WEBVTT 00:00:02.299 --> 00:00:05.240 It was so hard because I kept thinking okay you 00:00:05.240 --> 00:00:07.860 know I'm alright at the moment but tomorrow I 00:00:07.860 --> 00:00:11.339 could be have a flare and I ended up it took 00:00:11.339 --> 00:00:14.220 such a toll on my mental health because I was 00:00:14.220 --> 00:00:16.079 just sort of struggling thinking I don't know 00:00:16.079 --> 00:00:18.079 how it's going to be that I have actually been 00:00:18.079 --> 00:00:20.719 on antidepressants now for six years because 00:00:20.719 --> 00:00:23.899 I was in a very dark place thinking that the 00:00:23.899 --> 00:00:27.000 colitis was controlling my life thinking If I 00:00:27.000 --> 00:00:29.339 was making plans, I'd have to cancel everything 00:00:29.339 --> 00:00:32.280 because of how I was feeling. And it was so tiring 00:00:32.280 --> 00:00:35.320 putting on that clown face all the time. This 00:00:35.320 --> 00:00:38.460 is Jess, who got diagnosed with ulcerative colitis 00:00:38.460 --> 00:00:43.280 at age 32 in New Forest, UK. Jess's symptoms 00:00:43.280 --> 00:00:46.560 were first dismissed as IBS. But when the bleeding 00:00:46.560 --> 00:00:49.219 and weight loss spiraled out of control, she 00:00:49.219 --> 00:00:53.520 knew she faced an even uglier beast. Today, Jess 00:00:53.520 --> 00:00:56.369 tells us how she ended up with a stoma. a new 00:00:56.369 --> 00:00:59.090 mindset and a mission to help others through 00:00:59.090 --> 00:01:02.590 the struggle that is IBD. This is the Colitis 00:01:02.590 --> 00:01:05.010 Unfiltered podcast. My name is Frank Tabering 00:01:05.010 --> 00:01:08.769 and Jess, welcome to the show. Hello, thank you 00:01:08.769 --> 00:01:13.609 for having me. So Jess, ulcerative colitis, that 00:01:13.609 --> 00:01:17.250 was your diagnosis. Let's go back to a little 00:01:17.250 --> 00:01:20.849 bit before and how it all started. Tell me a 00:01:20.849 --> 00:01:23.819 little bit about... When you noticed that something 00:01:23.819 --> 00:01:27.060 was wrong or what your first symptoms were? So 00:01:27.060 --> 00:01:30.599 going back, I always remember when I was probably 00:01:30.599 --> 00:01:34.500 in my 20s, I always sort of had tummy problems. 00:01:34.840 --> 00:01:37.239 And then I'd go to the doctors and that and they 00:01:37.239 --> 00:01:40.420 would always say to me, it's IBS. But I could 00:01:40.420 --> 00:01:43.870 just never really sort of... get that under control 00:01:43.870 --> 00:01:46.530 but i just thought maybe it was my diet maybe 00:01:46.530 --> 00:01:50.189 um it might have been something to do with environmental 00:01:50.189 --> 00:01:54.010 factors i don't know and then um two years previous 00:01:54.010 --> 00:01:57.250 to myself getting diagnosed my brother got ulcerative 00:01:57.250 --> 00:02:01.849 colitis in 2009 and then he was rushed to hospital 00:02:01.849 --> 00:02:08.789 and then one day it was just so random i um Just 00:02:08.789 --> 00:02:13.210 ended up, out of nowhere, I felt okay. I just 00:02:13.210 --> 00:02:17.669 ended up passing mucus. And I literally, I thought 00:02:17.669 --> 00:02:20.849 I'd actually messed myself. I was laughing and 00:02:20.849 --> 00:02:23.770 I thought, what's this? And then from there, 00:02:23.870 --> 00:02:26.990 I then started, over the next couple of days, 00:02:27.189 --> 00:02:29.710 I started feeling really tired. I then was starting 00:02:29.710 --> 00:02:33.689 to pass blood. I was like in pain. And then from 00:02:33.689 --> 00:02:35.969 there, it sort of set the ball rolling where 00:02:35.969 --> 00:02:38.849 I started feeling unwell. I spoke to my brother 00:02:38.849 --> 00:02:44.289 and he was like, it sounds like maybe you should 00:02:44.289 --> 00:02:46.409 go to the doctors, go to A &E. But I was like, 00:02:46.509 --> 00:02:51.129 no, it can't be. But I then set the process and 00:02:51.129 --> 00:02:53.610 it took four months for them to diagnose me because 00:02:53.610 --> 00:02:55.949 I first of all went to the doctor. I had an internal 00:02:55.949 --> 00:03:01.469 examination. They then were giving me some suppositories 00:03:01.469 --> 00:03:04.650 at first. Then they were basically just saying 00:03:04.650 --> 00:03:08.150 that I had to wait to have a camera. to be assessed 00:03:08.150 --> 00:03:12.830 on what it was. So it took four months for the 00:03:12.830 --> 00:03:14.889 diagnosis to happen? Yes, because I had to wait 00:03:14.889 --> 00:03:17.830 for the camera appointment to come through. But 00:03:17.830 --> 00:03:19.969 in my mind, I sort of knew, I was thinking because 00:03:19.969 --> 00:03:23.349 I was losing blood every day and I was like losing 00:03:23.349 --> 00:03:26.550 weight, I was sort of understood all the symptoms. 00:03:26.870 --> 00:03:29.330 It was like I sort of knew and I kept phoning 00:03:29.330 --> 00:03:31.729 the hospital thinking, have you got any cancellations, 00:03:31.729 --> 00:03:34.370 anything? Because I was at the point where I 00:03:34.370 --> 00:03:36.770 was like, I was in so much pain and losing so 00:03:36.770 --> 00:03:40.740 much blood and weight, etc. that I was just so 00:03:40.740 --> 00:03:43.139 desperate for the camera. And as soon as they 00:03:43.139 --> 00:03:44.840 gave me the camera, they told me straight away, 00:03:44.939 --> 00:03:47.599 yes, it is that. So most people, when they're 00:03:47.599 --> 00:03:50.659 diagnosed with IBD, colitis, or Crohn's, they 00:03:50.659 --> 00:03:52.759 are really not familiar with the disease. In 00:03:52.759 --> 00:03:56.139 your case, having an older brother who has colitis 00:03:56.139 --> 00:03:59.759 as well, you were aware of what it was. So when 00:03:59.759 --> 00:04:03.020 the doctor broke the news to you that you also 00:04:03.020 --> 00:04:05.939 had ulcerative colitis, as somebody who was familiar 00:04:05.939 --> 00:04:09.629 with the term, what went through your mind? Well 00:04:09.629 --> 00:04:12.469 I was really like I was just thinking oh my god 00:04:12.469 --> 00:04:15.050 no I just at the time I was I was in so much 00:04:15.050 --> 00:04:19.050 pain thinking how can I navigate this how can 00:04:19.050 --> 00:04:21.870 I live with this because my brother has never 00:04:21.870 --> 00:04:24.970 had it as severe as me so I was like thinking 00:04:24.970 --> 00:04:26.850 god I don't remember him saying about how much 00:04:26.850 --> 00:04:29.389 he was bleeding like this and then I kept seeing 00:04:29.389 --> 00:04:32.389 him that he was okay and his flare -ups weren't 00:04:32.389 --> 00:04:35.529 so bad so I was thinking but why is it sort of 00:04:35.529 --> 00:04:39.310 affecting me even more. and then just mentally 00:04:39.310 --> 00:04:41.910 it just took a really big toll on me mentally 00:04:41.910 --> 00:04:46.129 and so you mentioned it navigating flares how 00:04:46.129 --> 00:04:49.029 did that continue for you now post of your diagnosis 00:04:49.029 --> 00:04:52.620 talk To me, a little bit about treatment plans 00:04:52.620 --> 00:04:56.000 and then how the disease or potentially disease 00:04:56.000 --> 00:04:59.120 management evolved for you. So from then, as 00:04:59.120 --> 00:05:01.379 soon as they told me that I'd had colitis, they 