WEBVTT 00:00:06.179 --> 00:00:09.019 I wasn't really familiar with ulcerative colitis. 00:00:09.220 --> 00:00:12.300 I mean, I knew of it, but I didn't know the ins 00:00:12.300 --> 00:00:14.900 and outs of it. And the doctor was like, oh, 00:00:14.980 --> 00:00:17.219 you have ulcerative colitis, come back in a couple 00:00:17.219 --> 00:00:20.239 of months, let the dust settle. And like really 00:00:20.239 --> 00:00:24.660 wasn't. overly informative or overly tactful 00:00:24.660 --> 00:00:27.199 for the diagnosis. So I was kind of left on my 00:00:27.199 --> 00:00:30.480 own to sort of digest it and take it all in and 00:00:30.480 --> 00:00:34.200 figure it out. This is Melissa, who got diagnosed 00:00:34.200 --> 00:00:37.560 with ulcerative colitis at age 46 in Boston, 00:00:37.799 --> 00:00:41.140 Massachusetts. Melissa's journey is one of inspiration. 00:00:42.079 --> 00:00:45.140 Not too long after her diagnosis, doctors recommended 00:00:45.140 --> 00:00:48.520 she have surgery to remove her colon. But Melissa 00:00:48.520 --> 00:00:51.609 refused. She was not ready to let go of her intestines. 00:00:52.590 --> 00:00:55.630 Today, she's telling us all about her IBD experience. 00:00:57.049 --> 00:00:59.909 This is Talking S*** presented by Colitis Unfiltered. 00:01:00.729 --> 00:01:03.590 My name is Franck Tabouring and Melissa, welcome 00:01:03.590 --> 00:01:05.969 to the show. Thank you, Frank. Glad to be here 00:01:05.969 --> 00:01:09.760 today. So let's get right into it. I think, you 00:01:09.760 --> 00:01:12.260 know, what's really easier for the audience is 00:01:12.260 --> 00:01:14.719 to maybe set a little bit of a context. So it'd 00:01:14.719 --> 00:01:18.219 be great for you to maybe give us a very brief 00:01:18.219 --> 00:01:21.299 summary of your IBD journey, you know, from diagnosis 00:01:21.299 --> 00:01:24.579 to today. Tell me a little bit about your timeline. 00:01:25.700 --> 00:01:28.840 So going back, I was first diagnosed in 2018. 00:01:29.609 --> 00:01:33.769 And I first started having symptoms of diarrhea, 00:01:34.090 --> 00:01:37.549 urgency, and was really quite sick and was hospitalized 00:01:37.549 --> 00:01:42.109 for about 12 days. And I was treated with IV 00:01:42.109 --> 00:01:44.950 antibiotics, like I had a parasite or something. 00:01:45.090 --> 00:01:48.230 And it wasn't until the last day where they did 00:01:48.230 --> 00:01:50.810 a colonoscopy on me and they said I had ulcerative 00:01:50.810 --> 00:01:54.829 colitis. And I was literally sent home to let 00:01:54.829 --> 00:01:57.969 the dust settle. And I had lost a ton of weight 00:01:57.969 --> 00:02:00.290 and progressively got more and more sick where 00:02:00.290 --> 00:02:04.129 I was blacking out. Led me to go see another 00:02:04.129 --> 00:02:07.969 doctor for another opinion. At that point, my 00:02:07.969 --> 00:02:10.389 hemoglobin and hematocrit were at critical low 00:02:10.389 --> 00:02:12.909 numbers and I needed blood transfusion and was 00:02:12.909 --> 00:02:17.349 hospitalized again. And I was then started on 00:02:17.349 --> 00:02:21.300 some IV Remicade. and that eventually ended up 00:02:21.300 --> 00:02:25.280 not working for me. And then I went advanced 00:02:25.280 --> 00:02:29.340 to another medication called Intivio. That didn't 00:02:29.340 --> 00:02:32.960 work. I eventually then went to a third opinion 00:02:32.960 --> 00:02:36.300 and found another doctor who was really not afraid 00:02:36.300 --> 00:02:39.080 to push the envelope and do a combination drug 00:02:39.080 --> 00:02:42.699 therapy to try to knock me into remission. And 00:02:42.699 --> 00:02:46.080 that was really what set me straight was this 00:02:46.080 --> 00:02:49.659 third doctor. So it was like a very long journey 00:02:49.659 --> 00:02:53.620 to get stabilized. And in the meantime, everybody 00:02:53.620 --> 00:02:56.819 wanted to take my colon out. When I was hospitalized, 00:02:57.020 --> 00:02:59.039 and when I was hospitalized, it was days at a 00:02:59.039 --> 00:03:03.240 time, I'm talking 12 days in the hospital, and 00:03:03.240 --> 00:03:05.639 they were all at my bedside, ready to remove 00:03:05.639 --> 00:03:09.319 my colon. And I wasn't having it. I didn't want 00:03:09.319 --> 00:03:12.039 to have my colon out. I thought I was young. 00:03:12.080 --> 00:03:14.680 If there's another way out, By golly, I was going 00:03:14.680 --> 00:03:18.060 to fight for it. And I did. So anyways, I found 00:03:18.060 --> 00:03:21.819 my way, found the right doctor, found the right 00:03:21.819 --> 00:03:24.659 remedy, the right prescription, and was able 00:03:24.659 --> 00:03:27.240 to get stabilized. But it took a long time. It 00:03:27.240 --> 00:03:30.379 took a couple of years. So you said that, you 00:03:30.379 --> 00:03:32.659 know, the symptoms just showed up. Like, how 00:03:32.659 --> 00:03:37.300 did you realize something was wrong? The diarrhea 00:03:37.300 --> 00:03:42.129 that I was having was not like I had a bug. or 00:03:42.129 --> 00:03:45.490 like a stomach flu, something like that. There 00:03:45.490 --> 00:03:51.009 was urgency, the consistency. Then I started 00:03:51.009 --> 00:03:53.930 rectal