Motherhood with Ulcerative Colitis: Pregnancy, J-Pouch Surgery & Finding Your Voice

Ali: Agree. Hi Amber. Welcome to the show. Thank you so much for being here. I'm gonna start a little different and ask you to ⁓ just give us a little bit of a introduction introduction into yourself.

Amber Tresca: Yeah. Sure. I'll try to make it short. I'm a podcaster as well. So I am one with the yap. So my name is Amber Tresca. I am the founder of About IBD. I was diagnosed with ulcerative colitis, which is a form of inflammatory bowel disease in the long long ago of 1989 when I was 16 years old. I had JPouch surgery, which is a surgery where your

Ali: Yeah.

Amber Tresca: Pollen is removed, and then they take part of your small intestine and create an artificial rectum out of it. So I had that surgery in 1999. And because we're going to talk about some mom stuff today, I became a mom in 2007 and 2010. And I am primarily a writer and editor, and ⁓ mostly do the About IBD podcast to yap and have fun and ⁓ meet cool new people like yourself. So That was the that was the nutshell.

Ali: I love it. I love it. ⁓ I love the yapping part. Because that's pretty much what we do here, right? We're just yapping. so 1999, that's a long time to be living with ⁓ IBD. And I'm curious to know how well let's talk about early diagnosis because you were young, 16 years old. So you know you this is well before parenthood, ⁓ well before.

Amber Tresca: Yeah. Yeah, yeah, yeah.

Ali: I mean you're you're like in high school and having to deal with the this is a pretty serious disease to be dealing with at such a young age. So if you could give us a little perspective on that and your early journey and how what that looks like.

Amber Tresca: Yeah. Like a baby. Yeah, I'll do my best. Sometimes it's hard without like throwing people under the bus. ⁓ 'cause as you get older you realize how messed up things were ⁓ when you were younger.

Ali: Yeah. Well, I would assume that they have changed a lot of in the medical world between nineteen eighty nine and how you are diagnosed today. Yeah.

Amber Tresca: hundred percent. Ha like it's come so far that I I I can't even contextualize it really specifically. But I was sixteen. The diagnosis came after an initial misdiagnosis. I ended up in the emergency department because I was having bloody stools. ⁓ at sixteen I wasn't really tracking my weight. We didn't like Do that at that time, maybe when you went to the doctors, but that was about it. And as a as a teen, ⁓ we didn't really do that at that time. So I was probably losing weight at that time and experiencing left-sided pain, which is common with ulcerative colitis, ended up in the emergency department where they misdiagnosed me with some BS, I think they said intestinal flu, which is like, that's not a thing. That's not a thing. so they sent me home with like some antibiotics and things like that. And that that held off some symptoms for a little while, which I understand now why that was the case, but it didn't really address what was going on. So struggled along for a little while longer, lost a lot more weight, got to the point where it was 20 bloody stools a day at least, and pretty much bed, bathroom, bed, bathroom, bed, bathroom. That was it.

Ali: ⁓ boy. ⁓ my god.

Amber Tresca: And I saw my pediatrician who then referred me to a gastroenterologist, an adult gastroenterologist. I'm sure there were pediatric gastroenterologists at the time. Didn't know any. So that was what we did. And it was going to take too long to get in to see them, which is something that everybody will recognize as a new patient. And it was my mother on the phone. This is core memory time.

Ali: Yeah.

Amber Tresca: It was my mother calling and saying, no, she needs to come in today. She needs to have this colonoscopy today. That she's not in school. Sh like, this is not okay. We're just gonna end up in the emergency room again. So didn't end up with the doctor that was originally going to take my case, ended up with a much younger physician, ⁓ a baby doc. And ⁓ but he diagnosed me right away. So wheeled me out of the colonoscopy.

Ali: Yeah.

Amber Tresca: you know, ⁓ room and then into the recovery room, right? Came in to see me. You have ulcerative colitis, inside of your colon looks like raw hamburger. Didn't leave the hospital for 40 days after that. So it took that long to reverse the course and how diseased my colon was at that time. Came within a hair's breadth of a colectomy then.

Ali: ⁓ my god.

Amber Tresca: Just narrowly escaped it. And in those days, I was living outside of Detroit. They were going to put me in an ambulance and send me down to the Cleveland Clinic because that was a specialty center. Thankfully. ⁓ or not, I don't know. Maybe it would have been better to have it done at that time. But ⁓ was able to get things under control medically, ⁓ took a long time recovering, getting back to school, etc., ⁓ had another major flare-up the next year.

Ali: Yeah.

Amber Tresca: ⁓ went through pretty much that whole situation again. And by the time my senior year came along, I was like, don't even put me in the hospital. I was like, just give me like lots of steroids and I'm just gonna like power through it. And that's what I did so that I could graduate high school and go to my senior prom and all of that. And if you know, I mean, I like it's so funny because at 16, like you don't even know what no I mean, you know what's normal for the past year, past six months, past month.

Ali: Yeah. And be a little bit normal. Sorry.

Amber Tresca: But you don't know what a normal life is. You don't know what a normal healthy life is. And so this is such a change before you have even established and your frontal lobe isn't developed. And you don't even know anything about anything. So yeah, it's really wild. And plus, peers don't understand. And no shade to like they're they're just not going to. It's just impossible. So, and peers don't understand.

Ali: Yeah. Anything. No.

Amber Tresca: Teachers don't understand, professors don't get it, nobody got it. So it was a lot of struggle and power through ⁓ until I became an adult and and found my voice. ⁓ no pun intended.