00:05:01.379 --> 00:05:03.939 put me on the prednisolone steroids, gave me 00:05:03.939 --> 00:05:08.480 the rectal foam, the suppositories. I hated the 00:05:08.480 --> 00:05:10.779 steroids, but I knew that I had to be on them 00:05:10.779 --> 00:05:14.139 because I was just like, just... in so much pain 00:05:14.139 --> 00:05:18.740 but I then worked very good um to me um and I 00:05:18.740 --> 00:05:20.480 met I had a lot of time off work I think all 00:05:20.480 --> 00:05:22.860 you know I was off work for about 10 weeks and 00:05:22.860 --> 00:05:26.180 then I went back to work very slowly sort of 00:05:26.180 --> 00:05:29.660 reduced hours and then it was just that process 00:05:29.660 --> 00:05:32.860 of weeding myself off starting on the um produce 00:05:32.860 --> 00:05:35.160 alone at like eight tablets a week and then weaning 00:05:35.160 --> 00:05:39.870 down and then once that flare had gone and I'd 00:05:39.870 --> 00:05:43.050 got my head around thinking okay now I have this 00:05:43.050 --> 00:05:45.350 and then it's like I don't know when my next 00:05:45.350 --> 00:05:47.769 flare will be could be and it was always that 00:05:47.769 --> 00:05:51.110 unknowing of Could it be tomorrow? Could it be 00:05:51.110 --> 00:05:53.290 in a month? So sort of from there. But in my 00:05:53.290 --> 00:05:55.750 mind, I kept thinking, right, well, I just have 00:05:55.750 --> 00:05:59.449 to prepare myself at all times. Because how it 00:05:59.449 --> 00:06:05.370 comes on so quick, you are just not at all prepared 00:06:05.370 --> 00:06:09.550 for when you get a flare up. And obviously, that 00:06:09.550 --> 00:06:13.170 treatment path didn't really... pull you into 00:06:13.170 --> 00:06:15.649 remission right how did how did this continue 00:06:15.649 --> 00:06:18.529 so from there for some reason every three years 00:06:18.529 --> 00:06:21.529 i would then have a flare and then i was back 00:06:21.529 --> 00:06:25.290 on like the predisalone and um then it would 00:06:25.290 --> 00:06:28.290 sort of that would help and then over time i 00:06:28.290 --> 00:06:30.629 become just so immune to the predisalone so then 00:06:30.629 --> 00:06:34.379 they set me on i was on um i'm really bad all 00:06:34.379 --> 00:06:36.379 the long names but they put me on all the different 00:06:36.379 --> 00:06:39.720 medications i was on the drip infusions i was 00:06:39.720 --> 00:06:44.379 on the adlimab um just everything and every time 00:06:44.379 --> 00:06:46.819 i was going on i was on one for infliximab for 00:06:46.819 --> 00:06:50.259 quite a while on the infusions but i would after 00:06:50.259 --> 00:06:52.899 about i would probably say i was on that maybe 00:06:52.899 --> 00:06:57.620 for 8 to 12 months i then started getting flare 00:06:57.620 --> 00:07:00.420 up and i could you you just know your body and 00:07:00.420 --> 00:07:03.439 my first sign of a flare up is always the tiredness 00:07:03.439 --> 00:07:07.839 the thirsty the everything like that and i would 00:07:07.839 --> 00:07:11.089 just then Went to doctors and then obviously 00:07:11.089 --> 00:07:13.430 see my eye because my IBD team at the hospital 00:07:13.430 --> 00:07:15.949 were brilliant. And I would like saying, you 00:07:15.949 --> 00:07:17.990 know, I'm feeling like I'm getting like my hands. 00:07:18.050 --> 00:07:22.689 I had really bad pains in my hands, etc. So then 00:07:22.689 --> 00:07:24.370 they were like, right, come off of that. Let's 00:07:24.370 --> 00:07:26.329 try you on something else. So then it was just 00:07:26.329 --> 00:07:29.970 like a process. Then basically it was just over 00:07:29.970 --> 00:07:32.290 time, over years. So many different medications 00:07:32.290 --> 00:07:36.550 over years that I was on. To the point where 00:07:36.550 --> 00:07:38.709 I was just thinking, no, I'm not going to find 00:07:38.709 --> 00:07:43.790 anything, anything to help me. So you did then 00:07:43.790 --> 00:07:47.949 experience remission periodically, right? Yes. 00:07:47.970 --> 00:07:51.490 For a number of months. Yeah. But then with flares 00:07:51.490 --> 00:07:54.230 coming back, starting a new medication, going 00:07:54.230 --> 00:07:56.620 through the whole thing again. Yeah. How did 00:07:56.620 --> 00:08:00.519 you manage to hold on to this hope that one day 00:08:00.519 --> 00:08:02.360 you would actually find something that really 00:08:02.360 --> 00:08:04.800 works, right? And how did you also at the same 00:08:04.800 --> 00:08:07.879 time deal with the fear of, well, when is the 00:08:07.879 --> 00:08:11.139 next flaring flare going to hit me? Yeah, it 00:08:11.139 --> 00:08:13.740 was so hard because I kept thinking, okay, you 00:08:13.740 --> 00:08:16.100 know, I'm all right at the moment, but tomorrow 00:08:16.100 --> 00:08:20.079 I could have a flare. I ended up, it took such 00:08:20.079 --> 00:08:23.000 a toll on my mental health because I was just 00:08:23.000 --> 00:08:24.720 sort of struggling, thinking I don't know how 00:08:24.720 --> 00:08:26.759 it's going to be that I have actually been on 00:08:26.759 --> 00:08:30.339 antidepressants now for six years because I was 00:08:30.339 --> 00:08:32.840 in a very dark place thinking that the colitis 00:08:32.840 --> 00:08:35.710 was controlling my life, thinking... If I was 00:08:35.710 --> 00:08:38.309 making plans, I'd have to cancel everything because 00:08:38.309 --> 00:08:41.009 of how I was feeling. And it was so tiring putting 00:08:41.009 --> 00:08:44.049 on that clown face all the time. And they said 00:08:44.049 --> 00:08:47.029 to me, the very end result would be that you 00:08:47.029 --> 00:08:50.990 may need a stoma bag. And I was absolutely not. 00:08:51.090 --> 00:08:55.549 No way. I kept thinking that would be just... 00:08:55.769 --> 00:08:59.190 At the time, the worst thing that I could think 00:08:59.190 --> 00:09:01.789 of. So I was like, I've got to try everything. 00:09:02.009 --> 00:09:05.649 So I was really into yoga. I was walking a lot, 00:09:05.690 --> 00:09:08.190 just trying to do everything. But it was very, 00:09:08.309 --> 00:09:11.309 when people would say about, well, what causes 00:09:11.309 --> 00:09:13.889 a flare up? And I just do not know. But it was 00:09:13.889 --> 00:09:16.169 so weird that I would always then have a flare 00:09:16.169 --> 00:09:19.450 up around sort of September, October. So I don't 00:09:19.450 --> 00:09:21.769 know if it was like a seasonal change, but it 00:09:21.769 --> 00:09:24.429 was always be around that time. So you said. 00:09:25.100 --> 00:09:27.600 You were sort of afraid that colitis was really 00:09:27.600 --> 00:09:29.879 controlling your life. Absolutely. And it did. 00:09:30.460 --> 00:09:34.360 How did you fight back? Going on antidepressants. 00:09:34.460 --> 00:09:37.580 It's really bad. But I just felt like I was fighting 00:09:37.580 --> 00:09:41.600 and fighting, trying to stay positive. But when 00:09:41.600 --> 00:09:45.200 I'd come home and feel so tired and just thinking, 00:09:45.440 --> 00:09:47.159 oh my God, I just don't know when I'll get another 00:09:47.159 --> 00:09:50.740 flare. But then my flares would last a lot longer. 