WEBVTT 00:00:02.220 --> 00:00:04.879 It is hard to keep hope alive, to be fair, because 00:00:04.879 --> 00:00:06.639 you don't know what's going to happen next. You 00:00:06.639 --> 00:00:08.500 don't know what tomorrow is going to be like. 00:00:08.580 --> 00:00:10.419 Are you going to be loads worse and be mushed 00:00:10.419 --> 00:00:13.279 in? Or can you slowly get better and then it's 00:00:13.279 --> 00:00:16.739 time for the next one? Hope is a weird thing 00:00:16.739 --> 00:00:20.559 because even if you're really well, you've still 00:00:20.559 --> 00:00:22.140 got that thing in the back of your mind about 00:00:22.140 --> 00:00:25.769 the next flare. And that always takes its toll 00:00:25.769 --> 00:00:27.730 on you, always. So it's very difficult to have 00:00:27.730 --> 00:00:30.910 hope, but I think everyone does with IBD. You 00:00:30.910 --> 00:00:33.250 always hope that this is going to get cleared 00:00:33.250 --> 00:00:35.070 up and then you might have a bit of remission. 00:00:35.070 --> 00:00:37.969 And then you always know deep down there will 00:00:37.969 --> 00:00:40.729 be another one, though. Welcome back to Colitis 00:00:40.729 --> 00:00:43.390 Unfiltered. My name is Frank Tabering, and on 00:00:43.390 --> 00:00:47.390 this podcast, we talk all things IBD. Today, 00:00:47.469 --> 00:00:49.329 I have the pleasure of speaking with Claire, 00:00:49.450 --> 00:00:52.270 who got diagnosed with indeterminate colitis 00:00:52.270 --> 00:00:56.130 at age 18. in Nottingham, UK. Claire, welcome 00:00:56.130 --> 00:00:58.670 to the show. Hello, thank you very much, Frank. 00:00:59.570 --> 00:01:02.530 So everybody's IBD journey starts somewhere. 00:01:02.850 --> 00:01:06.609 I would like for us to start going back to the 00:01:06.609 --> 00:01:09.310 beginning. For you, could you tell us a little 00:01:09.310 --> 00:01:12.950 bit about how the disease started to manifest, 00:01:13.290 --> 00:01:17.569 first symptoms, what happened, the time that 00:01:17.569 --> 00:01:20.430 you realized that something was wrong? It was 00:01:20.430 --> 00:01:23.150 quite easy for me, actually, because I... Mine 00:01:23.150 --> 00:01:26.409 started like a bang. It was severe straight away 00:01:26.409 --> 00:01:28.810 and I had to go in hospital at those times. So 00:01:28.810 --> 00:01:33.650 I know to the day what happened. I'd gone out 00:01:33.650 --> 00:01:36.609 with some friends. The next day I was going to 00:01:36.609 --> 00:01:39.170 London to visit my sister. So in my bag, I got 00:01:39.170 --> 00:01:41.310 my purse that had quite a few bits in it, like 00:01:41.310 --> 00:01:43.129 train tickets, a bit more money than normal. 00:01:43.370 --> 00:01:45.310 I don't know why I took it out that night, but 00:01:45.310 --> 00:01:47.609 anyway, I did. And halfway through the night, 00:01:47.650 --> 00:01:50.189 when I went to the bar to look at my purse, the 00:01:50.189 --> 00:01:53.150 whole purse had gone out my bag. And that was 00:01:53.150 --> 00:01:56.250 my trigger. I still went to London. And while 00:01:56.250 --> 00:01:59.090 I was in London, I started to feel unwell. I 00:01:59.090 --> 00:02:02.489 had really bad diarrhea and just felt really 00:02:02.489 --> 00:02:04.629 ill. And I managed to get myself back home eventually 00:02:04.629 --> 00:02:08.030 after a few days with my sister. And I started 00:02:08.030 --> 00:02:11.710 to get a real severe pain on my right side. And 00:02:11.710 --> 00:02:15.050 I had to have the doctor out. He checked my tummy, 00:02:15.150 --> 00:02:18.069 pressed down, released and various things. And 00:02:18.069 --> 00:02:22.419 he thought I had appendicitis. So he said I had 00:02:22.419 --> 00:02:24.960 to go to hospital. So I went to hospital. And 00:02:24.960 --> 00:02:27.360 that's when they realized it wasn't appendicitis. 00:02:27.360 --> 00:02:30.400 It was something else. During that first week, 00:02:30.479 --> 00:02:32.599 like I say, I was quite young. I think anyway, 00:02:32.659 --> 00:02:34.759 18 is quite young still to have anything like 00:02:34.759 --> 00:02:37.159 this going on. They didn't really tell me much 00:02:37.159 --> 00:02:41.000 at first. They did various tests. I had a sigmoidoscopy 00:02:41.000 --> 00:02:43.479 where there's the camera that goes so far up. 00:02:44.520 --> 00:02:47.400 Barium enema, a barium meal. I had various things 00:02:47.400 --> 00:02:52.469 like that. constantly being sick as well and 00:02:52.469 --> 00:02:55.330 running to the loo and he said I remember him 00:02:55.330 --> 00:02:57.810 coming to the bed the junior doctor and saying 00:02:57.810 --> 00:03:01.990 you will have to have an NG tube if you carry 00:03:01.990 --> 00:03:04.569 on being sick so that panicked me at that age 00:03:04.569 --> 00:03:06.349 I'd never been to hospital for anything else 00:03:06.349 --> 00:03:10.909 and so eventually I kind of wasn't quite so sick 00:03:10.909 --> 00:03:12.789 they put me on different tablets and stuff and 00:03:12.789 --> 00:03:16.060 then I was on a drip And I was just generally 00:03:16.060 --> 00:03:19.520 feeling so unwell. And after that, it was about 00:03:19.520 --> 00:03:21.780 10 days in there, they got me on steroids and 00:03:21.780 --> 00:03:23.639 things, and things started to improve. And it's 00:03:23.639 --> 00:03:26.219 really weird. When you've been so ill and you 00:03:26.219 --> 00:03:28.259 suddenly start to improve, it's quite a euphoric 00:03:28.259 --> 00:03:31.319 feeling. You think, God, I feel better than I 00:03:31.319 --> 00:03:33.900 ever have kind of feeling. And eventually they 00:03:33.900 --> 00:03:36.300 said, you know, take these tablets and off you 00:03:36.300 --> 00:03:38.879 go and we'll do a follow -up. The problem was, 00:03:39.060 --> 00:03:41.560 what I didn't know, my parents didn't know as 00:03:41.560 --> 00:03:44.509 well, I had to stay on these tablets. I thought 00:03:44.509 --> 00:03:47.009 I was just taking that batch and that was it. 00:03:47.090 --> 00:03:50.509 So I came off them and did another flare and 00:03:50.509 --> 00:03:52.650 I was another 10 days in and all those kind of 00:03:52.650 --> 00:03:55.389 things. So there was a lot of not knowing. There 00:03:55.389 --> 00:03:58.389 wasn't much information coming from them. Eventually 00:03:58.389 --> 00:03:59.930 he came to my bedside and said, look, you've 00:03:59.930 --> 00:04:02.930 got inflammatory bowel disease. Not sure which 00:04:02.930 --> 00:04:04.949 one you've got. Could be Crohn's or ulcerative 00:04:04.949 --> 00:04:08.530 colitis. There's a thing called NACC, which at 00:04:08.530 --> 00:04:11.210 the time was the National... Association of Crohn's 00:04:11.210 --> 00:04:14.210 and Colitis is now Crohn's and Colitis UK but 00:04:14.210 --> 00:04:17.110 back in the day it was called that nothing online 00:04:17.110 --> 00:04:20.189 obviously back then in the late 80s early 90s 00:04:20.189 --> 00:04:23.129 there was nothing really to no mobile phones 00:04:23.129 --> 00:04:25.329 that you could google or anything like that so 00:04:25.329 --> 00:04:28.189 very difficult in those early days of knowing 00:04:28.189 --> 00:04:30.209 what on earth is going on here what's going to 00:04:30.209 --> 00:04:33.850 happen to me yeah just generally quite scary 00:04:33.850 --> 00:04:37.910 yeah absolutely and typically at least these 00:04:37.910 --> 00:04:41.079 days You have a colonoscopy or some further testing 00:04:41.079 --> 00:04:43.740 and you get a pretty clear diagnosis, right? 