Ali: Yeah. Well, I don't even think 45 year old women understand. Until you've walked in someone else's shoes, you can't there's no way you can understand. There's there's just no there's no explaining what these diseases do to people until until you've actually lived with it yourself or a loved one you live in the same house with, you can see it happening too. I don't believe, you know, even my own siblings, they see me suffer sometimes, but they don't see the everyday in and out of it. ⁓

Amber Tresca: Hundred percent. Mm-hmm, mm-hmm. Mm-hmm, mm-hmm.

Ali: And so I think that's ⁓ important for people to remember that they don't know because they don't know and they're lucky they don't know. But it it doesn't make it any easier for any of us.

Amber Tresca: Yeah. No, it sure doesn't. I mean, I don't ever want anybody to join the club. Like for sure, no. Like that's always my first thing. I'm so sorry that you're in the club. ⁓ but now we understand each other in a way that other pe that other people are not going to understand you. ⁓ unfortunately. The healthies as as I call them. The healthies, yeah.

Ali: No. Yeah. Yeah. Yeah. The healthies, I like that. okay, I interrupted you. So where were we? steroids through high school.

Amber Tresca: Yep, got through high school. ⁓ in those days, we didn't I had two treatments available to me and they just eventually stopped working, you know. ⁓ so I struggled through until I was 26. And also in those days, this is before the Affordable Care Act. So I did not have insurance. I went for a time without health insurance because I did not have employment that would offer it to me and I was unmarried and you could not stay on your parents' insurance in those days. So I was paying for my medication out of pocket, maybe seeing a doctor when I could. That's no way to be. Don't be like me. And when I did finally get my own insurance and all of that, established care with a new gastro had and he was like, Well, first thing we gotta do is a colonoscopy. And I was like, Yep, you're totally right.

Ali: Yeah.

Amber Tresca: So he went and looked and it was bad. It was real bad. I was 26, so I'd been living with this for 10 years. And another core memory, I'll never forget the look on his face. ⁓ he was a white guy, but he turned like even whiter when he came back to talk to me after my colonoscopy. And you you're loopy and whatever, but I remember this. And he was like, I I'm not sure that you don't have cancer. ⁓ so we're gonna run some blood work, we're gonna do some stuff, and we're gonna do it like right now.

Ali: Yeah. Not make God.

Amber Tresca: ⁓ before you leave or at least within the next day or so. My memory's a little hazy because you know they give you that twilight sleep. In those days it was twilight sleep, it wasn't propofol. So ⁓ turned out I didn't have cancer, but I had dysplasia, which is the changes in ⁓ the cells that are the precursor to cancer. So and he was like, also your colon, your colon is full of polyps.

Ali: Yeah. Okay.

Amber Tresca: ⁓ and and they're probably inflammatory polyps, but again, 1999, we didn't really have I certainly didn't have the knowledge, and I don't really know what was there, you know, what was understood at the time. So I had all these ⁓ what they call pseudopolyps, I believe, in my colon. And he was like, It's gotta come out. There's just no two ways about it. So I remember doing a lot crying, ⁓ you know, drugged, tired.

Ali: No. Yeah.

Amber Tresca: Hungry, dehydrated, doing a lot of crying. but it it worked out well. I had went and got a couple of opinions from different surgeons. And this is a point where I would say, do be like me. Do be like me. Go and find a couple of different surgeons to talk to and get opinions. They had vastly different ways of proceeding. And so I went with the one that ⁓ most aligned with me. And I would say, It is probably one of the top five best choices that I've ever made in my life. I was in the right place at the right time. So I had my J pouch surgery, which I think I talked about it like briefly. One thing about yapping is that sometimes you forget your yapping. is that they remove your entire colon and in my case, most of my rectum. So rectum's where your stool is held. So and they do that.

Ali: Yeah. Yeah.

Amber Tresca: And then they place a temporary ileostomy where you have a stoma. So they take a small piece of your small intestine and bring it through your abdomen. And then you wear an appliance over that to catch a stool. So I had that for three months. And what they did with the very end of my small intestine is that they created something that's called a J pouch because it's in the shape of a J. And so they, yeah, they sort of they sort of, it's like it's amazing, right? It's fantastic.

Ali: Interesting. Yeah.

Amber Tresca: So they sort of fold it back on itself to create a J and staple it together or stitch it together, however it's done. People do it differently, surgeons do it differently. And then they sort of attach like the bottom of the J, if you think about a J, the bottom of it gets attached to either your anus or what's left, in my case, what's left of my rectum, that little bit of my rectum that's left. And then so that J, it then becomes like a rectum, so it can hold a little bit of stool. So that you can have a little time in between, ⁓ bowel movements. So it's held in there until you're you're ready to go. So three months after I had that initial surgery, I had what they call reversal. So they sewed up the stoma, put my intestines back inside my body, and then you're going to the bathroom out of your bottom again. ⁓ it is not like having a colon. It is very, very different than that, but it means that you don't need that external.

Ali: Okay. Yeah.

Amber Tresca: appliance. So that's how I live today. That's what I've got going on today, is is the J Pouch.

Ali: It and you've had that since nineteen ninety nine.

Amber Tresca: Since nineteen ninety nine. So I think has it been half my life? Yeah, it's now been half my life. I've lived with a J pouch. Yeah.

Ali: So does it feel normal to you now or does it still feel different?