00:09:51.200 --> 00:09:53.320 and then because I was on this medication and 00:09:53.320 --> 00:09:54.799 then that medication wouldn't work then they 00:09:54.799 --> 00:09:57.419 try me on something else and then I might something 00:09:57.419 --> 00:09:59.980 might work and I'll be like oh my god I've found 00:09:59.980 --> 00:10:02.059 that I've actually found it but I would always 00:10:02.059 --> 00:10:06.179 try to research as well and read into what was 00:10:06.179 --> 00:10:09.740 available but when you just read that there was 00:10:09.740 --> 00:10:13.779 just no cure I kept thinking oh my god I've got 00:10:13.779 --> 00:10:16.600 to try and change my mindset. So I was doing 00:10:16.600 --> 00:10:19.639 everything I possibly could to try and stay positive, 00:10:19.759 --> 00:10:23.940 which was hard. And obviously when your medical 00:10:23.940 --> 00:10:27.120 team first mentioned surgery, living with a stoma 00:10:27.120 --> 00:10:30.340 potentially, you were completely opposed to the 00:10:30.340 --> 00:10:35.000 idea. Sometimes we can try and fight back as 00:10:35.000 --> 00:10:38.009 much as we can and yet... in the end lose that 00:10:38.009 --> 00:10:40.590 battle and i don't want to spoil it here but 00:10:40.590 --> 00:10:45.149 in your case yeah you did right yeah so take 00:10:45.149 --> 00:10:47.929 us a little bit through how you warmed up to 00:10:47.929 --> 00:10:50.929 the idea of a stoma and then eventually also 00:10:50.929 --> 00:10:54.769 what caused you to to have surgery or need to 00:10:54.769 --> 00:10:58.970 have surgery yeah yeah okay so flares on and 00:10:58.970 --> 00:11:00.389 off and then it got to the point where it was 00:11:00.389 --> 00:11:02.370 like every three years and then it was getting 00:11:02.370 --> 00:11:07.179 sort of down then to about every year and I remember 00:11:07.179 --> 00:11:10.019 I started having a flare at this one particular 00:11:10.019 --> 00:11:13.440 time. And it was at this time I had a lot of 00:11:13.440 --> 00:11:16.519 things coming up. I was on holiday and I could 00:11:16.519 --> 00:11:19.580 feel my body changing. And in my head, I was 00:11:19.580 --> 00:11:21.059 thinking, oh, no, I can't deal with this now 00:11:21.059 --> 00:11:23.200 because my sister was about to get married. I 00:11:23.200 --> 00:11:25.960 was helping my other sister move. So in my head, 00:11:25.960 --> 00:11:28.240 I was like, I've got to keep going, keep going, 00:11:28.340 --> 00:11:31.960 which I did. And the moment it was like I sort 00:11:31.960 --> 00:11:35.759 of. did all of that it really hit me my flare 00:11:35.759 --> 00:11:39.840 and then went to see my IBD team and they said 00:11:39.840 --> 00:11:43.360 okay we need to have a camera to see what's going 00:11:43.360 --> 00:11:47.379 on so whilst I was waiting for this camera one 00:11:47.379 --> 00:11:50.399 night I just had this terrible pain in my left 00:11:50.399 --> 00:11:55.379 side and they my husband took me to A &E I'd 00:11:55.379 --> 00:11:58.480 sat there for six hours And they then told me 00:11:58.480 --> 00:12:00.299 that I've got to wait another six hours to see 00:12:00.299 --> 00:12:03.740 a doctor. But I said to them, and this was now 00:12:03.740 --> 00:12:05.259 about two o 'clock in the morning. And I said, 00:12:05.299 --> 00:12:07.679 I can't sit here anymore because I suffer with 00:12:07.679 --> 00:12:10.460 really chronic fatigue. I just was at that wit's 00:12:10.460 --> 00:12:11.960 end thinking, I don't know what's happening. 00:12:12.840 --> 00:12:16.659 Then the next morning, I had emailed my nurse 00:12:16.659 --> 00:12:18.940 to say, I have been, is there any way you can 00:12:18.940 --> 00:12:21.279 sort of just chase the camera up for me? She 00:12:21.279 --> 00:12:23.039 rang me back straight away saying, come to the 00:12:23.039 --> 00:12:26.620 hospital now. We will just fit you in. So I went 00:12:26.620 --> 00:12:30.120 to the hospital, had the camera, and then I woke 00:12:30.120 --> 00:12:33.019 up in recovery. And all I got told was, you are 00:12:33.019 --> 00:12:35.259 going to, you need to see a doctor. You've got 00:12:35.259 --> 00:12:37.840 to stay in. The doctor came and said, you need 00:12:37.840 --> 00:12:41.000 surgery. So it was like, then I was like, oh 00:12:41.000 --> 00:12:45.340 my God. So I hadn't had a chance to really think 00:12:45.340 --> 00:12:47.899 about it. They had always mentioned to me, there's 00:12:47.899 --> 00:12:50.639 only a couple of more options left of with this 00:12:50.639 --> 00:12:53.259 new drug that is coming out. That's just been 00:12:53.259 --> 00:12:56.500 okayed by NICE. But he said, I don't know how 00:12:56.500 --> 00:12:58.620 long you'll be waiting for it. And I was saying 00:12:58.620 --> 00:13:00.139 to him, I don't want a bag. I don't want a bag. 00:13:00.220 --> 00:13:02.879 So when obviously I got told, you've got to have 00:13:02.879 --> 00:13:06.000 this surgery. I then was at the point where I 00:13:06.000 --> 00:13:09.379 thought, I don't want it, but I want it. I can't 00:13:09.379 --> 00:13:12.779 do, I cannot live like this anymore. And then 00:13:12.779 --> 00:13:15.539 how quickly did the surgery happen? Are we talking 00:13:15.539 --> 00:13:18.960 hours, days, weeks? Okay, so I was in hospital. 00:13:19.200 --> 00:13:21.460 They put me straight back on the prednisolone 00:13:21.460 --> 00:13:24.759 because they said that we need to see if we can 00:13:24.759 --> 00:13:28.039 control it. And they were pumping me with just 00:13:28.039 --> 00:13:31.779 so much of that. And that was for about a week 00:13:31.779 --> 00:13:34.100 because they wanted to try and calm the flare 00:13:34.100 --> 00:13:36.639 down. At the time, they said, we'll get a stoma 00:13:36.639 --> 00:13:38.779 nurse to come around to you, a surgeon to come 00:13:38.779 --> 00:13:41.840 around to you. I was just like, I can't believe 00:13:41.840 --> 00:13:43.620 all this is happening because I felt like it 00:13:43.620 --> 00:13:46.299 was at my control. But what's really ironic is 00:13:46.299 --> 00:13:50.399 that previously when I've had flares, I was so 00:13:50.399 --> 00:13:52.139 poorly that at that moment I thought, you know 00:13:52.139 --> 00:13:54.039 what, if I need a bag, I'll have it. I have it. 00:13:54.080 --> 00:13:56.419 I just can't deal with this anymore. So when 00:13:56.419 --> 00:13:59.360 I was there, they had made me record. And I always 00:13:59.360 --> 00:14:02.779 remember they'd said to me, can you record every 00:14:02.779 --> 00:14:06.720 single time you go to the toilet? Being in the 00:14:06.720 --> 00:14:09.220 first three days, I remember I looked and it 00:14:09.220 --> 00:14:12.919 was like 88 times within three days. And it was 00:14:12.919 --> 00:14:17.879 just, at that point, I was so weak. So I think 00:14:17.879 --> 00:14:21.440 I was in for about two weeks before they then 00:14:21.440 --> 00:14:25.659 said, right, okay, it's tomorrow. And yeah, so 00:14:25.659 --> 00:14:30.840 then it happened. You, in one of your Instagram 00:14:30.840 --> 00:14:34.360 posts, and if... I'm not mistaken, it might have 00:14:34.360 --> 00:14:35.820 been in your very first one where you sort of 00:14:35.820 --> 00:14:39.279 introduce yourself and your