bleeding. And so it wasn't long where 00:03:53.930 --> 00:03:56.889 I'm like, oh boy, what's going on here? This 00:03:56.889 --> 00:04:00.210 isn't normal. This isn't a normal type of bug. 00:04:00.550 --> 00:04:04.270 And I was really wiped out, exhausted, where 00:04:04.270 --> 00:04:07.990 I was flat lying and couldn't lift my head. I 00:04:07.990 --> 00:04:11.129 was literally brought out in an ambulance. Wow. 00:04:11.289 --> 00:04:13.969 One thing that I sometimes think about is this 00:04:13.969 --> 00:04:16.149 very moment where, at least for me, I was sitting 00:04:16.149 --> 00:04:17.930 in the doctor's office and he broke the news 00:04:17.930 --> 00:04:20.810 to me, right? He said, I'm afraid it's not good 00:04:20.810 --> 00:04:23.189 news. You have ulcerative colitis. And to me, 00:04:23.490 --> 00:04:24.970 so many questions popped into my head. I was 00:04:24.970 --> 00:04:27.990 like, wait, what? So I want to ask you, whatever 00:04:27.990 --> 00:04:31.769 physician diagnosed you, how did he or she break 00:04:31.769 --> 00:04:34.329 the news to you? And also when you heard this 00:04:34.329 --> 00:04:36.709 term ulcerative colitis, what went through your 00:04:36.709 --> 00:04:40.379 mind? Wasn't really familiar with ulcerative 00:04:40.379 --> 00:04:43.740 colitis. I mean I knew of it I but I didn't know 00:04:43.740 --> 00:04:46.639 the ins and outs of it and at the time I had 00:04:46.639 --> 00:04:49.000 been so sick and was hospitalized not knowing 00:04:49.000 --> 00:04:52.660 what it was Part of me was like a relief that 00:04:52.660 --> 00:04:56.540 it wasn't cancer You know cuz I didn't know what 00:04:56.540 --> 00:05:00.360 it was and then the ulcerative colitis was like 00:05:00.360 --> 00:05:03.459 I Was a little overwhelmed at first to be honest. 00:05:03.699 --> 00:05:07.050 I you know, I had to you know Take it back and 00:05:07.050 --> 00:05:09.430 it was the doctor was like, Oh, you have ulcerative 00:05:09.430 --> 00:05:11.689 colitis. Uh, come back in a couple of months, 00:05:11.810 --> 00:05:15.629 let the dust settle. And like really wasn't overly 00:05:15.629 --> 00:05:19.670 informative or overly tactful for the diagnosis. 00:05:19.829 --> 00:05:23.110 So I was kind of left on my own to sort of digest 00:05:23.110 --> 00:05:25.750 it and take it all in and figure it out. So, 00:05:26.269 --> 00:05:29.350 uh, it wasn't a great experience in many ways 00:05:29.350 --> 00:05:33.220 on many levels. Right. So basically. the first 00:05:33.220 --> 00:05:35.300 time you heard the term, the doctor didn't necessarily 00:05:35.300 --> 00:05:37.439 go into details and explain to you, hey, this 00:05:37.439 --> 00:05:40.319 is an inflammatory bowel disease, nothing really, 00:05:40.319 --> 00:05:42.879 just said, this is it. No, it wasn't until I 00:05:42.879 --> 00:05:45.980 got to the second doctor that I really got some 00:05:45.980 --> 00:05:50.740 great information. I think this is a common problem 00:05:50.740 --> 00:05:52.480 for a lot of people with colitis. At least the 00:05:52.480 --> 00:05:55.000 stories that I hear is that either doctors write 00:05:55.000 --> 00:05:57.660 it off or they just write it off as IBS or they 00:05:57.660 --> 00:06:00.829 don't really follow up. Personally, Because you're 00:06:00.829 --> 00:06:03.649 working as a nurse as well, right? Why is it 00:06:03.649 --> 00:06:05.149 that doctors don't really take the time or don't 00:06:05.149 --> 00:06:07.629 really listen to the patient and become more 00:06:07.629 --> 00:06:10.470 proactive right away? Well, I can tell you one 00:06:10.470 --> 00:06:15.730 thing that I encountered is that there's gastroenterologists 00:06:15.730 --> 00:06:18.149 that are general gastroenterologists, and then 00:06:18.149 --> 00:06:20.829 there's gastroenterologists that are specialized 00:06:20.829 --> 00:06:24.350 in IBD. And that makes a whole world of difference 00:06:24.350 --> 00:06:28.110 because, you know, The guy I saw first he could 00:06:28.110 --> 00:06:31.009 been a specialist in in reflux disease, you know 00:06:31.009 --> 00:06:34.089 or saw everything But does he really you know 00:06:34.089 --> 00:06:36.410 live and breathe ulcerative colitis and Crohn's 00:06:36.410 --> 00:06:38.870 disease on a daily basis? No, you know, he's 00:06:38.870 --> 00:06:42.709 because he's a general gastroenterologist I did 00:06:42.709 --> 00:06:46.050 not believe he knew the ins and outs of the ulcerative 00:06:46.050 --> 00:06:49.889 colitis So it really took finding someone that's 00:06:49.889 --> 00:06:52.709 super specialized in inflammatory bowel disease 00:06:52.709 --> 00:06:57.649 to sort of treat someone, you know, the best 00:06:57.649 --> 00:07:00.310 way possible. You mentioned at the beginning, 00:07:00.350 --> 00:07:02.670 but could you quickly take us through the types 00:07:02.670 --> 00:07:04.449 of medications that you went through sort of 00:07:04.449 --> 00:07:06.970 and which ones worked and which ones didn't work? 00:07:07.250 --> 00:07:11.129 Yeah. So at first I was on mescalamine. Then 00:07:11.129 --> 00:07:16.170 I went to Remicade. Then I went to Intivio every 00:07:16.170 --> 00:07:20.990 eight weeks. Then when I got to the doctor that 00:07:20.990 --> 00:07:27.269 was the specialist in IBD, She put me on Zeljanz 00:07:27.269 --> 00:07:31.189 in conjunction with Antivio every four weeks. 