Amber Tresca: Yeah, like JPoucher's normal. So for me now. So sometimes I have to, if I'm being asked questions, like if I'm at the gastro and they're asking questions, I always have to be like, well, the like there's normal for somebody that hasn't had these surgeries, and then there's my normal. So like what are we talking about? And how do we contextualize it? So, you know, like they'll ask me like how many times you go to the bathroom.

Ali: Yeah. Yeah.

Amber Tresca: And which is a very common question for anybody living with inflammatory bowel disease, ultra tripcolitis or Crohn's disease or other forms. ⁓ because that's kind of a measure of how well you're doing sometimes. And for me, it's like, I don't know, I don't count, I don't want to think about it all the time. I don't want to make hash marks on a piece of paper or put it into an app or whatever. I'm like, if it gets bad, I'll know and I'll let you know. But other than that, I'm not tracking that kind of stuff.

Ali: Yeah. Right. It's it's similar for me because I've had this for f six seventeen years now, so not half my life, but we're you know, we're easing our way up there. we I'll I when we moved when I moved here I had a new rheumatologist and she's like, Well, how doing? I'm like, I guess I'm okay. Like I'm flaring, but not terrible. And she's like, Well, that's not really okay. I'm like, My hands hurt every now and day and my feet hurt all the time, but you know, I I can walk, I can go f you know, I can do this. So it's like my normal

Amber Tresca: Yeah. Yep.

Ali: And different doctors have different normals too, I think, like where they want their patients to live. And what you know, other people's normal who live with rheumatoid arthritis. It's just it's I I could completely understand what you're saying. It's vastly different from patient to patient and doctor to doctor, what they are willing to let you live with and change changes by the doctor. so interesting that you have the same experience. Yeah.

Amber Tresca: Mm-hmm. Mm-hmm. Yeah. Yeah. I mean, it's insidious also, right? It's not usually and from what I understand from you know, the condition that you're living with, is that it can be you wake up and feel really bad one day. But like with IBD, it is a l it it can be more subtle. So all of a sudden over the course of weeks or a month or something like that, you go, ⁓ gosh, wait a minute. And it's usually somebody who is close to you that will be like, Hey, you look You may have, you know, lost a few pounds or your color looks bad, or you know, I I notice you're the bathroom a lot more than you were before. Like that's usually the type of thing that happens because it's like it it comes on so slowly. Get so used to it. Yeah. Yeah. Which we shouldn't accept that. Like, by the way, I'm just gonna put that out there. Especially, I mean, I I can only maybe speak to IBT, but we had the the the

Ali: Yeah. You just get so used to it. You're used to the symptom and it's normal and yeah, that must be difficult. Yeah.

Amber Tresca: Therapeutic landscape is so big now. Like there's so many drugs available and so many also ⁓ complementary therapies, things like that. Like we shouldn't accept it. Like we shouldn't accept anything except remission. And if you're not there, it means that you just gotta keep moving, keep going.

Ali: Keep going. I think that's part of the problem is that you don't feel good. You don't have a ton of energy. And to like keep going to the doctor and labs and testing and everything. Sometimes I'm just like, I'm done. I'm done with you people. I need a break. I can't I have doctor and test fatigue and I just can't do it anymore. That's what that's kind of where I am right now. I'm like, I need a break, but I know if I take a break too long. The damage that gets done in that little span of time is irreversible. And so then I have to have hard conversations with myself about suck it up, Sally. Get your ass back to the doctor. This is your life, you know? ⁓ so yeah, it's it's hard. It's not easy. ⁓ let's talk about motherhood because now you've had the J Pouch surgery and ⁓

Amber Tresca: Right. Yeah, yeah, for sure. Yep, yep.

Ali: Did you plan your babies? Were they like ⁓ when I say did you plan your babies, I mean did you talk to your doctors extensively with IBD and ⁓ geez, I can't think of the name. OBGYN. ⁓ what did that look like? Because I I there are a lot of people in this community who are trying to be mothers for the either again after diagnosis, ⁓ they didn't have the diagnosis for the first ⁓ child, and now they do, ⁓ or

Amber Tresca: Mm-hmm. Right. Mm-hmm.

Ali: very early finding us and wanting a family and are nervous because of their diagnosis and don't know what to do.

Amber Tresca: Yeah, yeah, I ⁓ so through my work, I actually get to talk to a lot of different gastroenterologists. So one of the questions that I asked of a ⁓ a gastro, her name is Jill Guidos, and she's at Yale here in Connecticut. And I said, how do you contextualize this for women that want to become pregnant and live with an IBD? What do you tell them about that? That journey, how do you treat them? And she was like, Well, we don't treat them any different, you know? She's like, because having IBD does not put you at high ri it doesn't automatically mean that you're a high risk pregnancy. Which is completely different. And going back to what we were talking about earlier in regards to how things have changed over the course of my lifetime and living with this disease, when I was asking questions at 16 and 17 about when I want to become a mother, what's gonna happen? They were a little bit like, whoa, hey, ⁓ you know, it like there wasn't ⁓ good answers. one of the answers was we're probably taking you off your drugs, which ⁓ wrong answer. was what we knew at the time. That what is done today. But ⁓ I, my children, ⁓ ⁓ were ⁓ planned. And another point my journey where I will say, be like me, ⁓ talk to everybody. Because you're going to have to, because the thing about IBD is that the most important thing, and maybe, you know, lots of other autoimmune and immune-mediated conditions is the keeping that inflammation under control. If you're inflamed, it's not going to be good for you. It's not going to be good for a baby. It's not going to be good for even trying to get pregnant. So women with IBD don't have any trouble getting pregnant, usually when they're in remission.