journey. You wrote, 00:14:39.379 --> 00:14:43.580 and I quote, you found it difficult to even look 00:14:43.580 --> 00:14:46.019 at your stoma at the very beginning, right? Yeah. 00:14:46.200 --> 00:14:50.500 So obviously post -surgery, it's not just waking 00:14:50.500 --> 00:14:53.440 up with a stoma, you know, your entire life is 00:14:53.440 --> 00:14:59.279 going to change. How did you overcome this feeling 00:14:59.279 --> 00:15:04.720 of not even, be able to look at it it was hard 00:15:04.720 --> 00:15:08.600 because I had my surgery and I remember I was 00:15:08.600 --> 00:15:10.259 thinking I've got to wait for my husband to come 00:15:10.259 --> 00:15:13.039 because I didn't want to look down at all and 00:15:13.039 --> 00:15:15.539 then um and I'd actually had one of the things 00:15:15.539 --> 00:15:18.139 I used to do and I used to really burn myself 00:15:18.139 --> 00:15:20.779 with a hot water bottle on my right hand side 00:15:20.779 --> 00:15:23.539 so I had really bad scarring so I had that on 00:15:23.539 --> 00:15:26.720 one side and then when I looked down and then 00:15:26.720 --> 00:15:28.580 I saw it and it was like they didn't tell me 00:15:28.580 --> 00:15:31.389 that when I would have a stoma bag that it would 00:15:31.389 --> 00:15:34.889 be um see -through so I didn't and and like the 00:15:34.889 --> 00:15:37.350 size of it they didn't I didn't know they were 00:15:37.350 --> 00:15:39.629 going to do like six insertions in my stomach 00:15:39.629 --> 00:15:43.830 it was just awful I was like I felt just disgusted 00:15:43.830 --> 00:15:47.710 I felt just awful and thought how am I gonna 00:15:47.710 --> 00:15:52.669 live with this it was awful but I then um was 00:15:52.669 --> 00:15:54.610 all in all I think I was in hospital for about 00:15:54.610 --> 00:15:57.610 six weeks because my surgery was okay but I had 00:15:57.610 --> 00:16:02.269 a lot of infections and I was in um there was 00:16:02.269 --> 00:16:03.669 at a point where I didn't know if I was going 00:16:03.669 --> 00:16:08.470 to make it because it just I came home had and 00:16:08.470 --> 00:16:11.590 it was that I was being really sick long story 00:16:11.590 --> 00:16:15.120 short my stomach was dilating from my my from 00:16:15.120 --> 00:16:17.940 my stomach stopped working sorry and it's I was 00:16:17.940 --> 00:16:20.639 dilating from my stomach to my pelvis and it 00:16:20.639 --> 00:16:23.039 was really touch and go so I was in hospital 00:16:23.039 --> 00:16:28.080 very really dark place I came out again it was 00:16:28.080 --> 00:16:30.240 I just thought I don't know how I'm supposed 00:16:30.240 --> 00:16:33.250 to ever I was taking everything very literally 00:16:33.250 --> 00:16:36.629 as in I was reading what you should wear, what 00:16:36.629 --> 00:16:39.370 you should eat. And I didn't know your whole 00:16:39.370 --> 00:16:42.350 diet changed. There's so much stuff that you 00:16:42.350 --> 00:16:46.230 can't do. So, yeah, it took me a very long time. 00:16:46.409 --> 00:16:49.230 I would say a good two months for me because 00:16:49.230 --> 00:16:52.529 I was in a very, very dark place. Do you feel 00:16:52.529 --> 00:16:56.370 like it's just one of those things where. Time 00:16:56.370 --> 00:17:00.169 changes everything. Time basically pushes you 00:17:00.169 --> 00:17:04.289 to accept your stoma, to accept, you know, who 00:17:04.289 --> 00:17:08.509 you are now. Or how would you describe this transformation 00:17:08.509 --> 00:17:14.049 from really hating this stoma to really accept 00:17:14.049 --> 00:17:18.509 it as part of yourself, right? And then sort 00:17:18.509 --> 00:17:21.269 of restart your life. Yeah. What do you think 00:17:21.269 --> 00:17:28.180 sort of changed? Yeah. remember my um i was like 00:17:28.180 --> 00:17:31.039 sort of housebound for about 12 weeks um my husband's 00:17:31.039 --> 00:17:34.119 friend came around and he was said to me my mum's 00:17:34.119 --> 00:17:36.799 got two bags actually one for bowel one for bladder 00:17:36.799 --> 00:17:40.089 and i don't know why at that moment I just thought, 00:17:40.190 --> 00:17:42.910 oh, my God, what I've got to sort myself out. 00:17:43.009 --> 00:17:45.670 I need to stop feeling sorry for myself. People 00:17:45.670 --> 00:17:48.789 have it so much worse. And then because the first 00:17:48.789 --> 00:17:50.589 thing they always say is you need to name your 00:17:50.589 --> 00:17:54.210 stoma as it's part of an acceptance. So I got 00:17:54.210 --> 00:17:56.670 a name. I called it Cherry because it looks like 00:17:56.670 --> 00:18:01.109 a cherry. And from there, I then reached out 00:18:01.109 --> 00:18:04.910 to a company called Colostomy UK, my stoma nurse. 00:18:05.660 --> 00:18:07.559 had said to me so i said to i'm struggling i 00:18:07.559 --> 00:18:10.380 don't know anyone else i just i feel so alone 00:18:10.380 --> 00:18:13.480 i was looking at things on social media which 00:18:13.480 --> 00:18:15.819 were quite negative and it was putting me more 00:18:15.819 --> 00:18:19.059 in a dark place and then customer uk said reach 00:18:19.059 --> 00:18:21.259 out to there is some support groups so i did 00:18:21.259 --> 00:18:25.019 go to one which is about 20 miles away and when 00:18:25.019 --> 00:18:28.119 i was there I just thought, oh my God, you know, 00:18:28.160 --> 00:18:30.980 this is like midweek. What about people that 00:18:30.980 --> 00:18:34.599 are younger? What about people that want to have 00:18:34.599 --> 00:18:38.640 this support, but nothing's nearer me? So that 00:18:38.640 --> 00:18:41.920 was when I was like, do you know what? This stoma 00:18:41.920 --> 00:18:46.079 has saved my life. It gave me back my life. And 00:18:46.079 --> 00:18:48.559 that was when I was like, right, I'm going to 00:18:48.559 --> 00:18:51.059 set up a support group because I needed it. And 00:18:51.059 --> 00:18:55.279 yeah, so now... A year on and my stoma group 00:18:55.279 --> 00:18:59.039 is going so strong. And it's amazing. And this 00:18:59.039 --> 00:19:01.619 stoma group, we're definitely going to come back 00:19:01.619 --> 00:19:04.640 to that. I want to ask you more about this. Now, 00:19:04.839 --> 00:19:09.619 some time passed since your surgery. You've sought 00:19:09.619 --> 00:19:14.480 some help. You're working on accepting it, sort 00:19:14.480 --> 00:19:19.640 of reclaiming your life as well. What is life 00:19:19.640 --> 00:19:24.680 like with a stoma for you today? amazing I never 00:19:24.680 --> 00:19:29.220 thought I would say um yeah I feel like I am 00:19:29.220 --> 00:19:33.440 I wish I'd had this years ago because it's just 00:19:33.440 --> 00:19:37.359 now to um now I've navigated and I know how to 00:19:37.359 --> 00:19:40.000 sort of work my way around the stoma it's so 00:19:40.000 --> 00:19:43.400 nice to not have constant pain in my side to 00:19:43.400 --> 00:19:49.019 not bleed to to to just have my life back I remember 00:19:49.019 --> 00:19:51.220 the nurse said to me in hospital this is going 00:19:51.220 --> 00:19:53.200 to be such a better quality of life for you and 00:19:53.200 --> 00:19:57.420 I remember thinking are you joking how how is 00:19:57.420 --> 00:20:00.119 this a better quality