00:07:31.509 --> 00:07:36.509 And it was that combination of those two medications 00:07:36.509 --> 00:07:40.550 that really knocked me into remission. So then 00:07:40.550 --> 00:07:44.790 I was able to wean off of the Zeljanz and maintain 00:07:44.790 --> 00:07:48.149 the Antivio. And that's where I'm at today is 00:07:48.149 --> 00:07:50.949 on the Antivio. But I went have recently gone 00:07:50.949 --> 00:07:54.329 from every four weeks to every six weeks. That's 00:07:54.329 --> 00:07:56.569 great. Antivio, that's exactly the treatment 00:07:56.569 --> 00:07:59.170 that I am on now. And for me also, it's been 00:07:59.170 --> 00:08:01.790 the most stable one. Very glad to hear that this 00:08:01.790 --> 00:08:03.129 is the one that keeps you in remission and that's 00:08:03.129 --> 00:08:04.670 actually the one that keeps me in remission right 00:08:04.670 --> 00:08:07.850 now as well. I was on prednisone too during in 00:08:07.850 --> 00:08:10.050 -between while I was finding the right doctor. 00:08:10.290 --> 00:08:14.310 I was taking prednisone like crazy because it 00:08:14.310 --> 00:08:17.889 was stopping the bleeding and I was taking it 00:08:17.889 --> 00:08:21.240 totally against medical advice. But I was so 00:08:21.240 --> 00:08:23.399 afraid to have my colon out. I was like, if it's 00:08:23.399 --> 00:08:25.839 going to stop the bleeding and buy more time 00:08:25.839 --> 00:08:27.620 till I can find the right doctor and get the 00:08:27.620 --> 00:08:31.139 right answer. I was doing that, you know, which 00:08:31.139 --> 00:08:35.480 is not good to be on long term steroids. Exactly, 00:08:35.659 --> 00:08:38.919 yes. And I mean, I always personally refer to 00:08:38.919 --> 00:08:40.679 prednisone as sort of a blessing and a curse, 00:08:40.820 --> 00:08:43.340 right? Blessing because it can help you short 00:08:43.340 --> 00:08:45.299 term, but curse, you know, all the side effects 00:08:45.299 --> 00:08:48.120 and what it does to your body. How did you experience 00:08:48.120 --> 00:08:50.919 the prednisone? Did you have very notable side 00:08:50.919 --> 00:08:52.419 effects? This is a question that a lot of people 00:08:52.419 --> 00:08:53.820 with colitis that I talked to and they struggle 00:08:53.820 --> 00:08:56.399 with prednisone. What was your experience being 00:08:56.399 --> 00:08:59.639 on that medication? Yeah, I mean, the ulcerative 00:08:59.639 --> 00:09:02.730 colitis has brought so much you know, with body 00:09:02.730 --> 00:09:04.629 image. I mean, there was one point I had lost 00:09:04.629 --> 00:09:06.870 a lot of weight because everything I was, you 00:09:06.870 --> 00:09:09.730 know, consuming was going right through me. And 00:09:09.730 --> 00:09:12.970 then when I was on long -term prednisone, I had 00:09:12.970 --> 00:09:16.549 like a 30 pound weight gain. I had, you know, 00:09:16.750 --> 00:09:21.769 hair loss. I had weight gain. I had mood swings. 00:09:22.610 --> 00:09:27.450 I mean, yeah, not good side effects, but it saved 00:09:27.450 --> 00:09:30.029 me because I was stopped bleeding and it bought 00:09:30.029 --> 00:09:33.559 me some time. So you're absolutely right, the 00:09:33.559 --> 00:09:36.419 blessing and the curse. You mentioned earlier 00:09:36.419 --> 00:09:39.940 that you were advised or was recommended to you 00:09:39.940 --> 00:09:43.899 to just remove your colon to beat this disease 00:09:43.899 --> 00:09:47.279 essentially, and you refused. What did you do 00:09:47.279 --> 00:09:51.379 mentally also for yourself in refusing to go 00:09:51.379 --> 00:09:53.700 that route? When the first doctor told me to 00:09:53.700 --> 00:09:55.980 go home and let the dust settle and I had gotten 00:09:55.980 --> 00:09:58.340 progressively worse and made it to that second 00:09:58.340 --> 00:10:02.240 doctor, He admitted me right away into the hospital. 00:10:02.639 --> 00:10:04.759 I needed blood transfusions. And he basically 00:10:04.759 --> 00:10:06.759 told me, I never would have let you out of the 00:10:06.759 --> 00:10:10.159 hospital in this condition, you know, back from 00:10:10.159 --> 00:10:13.200 the first doctor. And he basically said, you 00:10:13.200 --> 00:10:15.139 know, that they didn't do enough for me. It was 00:10:15.139 --> 00:10:18.179 like a fire extinguisher and a forest fire. You 00:10:18.179 --> 00:10:21.169 know, they just did not. you know do enough for 00:10:21.169 --> 00:10:24.370 me and he said that I had severe pan colitis 00:10:24.370 --> 00:10:26.970 which is colitis in the whole entire colon so 00:10:26.970 --> 00:10:30.090 there was not one section of my colon that was 00:10:30.090 --> 00:10:33.509 saveable and that I really was a candidate to 00:10:33.509 --> 00:10:35.509 have the the colon out and that I should really 00:10:35.509 --> 00:10:39.370 consider it and uh you know I said well I don't 00:10:39.370 --> 00:10:41.490 want to do that and that's he started me on the 00:10:41.490 --> 00:10:45.370 remicade and you know it wasn't long