Ali: Mm. Mm-hmm.

Amber Tresca: And pregnancies usually, you know, can go well in remission, but you gotta get there. So luckily for me, I was in surgical remission at the time of my pregnancies. Now I came out of remission and had to do a lot of things and go back on medications and so forth ⁓ a few years ago in 2018. But at the time it was more about how are we going to manage the pregnancy? Does anything need to be done slightly differently because of the J Pouch in the previous? Surgeries. So the biggest question was method of delivery. at the time, we know a little bit more now, but at the time we made the decision to go for vaginal birth and just like just like anybody else, you know, just like the healthies. and that's what

Ali: Delivery, yeah.

Amber Tresca: And that was important to me. That was an important thing that I I wanted to do. And so that's what we did. So I was able to have two ⁓ vaginal births with my kids. And anyone who lives with a J Pouch will say, Well, then how is your J Pouch now? It's exactly the same. There was no problem. No issues. I did tear. I had ⁓ I think a third degree tear with my first. I don't remember what it was with my second.

Ali: No no issues.

Amber Tresca: Because that baby was a lot smaller. But ⁓ they sewed me up and I went about my business and everything has been fine. Now I had extra monitoring during the pregnancies. So there were more ultrasounds, there was more touch points, things like that. and my colorectal surgeon and my OBGYN, they knew each other because same town. so they would talk about me, you know, stuff like that. So ⁓ so I was very, very well.

Ali: Fine thing. Mm-hmm. Hey.

Amber Tresca: Cared for. I know not everybody has that. ⁓ so, but to get back to the original question, yes, very planned conceptions, very planned everything, even though we didn't really know what to do. Like there wasn't a, there's no guidelines. There's really J pouches are actually rare. ⁓ so I was also constantly explaining things to everybody. And

Ali: Yeah. Which is like you should get paid for that. Like it's exhausting. I mean telling

Amber Tresca: I mean it's like

Ali: Yeah.

Amber Tresca: It's like sometimes I say like I should have a card made up, but just card just hand it. Just hand it. Cause sometimes they show up and it's not their fault. It's r it's rare. J patches are rare. But I show up to places and they'll be Okay, well did you bring a change of appliance so that you could 'cause they 'cause they confuse it with an ostomy, you know, things like that, or they just don't understand what it means and how it of how my anatomy is differently. I had an I had

Ali: Yes. So this is you're talking about doctors right now. Doctors don't know the difference. Yeah. Yeah.

Amber Tresca: ⁓ doctors and nurses. Yeah. Yeah. And, you know, z various, you know, people in the in the in that in that circle of care that that surround those folks. ⁓ it's better known now. I the one of the times I had so I don't have a colonoscopy, right? It's really a pouchoscopy. I don't have colon. a lot of things are the same, but some things are different. And one of my pouchoscopies.

Ali: Melical. Yeah.

Amber Tresca: I think it was the first or the second with a with a newer, it's like, you know, my third set of doctors. I got the paperwork that they make you sign, you know. They don't make you. You can choose not to, but the paperwork that they gave you to sign and it's it read pouchoscopy. It said pouchoscopy on it. And again, prepping, you're dehydrated, you're tired, all of this. Crying. Again, I'm crying. And people, I'm not a cry. I'm sounding like I'm a crier. I'm not a crier.

Ali: Hola. No.

Amber Tresca: ⁓ I'm crying, and ⁓ my endoscopist comes into the endoscopy suite and he looks at me and ⁓ he was like, What's the matter with you? Why are you crying? Very funny, like this is totally fine with me. ⁓ and I was like, Because the paperwork said pathoscopy, and I feel seen. And he was like, Well, you don't have colon anymore. You know, of course, like it was so funny, he was so matter of fact, but for me to have been living 20, 30 years.

Ali: Yeah.

Amber Tresca: always having to explain myself. Like it was huge. It was so huge. It was a moment, core memory, and also speaks to how things have moved along. Now do the nurses know what's going on? Not usually, no. But poor things. No, which is wild to me because I'm like, you if you work in endoscopy, how can you not see

Ali: ⁓ yeah. It was a moment. Yeah. No. Yeah. Well they probably don't see many a year, you know. Yeah.

Amber Tresca: J pouches, but I I guess it just is that uncommon, or, and my brain doesn't want to go here, that people with jay pouches are not having surveillance pouchoscopies, which they should be having them. Two sides to that, they're doing well enough that they're going about their life, not being worried about going to the doctor. ⁓ but also you do have to monitor it because things can be going on and you're not aware. that it's happening, you know, and that the biggest risk n it's a small risk, one to two percent chance, but there is still a risk of developing cancer. So you do gotta like get your, you know, regular peaks in order to make sure that's not happening.

Ali: Is there a risk of it failing too? Like it and it you would have to would you be able to have the surgery again to replace it or is it a one and done type of

Amber Tresca: ⁓ it I think it really depends. And so the failure rate is not high. The failure rate is different depending on it's individual, right? It's individual and then it also depends on where you have your J pouch surgery done. ⁓ my surgeon, I was his like sixth J pouch, which is wild. Wild. ⁓ but he trained under the physician that ⁓ developed the procedure. So

Ali: Ha ha

Amber Tresca: Yeah, so like I was good. but there are surgeons that do hundreds. I don't know if they're thousands, I like I don't know, but they do a lot more than them. So they're gonna know more about what to do. So if it fails, it's not common, but it can happen. If it fails, you can have it removed, go back to an ostomy. Or Some people will have a revision. So they might go in, they might have to remove or restructure, do something like that with with the pouch. Because there's all sorts of like little weird things that can happen. It can get like get a kink in it and like things like that ha get twisted and and things like that can happen and and like people need like a touch up. Not that it's a small surgery, it's not. But ⁓ yeah, failure's a possibility. There's no guarantees with it.