00:04:43.800 --> 00:04:45.920 Well, you have colitis, you have pancolitis or 00:04:45.920 --> 00:04:50.160 you have Crohn's disease. And what was it like 00:04:50.160 --> 00:04:54.500 for you to then navigate life immediately after 00:04:54.500 --> 00:04:59.199 this more or less detailed diagnosis and not 00:04:59.199 --> 00:05:03.079 knowing what it really was that was going on 00:05:03.079 --> 00:05:06.339 inside you besides the word? inflammatory bowel 00:05:06.339 --> 00:05:08.199 disease, but we're not sure which one. How did 00:05:08.199 --> 00:05:12.560 you navigate this uncertainty? Very difficult 00:05:12.560 --> 00:05:15.600 at that age because I was going out with friends 00:05:15.600 --> 00:05:17.300 and, you know, it's that kind of age where you're 00:05:17.300 --> 00:05:19.000 going out to the weekends, having fun, blah, 00:05:19.079 --> 00:05:21.379 blah, blah, having a drink. Obviously, every 00:05:21.379 --> 00:05:24.300 time I went out, I felt unwell. Even when they 00:05:24.300 --> 00:05:26.379 reduced me on the steroids, if I got to a certain 00:05:26.379 --> 00:05:29.439 point on the steroids, it would start, the symptoms 00:05:29.439 --> 00:05:31.360 would come back, so then I'd have to grow back 00:05:31.360 --> 00:05:34.689 up. It was just awful because... I did have a 00:05:34.689 --> 00:05:36.490 close friend at the time and she knew what was 00:05:36.490 --> 00:05:38.250 going on and everything, but I don't think she 00:05:38.250 --> 00:05:40.589 quite understood quite how horrible it was to 00:05:40.589 --> 00:05:43.730 live with and why I felt so unwell and couldn't 00:05:43.730 --> 00:05:45.110 go out and things like that. It should be brilliant, 00:05:45.189 --> 00:05:47.490 don't get me wrong, but no one knows until you've 00:05:47.490 --> 00:05:51.930 had it. It's pretty common that steroids are 00:05:51.930 --> 00:05:53.850 referred to as a blessing and a curse, right? 00:05:54.189 --> 00:05:57.490 Because the blessing is obvious. It can pull 00:05:57.490 --> 00:06:00.389 you out of your symptoms pretty rapidly. But 00:06:00.389 --> 00:06:02.490 there's a lot of side effects. They're only meant 00:06:02.490 --> 00:06:05.709 to be taken short term. So what was that like 00:06:05.709 --> 00:06:07.810 for you? Did you experience a lot of side effects 00:06:07.810 --> 00:06:11.029 to the steroids? And how long were you on them? 00:06:11.410 --> 00:06:13.629 Well, because I'd had these flare -ups. The very 00:06:13.629 --> 00:06:16.050 first one, I was probably on them for quite a 00:06:16.050 --> 00:06:18.750 few days in the hospital. Then I came out and 00:06:18.750 --> 00:06:20.870 flared again another 10 days. There was another 00:06:20.870 --> 00:06:23.009 load of intravenous steroids and then onto the 00:06:23.009 --> 00:06:25.350 oral. And then that happened for a little while 00:06:25.350 --> 00:06:29.519 until they kind of balanced me out. I got the 00:06:29.519 --> 00:06:32.800 moon face. I was starvingly hungry. I had everything 00:06:32.800 --> 00:06:35.620 in sight and wide awake at night. It was one 00:06:35.620 --> 00:06:38.240 of those kind of things. But yeah, the moon face, 00:06:38.360 --> 00:06:41.560 yeah. I mean, it does go once you come off them, 00:06:41.560 --> 00:06:44.720 but it's unexpected, really. It's very weird. 00:06:45.199 --> 00:06:49.319 It really is. It really is. So you're on that 00:06:49.319 --> 00:06:52.680 for a while. How did your IBD journey continue 00:06:52.680 --> 00:06:55.779 from there on? Take us a little bit through the 00:06:55.779 --> 00:06:58.879 next. weeks months even years because ultimately 00:06:58.879 --> 00:07:02.019 what i want to get to is to the point in your 00:07:02.019 --> 00:07:06.740 life where you start to feel better it should 00:07:06.740 --> 00:07:09.399 take a little while to feel fully better because 00:07:09.399 --> 00:07:12.300 i always had a flare at least once or twice a 00:07:12.300 --> 00:07:14.800 year that was enough to go on steroids again 00:07:14.800 --> 00:07:17.660 they put me on old salazine which was one of 00:07:17.660 --> 00:07:21.240 the like salazine kind of family which seemed 00:07:21.240 --> 00:07:25.079 to help then i i got married. I was still, I 00:07:25.079 --> 00:07:29.839 got married. I had children and had a flesh pretty 00:07:29.839 --> 00:07:31.920 much just before I was giving birth. So, but 00:07:31.920 --> 00:07:35.240 yeah, there was lots of difficult times for me 00:07:35.240 --> 00:07:37.480 because I ended up being in hospital when my 00:07:37.480 --> 00:07:40.439 daughter was only two and my son was four. So, 00:07:40.439 --> 00:07:42.680 you know, they'd come and visit me and it was 00:07:42.680 --> 00:07:44.540 horrible because they'd have to go. And it was, 00:07:44.540 --> 00:07:46.540 it was just awful at that, that sort of young 00:07:46.540 --> 00:07:51.170 age, teens to twenties kind of thing. regularly 00:07:51.170 --> 00:07:53.790 having flares and regularly feeling really poorly 00:07:53.790 --> 00:07:57.750 but generally improved with steroids again and 00:07:57.750 --> 00:07:59.550 it was one of those I was on and off steroids 00:07:59.550 --> 00:08:01.670 for many years probably because back then they 00:08:01.670 --> 00:08:04.029 didn't really have the biologics weren't around 00:08:04.029 --> 00:08:07.110 originally and so it was all those kind of things 00:08:07.110 --> 00:08:11.250 and she tried me on nicotine patches that was 00:08:11.250 --> 00:08:13.250 one of the things she thought would work and 00:08:13.250 --> 00:08:16.170 I had some really obscure things like that and 00:08:16.170 --> 00:08:18.850 then eventually I they gave me they put me on 00:08:18.850 --> 00:08:22.050 azathioprine which I did feel quite unwell at 00:08:22.050 --> 00:08:25.629 first sickly but then I got into it and I was 00:08:25.629 --> 00:08:29.709 absolutely