because 00:10:45.370 --> 00:10:47.769 I was on the remicade only a few months and he 00:10:47.769 --> 00:10:50.909 said It was it stopped working. I started having 00:10:50.909 --> 00:10:53.590 like the breakthrough bleeding and symptoms came 00:10:53.590 --> 00:10:56.269 right back within a few months and he says well 00:10:56.269 --> 00:10:59.590 I can start you on in tibio but really you should 00:10:59.590 --> 00:11:04.049 have the colon out and I I had a very hard time. 00:11:04.049 --> 00:11:07.750 I had a very very hard time, you know digesting 00:11:07.750 --> 00:11:09.889 that like what's gonna happen to my life? I was 00:11:09.889 --> 00:11:13.610 only 46 years old. Is that necessary? Is there 00:11:13.610 --> 00:11:16.289 anything out there that can you know get me out 00:11:16.289 --> 00:11:20.460 of this? And I just kept pursuing. I'm like, 00:11:20.460 --> 00:11:22.580 I need another opinion. I need to find another 00:11:22.580 --> 00:11:27.000 doctor. And it turned out that doctor one was 00:11:27.000 --> 00:11:30.159 not an IBD specialist. Doctor two was not an 00:11:30.159 --> 00:11:34.679 IBD specialist. The third one was. And by the 00:11:34.679 --> 00:11:38.639 time I got to her, she said, yes, you have a 00:11:38.639 --> 00:11:41.179 very severe case, but she was willing to sort 00:11:41.179 --> 00:11:46.309 of, you know, try things out and do some experimentation 00:11:46.309 --> 00:11:49.129 with the medications to see if I couldn't get 00:11:49.129 --> 00:11:52.269 to a remission where I had a chance of not getting 00:11:52.269 --> 00:11:55.350 my colon out. It's remarkable that you actually 00:11:55.350 --> 00:11:57.330 stuck with your opinion and you didn't listen 00:11:57.330 --> 00:11:59.190 to the doctors. And I understand that a lot of 00:11:59.190 --> 00:12:01.629 colitis patients out there, they get diagnosed 00:12:01.629 --> 00:12:03.950 at a stage where they actually don't have any 00:12:03.950 --> 00:12:05.690 other option anymore. And I think, you know, 00:12:05.710 --> 00:12:08.090 again, you know, sort of this lack of sort of 00:12:08.090 --> 00:12:11.470 subspecialty maybe is coming into play as well. 00:12:11.840 --> 00:12:14.840 The same thing happened to me and this was while 00:12:14.840 --> 00:12:16.960 I started on Remicade and after about a month 00:12:16.960 --> 00:12:18.980 or two, it didn't really work quite yet. I was 00:12:18.980 --> 00:12:20.980 feeling better, but my doctor basically told 00:12:20.980 --> 00:12:24.080 me, listen, if this doesn't work, this is maybe 00:12:24.080 --> 00:12:25.980 something that we should consider, right? Surgery. 00:12:26.139 --> 00:12:28.259 And I still remember to this day, I was actually 00:12:28.259 --> 00:12:32.159 sitting ironically enough on the toilet and I 00:12:32.159 --> 00:12:34.700 sort of processed everything and I said, no. 00:12:34.899 --> 00:12:36.759 And I just said, this is not going to happen. 00:12:37.139 --> 00:12:40.279 So over the years, I thought to myself, Listen, 00:12:40.539 --> 00:12:42.919 everybody always talks about sort of brain -gut 00:12:42.919 --> 00:12:46.840 connection, right? And I'm the first one to say 00:12:46.840 --> 00:12:49.740 that certainly the medication, the treatment 00:12:49.740 --> 00:12:53.120 was what pulled me into remission. But I always 00:12:53.120 --> 00:12:56.519 said, I think the mindset sort of keeping that 00:12:56.519 --> 00:12:59.779 strength, it probably helped a little bit. I 00:12:59.779 --> 00:13:02.919 don't want to say that it sort of kept me from 00:13:02.919 --> 00:13:06.080 using my colon, but What's your stance on sort 00:13:06.080 --> 00:13:09.139 of like using your mind and having just sort 00:13:09.139 --> 00:13:10.779 of, I don't know, either positive mentality or 00:13:10.779 --> 00:13:14.659 fighting spirit and how it can help somebody 00:13:14.659 --> 00:13:17.440 through, through struggles. Oh, I'm all about 00:13:17.440 --> 00:13:20.399 it. Do you believe that? Absolutely. The perseverance, 00:13:20.659 --> 00:13:23.820 the determination, you know, I also, you know, 00:13:23.899 --> 00:13:26.000 it had a lot of stress in my life. So I, you 00:13:26.000 --> 00:13:29.879 know, I meditation yoga, then I got into, you 00:13:29.879 --> 00:13:33.360 know, diet. changes. And, you know, certainly 00:13:33.360 --> 00:13:36.960 I will never discount my gastroenterologist that, 00:13:36.960 --> 00:13:40.200 you know, saved me and all the wonderful things 00:13:40.200 --> 00:13:42.240 that, you know, the medicine field is doing, 00:13:42.620 --> 00:13:45.820 but they were not into diet recommendations. 