of life but now it honestly 00:20:00.119 --> 00:20:05.240 honestly it is it's really really is how it's 00:20:05.240 --> 00:20:08.900 just made my life so much better And that's exactly 00:20:08.900 --> 00:20:11.480 what you want from this. That's the ultimate 00:20:11.480 --> 00:20:13.480 goal. And even though we always say like, you 00:20:13.480 --> 00:20:15.359 know, surgery is great, but it does not necessarily 00:20:15.359 --> 00:20:19.160 count as a, you know, full -blown cure. Because, 00:20:19.400 --> 00:20:21.500 you know, even living with a stoma, there's some 00:20:21.500 --> 00:20:24.160 challenges that are attached to it. Tell me about 00:20:24.160 --> 00:20:27.859 your struggles that you still kind of face maybe 00:20:27.859 --> 00:20:31.420 day -to -day living with a stoma. You do still 00:20:31.420 --> 00:20:34.619 have to, you have to make sure you chew your 00:20:34.619 --> 00:20:36.859 food much more. There's certain things you can't 00:20:36.859 --> 00:20:40.940 eat. You can't, even I used to sleep on my right 00:20:40.940 --> 00:20:43.440 hand side. I had to learn to sleep on my left. 00:20:43.759 --> 00:20:47.059 You go out and you think, oh God, what if I leak? 00:20:47.359 --> 00:20:51.400 What if just, it's just that awful thinking, 00:20:51.480 --> 00:20:54.119 oh my God, what if somebody can see it? But now 00:20:54.119 --> 00:20:59.039 I'm just really trying to embrace it. and make 00:20:59.039 --> 00:21:02.279 it my best friend because and it is what it is 00:21:02.279 --> 00:21:05.119 if I do leak I think you know it is but it is 00:21:05.119 --> 00:21:08.000 it is hard because as well with clothing you 00:21:08.000 --> 00:21:10.359 have to be careful sort of with clothes because 00:21:10.359 --> 00:21:13.740 certain things you but I'm really trying to navigate 00:21:13.740 --> 00:21:16.440 that and to see and reach out to companies as 00:21:16.440 --> 00:21:20.059 well to see what sort of is on offer out there 00:21:20.059 --> 00:21:23.519 for people but I wear a hernia belt all the time 00:21:23.519 --> 00:21:26.140 which they it's basically like a hernia support 00:21:26.140 --> 00:21:29.839 belt so that really helps as well because and 00:21:29.839 --> 00:21:31.779 one thing which they didn't tell me in hospital 00:21:31.779 --> 00:21:34.680 was that you are more prone 80 80 percent more 00:21:34.680 --> 00:21:37.900 prone to have a hernia even down to like I had 00:21:37.900 --> 00:21:39.440 a chest infection when I was in the hospital 00:21:39.440 --> 00:21:43.240 and it wasn't until my husband said, shouldn't 00:21:43.240 --> 00:21:46.119 you put your hand over your stoma in case? And 00:21:46.119 --> 00:21:47.859 it was. And that's when they said that's one 00:21:47.859 --> 00:21:49.839 of the worst things for coughing, sneezing. So 00:21:49.839 --> 00:21:52.799 it's just little things like that. Always making 00:21:52.799 --> 00:21:57.059 sure I've always got electrolytes with me. I've 00:21:57.059 --> 00:21:59.640 always got to make sure I've always got like 00:21:59.640 --> 00:22:01.700 snacks because you've got to eat little and often. 00:22:02.019 --> 00:22:06.369 So it's just, yeah, it's definitely. a different 00:22:06.369 --> 00:22:09.609 way i've had to sort of navigate there's been 00:22:09.609 --> 00:22:11.789 a question that's been that i've been dying to 00:22:11.789 --> 00:22:13.650 ask and i'm going to have to open a parenthesis 00:22:13.650 --> 00:22:16.230 for this but i want to make sure i want to ask 00:22:16.230 --> 00:22:20.210 it now instead of forgetting so you have a brother 00:22:20.210 --> 00:22:21.950 with ulcerative colitis you have ulcerative colitis 00:22:21.950 --> 00:22:25.170 obviously your ibd journeys have been quite different 00:22:25.170 --> 00:22:29.309 has there ever been a moment and i'm asking this 00:22:29.309 --> 00:22:32.559 because you know you said that your brother managed 00:22:32.559 --> 00:22:36.839 his disease better than you did. Has there ever 00:22:36.839 --> 00:22:40.400 been a moment where you were angry at your brother, 00:22:40.480 --> 00:22:43.900 where you felt like it was unfair, where maybe 00:22:43.900 --> 00:22:50.119 you had felt envy towards your brother for being 00:22:50.119 --> 00:22:53.180 better off with his colitis as opposed to you 00:22:53.180 --> 00:22:56.779 having to go through this trauma of surgery as 00:22:56.779 --> 00:23:00.109 well? I think back in the day, I was very like, 00:23:00.230 --> 00:23:03.109 God, why can't I have it so minor like him? Like 00:23:03.109 --> 00:23:06.329 he does still suffer now, but he is on different 00:23:06.329 --> 00:23:09.710 types of medication and he sometimes is bleeding 00:23:09.710 --> 00:23:12.349 and he's not. And then, but I've never, ever, 00:23:12.410 --> 00:23:14.589 I've just feel myself that I'm very lucky now 00:23:14.589 --> 00:23:17.789 to have had a stoma. So no, I would never, ever, 00:23:17.849 --> 00:23:19.410 I've never looked at it like that. I've only 00:23:19.410 --> 00:23:21.269 ever looked at it thinking I wish I had it as 00:23:21.269 --> 00:23:24.849 minor as he had it at the time. But never any 00:23:24.849 --> 00:23:29.880 resentment basically, just because. Yeah. Great. 00:23:29.960 --> 00:23:31.460 Yeah. Thank you for sharing that. And that sort 00:23:31.460 --> 00:23:36.819 of closes my parenthesis then. So looking back 00:23:36.819 --> 00:23:40.440 now at your life with a stoma, especially because, 00:23:40.539 --> 00:23:42.440 you know, we can agree that this was sort of 00:23:42.440 --> 00:23:44.380 a traumatic experience for you at the beginning 00:23:44.380 --> 00:23:46.920 and you sort of accepted it. You live with it 00:23:46.920 --> 00:23:52.380 now. What do you wish you had known from day 00:23:52.380 --> 00:23:58.200 one of living with a stoma? My God, I just wish 00:23:58.200 --> 00:24:00.359 I knew that there was support there. I wish I 00:24:00.359 --> 00:24:02.160 knew that there was somebody to talk to, that 00:24:02.160 --> 00:24:04.359 it was going to be OK, that it's not nothing 00:24:04.359 --> 00:24:09.839 disgusting. I wish that I just had somebody to 00:24:09.839 --> 00:24:14.000 talk to. It's just it's yeah, I just really do. 00:24:14.099 --> 00:24:16.279 And that's why it was so important for me to 00:24:16.279 --> 00:24:19.359 set up this support group, because I felt so 00:24:19.359 --> 00:24:22.680 alone. so so alone you know and it's so nice 00:24:22.680 --> 00:24:25.059 to be able to talk to people that are on this 00:24:25.059 --> 00:24:27.599 and it's like questions that you wouldn't be 00:24:27.599 --> 00:24:30.339 able to ask your friends and family because they 00:24:30.339 --> 00:24:32.680 don't really understand but you know like no 00:24:32.680 --> 00:24:35.059 questions off limits and it's just really nice 00:24:35.059 --> 00:24:38.019 to have that but yeah at the very beginning i 00:24:38.019 --> 00:24:41.240 just wish i had someone there just to help me 00:24:41.240 --> 00:24:44.480 and to say it's gonna be okay so let's talk a 00:24:44.480 --> 00:24:46.930 bit a little bit about your support group If 00:24:46.930 --> 00:24:49.029 I'm not mistaken, you sort of came up with the 00:24:49.029 --> 00:24:52.490 idea after you actually visited an existing one, 00:24:52.589 --> 00:24:54.089 right? That was just maybe a little bit too far 00:24:54.089 --> 00:24:58.029 away from where you live. Tell me how this works. 