well for 14 years after that with 00:08:29.709 --> 00:08:32.629 the acethypin. I had the odd little funny thing 00:08:32.629 --> 00:08:35.850 but nothing like I was and it really kept me 00:08:35.850 --> 00:08:39.210 on an even keel so as soon as I came off them 00:08:39.210 --> 00:08:42.509 a month or two later I was back in a flare and 00:08:42.509 --> 00:08:44.429 it was so horrible because I thought I've been 00:08:44.429 --> 00:08:47.149 all this time and now I'm back in this flare 00:08:47.149 --> 00:08:49.850 and it was horrible. you know, having accidents 00:08:49.850 --> 00:08:53.490 at work and just generally horrible. And then 00:08:53.490 --> 00:08:57.809 I took time off. It was in December 2015. This 00:08:57.809 --> 00:09:03.110 was by now about 10, 11 years ago. And that flare 00:09:03.110 --> 00:09:06.269 grumbled along and I started to get worse and 00:09:06.269 --> 00:09:10.070 worse. I felt a bit bedbound -ish by the time 00:09:10.070 --> 00:09:15.990 I'd done. I'd got anal skin tags that were swollen. 00:09:16.730 --> 00:09:18.649 that they appeared suddenly, and apparently that's 00:09:18.649 --> 00:09:21.149 a Croden's thing, which I didn't know. I was 00:09:21.149 --> 00:09:24.750 very well nourished. The gastroenterologist was 00:09:24.750 --> 00:09:28.169 okay, but I think they kind of left me more than 00:09:28.169 --> 00:09:30.590 they did back in the day, whether it's so busy 00:09:30.590 --> 00:09:34.549 with the NHS, and I kind of almost disbelieved 00:09:34.549 --> 00:09:37.190 a little bit, if you like, as to how bad I actually 00:09:37.190 --> 00:09:41.009 felt. The colonoscopies did show severe flare 00:09:41.009 --> 00:09:44.509 with ulcers, but it was just left -sided right 00:09:44.509 --> 00:09:46.539 up to the... under your rib it was that kind 00:09:46.539 --> 00:09:48.440 of but it didn't go all the way around my bowel 00:09:48.440 --> 00:09:51.360 but it never cleared and it became worse and 00:09:51.360 --> 00:09:55.200 worse so eventually after they didn't really 00:09:55.200 --> 00:09:57.820 listen to me particularly my husband took me 00:09:57.820 --> 00:10:00.100 to A &E because I started to not be able to wee 00:10:00.100 --> 00:10:03.679 and I know that can be a sign of sepsis so off 00:10:03.679 --> 00:10:07.460 we went to the hospital I got an award and the 00:10:07.460 --> 00:10:11.080 next minute the colorectal surgeon came to see 00:10:11.080 --> 00:10:13.139 me and he said Claire you are so unwell that 00:10:13.139 --> 00:10:15.620 bowel's got to come out how about tomorrow and 00:10:15.620 --> 00:10:18.159 that was so scary just to suddenly bang there 00:10:18.159 --> 00:10:19.820 you go it's coming out tomorrow I mean I knew 00:10:19.820 --> 00:10:22.539 all about stomas and ileostomies because obviously 00:10:22.539 --> 00:10:24.740 when you've got this disease you do come across 00:10:24.740 --> 00:10:29.039 it a bit in literature and stuff the actual when 00:10:29.039 --> 00:10:30.799 they're told you've actually got to have one 00:10:30.799 --> 00:10:34.519 it's absolutely terrifying and um but I was so 00:10:34.519 --> 00:10:37.470 ill I thought I've got to do it Anyway, he said, 00:10:37.529 --> 00:10:40.889 we'll see what this CT is like. And if it's bad, 00:10:40.970 --> 00:10:44.049 we'll take you down Sunday morning. And Sunday 00:10:44.049 --> 00:10:46.789 morning, I went down. And because I'd been so 00:10:46.789 --> 00:10:49.570 unwell, he said, we're going to have to do an 00:10:49.570 --> 00:10:52.730 open surgery. We won't remove the rectum just 00:10:52.730 --> 00:10:55.470 yet because you're not going to heal very well 00:10:55.470 --> 00:10:56.929 because you're unwell. We'll do that at a later 00:10:56.929 --> 00:10:59.490 date. So that's what happened. I went down for 00:10:59.490 --> 00:11:01.990 surgery. I was on the high dependency unit for 00:11:01.990 --> 00:11:03.769 four days, but she said I would be because they 00:11:03.769 --> 00:11:05.710 wanted to make sure I was well looked after. 00:11:06.719 --> 00:11:09.440 And, yeah, just recovered from there. But I was 00:11:09.440 --> 00:11:11.860 in hospital for nearly three months because I 00:11:11.860 --> 00:11:15.360 had a rectal stump blowout. So the stitches didn't 00:11:15.360 --> 00:11:17.779 hold in rectum. It caused pelvic sepsis. So I'd 00:11:17.779 --> 00:11:20.639 have a catheter put up there. And it wasn't fun. 00:11:20.820 --> 00:11:23.919 I'd have a nasogastric feeding tube. And there 00:11:23.919 --> 00:11:27.200 was a lot of unwellness there, mentally as well. 00:11:27.559 --> 00:11:30.259 I did go into a bit of a depression in the hospital, 00:11:30.379 --> 00:11:33.700 thinking I'd never get out again. And then from 00:11:33.700 --> 00:11:37.299 there to here. healed up they removed the rectum 00:11:37.299 --> 00:11:39.879 and now i'm left with fistulas down that end 00:11:39.879 --> 00:11:43.240 but very well elsewhere so the actual stoma is 00:11:43.240 --> 00:11:47.120 great uh it's just the down below bits that aren't 00:11:47.120 --> 00:11:50.779 great now but i think that's that happened because 00:11:50.779 --> 00:11:53.519 i was so unwell when i had the surgery i think 00:11:53.519 --> 00:11:55.320 it's kind of a knock -on effect from all that 00:11:55.320 --> 00:11:59.960 yeah well it's a lot to dissect there so Yeah, 00:11:59.960 --> 00:12:02.440 it's quite a story. It's quite a story indeed, 00:12:02.519 --> 00:12:05.539 yeah. And I want to jump back in time shortly, 00:12:05.679 --> 00:12:07.940 but since we're on the topic of surgery, I think 00:12:07.940 --> 00:12:10.279 you said something there that stuck with me that, 00:12:10.279 --> 00:12:12.679 you know, you basically had, what, less than 00:12:12.679 --> 00:12:15.500 24 hours between a surgeon telling you, hey, 00:12:15.700 --> 00:12:17.740 we need to take out your bowels. How about tomorrow? 00:12:18.659 --> 00:12:21.519 You mentioned that that was a very scary moment. 