Ali: Yeah, twisted or something. Yeah. Yeah.

Amber Tresca: You can also develop lots of different conditions that are specific to the J pouch. So this is a whole other thing. There's a condition that's called pouchitis, which there's several different forms of it, but it's usually treated with antibiotics. ⁓ which again sounds wild, but yeah. Yeah. Or you could develop Crohn's disease of the pouch. ⁓ so that happens.

Ali: ⁓ okay. Yeah. Itis. I'm in the world of itises, so that just sounds ⁓ gosh.

Amber Tresca: ⁓ and then you could manage it, or maybe it gets bad enough that the pouch needs to be removed. You could develop the other things that go along with IBD, like ⁓ fistula, which is an abnormal tunnel between two organs or between an organ and your skin. So stool could be in places that it shouldn't be, and you know, things like that. So all different sorts of things can happen. Again, those are not common except for pouchitis. This is why you go and get screened, and why I will tell you in 1999.

Ali: This is why you go and get screened.

Amber Tresca: When I was having the surgery, my gastroenterologist shook my hand and said, Amazing. Nice knowing you. Have a good life. ⁓ because that's at the time, you know. ⁓ but now we know. Don't break up with anybody. Don't break up with anybody. Even if you're doing well, go and see them once a year, even if it's just like a high five and how you doing, how's your kids? What do you want vacation? Even if it's just that. because

Ali: Yeah, yeah. Nope. Yes.

Amber Tresca: I had to reestablish care again for like the fourth time. And that was a delay that I really I you know, it it it couldn't afford it. Yeah.

Ali: afford couldn't afford yeah i'm in the situation right now where my insurance has decided not to cover my treatments anymore and they will cover the treatment but my doctor's office doesn't it's an infusion i get once a month the doctor's office doesn't do it the way that they'll cover it so i'd have to get another i'd have to find another rheumatologist if that if i want to stick with this insurance and or i just need to find another insurance that doesn't cost four thousand dollars a month

Amber Tresca: Nice. Mm-hmm.

Ali: That will take like it's just it finding a new physician is not an option for me. I I'm like, no, I've had this one for seven years. It's a pain in the neck. It takes a year. I can't be without medications for that long. And no, it's not an option. We just

Amber Tresca: Mm-hmm. Yeah. It it yeah. It's and that's come up so many times in my life and I hear from patients all of the time about these things. And the and this is another aspect of some of the things that I do is speak with the offices of my congressional representatives whenever I can. locally sometimes too, it can be worth it. ⁓ Connecticut, I don't know about every state, but Connecticut has like an insurance commissioner that you can

Ali: We work around it. Yeah.

Amber Tresca: ⁓ ask for an external appeal, that type of thing. ⁓ but one of the things I do is I work with pa different patient advocacy groups and we travel down to DC. Since I'm in Connecticut, it's a nice four hour train ride, Amtrak. Love it. It's fantastic. ⁓ I get the quiet car, get a lot of work done. ⁓ and then go down there and meet with those folks and talk to them about how we need reform for these these things that insurance voices upon us so that they can save a penny.

Ali: Yes, yeah. Yeah.

Amber Tresca: I mean, seriously. They're not s it's like, come on now. And then also sometimes it doesn't make any sense. Sorry, I'm s like I'm a little triggered, so ⁓ but

Ali: Yeah. Really. No, I'm triggered too. Let's go. See, this is what I'm saying.

Amber Tresca: think but I think ⁓ this ⁓ discussion ⁓ be valuable for folks to understand if they're interested in if ⁓ they've been to these things, which everyone has, ⁓ in one form or another. ⁓ for myself, it was an initial delay in treatment. ⁓ So I very sick ⁓ and ⁓ to the biologic that me and my team of six. ⁓ very well educated physicians that I should go on. My interns wanted me to try something else first. And I was like, nope, not gonna happen. So took a while to get that resolved. Most recently ⁓ I switched from ⁓ the that I'm ⁓ on a biosimilar. ⁓ It worked out fine, ⁓ but didn't mean I didn't spend a couple of months ⁓ like you anxiety ridden and like very like

Ali: Right.

Amber Tresca: Scanning my body constantly wondering, am I not am I losing response? You know, this type of thing. So it's not great. So these are the stories that I take down to DC when I go down there and that we champion certain bills, ⁓ you know, whatever's on the table in Congress at the moment. Sometimes they change from year to year. I will say that probably not a lot is gonna happen right now, but we keep doing it. ⁓ And

Ali: Yeah.

Amber Tresca: One of them is to get quicker responses for these types of things, you know, like denials. so that they don't deny and that they don't deny like for no reason. ⁓ happened in my case, which is called non-medical switching. There was no reason to switch me, except that maybe the biosimilar is cheaper. I don't know. I don't know. All I know is that ⁓ paying the same amount every month. The money that I paid every month for my biologic.

Ali: Yeah. Yeah. I don't care.