00:24:58.190 --> 00:25:00.269 Is this all in person? Is this virtual? Is it 00:25:00.269 --> 00:25:03.289 hybrid? You know, how many people are in that 00:25:03.289 --> 00:25:06.450 group? And what sort of topics do you discuss? 00:25:06.710 --> 00:25:09.009 You know, just take us through that. And I want 00:25:09.009 --> 00:25:10.930 to ask this question because most people today, 00:25:10.990 --> 00:25:13.680 they sort of just... jump in to social media 00:25:13.680 --> 00:25:17.059 for help. And that's fantastic, right? The communities 00:25:17.059 --> 00:25:19.019 are exploding and there's real compassion, real 00:25:19.019 --> 00:25:22.359 support online. But I think there's still sometimes 00:25:22.359 --> 00:25:24.660 a difference between, you know, sitting on a 00:25:24.660 --> 00:25:27.400 computer or messaging through a phone and literally 00:25:27.400 --> 00:25:30.960 sitting across from somebody else. So explain 00:25:30.960 --> 00:25:33.200 to us your support group and how you run it. 00:25:33.519 --> 00:25:36.599 Yeah, so I went to that support group. Everybody 00:25:36.599 --> 00:25:39.059 was... I don't want to say this without being 00:25:39.059 --> 00:25:41.519 rude, but everybody was probably 70 and above. 00:25:42.039 --> 00:25:44.619 I felt like, God, I wish I had somebody sort 00:25:44.619 --> 00:25:50.220 of my age to talk to. Like I said, it was on 00:25:50.220 --> 00:25:52.500 a Tuesday. So I thought it's really hard to keep 00:25:52.500 --> 00:25:54.140 getting time off work to go. And it was like 00:25:54.140 --> 00:25:58.440 20 miles away. I just thought, my God, wonder 00:25:58.440 --> 00:26:00.220 what it would be like to just set up a group. 00:26:00.339 --> 00:26:03.279 And I thought, I've got absolutely no idea. So 00:26:03.279 --> 00:26:06.779 I contacted Colostomy UK and said, you know, 00:26:06.819 --> 00:26:09.259 I was thinking about this. And they said, we'll 00:26:09.259 --> 00:26:11.119 put you in touch with somebody that has run a 00:26:11.119 --> 00:26:13.799 group before. So she rang me and said, we've 00:26:13.799 --> 00:26:15.619 been doing it for so many years. I run it in 00:26:15.619 --> 00:26:19.779 a village hall. So then what I did was I put 00:26:19.779 --> 00:26:22.849 it out on social media. and just said, I had 00:26:22.849 --> 00:26:25.410 to think of a name, and I just randomly come 00:26:25.410 --> 00:26:29.450 up with Stomach Love, and just put it out there 00:26:29.450 --> 00:26:33.009 to say, meet in this pub, and I'm going to be 00:26:33.009 --> 00:26:35.509 there for like two hours, if you have a stoma, 00:26:35.630 --> 00:26:37.670 or you want to just come along to chat, anyway, 00:26:37.829 --> 00:26:41.809 I had like 11 people turn up, which I, and then 00:26:41.809 --> 00:26:44.369 I'd said to them, I'm just going to talk about 00:26:44.369 --> 00:26:47.349 my journey. We'll go around in a circle if you 00:26:47.349 --> 00:26:49.150 want to share or if you don't want to share. 00:26:49.369 --> 00:26:51.470 And people were going around saying everything. 00:26:51.670 --> 00:26:56.029 And then from then I looked into actually a hall 00:26:56.029 --> 00:27:00.690 that I hire now every six Saturday. So it's in 00:27:00.690 --> 00:27:03.910 person. Anybody is welcome. Just if they don't 00:27:03.910 --> 00:27:06.829 have a stoma, if they have a stoma, if a family 00:27:06.829 --> 00:27:09.230 member wants to come along. So I'd say now I've 00:27:09.230 --> 00:27:12.900 got about 35 members. And what I do is they come 00:27:12.900 --> 00:27:16.759 along, we all sit around and I get speakers in 00:27:16.759 --> 00:27:19.680 as well to talk about all different bags or we'll 00:27:19.680 --> 00:27:21.819 talk about any conversations. I'll put an agenda 00:27:21.819 --> 00:27:24.180 together and I will ask them what do they wish 00:27:24.180 --> 00:27:26.940 to discuss. But the conversations really sort 00:27:26.940 --> 00:27:29.140 of start flowing. You might get some people that 00:27:29.140 --> 00:27:32.480 are not confident speaking out. So at the end, 00:27:32.500 --> 00:27:35.240 what we do is I'll do like a little raffle and 00:27:35.240 --> 00:27:37.380 I make sure we have good biscuits and tea and 00:27:37.380 --> 00:27:40.940 coffee. And then we sort of can go around. speak 00:27:40.940 --> 00:27:43.059 to each other one -on -one then if we want to 00:27:43.059 --> 00:27:45.940 and um so yeah it's going really well and i've 00:27:45.940 --> 00:27:48.579 had really good feedback from there so and it 00:27:48.579 --> 00:27:50.460 just shows that there was obviously support that 00:27:50.460 --> 00:27:53.400 was needed exactly you you're literally almost 00:27:53.400 --> 00:27:55.000 taking the words out of her mouth i was just 00:27:55.000 --> 00:27:56.859 going to say you know you said in your first 00:27:56.859 --> 00:27:59.279 sort of meeting you know 11 people showed up 00:27:59.279 --> 00:28:02.079 and i'm not familiar with the population of the 00:28:02.079 --> 00:28:04.440 town that you're living in but it just kind of 00:28:04.440 --> 00:28:07.720 also goes to show that a lot more people that 00:28:07.720 --> 00:28:13.039 you might think are touched by IBD, right? That's 00:28:13.039 --> 00:28:16.039 really inspiring. I mean, you're inspiring me 00:28:16.039 --> 00:28:18.380 right now to basically try and set up the same 00:28:18.380 --> 00:28:20.400 thing in my town here. So it's really, really 00:28:20.400 --> 00:28:21.920 great. And I really do hope that everybody's 00:28:21.920 --> 00:28:24.359 listening, you know, if they don't have a support 00:28:24.359 --> 00:28:26.779 group yet and are open to talk about it, to actually 00:28:26.779 --> 00:28:29.589 maybe, you know, seek. these kinds of initiatives 00:28:29.589 --> 00:28:33.289 or launch them by themselves. Because again, 00:28:33.470 --> 00:28:35.730 online support is really fantastic. And I think 00:28:35.730 --> 00:28:39.150 a lot of people find a lot of answers, you know, 00:28:39.150 --> 00:28:42.609 two questions online, but there's just something 00:28:42.609 --> 00:28:44.630 about being in the same room and looking at a 00:28:44.630 --> 00:28:46.390 person in the eye, you know, and just knowing 00:28:46.390 --> 00:28:48.890 that, you know, that person understands completely 00:28:48.890 --> 00:28:53.089 how I feel, what I'm going through. There's no 00:28:53.089 --> 00:28:56.329 replacement for that. So that's really fantastic. 00:28:56.529 --> 00:29:00.759 Really fantastic. So support groups, that's great. 