00:13:45.980 --> 00:13:48.700 I can't tell you how many times I was told you 00:13:48.700 --> 00:13:51.860 can eat a regular diet. It's autoimmune. You 00:13:51.860 --> 00:13:53.539 can do what you want. It doesn't matter what 00:13:53.539 --> 00:13:56.539 you eat. You have your colon's failing, you know, 00:13:56.580 --> 00:13:59.559 get your colon out. But I got to tell you when 00:13:59.559 --> 00:14:02.740 I did all of those things, the stress management 00:14:02.740 --> 00:14:06.200 and, and the food changes, you know, and, and 00:14:06.200 --> 00:14:09.419 the mindset things started, you know, to turn 00:14:09.419 --> 00:14:12.919 around. So, um, I'm a firm believer in all of 00:14:12.919 --> 00:14:15.700 those things to that, you know, we, we, our bodies 00:14:15.700 --> 00:14:18.740 can heal ourselves and, and there's a lot of 00:14:18.740 --> 00:14:21.860 things that you can do. Yep. Yep. I think it's 00:14:21.860 --> 00:14:24.320 a really good combination of having that fighting 00:14:24.320 --> 00:14:26.879 spirit, the mindset, and then the right doctor, 00:14:27.019 --> 00:14:29.399 the right treatment plan. And, uh, you actually 00:14:29.399 --> 00:14:32.850 have a, worthy shot of experiencing remission 00:14:32.850 --> 00:14:36.070 and staying in remission. So speaking of remission, 00:14:36.309 --> 00:14:40.909 actually, once we get better, once we heal, even 00:14:40.909 --> 00:14:42.809 though we know it's not a cure, so we should 00:14:42.809 --> 00:14:45.590 never take remission for granted. A lot of us 00:14:45.590 --> 00:14:48.850 we sort of reflect on our choices we make in 00:14:48.850 --> 00:14:51.370 life, especially to our bodies. What sort of 00:14:51.370 --> 00:14:55.789 lifestyle changes have you made, you know, since 00:14:55.789 --> 00:14:57.990 remission or what lifestyle changes have helped? 00:14:58.139 --> 00:15:02.460 you better manage your disease. Yeah. I mean, 00:15:02.620 --> 00:15:05.480 that's a great question. You know, and this is 00:15:05.480 --> 00:15:09.659 one good thing about this whole IBD journey for 00:15:09.659 --> 00:15:14.320 me is that it put me in a place where I am ultra 00:15:14.320 --> 00:15:19.000 conscious about my sleep, my stress, my diet, 00:15:19.580 --> 00:15:23.080 all of those things I am, you know, ultra conscious 00:15:23.080 --> 00:15:26.779 on a daily basis. So that's a good thing, whether 00:15:26.779 --> 00:15:31.519 you have IBD or not, right? So that's been sort 00:15:31.519 --> 00:15:34.879 of the blessing here is being have this conscious 00:15:34.879 --> 00:15:39.159 contact about wellness on a regular basis. How 00:15:39.159 --> 00:15:44.539 has this disease changed you as a person? Well, 00:15:44.860 --> 00:15:47.559 I've learned not to take anything for granted. 00:15:48.139 --> 00:15:51.779 Health is wealth. I mean, What if you know when 00:15:51.779 --> 00:15:54.500 you have like a close call like that and you're 00:15:54.500 --> 00:15:57.019 hospitalized, you know for days on end I mean, 00:15:57.019 --> 00:16:00.539 I wasn't working. I wasn't I wasn't near family. 00:16:00.539 --> 00:16:04.600 I was away at a hospital. I mean so really, you 00:16:04.600 --> 00:16:09.179 know Not taking anything for granted and and 00:16:09.179 --> 00:16:13.519 really prioritizing health Without that, you 00:16:13.519 --> 00:16:17.779 know, what have you got I basically prefer to 00:16:17.850 --> 00:16:20.370 as my IBD journey, where we're actually the actual 00:16:20.370 --> 00:16:24.289 disease is a blessing and a curse as well, right? 00:16:24.289 --> 00:16:26.690 Curse because we suffered a lot, but then a blessing, 00:16:26.870 --> 00:16:29.889 it just sort of allows us to revaluate our lives. 00:16:30.470 --> 00:16:33.750 How do you relate to that, that IBD being both 00:16:33.750 --> 00:16:35.649 a blessing and a curse? Does that resonate with 00:16:35.649 --> 00:16:38.509 you? It totally resonates and probably very similar, 00:16:38.509 --> 00:16:43.039 you know, to you. The curse is definitely All 00:16:43.039 --> 00:16:46.200 of the suffering. I mean it was it was so stressful 00:16:46.200 --> 00:16:48.799 navigating the health care system the doctors 00:16:48.799 --> 00:16:51.840 Finding the right medication, you know, and then 00:16:51.840 --> 00:16:54.620 all the physical suffering. I mean I had You 00:16:54.620 --> 00:16:56.980 know weight loss. I had weight gain. I had hair 00:16:56.980 --> 00:17:00.740 loss. I mean You know the fatigue, you know, 00:17:00.740 --> 00:17:03.480 I had low iron levels all of that stuff I mean 00:17:03.480 --> 00:17:05.539 that that was definitely, you know the curse 00:17:05.539 --> 00:17:09.079 and and and having this, you know disorder and 00:17:09.079 --> 00:17:12.549 disease and then of course, you know On the flip 00:17:12.549 --> 00:17:16.569 side, the blessing, I have learned so much about 00:17:16.569 --> 00:17:22.549 the disease. I'm able to help other people. I've 00:17:22.549 --> 00:17:25.549 learned about diets and foods and supplements 00:17:25.549 --> 00:17:28.730 and wellness. I don't think I ever probably would 00:17:28.730 --> 00:17:32.670 have tried doing yoga or meditation prior to 00:17:32.670 --> 00:17:37.369 this. So there's a lot of blessings. That's great 00:17:37.369 --> 00:17:40.390 to hear. You mentioned when you were at your 00:17:40.390 --> 00:17:43.490 worst, you sort of were not able to be around 00:17:43.490 --> 00:17:46.150 family so much. How has the disease, especially 00:17:46.150 --> 00:17:48.970 also when it was active, impacted your relationships 00:17:48.970 --> 00:17:52.109 with your friends, with your family? And also 00:17:52.109 --> 00:17:55.089 how did they react? And I'm sure they didn't 00:17:55.089 --> 00:17:57.670 know much about ulcerative colitis either. Was 00:17:57.670 --> 00:18:01.289 it difficult for them to understand the disease? 