Amber Tresca: That was the innovative product, the original product, is the same that I'm paying for the biosimilar. So how does this change my life, except for putting me through like the rigmarole of the whole deal? To save somebody, I don't know who, because it ain't me, you know?

Ali: To save somebody a buck. This is what happened to me. I was I've been on the same treatment for three four years and ⁓ first year of the year and a half that I've had this insurance for almost two years and for a year and a half they covered it. Well, they said they covered it, monthly pre approvals, year full year approval, monthly pre approvals, and then my rheumatologist calls and says they haven't paid us since June of twenty twenty five and they're not they're not covering anything for you anymore.

Amber Tresca: My gosh.

Ali: So they're I have a ninety-two th eighty-two thousand dollar balance at the rheumatologist because they're like nine thousand dollars a month and they haven't paid in a year. And that my rheumatologist is like, This is business to business end. It's not on you, it's on them. So you're not gonna have to pay it, which is fine, but it doesn't now I here I am three months without treatment because I trying to figure out the best course of action for me to do and not just jump into the next insurance plan that's gonna do the same thing for me. So like it's a lot of work. It's a lot of work and frustration.

Amber Tresca: Yeah. Yes, yes. What to do?

Ali: Why?

Amber Tresca: I am so sorry that that is happening to you. And yet here you are like podcasting. Like, ⁓ like seriously, like the very definition of pushing through. Like, ⁓ my gosh. Yeah. Yeah. I would I mean you shouldn't have to. Like like end of the day.

Ali: ⁓ thank you. Yeah. ⁓ I'm an Irish Catholic, that's what we do. We just push through. We grin and bear it. I know.

Amber Tresca: That shouldn't happen. And besides that, I know what they said to you regarding this is not your bill to pay, et cetera. And that happened to me one time as well. And the nurse called me and we talked about it for a minute. And it was only like a $10,000 bill. ⁓ and we were and then we I said, ⁓ yeah, they sent me a bill. I said, you know, I'm not paying it, right? You know, I'm like, I'm not paying one single cent on this because no, absolutely not.

Ali: Yeah. Yeah. Not one blood penny is coming out of me my pocket for this.

Amber Tresca: And like it was so funny because we just laughed and laughed and it was just like, but I know not everybody has that, you know, ca can can do that. Like having that hang over your head is very upsetting.

Ali: Yeah. Well no, ⁓ most people would Yeah. Or how about an elderly person who's on a fixed income who who might be taking these medications too? Because I sit next to them every month when they're getting infused with this stuff. And they are confused and they don't know and they don't have the energy to fight like I do. Like, good luck trying to get that for me. I'm not giving it you know, it's it's just you don't think about that, but there's a lot of people who are really will just

Amber Tresca: Yeah. Hundred percent. No.

Ali: Like they have maybe they have the money and they pay it. It's which is wild. Or you know, I can't either. But you know, like I can see where an elderly person would like, Well, I don't want my son to have to pay this if I pass away and then they pay it. I just want it to go away. And it's it's I think insurance is the biggest scam on American people ever run. Period. Like

Amber Tresca: I can't imagine. Yes. I just want it to go away. Yes. Mm-hmm. Mm-hmm. ⁓ completely. Completely. How old are your kids? Are they driving yet?

Ali: No they but we're getting there. You can drive at fifteen in in South Carolina. My daughter's fourteen. So she'll a year from Jan well, in January she can get her permit. So ⁓ yeah.

Amber Tresca: HARA ⁓ nice. Nice. Yeah. Yeah. The ⁓ that you know, that insurance absolutely wild. Absolutely wild when you have a new driver in the house. And I recognize that it's different in different places, but where I live in southwestern Connecticut, they ⁓ the amount that they want to charge is it's obscene. It's an obscene amount of money for people

Ali: Yeah.

Amber Tresca: that like I just had to get a new car. So I traded in my car that was 15 years old and they ran the VIN on it and they were like, it's never been in an accident. Wow. And I was like, yes. And yet insurance does not care. Like it's the biggest, yeah, it's it's really something else. And it's not gonna change tomorrow or next week or next year. But you know, you know, ⁓ if patients want to get involved in that kind of work and trying to reform health insurance, yes.

Ali: That's no, they don't care. Well that's what it's gonna have to take. Yeah. It's gonna have to take people being like opting I know a lot of people who are just opting out of health insurance right now because it's so

Amber Tresca: In some cases it might make financial sense.

Ali: You can't yeah, not for people who like you and I, we can't do that. But for, you know, healthy Joe down the street and his family, just pay cash pay everywhere you go and you will be saving like we we paid seventeen thousand dollars out of pocket last year for this insurance that didn't cover one of my treatments. Seventeen grand.

Amber Tresca: No. No. Yep. Yes. Yeah. Yeah. Right. Which is just not working out for you. I know. I don't even like I I'm very fortunate. I'm self-employed, but I don't go through the exchange. my husband has insurance through his company and I'm on it. But also, I think it was only a few years ago that I thought to myself, this is absolutely insane that my health insurance is contingent upon my relationship status. That doesn't make

Ali: Yeah. Yeah.

Amber Tresca: any kind of sense. So it's not it's not right. ⁓ it's it's you know the way that we do things here in the United States is I can go on about it all day because it's and it's a huge part of my work in trying to get things changed. And and we've come far. I remember what it was like before, you know, the ACA and that was bad.

Ali: No. Yeah.