00:29:00.839 --> 00:29:03.759 It helps others. It also helps you. So I think 00:29:03.759 --> 00:29:05.640 it's probably also like self -therapy for you. 00:29:05.740 --> 00:29:09.220 So let's shift sort of like into sort of what 00:29:09.220 --> 00:29:11.880 I call the third act, which is sort of present, 00:29:12.019 --> 00:29:14.680 future, but also a little bit more sort of introspection 00:29:14.680 --> 00:29:18.319 here. Looking back at your entire IBD journey, 00:29:18.440 --> 00:29:24.180 even before surgery and now after, how do you 00:29:24.180 --> 00:29:28.390 think that colitis and Living with a stoma has 00:29:28.390 --> 00:29:32.410 changed you as a person. I think now it's changed 00:29:32.410 --> 00:29:35.849 me for the better because I felt I'm quite a 00:29:35.849 --> 00:29:38.990 confident person. But for years, I just felt 00:29:38.990 --> 00:29:41.869 like I was just losing myself and thinking that 00:29:41.869 --> 00:29:44.089 I honestly thought, I don't know how I can deal 00:29:44.089 --> 00:29:46.970 with this pain and I cannot deal with having 00:29:46.970 --> 00:29:50.210 this. There were certain points where I was so 00:29:50.210 --> 00:29:52.670 dark that I just thought, I don't want to be 00:29:52.670 --> 00:29:57.019 here. It was just thinking, how can I? just manage 00:29:57.019 --> 00:30:01.160 this pain how can I just ever feel normal and 00:30:01.769 --> 00:30:04.130 I think where now I've since having my stoma 00:30:04.130 --> 00:30:07.970 and noticing the change in my body that I've 00:30:07.970 --> 00:30:10.690 now there's so many things now that I'm doing 00:30:10.690 --> 00:30:13.609 and it's amazing I have this like newfound energy 00:30:13.609 --> 00:30:16.029 as well because I feel like I haven't had energy 00:30:16.029 --> 00:30:19.630 for 14 years and it's also as well one thing 00:30:19.630 --> 00:30:22.869 that I will say is that I have actually got to 00:30:22.869 --> 00:30:28.890 have more surgery as my colitis is still in me 00:30:29.549 --> 00:30:33.250 basically my rectum my rectal stump that I've 00:30:33.250 --> 00:30:36.230 got they've less say 10 centimeters I had a camera 00:30:36.230 --> 00:30:38.829 in January and they told me that it's still very 00:30:38.829 --> 00:30:42.549 ulcerated and I'm due to see my surgeon in three 00:30:42.549 --> 00:30:45.390 weeks and that's something that I'm not really 00:30:45.390 --> 00:30:48.150 looking forward to but I know it will be something 00:30:48.150 --> 00:30:51.910 that has to happen and I've got my group there 00:30:51.910 --> 00:30:55.750 um so you know and again I'm just very lucky 00:30:55.750 --> 00:31:00.200 so I look at my stoma now as in this was meant 00:31:00.200 --> 00:31:03.819 to be it was just it had to be because and like 00:31:03.819 --> 00:31:06.960 I said I've really opened my eyes up to appreciating 00:31:06.960 --> 00:31:09.559 life as well I know it sounds so cliche like 00:31:09.559 --> 00:31:12.799 we all say oh life's so short but when I was 00:31:12.799 --> 00:31:16.859 in hospital and I told myself if I if I made 00:31:16.859 --> 00:31:20.660 it out of here that I would learn to roller skate 00:31:20.660 --> 00:31:25.119 and I've joined a roller skate in Derby and I've 00:31:25.119 --> 00:31:27.319 gone back to yoga and I've gone back horse riding 00:31:27.319 --> 00:31:29.359 and it's all these things so in my mind it's 00:31:29.359 --> 00:31:31.079 like oh my god I should have done all this before 00:31:31.079 --> 00:31:33.960 but it's like proving a point to myself now that 00:31:33.960 --> 00:31:37.460 where I feel this newfound energy that it is 00:31:37.460 --> 00:31:40.079 life is too short and the pain that I had pain 00:31:40.079 --> 00:31:43.619 for so many years that now I've just so nice 00:31:43.619 --> 00:31:46.990 to be pain free Well, you said that life is short 00:31:46.990 --> 00:31:48.690 and everybody says and keeps saying that life 00:31:48.690 --> 00:31:50.890 is short. And I got to tell you, we all say that 00:31:50.890 --> 00:31:54.269 because that is a fact, right? And I think it's 00:31:54.269 --> 00:31:56.930 perfectly fine to repeat facts over and over 00:31:56.930 --> 00:32:00.269 again. And I think what you said is really great 00:32:00.269 --> 00:32:01.950 because earlier you mentioned that when you had 00:32:01.950 --> 00:32:04.029 your first surgery, even though you had support, 00:32:04.289 --> 00:32:06.349 you wish you had support from people that would 00:32:06.349 --> 00:32:08.609 probably understand you better. Now that you're 00:32:08.609 --> 00:32:11.390 facing another surgery potentially or most likely. 00:32:12.250 --> 00:32:14.549 Just look at the change, right? You have that 00:32:14.549 --> 00:32:17.430 support now, you know, you after the surgery, 00:32:17.509 --> 00:32:19.230 like, let's say if it happens, you know, you'll 00:32:19.230 --> 00:32:20.930 be able to go back and say, well, this time around, 00:32:21.009 --> 00:32:24.410 I had all the support that I needed. And that's 00:32:24.410 --> 00:32:28.410 a truly great thing. So speaking of support, 00:32:29.190 --> 00:32:34.009 IBD does not impact. us the people who actually 00:32:34.009 --> 00:32:36.609 have and live with the disease but it does impact 00:32:36.609 --> 00:32:39.029 the people around us and you mentioned that you 00:32:39.029 --> 00:32:40.930 know you have a husband you were married as you 00:32:40.930 --> 00:32:44.430 went through this so how did colitis affect your 00:32:44.430 --> 00:32:48.069 your close relationships you know husband close 00:32:48.069 --> 00:32:52.269 family members i think that um i was very good 00:32:52.269 --> 00:32:54.470 at putting like my clown face on and just because 00:32:54.470 --> 00:32:57.069 i thought i'm sick of hearing myself saying i'm 00:32:57.069 --> 00:33:00.269 tired i don't feel well and just not having the 00:33:00.269 --> 00:33:03.640 energy but i think I would then get to a point 00:33:03.640 --> 00:33:05.940 where I'd be like, I actually can't have no energy 00:33:05.940 --> 00:33:08.720 to do anything. And I've got two children and 00:33:08.720 --> 00:33:11.599 my husband at home with me and they have just 00:33:11.599 --> 00:33:13.859 been amazing. And, you know, I do have really 00:33:13.859 --> 00:33:17.500 good friends and family that I could talk to. 00:33:17.660 --> 00:33:19.940 But when I'm poorly, like when I'm in hospital, 00:33:20.000 --> 00:33:22.160 I take myself away because I don't want people 00:33:22.160 --> 00:33:25.480 to see me like that. So that's why I will then 00:33:25.480 --> 00:33:27.920 just sort of go within myself, even though I 00:33:27.920 --> 00:33:31.400 know they're there and that I can talk to. but 00:33:31.400 --> 00:33:35.259 yeah it's just been it's very important to speak 00:33:35.259 --> 00:33:39.559 to speak out but um yeah i think for years now 00:33:39.559 --> 00:33:41.940 when i think about how my children and my husband 00:33:41.940 --> 00:33:43.720 and i've seen that and i know they really suffered 00:33:43.720 --> 00:33:46.140 seeing me um when it was very touch and go me 00:33:46.140 --> 00:33:48.960 being in hospital and now they see a different 00:33:48.960 --> 00:33:51.460 side to me now and how they like oh my god you're 00:33:51.460 --> 00:33:55.200 just so different yeah i know that's that's a 00:33:55.200 --> 00:34:00.529 really positive development and um Speaking of 00:34:00.529 --> 00:34:06.490 speaking out, you as someone who faced surgery 00:34:06.490 --> 00:34:10.489 and absolutely did not want that to happen, what 00:34:10.489 --> 00:34:14.769 would your words of advice be to people who find 00:34:14.769 --> 00:34:16.849 themselves in that same situation, right? Like 00:34:16.849 --> 00:34:20.309 who are unable to get their colitis under control 00:34:20.309 --> 00:34:24.449 and who might be facing surgery pretty soon? 00:34:28.079 --> 00:34:31.039 What would you tell those people? That it's okay. 00:34:31.099 --> 00:34:35.340 It sounds so scary. It's so daunting. Just really 00:34:35.340 --> 00:34:39.119 research, look into it, reach out to people. 