00:24:13.359 Or is there anything else? Yeah. Yeah. And I 00:24:13.359 --> 00:24:16.940 think everyone's going to react differently to 00:24:16.940 --> 00:24:20.980 it. So I think it's just remembering that. just 00:24:20.980 --> 00:24:23.440 to be a supportive person there and support that 00:24:23.440 --> 00:24:26.140 person because it's a lot for the individual 00:24:26.140 --> 00:24:28.400 that's going through it it's obviously a lot 00:24:28.400 --> 00:24:31.380 for everyone around them as well but yeah I think 00:24:31.380 --> 00:24:35.759 my whole family were just on board they were 00:24:35.759 --> 00:24:38.740 there they they got me little care packages they 00:24:38.740 --> 00:24:41.720 helped me every step of the way and I think that 00:24:41.720 --> 00:24:44.839 goes that goes a long way goes a very very long 00:24:44.839 --> 00:24:50.450 way we As IBD warriors, we often have explaining 00:24:50.450 --> 00:24:54.509 to do. And most of the time it's to educate people, 00:24:54.650 --> 00:24:57.130 to help them understand. Sometimes it's to sort 00:24:57.130 --> 00:25:00.690 of fight back against some very common misconceptions. 00:25:01.869 --> 00:25:05.009 I would like to hear from you what you think 00:25:05.009 --> 00:25:09.750 are common misconceptions in regards to Crohn's, 00:25:09.750 --> 00:25:14.390 but then also to living with a stoma. With Crohn's, 00:25:14.390 --> 00:25:17.539 I'd say... The massive common misconception is 00:25:17.539 --> 00:25:21.059 it's just about going to the toilet and pooing. 00:25:21.119 --> 00:25:25.500 And I certainly, it's a lot more than that. Like 00:25:25.500 --> 00:25:30.859 I say, it drains you, the fatigue, the mental 00:25:30.859 --> 00:25:33.839 side of it. There's so much more to it than just 00:25:33.839 --> 00:25:38.900 what people see as the physical symptoms. And 00:25:38.900 --> 00:25:40.779 I think that's quite an important thing because 00:25:40.779 --> 00:25:43.099 lots of people also like to then joke about it. 00:25:43.180 --> 00:25:45.480 I know when I was going through it, some of my 00:25:45.480 --> 00:25:48.119 close relatives and stuff might joke and say 00:25:48.119 --> 00:25:50.099 oh well you're just always stuck on the toilet 00:25:50.099 --> 00:25:52.960 but that can be quite then mentally hard for 00:25:52.960 --> 00:25:55.700 someone who there's a more to it and then with 00:25:55.700 --> 00:25:58.880 the stoma I guess like I said earlier I feel 00:25:58.880 --> 00:26:02.200 like the big thing is that it's something you 00:26:02.200 --> 00:26:04.779 get when you're older it's for older people it's 00:26:04.779 --> 00:26:08.960 smelly it's not very clean and it's totally not 00:26:08.960 --> 00:26:12.269 that obviously anyone can get affected from a 00:26:12.269 --> 00:26:14.789 baby first into this world until the end of our 00:26:14.789 --> 00:26:18.849 lives but also the way that the technology and 00:26:18.849 --> 00:26:23.069 the medical world is going it's not smiley it's 00:26:23.069 --> 00:26:27.049 not it's you know you don't notice it and everything 00:26:27.049 --> 00:26:29.390 so i guess they're the main for both of them 00:26:29.390 --> 00:26:33.589 i guess yeah no absolutely and and i think i 00:26:33.589 --> 00:26:35.750 think some of those misconceptions they also 00:26:35.750 --> 00:26:39.589 freak people out especially those who will have 00:26:39.589 --> 00:26:44.539 to look well towards a life with a stoma. And 00:26:44.539 --> 00:26:46.539 I know everybody's different. Everybody has different 00:26:46.539 --> 00:26:51.299 challenges. But tell us a little bit about... 00:26:52.269 --> 00:26:55.049 what life is like really with the stoma, right? 00:26:55.130 --> 00:26:57.009 Because I mean, some people they deal with rashes, 00:26:57.049 --> 00:26:59.390 some people they're afraid, you know, of leaks. 