00:12:22.419 --> 00:12:25.379 So you only had very limited time to process 00:12:25.379 --> 00:12:31.299 this. first of all, the fear, and then sort of 00:12:31.299 --> 00:12:34.179 the reality that set in that, hey, in 12 hours, 00:12:34.379 --> 00:12:37.120 I'll be in surgery. How did you deal with that? 00:12:37.200 --> 00:12:39.940 How did you prepare to accept what's going to 00:12:39.940 --> 00:12:42.179 happen to you in that very short amount of time? 00:12:42.960 --> 00:12:45.879 It was difficult. The stoma nurse came to visit 00:12:45.879 --> 00:12:48.279 me because at least I had time for her to cite 00:12:48.279 --> 00:12:50.259 the stoma. So they put a little dot as to where 00:12:50.259 --> 00:12:53.080 would be best for me. And I chatted to her a 00:12:53.080 --> 00:12:54.879 little bit about it. And there was a lady next 00:12:54.879 --> 00:12:57.610 to me. in the bed who'd had one so you know I 00:12:57.610 --> 00:12:59.629 mean I'd got a bit there and because I was quite 00:12:59.629 --> 00:13:02.029 unwell still I wasn't although I was fearing 00:13:02.029 --> 00:13:04.710 it I also wanted to have it as well at the same 00:13:04.710 --> 00:13:07.509 time I thought maybe it'll make me really well 00:13:07.509 --> 00:13:10.649 and I didn't imagine the problems I'd have during 00:13:10.649 --> 00:13:14.509 that short time after but you know in my mind 00:13:14.509 --> 00:13:17.129 I thought maybe just maybe I won't ever have 00:13:17.129 --> 00:13:18.889 to deal with this lot again and my son said to 00:13:18.889 --> 00:13:21.429 me you know it's a diaper and all those meds 00:13:21.429 --> 00:13:23.629 you'll never have to be on those you know that 00:13:23.629 --> 00:13:26.389 kind of heavy duty stuff the steroids and that 00:13:26.389 --> 00:13:29.570 it was very difficult I was very frightened and 00:13:29.570 --> 00:13:32.570 when they took me down I remember them they're 00:13:32.570 --> 00:13:34.269 going to like the pre -theater room where they 00:13:34.269 --> 00:13:36.649 do the anesthetic and I just said to him I'm 00:13:36.649 --> 00:13:38.429 really really scared can you give me something 00:13:38.429 --> 00:13:40.950 and then he said yeah of course and then give 00:13:40.950 --> 00:13:42.870 me something and I don't remember anything after 00:13:42.870 --> 00:13:45.570 that luckily I just don't I couldn't go through 00:13:45.570 --> 00:13:48.480 with going through into the theater and all that 00:13:48.480 --> 00:13:53.220 business it was very scary sure sure so that 00:13:53.220 --> 00:13:56.080 that was sort of the probably one of the worst 00:13:56.080 --> 00:13:58.700 moments or one of the worst parts of your IBD 00:13:58.700 --> 00:14:03.259 journey today how are you feeling are you still 00:14:03.259 --> 00:14:07.799 being are you still on medication um are you 00:14:07.799 --> 00:14:09.779 and this is one of the things right because a 00:14:09.779 --> 00:14:11.360 lot of people there's this misconception that 00:14:11.360 --> 00:14:13.240 you know you have surgery and all of a sudden 00:14:13.240 --> 00:14:16.090 your IBD is cured how is that for you How are 00:14:16.090 --> 00:14:20.190 you feeling today? I mean, I'm well in the sense 00:14:20.190 --> 00:14:22.549 that I don't have these flare -ups at all. I 00:14:22.549 --> 00:14:24.149 obviously don't go running to a toilet because 00:14:24.149 --> 00:14:26.769 I'm not able to. It just goes in the bag. So, 00:14:26.809 --> 00:14:29.330 and I put weight, quite a bit more weight on 00:14:29.330 --> 00:14:31.070 than I was. I was very skinny back then because 00:14:31.070 --> 00:14:33.330 obviously you're unwell and things like that. 00:14:33.490 --> 00:14:36.029 And the weight just never went on. Now it does. 00:14:36.070 --> 00:14:39.009 It piles on because you're so well. But because, 00:14:39.169 --> 00:14:43.330 like you say, I can't draw a line under it because 00:14:43.330 --> 00:14:47.320 I'm now... got these fistulas um perianal fish 00:14:47.320 --> 00:14:49.559 you know crohn's disease or whatever it is they 00:14:49.559 --> 00:14:52.879 think it is perianal crohn's it's never gone 00:14:52.879 --> 00:14:57.240 medication wise i'm not really on anything bar 00:14:57.240 --> 00:15:00.279 the old painkiller for that but yeah it's not 00:15:00.279 --> 00:15:03.080 ended the story i can't draw a line under it 00:15:03.080 --> 00:15:05.379 i'm not fully well in that respect because it's 00:15:05.379 --> 00:15:07.379 it's all connected to me it's all connected to 00:15:07.379 --> 00:15:10.879 what happened so i've still still got that to 00:15:10.879 --> 00:15:15.149 deal with you were well for About 14 years, you 00:15:15.149 --> 00:15:18.129 mentioned. Then you had a big setback, surgery. 00:15:19.710 --> 00:15:23.710 Today, do you feel that you've gotten your life 00:15:23.710 --> 00:15:27.669 back? If it was just the stoma surgery, I would 00:15:27.669 --> 00:15:30.850 say absolutely. I think they should consider 00:15:30.850 --> 00:15:33.909 that more as an option rather than a last resort. 00:15:34.029 --> 00:15:36.990 That's how I feel about it. I think some people 00:15:36.990 --> 00:15:38.809 would hugely benefit from it. I know they're 00:15:38.809 --> 00:15:41.529 scared and everything, but their life will be 00:15:41.529 --> 00:15:45.120 changed. for the good mostly if it was just the 00:15:45.120 --> 00:15:48.500 stoma i would say yes my life is so much better 00:15:48.500 --> 00:15:53.100 and it is it's i can still say it is but i still 00:15:53.100 --> 00:15:55.740 have these other issues where i'm leaking and 00:15:55.740 --> 00:15:59.019 doing from another part now so that that bit 00:15:59.019 --> 00:16:04.559 i can't quite get over yet because it's it's 00:16:04.559 --> 00:16:06.299 since i had the surgery so it's been 10 years 00:16:06.299 --> 00:16:09.059 now and i've had many surgeries on that part 00:16:09.059 --> 00:16:11.460 I've had a flap surgery they've took muscle out 00:16:11.460 --> 00:16:14.059 my thigh and so I've had some big surgeries down 00:16:14.059 --> 00:16:18.159 there which hasn't cured it so I can't say I'm 00:16:18.159 --> 00:16:22.259 fully well but that is a complication not really 00:16:22.259 --> 00:16:25.759 what most people would get after a stoma surgery 00:16:25.759 --> 00:16:29.240 if I wished I'd had it a few months earlier than 00:16:29.240 --> 00:16:32.440 I did and I think I'd have recovered quicker 00:16:32.440 --> 00:16:36.669 and better so if you focus on the more or less 00:16:36.669 --> 00:16:39.909 positive then. You said that part of your IBD 00:16:39.909 --> 00:16:42.929 journey, you definitely feel better. For people 00:16:42.929 --> 00:16:44.990 who are scared of surgery, for people who think 00:16:44.990 --> 00:16:47.570 that this is the most horrifying thing that can 00:16:47.570 --> 00:16:49.269 happen to them, even though it might make them 00:16:49.269 --> 00:16:52.990 feel better, what's life like with a stoma? When 00:16:52.990 --> 00:16:56.230 I first had it, when I was in the hospital, when 00:16:56.230 --> 00:16:58.750 the stoma nurse first came and said, well, we're 00:16:58.750 --> 00:17:02.029 going to change your stoma bag, I said, I don't 00:17:02.029 --> 00:17:04.650 think I can look at it. I'm not ready for it 00:17:04.650 --> 00:17:06.789 yet. You know what I mean? And so she did it 00:17:06.789 --> 00:17:09.150 for me and I didn't look at it. The