Amber Tresca: That was real bad. You know, it's better now, but now it's time to move it along and and and do things so that people don't ⁓ aren't like refused medications that's working them for them for a long time. And then and then also being off of your medication, depending on what it is, you go to get back on it, you could develop antibodies. It doesn't work. Yeah.

Ali: Yeah. Yeah, it doesn't work. Yeah, it doesn't work. Yeah, I know. That's that is something that I'm concerned about. I know. Anywho. I didn't expect to talk about insurance again. I it's like it's really a problem for me right now. So like it tends to come up a lot, but ⁓

Amber Tresca: I can't I can't. It's Yeah, well, I think it's important. I mean, it's a huge problem for you right now. Like, let's not downplay this. Like, this is a huge problem for you right now that needs to get solved. And not to scare patients, but people need to be aware that it's happening. And at least it you like in I I know that clinicians and industry and other folks listen to my podcasts. So you really don't know who this is going to reach. So it's important that people understand it no matter where they are in that.

Ali: Yeah. Yeah.

Amber Tresca: you know, in that circle of care and I guess we have to include payers in that. ⁓ it's it's important that everybody know what we're going through and that it is not just business as usual for us all of the time simply because we have commercial insurance. It's just not.

Ali: Yeah. Yeah, it's not. It's it n actually Massachusetts was much better. I we have the health insurance in Massachusetts was a thousand times better than it is in South Carolina and the the laws are different here and f like there's many things that we love about here. ⁓ but I have to say insurance has not been good. And ⁓ I don't know. No, I could never move back. I mean, my whole family's up there, you know, I've got like forty cousins and

Amber Tresca: I was gonna say mm hmm. Yeah. Yeah. Yeah. Would you move back? Would you consider Yeah. Yeah. Yep. Yep.

Ali: 200 second cousins and everybody's within twelve miles of each other up there. ⁓ but the winters were killing me. I had no quality of life from October to May or June, really. It was on the couch three or four days a week. I was so miserable. ⁓ so it was a traumatic decision to leave, to say the least. I had two little ones and I my sisters and brothers had babies the same age as mine, and we were all leaving there, living together, well, living in the northeast.

Amber Tresca: Yeah. Yeah, right. Mm-hmm, mhm. Yeah. Yeah. ⁓ it's so hard. Yeah. Mm-hmm. Yeah.

Ali: ⁓ but I do think it gave it probably added years to my life by the by moving. Like I'm so much healthier here than I was there. The son and I are best friends.

Amber Tresca: Yeah. And this is a yeah, and this is a critical part of your journey as well that probably you're just like, well, that's what we had to do. But I mean, let's think about it at its core for a second. Like you had to move away from your support structure for your health. Like, that's wild. That's wild.

Ali: Mm-hmm. I did, yeah. It is. I know. I I could my kids, we've been here seven years this week, actually. So my daughter's 14. So she was seven. My youngest was six. They're 14 months apart. I couldn't have done it when they were babies because I was in such flaring. The rheumatoid was so out of control. ⁓ and I was in one doctor to the next, con like just going. And so my mother was helping me so much with my babies that

Amber Tresca: Yeah.

Ali: ⁓ I I couldn't have left then. So it was a strategic time in which we talked about it for a couple of years and things got easier. They got more self sufficient. and yeah, then we just made the decision that moving would be the better option for me. And give it a shot. If it doesn't work, you can always move back. ⁓ so but it's it's been life changing for me.

Amber Tresca: Mm-hmm. Sure. Yeah. Yeah. Yeah. Why why did you choose though? Like what like could you have moved anywhere that it was warm or what?

Ali: I could we could have moved anywhere. My husband's in construction. He does commercial construction. So actually like Arizona probably would have been better. Like drier heat is good for rheumatoid. But ⁓ I wanted to be like I'm an ocean girl, so I needed to be somewhere close to the ocean. ⁓ and I wanted to be a quick direct flight home in case I needed to get back up there. So Logan to Charleston is a two hour flight and I can I can be home in four hours if need be.

Amber Tresca: Nice. Yeah, yeah. Yeah. Mm-hmm. Got it. Yep. Yep. Yep. If need be. Mm-hmm.

Ali: So that was a big thing and we didn't want to go to Florida. ⁓ but we wanted some place that maybe had a little seasonal change because after a hundred days of ninety-five degrees, it's nice to cool it down for a bit and I can handle that. But really January and February, I'm not happy. My boy I I'm in real estate too and I tend to dip. That's a slow time of the year anyway, but like I I just I don't have it in me in the colder months. ⁓ and it's only six, seven, eight weeks here. It's not very long. ⁓

Amber Tresca: Sure. To push. Mm-hmm. Mm-hmm. Mm-hmm. How much of a seasonal? Because I think about that sometimes. I mean, like the ultimate goal would would be to be a snowbird, quite frankly. ⁓ but I because I I you know, I mean, falls like my favorite season. Like I I I don't know. I don't know if I could stand. I think that it being ⁓ like living in Los Angeles or s or something like that, like I I don't know that I could take that. I I I would really need that change.

Ali: So yeah. Yeah. Yeah. We need I need it too. And usually right around Halloween it gets cooler cooler here. So it might get you know, into the forties. Like in the winter we'll get into the twenties or thirties like a day or two, but by noon or by one o'clock it's fi it's fifty degrees. So like the mornings will be cold. And so like that's enough change for me. We don't really have a fall, like New England, beautiful fall, like

Amber Tresca: Yeah. Yeah. Yeah. Mm-hmm. Yeah. Mm-hmm.