00:26:59.970 --> 00:27:02.369 What are your techniques? Do you experience any 00:27:02.369 --> 00:27:04.450 of those issues? And what would you tell people 00:27:04.450 --> 00:27:06.130 who are concerned primarily really about the 00:27:06.130 --> 00:27:09.309 factors surrounding the actual stoma and the 00:27:09.309 --> 00:27:11.490 sort of the changing of it, the maintenance? 00:27:12.430 --> 00:27:15.410 Yeah. So, I mean, it is daunting and there's 00:27:15.410 --> 00:27:17.069 no point taking that away from an individual. 00:27:17.109 --> 00:27:20.109 I think you're entitled to feel scared and daunted 00:27:20.109 --> 00:27:23.349 with that first bit. But I think, like I say, 00:27:23.470 --> 00:27:27.309 the more you live with it, the more it just becomes 00:27:27.309 --> 00:27:30.130 second nature. I remember my bag changes when 00:27:30.130 --> 00:27:33.410 I first had my stoma would take me 10, 15 minutes. 00:27:33.450 --> 00:27:36.410 Now, I think it only takes me a minute, if that, 00:27:36.490 --> 00:27:40.190 like it's such a quick process. It takes time, 00:27:40.250 --> 00:27:45.069 but you get there. I think in England we have 00:27:45.069 --> 00:27:47.829 stoma nurses, which I assume everywhere has. 00:27:48.089 --> 00:27:51.089 I would lean on them as much as possible because... 00:27:51.640 --> 00:27:54.700 I had a lot of irritation around my stoma. The 00:27:54.700 --> 00:27:57.980 skin was very rashy and sore. And it just takes 00:27:57.980 --> 00:28:00.539 finding the right supplies that work for you. 00:28:00.819 --> 00:28:03.180 But again, like I say, there's so much out there 00:28:03.180 --> 00:28:05.740 that there's always something that you will find 00:28:05.740 --> 00:28:09.480 that will help soothe it. Leaks, that can be 00:28:09.480 --> 00:28:12.000 a challenging one. Many a times I've woke up 00:28:12.000 --> 00:28:15.279 letting my own poo during the night. It isn't 00:28:15.279 --> 00:28:21.809 the easiest. But again, I think... Sometimes 00:28:21.809 --> 00:28:24.690 just kind of being prepared. So I like to sleep 00:28:24.690 --> 00:28:28.029 with mattress protectors and everything underneath. 00:28:28.130 --> 00:28:30.529 So I know that when it does happen in the night, 00:28:30.589 --> 00:28:33.569 I can just take them away and it means it's a 00:28:33.569 --> 00:28:35.849 bit of a quicker process to clean up. During 00:28:35.849 --> 00:28:38.289 the day, you start to get to the point where 00:28:38.289 --> 00:28:40.450 you can tell if something, if it's starting to 00:28:40.450 --> 00:28:42.509 leak, it gets quite itchy where it's like burning 00:28:42.509 --> 00:28:46.130 and you can kind of tell by the signs. So I think 00:28:46.130 --> 00:28:48.150 really, unfortunately, it's just living with 00:28:48.150 --> 00:28:51.210 it and then you start to know your own. signs 00:28:51.210 --> 00:28:57.690 but definitely not to get like give up with each 00:28:57.690 --> 00:29:02.029 stage there will always be a way around it there's 00:29:02.029 --> 00:29:05.410 been times when I've literally had to change 00:29:05.410 --> 00:29:07.789 my bag six times because it's leaked and I've 00:29:07.789 --> 00:29:10.990 been in absolute tears thinking this is it it's 00:29:10.990 --> 00:29:13.349 never gonna I'm never gonna have a life but actually 00:29:13.349 --> 00:29:15.250 then I've got in contact with my stoma nurses 00:29:15.250 --> 00:29:18.750 we found new products they've worked great and 00:29:18.750 --> 00:29:22.410 then touchwood it's been absolutely fine and 00:29:22.410 --> 00:29:26.910 i haven't had many leaks so yeah i think it's 00:29:26.910 --> 00:29:29.650 just working with the people around you to help 00:29:29.650 --> 00:29:32.789 you and finding the right stuff for you but you 00:29:32.789 --> 00:29:38.130 will get