second time, 00:17:09.230 --> 00:17:11.869 she said, let's have your husband in and we'll 00:17:11.869 --> 00:17:13.710 try and see if we can do it together and blah, 00:17:13.789 --> 00:17:15.670 blah. And I had a quick look at it. It was a 00:17:15.670 --> 00:17:19.769 bit grim. It's a weird thing to have there. But 00:17:19.769 --> 00:17:22.230 you just get used to it. It's part of, you know, 00:17:22.309 --> 00:17:25.210 it's so, so weird. You get used to it. The bag's 00:17:25.210 --> 00:17:28.130 nothing. You have the odd bit of like the odd 00:17:28.130 --> 00:17:31.470 leak and blah, blah, blah. But in general, you 00:17:31.470 --> 00:17:34.069 can't feel it. You don't know it's there unless 00:17:34.069 --> 00:17:36.029 it's filling up and you need to empty the bag. 00:17:36.130 --> 00:17:38.230 But you can't feel it. There's no nerve endings 00:17:38.230 --> 00:17:41.529 in it. So you could actually feel like you're 00:17:41.529 --> 00:17:44.809 100 % better. But it is a weird thing to see 00:17:44.809 --> 00:17:47.410 for the first time. Yeah, it takes a little bit 00:17:47.410 --> 00:17:50.470 of getting used to and then it becomes part of 00:17:50.470 --> 00:17:55.049 you. It becomes part of your life as well. Now, 00:17:55.349 --> 00:18:00.569 you know, you were not well. then you went on 00:18:00.569 --> 00:18:03.470 the azathiopine, you were well. And one thing 00:18:03.470 --> 00:18:05.990 with IBD patients is that, you know, once they 00:18:05.990 --> 00:18:08.210 have the chance to either go into remission or 00:18:08.210 --> 00:18:11.529 they get a chance to experience a period of feeling 00:18:11.529 --> 00:18:14.509 well, there's a certain sense of fear that creeps 00:18:14.509 --> 00:18:16.569 in about, hey, when is the next flare going to 00:18:16.569 --> 00:18:20.789 show up? Or will I get worse again? Will I get 00:18:20.789 --> 00:18:22.630 so worse that I might have to do surgery at some 00:18:22.630 --> 00:18:26.049 point? your experience is interesting because 00:18:26.049 --> 00:18:28.349 again you were really unwell then you got better 00:18:28.349 --> 00:18:30.569 and then sort of it really hit you hard years 00:18:30.569 --> 00:18:35.250 after your diagnosis how did you keep hope alive 00:18:35.250 --> 00:18:40.410 when it just felt that wow you my body really 00:18:40.410 --> 00:18:43.950 is working against me now gosh that's a difficult 00:18:43.950 --> 00:18:48.109 one um It is hard to keep hope alive, to be fair, 00:18:48.150 --> 00:18:49.549 because you don't know what's going to happen 00:18:49.549 --> 00:18:51.529 next. You don't know what tomorrow is going to 00:18:51.529 --> 00:18:53.269 be like. Are you going to be loads worse and 00:18:53.269 --> 00:18:56.289 be rushed in? Or can you slowly get better and 00:18:56.289 --> 00:18:59.869 then it's time for the next one? Hope is a weird 00:18:59.869 --> 00:19:05.309 thing because it's a bit, you feel more, I don't 00:19:05.309 --> 00:19:08.349 want to say depressed, but even if you're really 00:19:08.349 --> 00:19:10.589 well, you've still got that thing in the back 00:19:10.589 --> 00:19:14.039 of your mind about the next flare. And that always 00:19:14.039 --> 00:19:16.460 takes its toll on you, always. So it's very difficult 00:19:16.460 --> 00:19:19.140 to have hope. But I think everyone does with 00:19:19.140 --> 00:19:22.059 IBD. You always hope that this is going to get 00:19:22.059 --> 00:19:24.160 cleared up and then you might have a bit of remission. 00:19:24.240 --> 00:19:27.059 And then you always know deep down there will 00:19:27.059 --> 00:19:30.660 be another one, though. I think, yeah, I always 00:19:30.660 --> 00:19:32.980 knew I would have another flare. Even after those 00:19:32.980 --> 00:19:36.500 14 years, I never really thought they were gone. 00:19:36.519 --> 00:19:38.720 Because I'd had so many previously, I thought, 00:19:38.720 --> 00:19:41.700 there's no way it's gone fully. I just didn't 00:19:41.700 --> 00:19:44.900 believe it. Absolutely. No, I can see that that's 00:19:44.900 --> 00:19:47.400 a way of thinking that you don't really have 00:19:47.400 --> 00:19:52.000 a choice but to submit yourself to because it's 00:19:52.000 --> 00:19:54.519 a traumatic event, right? Or a series of traumatic 00:19:54.519 --> 00:19:58.319 events. But before I want to ask you a couple 00:19:58.319 --> 00:20:00.380 of questions about that part, I want to go back 00:20:00.380 --> 00:20:03.299 in time. You were diagnosed at a very young age. 00:20:03.680 --> 00:20:06.460 And one might argue it was a crucial or is a 00:20:06.460 --> 00:20:11.470 crucial age in a human being's life. What was 00:20:11.470 --> 00:20:14.789 that like for you to not only be diagnosed with, 00:20:14.910 --> 00:20:18.509 at that point, indeterminate colitis, but to 00:20:18.509 --> 00:20:22.309 also navigate those crucial years, this end of 00:20:22.309 --> 00:20:25.730 the teenage years, beginning of your adulthood? 00:20:26.470 --> 00:20:29.869 What was that like for you? I started with anxiety 00:20:29.869 --> 00:20:32.809 issues and panic attacks and things like that. 00:20:32.869 --> 00:20:35.450 And I think it was down to that. in case I had 00:20:35.450 --> 00:20:37.589 a flare or felt unwell when I was out I used 00:20:37.589 --> 00:20:40.230 to end up carrying I used to feel sick and actually 00:20:40.230 --> 00:20:43.589 be sick if I had this anxiety attack so I'd have 00:20:43.589 --> 00:20:46.029 to carry like a little bag with me in case I 00:20:46.029 --> 00:20:50.309 felt sick and it did actually cause me a few 00:20:50.309 --> 00:20:53.490 issues I'd you know plan to go out be quite excited 00:20:53.490 --> 00:20:56.049 about it when it came I'd start feeling really 00:20:56.049 --> 00:20:58.210 unwell and sometimes I'd end up not being able 00:20:58.210 --> 00:21:00.529 to go sometimes I'd go and then be all right 00:21:00.529 --> 00:21:02.960 whilst I was there I always had this anxiety 00:21:02.960 --> 00:21:06.039 about going out and I do think it was probably 00:21:06.039 --> 00:21:09.319 down to the ulcerative colitis at that age. When 00:21:09.319 --> 00:21:12.299 I met my husband, I told him he was absolutely 00:21:12.299 --> 00:21:15.079 fine and he's been fabulous all the way through. 00:21:15.579 --> 00:21:18.039 So I was very lucky in that respect because obviously 00:21:18.039 --> 00:21:21.940 he's put enemas in me. I mean, you've probably 00:21:21.940 --> 00:21:24.559 had them before where you've had the foam enemas 00:21:24.559 --> 00:21:29.470 up there. He's helped me with that. Yeah, just 00:21:29.470 --> 00:21:32.769 generally all those horrible things. So that's 00:21:32.769 --> 00:21:37.450 one thing. But then you enter into motherhood. 