00:18:01.410 --> 00:18:05.029 How did you communicate with them? What was that 00:18:05.029 --> 00:18:07.569 like for you? Yeah, that was a little challenging. 00:18:08.150 --> 00:18:13.329 I'm one to isolate. I don't want to talk shit 00:18:13.329 --> 00:18:18.309 with everybody. So it was a little challenging. 00:18:18.849 --> 00:18:22.230 It's not like you could say, oh, I'm diabetic. 00:18:22.950 --> 00:18:25.890 It's a lot easier to say something like that 00:18:25.890 --> 00:18:32.319 than to say, I have diarrhea. I mean, I guess 00:18:32.319 --> 00:18:35.519 that caused a little bit of separation and a 00:18:35.519 --> 00:18:37.720 little bit of a barrier with, you know, talking 00:18:37.720 --> 00:18:40.380 to people and communicating. You know, people 00:18:40.380 --> 00:18:43.160 say, how are you? And it's like, you know, you 00:18:43.160 --> 00:18:45.660 don't want to say, oh, well, I went to the bathroom 00:18:45.660 --> 00:18:48.700 10 times or I'm bleeding. You know, those are 00:18:48.700 --> 00:18:50.740 not things that you necessarily want to talk 00:18:50.740 --> 00:18:53.759 about. And it becomes challenging to have conversations 00:18:53.759 --> 00:18:56.420 about your health, you know, even when it's with, 00:18:56.420 --> 00:18:59.480 you know, close friends and family. It's sometimes 00:18:59.480 --> 00:19:03.839 was challenging. Yeah, you mentioned the word 00:19:03.839 --> 00:19:06.200 isolation. And I think that's definitely also 00:19:06.200 --> 00:19:07.940 something that happened to me when I was flaring 00:19:07.940 --> 00:19:09.960 and I was at my worst. I actually wanted to be 00:19:09.960 --> 00:19:11.980 alone. I sort of retracted into my own bubble 00:19:11.980 --> 00:19:16.579 and wanted to suffer basically by myself in silence. 00:19:17.119 --> 00:19:19.279 So yeah, how did you navigate your flares? And 00:19:19.279 --> 00:19:21.900 did you also experience this sort of isolated? 00:19:22.089 --> 00:19:24.369 feeling or not wanting to be close to anybody. 00:19:24.390 --> 00:19:27.609 Yes, I absolutely did. I mean, I wanted to be, 00:19:27.609 --> 00:19:30.630 you know, home. I wanted to be near the bathroom. 00:19:31.309 --> 00:19:34.670 I certainly didn't feel social, didn't feel like 00:19:34.670 --> 00:19:37.250 having fun, didn't want to go out. I mean, when 00:19:37.250 --> 00:19:40.589 I, during a flare and to go out, I mean, that's 00:19:40.589 --> 00:19:43.009 if I had to go somewhere, I'm packing a change 00:19:43.009 --> 00:19:46.940 of clothes and thinking ahead about where's the 00:19:46.940 --> 00:19:49.059 bathroom and how long am I going to be and how 00:19:49.059 --> 00:19:51.799 long is the drive? And you know, so I didn't 00:19:51.799 --> 00:19:54.039 want to deal with any of that. It was just like, 00:19:54.180 --> 00:19:56.359 leave me alone. I'm not going anywhere. I'm not 00:19:56.359 --> 00:19:59.500 talking. I'm not doing anything. We don't have 00:19:59.500 --> 00:20:03.019 the energy at that point to actually do anything 00:20:03.019 --> 00:20:06.609 or literally care about anyone else but ourselves, 00:20:06.809 --> 00:20:08.970 right? So it's one of those moments where it's 00:20:08.970 --> 00:20:11.529 actually okay to be very, very selfish. And I 00:20:11.529 --> 00:20:13.089 always advocate for that, you know, take care 00:20:13.089 --> 00:20:16.609 of yourself first, and everybody else has to 00:20:16.609 --> 00:20:23.170 wait, right? So what advice would you have for 00:20:23.170 --> 00:20:26.690 people like friends and family supporting someone 00:20:26.690 --> 00:20:31.180 with IBD, someone that is entering a tough stretch 00:20:31.180 --> 00:20:33.460 or is flaring constantly, what would you tell 00:20:33.460 --> 00:20:35.619 these people who are around the person like that? 00:20:36.279 --> 00:20:39.500 I would say not to ask too many questions, let 00:20:39.500 --> 00:20:41.779 them know that you're there for them and support 00:20:41.779 --> 00:20:44.880 them and ask them to let you know if there's 00:20:44.880 --> 00:20:47.579 anything that you know, that they that you need, 00:20:47.940 --> 00:20:50.380 you know, and provide space for that person if 00:20:50.380 --> 00:20:52.059 you're getting the feeling that they want to 00:20:52.059 --> 00:20:55.720 be alone, that that's okay. And I think that 00:20:55.759 --> 00:20:59.420 that's helpful to know both for the person that 00:20:59.420 --> 00:21:02.599 has the ulcerative colitis to know that people 00:21:02.599 --> 00:21:04.680 are there for you and they're only like a phone 00:21:04.680 --> 00:21:09.180 call away without being overly intrusive about 00:21:09.180 --> 00:21:14.559 what's going on and what the status is. I think 00:21:14.559 --> 00:21:18.160 the best thing that people can do is let you 00:21:18.160 --> 00:21:20.640 know that they're there but that actually wait 00:21:20.640 --> 00:21:23.839 for You know us to reach out to them. I think 00:21:23.839 --> 00:21:26.240 that that's the best sort of support that that 00:21:26.240 --> 00:21:30.759 they can show right? So one of the reasons why 00:21:30.759 --> 00:21:34.059 I started this initiative and why I also want 00:21:34.059 --> 00:21:37.259 to raise awareness about Colliders Crohn's IBD 00:21:37.259 --> 00:21:39.460 in general is I think there's a lot of common 00:21:39.460 --> 00:21:41.259 misconceptions still out there. There's a lot 00:21:41.259 --> 00:21:43.220 of stigma. There's actually a lack of awareness 00:21:43.220 --> 00:21:46.779 based on what you have experienced. What are 00:21:46.779 --> 00:21:49.539 some common misconceptions in your eyes about? 