there So it's not just about not losing 00:29:38.130 --> 00:29:41.190 courage and persisting, but about seeking professional 00:29:41.190 --> 00:29:43.930 help if that's available. I like what you said 00:29:43.930 --> 00:29:47.289 there. I think it's true that I learn more and 00:29:47.289 --> 00:29:51.390 more about ostomy nurses that are really there 00:29:51.390 --> 00:29:55.289 to help people and share tips and tricks. So 00:29:55.289 --> 00:29:59.069 it's not just about... you know taking all the 00:29:59.069 --> 00:30:03.049 burden on one's own shoulders but to open up 00:30:03.049 --> 00:30:04.730 and have the courage to just seek out help because 00:30:04.730 --> 00:30:08.029 typically at least most places help is there 00:30:08.029 --> 00:30:13.470 to you know to guide you for the most basic things 00:30:13.470 --> 00:30:17.109 like changing the bags or finding the right products 00:30:17.109 --> 00:30:19.049 definitely and I guess the thing is to remember 00:30:19.049 --> 00:30:21.690 that they've seen everything because there's 00:30:21.690 --> 00:30:24.430 times when you think you don't want to go because 00:30:25.609 --> 00:30:27.769 you know you feel embarrassed with your stoma 00:30:27.769 --> 00:30:30.910 nurses but actually they've seen everything they 00:30:30.910 --> 00:30:34.269 know everything so and if they don't they will 00:30:34.269 --> 00:30:37.369 get they will find the help for you and so yeah 00:30:37.369 --> 00:30:40.069 I would say they have been a really good main 00:30:40.069 --> 00:30:43.970 protocol and then of course anyone else in the 00:30:43.970 --> 00:30:46.529 community whether you've got people you know 00:30:46.529 --> 00:30:49.069 or reaching out to people online can really help 00:30:49.069 --> 00:30:51.849 as well with sharing what products work for everyone 00:30:51.849 --> 00:30:54.210 what stuff might help that really helps as well 00:30:54.990 --> 00:31:00.190 If I approach you and I tell you life with a 00:31:00.190 --> 00:31:04.849 stoma, it's got to be so limited what I can do. 00:31:04.990 --> 00:31:09.309 What's your response? It's definitely not. I 00:31:09.309 --> 00:31:14.650 honestly thought the same, but actually I traveled 00:31:14.650 --> 00:31:17.710 more after my stoma surgery once I'd recovered 00:31:17.710 --> 00:31:20.950 than I had in the last like five years. So I 00:31:20.950 --> 00:31:25.980 saw more of the world. since because I can control 00:31:25.980 --> 00:31:28.980 my stoma more I'm able to empty it before I go 00:31:28.980 --> 00:31:31.960 somewhere it can fill up and I can then get to 00:31:31.960 --> 00:31:36.519 a toilet without a rush I'm able to now go to 00:31:36.519 --> 00:31:39.460 the cinemas and watch a whole movie and not have 00:31:39.460 --> 00:31:42.279 to get up and go to the toilet yeah I just think 00:31:42.279 --> 00:31:45.420 that's one of the key things is it's definitely 00:31:45.420 --> 00:31:49.960 not you you get so much back in my opinion to 00:31:49.960 --> 00:31:53.539 what I did when I had my Crohn's and it was in 00:31:53.539 --> 00:31:57.799 a flare and even though I still have Crohn's 00:31:57.799 --> 00:32:03.559 because I have my stoma it I have more control 00:32:03.559 --> 00:32:07.339 myself than I did before so yeah I would definitely 00:32:07.339 --> 00:32:11.190 say no that's not that is not true Very, very 00:32:11.190 --> 00:32:14.150 good. And this no is actually a very encouraging 00:32:14.150 --> 00:32:18.650 no, right? Because like you just said, I think 00:32:18.650 --> 00:32:22.369 your life has most likely changed a lot since 00:32:22.369 --> 00:32:25.710 the time where you were experimenting with biologics 00:32:25.710 --> 00:32:29.670 and building resistance. And I'm sure, like you 00:32:29.670 --> 00:32:31.890 just mentioned, you're able to do so much more 00:32:31.890 --> 00:32:34.849 than when you try to experiment with treatments. 