00:34:39.340 --> 00:34:44.219 If there is anyone that they know, but sometimes 00:34:44.219 --> 00:34:48.519 don't go on. These forums sometimes can be quite 00:34:48.519 --> 00:34:53.480 negative. know that there is help out there I 00:34:53.480 --> 00:34:56.460 felt like at the beginning I didn't know I did 00:34:56.460 --> 00:34:58.500 not know about stomas I didn't know what they 00:34:58.500 --> 00:35:02.059 were and now I feel like it's everywhere and 00:35:02.059 --> 00:35:04.260 I'm really glad that it's everywhere I don't 00:35:04.260 --> 00:35:05.900 know if it's everywhere because now I have one 00:35:05.900 --> 00:35:10.219 and um I'm seeing it everywhere but like I would 00:35:10.219 --> 00:35:13.539 talk about stomas and colitis all day long because 00:35:13.539 --> 00:35:16.820 I feel like I want people to know that There 00:35:16.820 --> 00:35:18.960 is help there. But that's the one thing I did. 00:35:19.019 --> 00:35:21.920 I wish I, because I remember they gave me a leaflet 00:35:21.920 --> 00:35:23.679 and it would say, you've got to wear this certain 00:35:23.679 --> 00:35:26.519 clothes and you've got to eat this. And so I 00:35:26.519 --> 00:35:29.780 was very literal to the book. And it only took 00:35:29.780 --> 00:35:32.639 me, actually, with my group, I wouldn't eat lettuce 00:35:32.639 --> 00:35:36.079 for, oh God, nearly a good eight months because 00:35:36.079 --> 00:35:39.489 I read once I would get a blockage. Anyway, I've 00:35:39.489 --> 00:35:42.050 ate lettuce. It's absolutely fine. But it was 00:35:42.050 --> 00:35:44.230 these things that I was reading. So that's why 00:35:44.230 --> 00:35:47.289 I would say don't take anything literal. Just 00:35:47.289 --> 00:35:50.130 reach out to, even though you see these things, 00:35:50.230 --> 00:35:52.929 reach out to people on social media and, you 00:35:52.929 --> 00:35:55.309 know, just ask them as well and say, you know, 00:35:55.329 --> 00:35:57.630 can I, I have had some people ask me, I'm going 00:35:57.630 --> 00:36:01.110 to have surgery. Any tips? And, you know, I would 00:36:01.110 --> 00:36:03.510 just say, just also be kind to yourself because 00:36:03.510 --> 00:36:07.670 there's a reason and it's saving you. and yes 00:36:07.670 --> 00:36:11.150 i didn't want it but i have got it now and you 00:36:11.150 --> 00:36:13.730 know i have it and you've got to accept it and 00:36:13.730 --> 00:36:18.230 we all adapt to change because we have to absolutely 00:36:18.230 --> 00:36:21.670 absolutely so that's what you would say to others 00:36:21.670 --> 00:36:25.610 but if you could go back to the day that you 00:36:25.610 --> 00:36:30.530 were diagnosed and speak to yourself what what 00:36:30.530 --> 00:36:34.769 would you say to to yourself i would say it's 00:36:34.769 --> 00:36:38.539 okay It's going to be tough, but you will get 00:36:38.539 --> 00:36:42.860 there. It will be hard, but you've got to find 00:36:42.860 --> 00:36:45.860 that inner strength. And no, I always feel that 00:36:45.860 --> 00:36:48.500 people with Crohn's and colitis, they find this 00:36:48.500 --> 00:36:50.960 inner strength somehow and they get through their 00:36:50.960 --> 00:36:52.880 flare -ups, get through the day just by getting 00:36:52.880 --> 00:36:56.500 up and getting washed and just seeing people. 00:36:56.619 --> 00:37:00.000 That's hard. So I would just say it's going to 00:37:00.000 --> 00:37:03.760 be okay. With everything that you've seen, with 00:37:03.760 --> 00:37:06.679 everything that you've experienced in regards 00:37:06.679 --> 00:37:11.940 to IBD, colitis, Crohn's, do you think that we 00:37:11.940 --> 00:37:16.219 will see a cure to this in our lifetime? I really 00:37:16.219 --> 00:37:18.500 don't know. I would absolutely love there to 00:37:18.500 --> 00:37:21.980 be. I really, really would. That's why I try 00:37:21.980 --> 00:37:28.710 to work along with Crohn's and Colitis UK. And 00:37:28.710 --> 00:37:32.750 I'm about to be actually a volunteer for Colostomy 00:37:32.750 --> 00:37:35.969 UK so I can go out to events and things and talk 00:37:35.969 --> 00:37:38.570 about things because I would love there to be 00:37:38.570 --> 00:37:42.349 a cure. But then if the only cure would be that 00:37:42.349 --> 00:37:46.590 you would need a bag, then I would say that that's 00:37:46.590 --> 00:37:48.530 the only cure and it would be the best cure. 00:37:49.369 --> 00:37:51.809 But surely one day, I just hope there will be 00:37:51.809 --> 00:37:55.300 one day. No, and I think we all do. And I think 00:37:55.300 --> 00:37:57.480 while we wait for that, no matter how long it 00:37:57.480 --> 00:37:59.860 takes, I think we need to continue to educate. 00:37:59.940 --> 00:38:02.539 We need to continue to raise awareness. We need 00:38:02.539 --> 00:38:05.639 to continue to advocate for everybody living 00:38:05.639 --> 00:38:07.940 with IBD and helping each other out. So I think 00:38:07.940 --> 00:38:09.519 you are certainly one of these people who are 00:38:09.519 --> 00:38:11.300 doing all of these things and you're doing them 00:38:11.300 --> 00:38:15.079 the right way. And I can only urge you to continue 00:38:15.079 --> 00:38:18.980 to do that because whether you're touching one 00:38:18.980 --> 00:38:23.219 person or two or three or 11, you know, the turnout 00:38:23.219 --> 00:38:26.400 of your very first meeting, it's making a difference. 00:38:26.639 --> 00:38:29.219 It really, really is. So I want to thank you 00:38:29.219 --> 00:38:30.840 for doing that, number one. And I also want to 00:38:30.840 --> 00:38:32.880 thank you for taking the time to speak to me 00:38:32.880 --> 00:38:35.280 today about your journey. It's very, very inspiring. 00:38:35.380 --> 00:38:37.940 Certainly gave me a lot of food for thought as 00:38:37.940 --> 00:38:41.570 well. So what I wish for you is... you know, 00:38:41.570 --> 00:38:43.889 continuing success with your support group, but 00:38:43.889 --> 00:38:46.969 also all the best in your still continuing IBG 00:38:46.969 --> 00:38:49.010 journey as well. So thank you so much, Jess. 00:38:49.010 --> 00:38:50.369 Thank you so much. And thank you so much for 00:38:50.369 --> 00:38:52.989 taking the time to talk to me. I really appreciate 00:38:52.989 --> 00:38:57.050 it. Me too. Thank you. That's it for today's 00:38:57.050 --> 00:39:00.170 episode of Colitis Unfiltered. I'm Frank Tabering. 00:39:00.289 --> 00:39:03.570 And if this hit home or hit your gut, do us a 00:39:03.570 --> 00:39:06.369 favor, subscribe to the show and follow us at 00:39:06.369 --> 00:39:09.690 Colitis Unfiltered on YouTube, Substack, Instagram, 00:39:09.889 --> 00:39:12.969 Threads, TikTok, and Reddit. We'll see you soon 00:39:12.969 --> 00:39:15.130 for more inspiring stories from the bathroom 00:39:15.130 --> 00:39:15.409 floor.