00:21:49.690 --> 00:21:54.029 colitis or IBD in general. I think people don't 00:21:54.029 --> 00:21:57.329 understand that as like a long -term chronic 00:21:57.329 --> 00:22:00.730 illness or that it's, you know, autoimmune. I 00:22:00.730 --> 00:22:06.170 think a lot of people confuse IBD with IBS and 00:22:06.170 --> 00:22:08.809 they don't, they just don't really understand, 00:22:08.809 --> 00:22:14.170 you know, the complexity of it. What do you think? 00:22:15.690 --> 00:22:17.769 Besides just trying to raise awareness and talk 00:22:17.769 --> 00:22:19.430 about it. Do you think there's anything else 00:22:19.430 --> 00:22:24.190 that we could do to educate people better? You 00:22:24.190 --> 00:22:27.869 know, I've seen a lot of activity more recently 00:22:27.869 --> 00:22:31.730 in the past year than in years prior like from 00:22:31.730 --> 00:22:34.410 the Crohn's and colitis foundation I see them 00:22:34.410 --> 00:22:37.329 doing a lot of marketing a lot of publicity a 00:22:37.329 --> 00:22:41.859 lot of events to raise awareness I think there's 00:22:41.859 --> 00:22:47.920 a lot, there's a movement. I see people on TikTok 00:22:47.920 --> 00:22:51.539 and other social media platforms that are very 00:22:51.539 --> 00:22:54.279 open, people that, young girls in bikinis that 00:22:54.279 --> 00:22:58.079 have colostomies. I feel like there's a lot more 00:22:58.079 --> 00:23:01.359 openness about it. So I feel like there's a movement 00:23:01.359 --> 00:23:04.460 out there that's going in the right direction 00:23:04.460 --> 00:23:10.769 to help people understand. And so today, we've 00:23:10.769 --> 00:23:14.170 kind of arrived at the present now. How are you 00:23:14.170 --> 00:23:16.910 feeling? You feel like you really have this disease 00:23:16.910 --> 00:23:19.869 under control for now? Are you feeling good? 00:23:20.009 --> 00:23:23.309 Do you feel strong again? Like, how are you feeling? 00:23:23.349 --> 00:23:27.029 I feel great. I feel great now. You know, the 00:23:27.029 --> 00:23:31.089 ulcerative colitis is in remission. I've recently 00:23:31.089 --> 00:23:35.009 been able to decrease my doses of the Antivio. 00:23:35.470 --> 00:23:39.069 I have my mental health things that I do. I have 00:23:39.069 --> 00:23:43.750 my diet that I follow. So yeah, I'm feeling fabulous 00:23:43.750 --> 00:23:48.529 and back to normal. That's really great to hear. 00:23:48.769 --> 00:23:51.569 Yeah, that's great. Perfect. So I have two questions 00:23:51.569 --> 00:23:54.670 for you before we wrap this up. We were actually 00:23:54.670 --> 00:23:58.410 talking right before we started recording a little 00:23:58.410 --> 00:24:02.309 bit about The difficult healthcare system, specifically 00:24:02.309 --> 00:24:05.650 United States, you were diagnosed there. I was 00:24:05.650 --> 00:24:07.450 diagnosed there and I suffered through my worst 00:24:07.450 --> 00:24:10.509 in the US as well. And, you know, one of the 00:24:10.509 --> 00:24:12.190 things that my doctor always told me was, Oh, 00:24:12.250 --> 00:24:13.829 you actually have very good insurance. And I 00:24:13.829 --> 00:24:17.029 thought, Oh, that's interesting. Great. But then 00:24:17.029 --> 00:24:20.430 oddly enough, the bills for the Remicade treatments 00:24:20.430 --> 00:24:22.869 showed up and I looked at the number and it said, 00:24:22.990 --> 00:24:26.930 $20 ,000 and show what the insurance would take 00:24:26.930 --> 00:24:29.990 care of. But then I saw amounts in the thousands 00:24:29.990 --> 00:24:32.009 of dollars that I would still have to pay out 00:24:32.009 --> 00:24:35.990 of pocket. So healthcare, this is one of the 00:24:35.990 --> 00:24:38.670 issues. Insurance, another issue where people 00:24:38.670 --> 00:24:41.630 who are newly diagnosed tend to struggle with 00:24:41.630 --> 00:24:43.910 sometimes, not just in the US, but mainly there 00:24:43.910 --> 00:24:46.250 as well. I think other struggles that people 00:24:46.250 --> 00:24:50.029 are experiencing is diet and how to handle that. 00:24:50.650 --> 00:24:53.670 And you and I both talked about this. You're 00:24:53.670 --> 00:24:57.069 sort of having an initiative that you're launching 00:24:57.069 --> 00:24:59.049 or in the process of launching in terms of trying 00:24:59.049 --> 00:25:01.269 to help people as well, right? Like, or coach 00:25:01.269 --> 00:25:03.329 them. Can you tell me a little bit about what 00:25:03.329 --> 00:25:06.230 your initiative is and what you're doing or planning 00:25:06.230 --> 00:25:09.490 to do in those fields and trying to help people 00:25:09.490 --> 00:25:14.210 out? Yeah, so I'm a nurse by background. I have 00:25:14.210 --> 00:25:18.049 spent many years actually working in the insurance 00:25:18.049 --> 00:25:22.220 industry. But I was also had many years experience 00:25:22.220 --> 00:25:25.160 as a case manager and doing motivational interviewing. 