00:21:37.990 --> 00:21:39.970 That's a whole different ballgame because when 00:21:39.970 --> 00:21:42.349 we're flaring, when we're sick, we have the tendency 00:21:42.349 --> 00:21:44.470 to want to be alone, to isolate ourselves, potentially 00:21:44.470 --> 00:21:47.190 to suffer in silence, right? To just deal with 00:21:47.190 --> 00:21:51.089 our pain ourselves. But when you have kids, you 00:21:51.089 --> 00:21:53.809 don't necessarily have that luxury. So tell me 00:21:53.809 --> 00:21:57.319 how you navigate in motherhood. I was very, very 00:21:57.319 --> 00:22:00.839 lucky that my mum and my mother -in -law were 00:22:00.839 --> 00:22:04.779 either semi -retired or not working anymore. 00:22:05.640 --> 00:22:08.000 And they were just brilliant. If ever I was in 00:22:08.000 --> 00:22:09.279 a flare -up, because my husband would obviously 00:22:09.279 --> 00:22:10.980 still be working, so he couldn't necessarily 00:22:10.980 --> 00:22:12.980 have them and things like that when they were 00:22:12.980 --> 00:22:15.579 very young. And they just took over completely 00:22:15.579 --> 00:22:19.259 for me. So I didn't really have any problems. 00:22:19.299 --> 00:22:21.140 I was so, so lucky. And I know not everybody 00:22:21.140 --> 00:22:24.390 has that at all. They may have no family. And 00:22:24.390 --> 00:22:28.970 I cannot imagine how will you feel, do you want 00:22:28.970 --> 00:22:31.309 to flare how you could look after kids? I just 00:22:31.309 --> 00:22:32.829 don't know how you could do it. I mean, people 00:22:32.829 --> 00:22:35.829 do. I know they do. And they just push through 00:22:35.829 --> 00:22:38.309 it and take them to nursery and take them to 00:22:38.309 --> 00:22:42.630 school. But I was lucky enough to have a family 00:22:42.630 --> 00:22:45.250 that could rally around at those important times. 00:22:46.490 --> 00:22:50.869 Yeah, that's great. Now, how do you explain kids 00:22:50.869 --> 00:22:54.660 that mommy is very ill? When my daughter came, 00:22:54.880 --> 00:22:57.079 well, my son, he wasn't so bad. He was a bit 00:22:57.079 --> 00:23:00.940 older and he was fine with granny and nana and 00:23:00.940 --> 00:23:03.359 things like that, you know, mostly. But my daughter 00:23:03.359 --> 00:23:06.299 was a bit younger and I remember having to tell 00:23:06.299 --> 00:23:08.259 her, you know, I'm just going to be in either 00:23:08.259 --> 00:23:10.480 hospital or I'm well up in bed, whichever it 00:23:10.480 --> 00:23:12.940 might be, you know, because I've got a poorly 00:23:12.940 --> 00:23:16.059 tummy and I'm not very well. And just generally 00:23:16.059 --> 00:23:17.839 telling them those kind of things. They took 00:23:17.839 --> 00:23:20.240 it fairly well, to be fair. I mean, a lot of 00:23:20.240 --> 00:23:22.539 time they'd come running up. to talk to me if 00:23:22.539 --> 00:23:24.319 I was in bed but that was fair enough you know 00:23:24.319 --> 00:23:27.700 I can't I'd want to see him generally but I just 00:23:27.700 --> 00:23:29.799 couldn't play with them or do things like that 00:23:29.799 --> 00:23:34.980 so in general they were fine and I found it not 00:23:34.980 --> 00:23:37.940 too bad to explain to them they seemed to understand 00:23:37.940 --> 00:23:40.759 vaguely mummy was poorly and when I was in hospital 00:23:40.759 --> 00:23:42.579 mummy's poorly but I'll be home soon you know 00:23:42.579 --> 00:23:45.059 a few days I'll be out that kind of thing because 00:23:45.059 --> 00:23:47.079 they could see me they'd come and visit me when 00:23:47.079 --> 00:23:49.559 I wasn't in my worst state obviously they could 00:23:49.559 --> 00:23:52.390 come and see me And know that I was all right 00:23:52.390 --> 00:23:57.750 and fine and would be home soon. You share your 00:23:57.750 --> 00:23:59.509 story and part of your story online as well. 00:24:00.549 --> 00:24:03.930 I've read some of your stuff. And on one of your 00:24:03.930 --> 00:24:08.170 blog posts, you, and I quote, wrote, life does 00:24:08.170 --> 00:24:11.829 not have to end after a traumatic event. It just 00:24:11.829 --> 00:24:16.049 changes. What do you mean by that? Explain the 00:24:16.049 --> 00:24:19.589 change. Because you're never going to be. I mean, 00:24:19.609 --> 00:24:22.130 this is the surgery, I guess is what you're talking 00:24:22.130 --> 00:24:24.970 about, maybe, yeah. You're never going to be 00:24:24.970 --> 00:24:30.789 the same as you were before, I don't think, because 00:24:30.789 --> 00:24:34.009 mentally you had a really challenging traumatic 00:24:34.009 --> 00:24:36.950 experience, maybe had to have counselling, which 00:24:36.950 --> 00:24:39.930 I did have to have a bit, even was diagnosed 00:24:39.930 --> 00:24:44.329 with some amount of post -traumatic stress at 00:24:44.329 --> 00:24:49.319 the time. What helped me and what I think got 00:24:49.319 --> 00:24:53.539 me back to being more or less me was doing my 00:24:53.539 --> 00:24:57.480 blog and joining the local ileostomy association 00:24:57.480 --> 00:24:59.480 that we have here in the UK and doing things 00:24:59.480 --> 00:25:02.380 like that. Because I think talking about it absolutely 00:25:02.380 --> 00:25:06.680 helps get it all out there. It was therapeutic 00:25:06.680 --> 00:25:09.019 to me. My husband sometimes said, oh, don't put, 00:25:09.079 --> 00:25:12.039 you know, you don't have to go too far with what 00:25:12.039 --> 00:25:13.519 you put. I said, yeah, but this is the truth. 00:25:13.700 --> 00:25:17.299 This is, you know, this is how it was and this 00:25:17.299 --> 00:25:20.859 is how it is. So, yeah, I mean, sometimes I think 00:25:20.859 --> 00:25:23.859 my blog can go the other way and may scare a 00:25:23.859 --> 00:25:28.420 few people, maybe. But on the other hand, people 00:25:28.420 --> 00:25:32.019 may want to know. And so I've had quite a lot 00:25:32.019 --> 00:25:35.059 of good. things from it i've not really had any 00:25:35.059 --> 00:25:39.299 negative uh things from my blog but i that that 00:25:39.299 --> 00:25:41.980 is what helped me get back to almost being me 00:25:41.980 --> 00:25:46.680 like say almost because my body has changed i've 00:25:46.680 --> 00:25:48.839 always got this bag stuck on me now and i'm never 00:25:48.839 --> 00:25:52.000 ever gonna get unless some miraculous you know 00:25:52.000 --> 00:25:55.019 new medication or something comes along new surgical 00:25:55.019 --> 00:25:59.599 skills it'll always be there so i am different 00:25:59.599 --> 00:26:02.259 in that respect You mentioned your body changing. 