00:32:35.789 --> 00:32:39.210 If you could go back to the day you were diagnosed 00:32:39.210 --> 00:32:44.210 and speak to your 18 -year -old self, what would 00:32:44.210 --> 00:32:49.009 you say? I would just tell her that everything's 00:32:49.009 --> 00:32:52.410 going to be okay. Everything will work out and 00:32:52.410 --> 00:32:56.329 you're going to be okay. You've got this. And 00:32:56.329 --> 00:32:59.049 then we want to end by looking forward. And it's 00:32:59.049 --> 00:33:03.180 more speculating than... sort of making short 00:33:03.180 --> 00:33:06.180 statements, but I would like to hear from you. 00:33:08.059 --> 00:33:11.819 Do you think that in our lifetime, we will come 00:33:11.819 --> 00:33:17.640 across a cure for IBD? I hope we do. I think 00:33:17.640 --> 00:33:21.059 we're forever moving forward. The stuff that 00:33:21.059 --> 00:33:26.170 we... years ago obviously weren't able to control 00:33:26.170 --> 00:33:29.690 whereas now we are able to cure things even with 00:33:29.690 --> 00:33:35.390 the world of IBD and stomas they've evolved so 00:33:35.390 --> 00:33:38.029 much since there's always new drugs and stuff 00:33:38.029 --> 00:33:41.230 so I like to think that we might get to the point 00:33:41.230 --> 00:33:45.230 where we can have something that will cure it 00:33:45.230 --> 00:33:49.130 or at least prevent it happening Yeah, I like 00:33:49.130 --> 00:33:52.130 to think. I mean, I don't know if I can swear 00:33:52.130 --> 00:33:55.630 that it definitely will happen, but I would hope 00:33:55.630 --> 00:33:58.309 for generations to come that they don't have 00:33:58.309 --> 00:34:00.910 to go through half the stuff that our generations 00:34:00.910 --> 00:34:04.660 have had to go through. A positive outlook. It 00:34:04.660 --> 00:34:06.920 can help. A positive outlook is what we like 00:34:06.920 --> 00:34:11.519 to end on, on the show as well. And I want to 00:34:11.519 --> 00:34:13.900 commend you for what you're doing online as well. 00:34:14.139 --> 00:34:18.099 Every time I see people like you who open up 00:34:18.099 --> 00:34:21.489 to the world about... their condition, living 00:34:21.489 --> 00:34:25.010 with a stoma. I feel super inspired and I do 00:34:25.010 --> 00:34:27.949 know that it really is making a difference in 00:34:27.949 --> 00:34:30.349 other people's lives, especially people who go 00:34:30.349 --> 00:34:32.570 through the same thing. So keep doing what you're 00:34:32.570 --> 00:34:34.909 doing because I think it's awesome. And I also 00:34:34.909 --> 00:34:37.369 want to thank you so much for talking to me today. 00:34:37.550 --> 00:34:40.090 This was a very inspiring conversation and I 00:34:40.090 --> 00:34:41.869 wish you nothing but the best and continuing 00:34:41.869 --> 00:34:44.170 luck and hope that the Crohn's stays under control. 00:34:44.570 --> 00:34:47.590 And thank you again for... for being with me 00:34:47.590 --> 00:34:49.449 today. No, thank you very much for letting me 00:34:49.449 --> 00:34:52.510 share my journey. And if anyone ever needs to 00:34:52.510 --> 00:34:55.309 reach out, I'm here as an open to help anyone. 00:34:55.429 --> 00:34:59.010 So yeah, thank you for this opportunity. That's 00:34:59.010 --> 00:35:01.429 it for today's episode of Kaleidos Unfiltered. 00:35:01.929 --> 00:35:04.889 I'm Frank Tabering. And if this hit home or hit 00:35:04.889 --> 00:35:07.730 your gut, do us a favor, subscribe to the show 00:35:07.730 --> 00:35:10.889 and follow us at Kaleidos Unfiltered on YouTube, 00:35:11.090 --> 00:35:14.469 Substack, Instagram, Threads, TikTok and Reddit. 00:35:14.769 --> 00:35:16.900 We'll see you soon. for more inspiring stories 00:35:16.900 --> 00:35:18.119 from the bathroom floor.