00:25:25.880 --> 00:25:30.119 So I am between my lived experience, personal 00:25:30.119 --> 00:25:34.200 and professional experience. I am opening it 00:25:34.200 --> 00:25:36.200 up to help people that are out there suffering, 00:25:36.279 --> 00:25:38.880 that need help navigating the health care system, 00:25:39.599 --> 00:25:42.880 that need help setting goals and making changes 00:25:42.880 --> 00:25:47.519 in their lifestyle. And so, you know, I feel 00:25:47.519 --> 00:25:50.960 like you know, I can give back and I'm looking 00:25:50.960 --> 00:25:54.019 forward to doing that. So I'm, you know, have 00:25:54.019 --> 00:25:57.440 my sub stack open and for anybody that wants 00:25:57.440 --> 00:26:01.420 to, wants to reach out, I can provide individualized 00:26:01.420 --> 00:26:04.880 coaching sessions or consulting. Perfect. I'm 00:26:04.880 --> 00:26:06.559 going to put that link as well into the show 00:26:06.559 --> 00:26:09.099 notes so that people can quickly access that. 00:26:09.640 --> 00:26:12.900 So then Melissa, my final question for you is 00:26:12.900 --> 00:26:16.059 one looking into the future. And this is how 00:26:16.059 --> 00:26:19.019 we want to we want to part. Do you think we'll 00:26:19.019 --> 00:26:23.380 see a cure to colitis in our lifetime? Oh, I 00:26:23.380 --> 00:26:26.400 know there's already been so many advances, even 00:26:26.400 --> 00:26:28.940 since I was diagnosed seven years ago in the 00:26:28.940 --> 00:26:31.680 medications. If you go on TV, there are so many 00:26:31.680 --> 00:26:35.380 new medications out there that it's just unbelievable. 00:26:36.059 --> 00:26:40.539 As far as a cure goes. Hmm. That's difficult 00:26:40.539 --> 00:26:44.740 to answer. I know things are going in great directions. 00:26:45.130 --> 00:26:49.910 but it seems to be going in the big pharma direction. 00:26:50.190 --> 00:26:54.289 As far as curing autoimmune disease, I don't 00:26:54.289 --> 00:26:58.190 know. That's a really tough question, a great 00:26:58.190 --> 00:27:00.650 question. You got me stumped on that one a little 00:27:00.650 --> 00:27:07.069 bit, but I think it's a holistic thing. I mean, 00:27:07.329 --> 00:27:10.670 autoimmune, pardon me, I can't help but think 00:27:10.670 --> 00:27:16.049 it's triggered by stress. you know, by our diets. 00:27:17.470 --> 00:27:21.089 There's a lot to this. And I think it's a question 00:27:21.089 --> 00:27:24.210 that we honestly can't really answer, but I'd 00:27:24.210 --> 00:27:25.990 like to ask it because, you know, we all have 00:27:25.990 --> 00:27:28.849 sort of our mindset and most of us, at least, 00:27:28.910 --> 00:27:30.549 you know, who've been living with the disease, 00:27:30.769 --> 00:27:33.130 who are in remission, we'd like to have this 00:27:33.130 --> 00:27:37.089 positive outlook, right? And as much as I myself 00:27:37.089 --> 00:27:40.769 would love to see a cure, I think the more treatments 00:27:40.769 --> 00:27:43.490 we can find, the better people have a shot at 00:27:43.990 --> 00:27:46.809 Going through a prolonged maintenance and remission 00:27:46.809 --> 00:27:49.450 of the disease as well. So I think progress is 00:27:49.450 --> 00:27:52.329 being made there. You're absolutely right. Well, 00:27:52.410 --> 00:27:54.109 Melissa, thank you so much. This has been a really 00:27:54.109 --> 00:27:57.190 fascinating conversation and I really want to 00:27:57.190 --> 00:27:59.430 applaud you as well for wanting to share your 00:27:59.430 --> 00:28:01.710 journey. I think this is really one of the key 00:28:01.710 --> 00:28:04.289 elements that we need in raising awareness. It's 00:28:04.289 --> 00:28:06.910 not just to talk about what the disease is and 00:28:06.910 --> 00:28:10.470 what it does, but to also share personal experiences 00:28:10.470 --> 00:28:14.660 because yes, Everybody is different, but we share 00:28:14.660 --> 00:28:17.480 a lot of the same issues, challenges and also 00:28:17.480 --> 00:28:20.480 victories as colitis patients. So thank you so 00:28:20.480 --> 00:28:22.460 much again for taking the time and sharing your 00:28:22.460 --> 00:28:25.460 story. And I wish you nothing but the best with 00:28:25.460 --> 00:28:27.799 your continuing remission. Thank you so much. 00:28:27.940 --> 00:28:30.380 I appreciate being here and best of luck to you. 00:28:31.240 --> 00:28:35.079 Thank you. That's it for today's episode of Talking 00:28:35.079 --> 00:28:38.420 S*** presented by Colitis Unfiltered. I'm Franck 00:28:38.420 --> 00:28:41.230 Tabouring and if this hit home, or hit your gut. 00:28:41.789 --> 00:28:44.549 Do us a favor, subscribe to the show and follow 00:28:44.549 --> 00:28:47.750 us at Colitis Unfiltered on YouTube, Substack, 00:28:48.210 --> 00:28:51.089 Instagram, Threads, TikTok and Reddit. We'll 00:28:51.089 --> 00:28:53.349 see you soon for more inspiring stories from 00:28:53.349 --> 00:28:54.069 the bathroom floor.