00:26:02.359 --> 00:26:04.799 I think when you look at social media today, 00:26:04.880 --> 00:26:09.099 especially if you look deeper into IBD communities 00:26:09.099 --> 00:26:14.180 that are online, you see a global, I don't want 00:26:14.180 --> 00:26:16.960 to, maybe, yeah, maybe I could call it an awakening 00:26:16.960 --> 00:26:20.000 of some sorts of people really opening up about 00:26:20.000 --> 00:26:23.930 life with IBD, about life with an ostomy. You 00:26:23.930 --> 00:26:27.589 see so many women posting photos in bikinis with 00:26:27.589 --> 00:26:31.349 their ostomies and not just to pose, but to really 00:26:31.349 --> 00:26:37.450 show that it's perfectly okay. For you, how did 00:26:37.450 --> 00:26:44.630 IBD impact your body image? I was very thin because 00:26:44.630 --> 00:26:47.789 I was unwell quite a bit. So I don't think I 00:26:47.789 --> 00:26:52.329 would have worn a bikini. I was so thin. Now 00:26:52.329 --> 00:26:56.990 having a stoma, I do wear a bikini. It's so weird. 00:26:57.029 --> 00:26:59.890 And yet I'm much older. I've obviously got parts 00:26:59.890 --> 00:27:01.750 of my body I don't like anymore because I'm getting 00:27:01.750 --> 00:27:04.990 older. But I will still wear the bikini. There 00:27:04.990 --> 00:27:07.069 are times where I might wear one little cover 00:27:07.069 --> 00:27:09.450 -up. Depending on how I feel on the day, I still 00:27:09.450 --> 00:27:12.049 get the odd bit people are staring at me kind 00:27:12.049 --> 00:27:15.309 of days. And other days, I don't care. You know, 00:27:15.309 --> 00:27:18.049 they can ask me or not. So I still get that a 00:27:18.049 --> 00:27:21.680 bit. I like to see it on social media. It is 00:27:21.680 --> 00:27:27.180 helping the stigma of having stoma and IBD. It's 00:27:27.180 --> 00:27:31.680 helping people understand what IBD is and how 00:27:31.680 --> 00:27:35.839 serious it can be by having these really seriously 00:27:35.839 --> 00:27:38.900 major surgeries that you have that will change 00:27:38.900 --> 00:27:42.539 your life completely. Absolutely. It's part of 00:27:42.539 --> 00:27:49.079 making the invisible visible, I'd say. And yeah. 00:27:49.640 --> 00:27:53.180 So as an IBD veteran, we've talked a little bit 00:27:53.180 --> 00:27:55.940 about introspection. We talked about the physical 00:27:55.940 --> 00:28:01.400 aspect. As an IBD veteran, how has IBD changed 00:28:01.400 --> 00:28:05.180 you as a person? It's made me a bit more caring 00:28:05.180 --> 00:28:09.720 of others, weirdly. Other people's ailments or, 00:28:09.779 --> 00:28:13.410 you know, disabilities. Because I know. what 00:28:13.410 --> 00:28:17.109 it's like to be looked at maybe or go to a disabled 00:28:17.109 --> 00:28:19.470 loo and be looked at thinking you look alright 00:28:19.470 --> 00:28:23.789 but knowing deep down I'm not. So I don't question 00:28:23.789 --> 00:28:27.769 it as much and I feel for other people's journeys 00:28:27.769 --> 00:28:31.430 of whatever that may be and I do think I'm a 00:28:31.430 --> 00:28:33.809 little bit more caring person and want to help 00:28:33.809 --> 00:28:35.769 and want to talk to people about it and if they 00:28:35.769 --> 00:28:38.450 can come to me I'm happy to talk about it and 00:28:38.450 --> 00:28:42.059 that's what it's made me like. That's a very 00:28:42.059 --> 00:28:45.960 good point. And this actually ties into my next 00:28:45.960 --> 00:28:51.079 question is, like, we live in an age where you 00:28:51.079 --> 00:28:54.160 can very easily find out a lot about IBD in a 00:28:54.160 --> 00:28:57.460 matter of minutes. But I do feel based on what 00:28:57.460 --> 00:29:01.160 I see online, on forums, questions that people 00:29:01.160 --> 00:29:04.640 ask, maybe they've done their research, maybe 00:29:04.640 --> 00:29:06.019 not. Maybe the research that they've done is 00:29:06.019 --> 00:29:08.079 not reassuring them. They still ask those questions. 00:29:09.680 --> 00:29:11.019 A lot of people don't know how to handle this. 00:29:11.059 --> 00:29:12.799 They don't know how to deal with this. And one 00:29:12.799 --> 00:29:14.400 of the things that I keep seeing is that people 00:29:14.400 --> 00:29:18.279 who are being treated fine, but then maybe the 00:29:18.279 --> 00:29:21.940 treatments fail or they just can't seem to escape 00:29:21.940 --> 00:29:25.380 repetitive flaring, right? Or people that face 00:29:25.380 --> 00:29:28.359 surgery. I would be interested in hearing from 00:29:28.359 --> 00:29:32.500 you what kind of advice or message you have for 00:29:32.500 --> 00:29:36.259 people who are not out of the woods, who are 00:29:36.259 --> 00:29:40.180 not really certain about where their IBD, journey 00:29:40.180 --> 00:29:46.319 is headed. I would say because there's so many 00:29:46.319 --> 00:29:50.279 new things out nowadays and also my daughter's 00:29:50.279 --> 00:29:55.400 just been diagnosed with Crohn's and they're 00:29:55.400 --> 00:29:58.640 going to put her straight onto biologics. They 00:29:58.640 --> 00:30:00.900 go we don't do any messing, no steroids nowadays, 00:30:01.079 --> 00:30:03.599 it's straight on that. So there are a lot more 00:30:03.599 --> 00:30:05.700 things that you can try and a lot more different 00:30:05.700 --> 00:30:09.119 biologics even. There will be something. Like 00:30:09.119 --> 00:30:12.559 I say, I flared for a long time until I had azathioprine, 00:30:12.720 --> 00:30:14.920 which helped me and took me out of my flare. 00:30:15.660 --> 00:30:18.640 If you cannot get out of a flare and they've 00:30:18.640 --> 00:30:20.940 tried every opportunity and everything they can, 00:30:21.140 --> 00:30:24.359 do not be frightened of the surgery. Get yourself 00:30:24.359 --> 00:30:26.539 fit and well for that surgery as best you can 00:30:26.539 --> 00:30:30.700 and talk to people who've had it and who aren't 00:30:30.700 --> 00:30:33.339 the ones who kind of say, you know, you get them 00:30:33.339 --> 00:30:35.339 online that are a bit frightening you and things 00:30:35.339 --> 00:30:37.549 like that. go into the ileostomy associations, 00:30:38.130 --> 00:30:40.930 any of these kind of places, and get the real, 00:30:41.069 --> 00:30:44.390 and they'll show you all the leaflets about what 00:30:44.390 --> 00:30:47.230 to do to make yourself well enough, what things 00:30:47.230 --> 00:30:48.990 to eat, what things to, you know, all these kind 00:30:48.990 --> 00:30:52.509 of things. I would prepare yourself for surgery 00:30:52.509 --> 00:30:54.589 away in future, just in case it is something, 00:30:54.670 --> 00:30:58.950 just so you know a bit about it, but know that 00:30:58.950 --> 00:31:01.450 there are other things and something may suddenly 00:31:01.450 --> 00:31:04.740 get you out of that flare. and it could be for 00:31:04.740 --> 00:31:08.200 years like me it could be i know nobody knows 00:31:08.200 --> 00:31:10.299 and all this kind of thing but once we once you're 00:31:10.299 --> 00:31:12.619 on the thing that that's working it tends to 00:31:12.619 --> 00:31:17.180 work for a while now if you could go back in 00:31:17.180 --> 00:31:21.440 time and even though the day of the diagnosis 00:31:21.440 --> 00:31:24.480 was sort of a little bit muddy, right? Because 00:31:24.480 --> 00:31:26.640 we always go back to this indeterminate colitis. 00:31:26.660 --> 00:31:29.400 So it was not really clear cut. But if you could 00:31:29.400 --> 00:31:33.299 go back in time and you could face the 18 year 00:31:33.299 --> 00:31:39.180 old you, what would you tell that person? I would 00:31:39.180 --> 00:31:43.259 tell that person to advocate for yourself. Like 00:31:43.259 --> 00:31:45.579 I say, I had a few times when the gastroenterologist 00:31:45.579 --> 00:31:48.259 wasn't really listening. We had to push for certain 00:31:48.259 --> 00:31:51.319 things, always push and get what. Because nowadays 00:31:51.319 --> 00:31:54.980 they like you to not treat yourself, but know 00:31:54.980 --> 00:31:57.539 when things are happening and know to go and 00:31:57.539 --> 00:32:00.160 ask for help and maybe even start on certain 00:32:00.160 --> 00:32:01.680 things yourself because you know what's going 00:32:01.680 --> 00:32:03.980 to be happening. Make sure you get somebody, 00:32:04.279 --> 00:32:08.339 a gastroenterologist or GP, who you can talk 00:32:08.339 --> 00:32:13.059 to, who understands you and knows the sort of 00:32:13.059 --> 00:32:15.480 things that you need. So make sure you push for 00:32:15.480 --> 00:32:19.579 yourself always. That's one piece of advice that 00:32:19.579 --> 00:32:23.099 I use a lot. And I think it's one of those things 00:32:23.099 --> 00:32:27.960 that a lot of people actually are scared of standing 00:32:27.960 --> 00:32:32.180 up for themselves. I am still shocked to see 00:32:32.180 --> 00:32:35.579 that there are so many gastroenterologists or 00:32:35.579 --> 00:32:40.269 doctors who... are not proactive clearly or who 00:32:40.269 --> 00:32:43.529 do not inform their patients about ibd enough 00:32:43.529 --> 00:32:47.269 don't make them feel comfortable enough or don't 00:32:47.269 --> 00:32:50.630 do their part to build trust right in their patients 00:32:50.630 --> 00:32:52.990 and i really do believe and and again this is 00:32:52.990 --> 00:32:55.269 not limited to just ibd but with ibd specifically 00:32:55.269 --> 00:33:00.329 it's such a it's such an almost at first embarrassing 00:33:00.329 --> 00:33:02.269 disease right until you get to a point where 00:33:02.269 --> 00:33:04.650 you're accepting what your body is doing to your 00:33:05.200 --> 00:33:08.920 to itself but i always say the best thing you 00:33:08.920 --> 00:33:11.460 can do for yourself is not just raise awareness 00:33:11.460 --> 00:33:14.539 or advocacy but like you said advocate for yourself 00:33:14.539 --> 00:33:17.359 and if you're specialist if your doctor is not 00:33:17.359 --> 00:33:19.480 listening to you do everything in your power 00:33:19.480 --> 00:33:22.619 to find someone else to find somebody who will 00:33:22.619 --> 00:33:26.279 because you don't have time to lose you just 00:33:26.279 --> 00:33:29.500 you just don't right so this is really resonating 00:33:29.500 --> 00:33:33.380 with me uh as well i'm and um i'm a perfect example 00:33:33.380 --> 00:33:37.130 because i've had So I lived in the US with my 00:33:37.130 --> 00:33:40.529 disease. Now I'm living in Europe with IBD. But 00:33:40.529 --> 00:33:43.130 in both cases, I found somebody that I trusted. 00:33:43.250 --> 00:33:46.289 And when they told me that they would move hospitals 00:33:46.289 --> 00:33:48.890 or move clinics, my first question was, can I 00:33:48.890 --> 00:33:53.329 come with you? And so you have to be very, very 00:33:53.329 --> 00:33:55.150 selfish. And you don't have to be afraid that 00:33:55.150 --> 00:33:57.769 you're stepping on anybody's toes. You just do 00:33:57.769 --> 00:34:00.009 what's best for you. And if that means just leaving 00:34:00.009 --> 00:34:02.839 with your doctor, then do it. You know, that's 00:34:02.839 --> 00:34:04.319 all I can say. I've had a similar experience 00:34:04.319 --> 00:34:07.420 recently because when my fishing was all started 00:34:07.420 --> 00:34:09.780 under Nottingham, I mean, they were great, but 00:34:09.780 --> 00:34:11.519 they came to a point where they didn't really 00:34:11.519 --> 00:34:14.699 know what to do next, or at least were giving 00:34:14.699 --> 00:34:16.880 me options that were very scary at the time. 00:34:17.199 --> 00:34:19.559 And I asked, there's a hospital in London called 00:34:19.559 --> 00:34:21.159 St Mark's. I don't know if you've ever heard 00:34:21.159 --> 00:34:24.699 of it. It's an actual bowel hospital. And I've 00:34:24.699 --> 00:34:27.039 now been referred to them. So I'm under them. 00:34:27.139 --> 00:34:29.690 So yes, I travel down there. I'm with the best 00:34:29.690 --> 00:34:31.710 of the best. So do you know what I mean? It's 00:34:31.710 --> 00:34:32.869 not going to happen there. It's not going to 00:34:32.869 --> 00:34:35.610 happen anywhere. And so my husband used to say, 00:34:35.610 --> 00:34:39.130 let's not be done. You know, we've got to wherever's 00:34:39.130 --> 00:34:42.309 the best place. Absolutely. Absolutely. So Claire, 00:34:42.429 --> 00:34:45.489 thank you so much for taking the time to speak 00:34:45.489 --> 00:34:49.610 with me today. I definitely wish you all the 00:34:49.610 --> 00:34:55.469 best. Hope that you're... IBD stays calmer and 00:34:55.469 --> 00:34:57.630 that the complications as well is something that 00:34:57.630 --> 00:35:02.130 you'll be able to keep at bay. And the same goes 00:35:02.130 --> 00:35:04.469 for your daughter. So I really wish all the best 00:35:04.469 --> 00:35:08.710 for her in her fresh IBD journey. And thank you 00:35:08.710 --> 00:35:10.510 so much for being with us today. Thank you. Thank 00:35:10.510 --> 00:35:14.570 you. That's it for today's episode of Colitis 00:35:14.570 --> 00:35:17.710 Unfiltered. I'm Frank Tabering. And if this hit 00:35:17.710 --> 00:35:20.969 home or hit your gut, do us a favor. Subscribe 00:35:20.969 --> 00:35:24.110 to the show. And follow us at Kaleidos Unfiltered 00:35:24.110 --> 00:35:27.429 on YouTube, Substack, Instagram, Threads, TikTok, 00:35:27.690 --> 00:35:30.329 and Reddit. We'll see you soon for more inspiring 00:35:30.329 --> 00:35:31.929 stories from the bathroom floor.