Ali: Mm, no, like the leaves don't change or anything like that. But ⁓ it's enough that you we were s we don't need winter jackets, but we do need sweaters and things, you know, it it might snow. It's snowed twice since we've been here, but only a dusting and then it's gone, which is fine by me.

Amber Tresca: Right. So your kids do they remember snow from when they were little?

Ali: ⁓ my daughter has nostalgia. Like she just has all of these memories of I'm like, no, that's not how it went at all. Like it's not. It's not she like loves it, wants to go skiing. And my husband grew up in upstate New York, so he grew up skiing. ⁓ I I was an athlete, b I played basketball and we were not allowed to ski. So I it's not something that was ever a part of my life. I just never was a winter sport person. One of my girls is like,

Amber Tresca: That's so funny. ⁓ yeah. Yeah.

Ali: It's too cold, I don't like it. And the other one has all these like frozen memories of it being so wonderful. And I'm like

Amber Tresca: Romantic, yeah. It's yeah, it's when you're out there shoveling. We had a I as I'm sure you know and you heard from your family, this past winter we had an awful lot of snow and up in Boston it was far worse than it is here down by the shore in southwestern Connecticut. But like it was brutal. There, you know, we were out there like it felt like every day shoveling for a while. So

Ali: Yeah. Yeah. It's funny 'cause I'll get a lot of calls in the winter months from people up north who are looking to relocate down here. Some sometimes they make it, sometimes they make it and they do it, and sometimes it fizzles out because by like May or June it starts to get a little bit warmer and then they're they're in love with New England again and then I'll hear from them again in January, February. Yeah. Yeah. Very cyclical.

Amber Tresca: That's so funny. Yeah. That's what happens, I think. That's what happens. It's like it's nothing like fall. I mean, honestly, there's nothing like summer in Michigan and fall in the northeast. So yeah.

Ali: Yeah. I know. I I we do miss the fall for sure. Football, football season, that kind of stuff. Uh-huh. But yeah. ⁓ But yeah, we did move because of my health, and that's that's what it is. It wasn't like I said, it was I would say it was traumatic telling everybody we were moving. ⁓ but here we are. ⁓

Amber Tresca: Yeah, yeah. ⁓ yeah, yeah, yeah, yeah. That's wild. Yeah. Yeah. Mm-hmm. You're better for it. Yeah.

Ali: We are better for it. And I hate to say it. And my k actually my husband's happier. Like the the grind of construction, he worked like in downtown Boston construction, commercial buildings and the grind of that was and he was working in not great neighborhoods. He was getting guns pulled on him all the time and like just he needed to get out of there. He's so much happier here. Just the pace of life is slower. ⁓ so snowboarding, I can see where you're where you would like you'd hate Florida because it's summer all year long. It's too hot.

Amber Tresca: Yeah. Rough. Mm-hmm. Mm. Yeah. Mm-hmm.

Ali: North Carolina might be a good fit for you. Because they do have they do have ⁓ more ⁓ seasonal change there, more colder colder weather. But anyways, let's let's get back to topic here. I I don't know, I don't know. It's like squirrel, squirrel, squirrel, squirrel.

Amber Tresca: Maybe. Yeah, yeah. Yeah. What what is that? What does that mean? Yeah. No, that's good. Though what el what else can I tell you? What else do you want to know?

Ali: Well, I wanna I'm interested to know what life like a after you had your children, you said you were you were like in a in a remission, surgical remission, and then you fell out of the what we're talking about. Okay. So what did that look like when you're dealing with kids? Because now you have kids at this point. Yeah.

Amber Tresca: Mm. Mm-hmm. Yeah. Yeah. Yeah. ⁓ yeah. well, it meant and they were little. ⁓ it's funny how fast they grow up, and it's weird to say that even just like 10 years ago, yeah, they were little. They were so little. ⁓ but it meant that I was really pulled out of life. I was really pulled out of everything that I was doing. I freelance have done so since my son was a year old, and it that was unsustainable for me to take a kid to daycare every day. I couldn't do it.

Ali: Okay. Yeah. Yeah.

Amber Tresca: ⁓ so I went freelance and was lucky enough to be able to do so and have been able to do so for all this time. But it I I I was like getting through, pushing through everything that needed to be done during the day. And then after dinner, like literally taking to my bed, you know, like some Victorian sick person with a heating pad. And because I didn't know what was happening, we had to go through a I

Ali: Yeah.

Amber Tresca: We. There is no we. There was just me and my body. ⁓ going through all the testing to figure out what was going on, because you know, of course, when you have ovaries and uterus, they start looking at all that stuff. And ⁓ that's the first thing everybody blames it on, even though I had a history of ulcerative colitis. ⁓ but it turned out that I developed strictures in what's left of my intestines, which means that they are closing up on themselves. So stuff doesn't move as effectively through as it once used to.

Ali: Yeah, yeah.

Amber Tresca: So that was why I needed to go on treatment again after being in surgical remission and not having to do much of anything for a really long time. ⁓ but it took a while to figure out what it was. We figured out what it was, and then it took a while because insurance got in the way. So it took a while for me to get treatment. But once I got on treatment, I did improve. The strictures are still there, but

Ali: Yeah.

Amber Tresca: They were at least partially inflammatory, which meant that it was like swelling, right? So ⁓ getting out of biologic and getting that inflammation under control kind of opened it up a little bit. There's some scar tissue there as well because it was going on and I didn't know it. ⁓ so we didn't catch it until it caused me symptoms. And

Ali: Yeah. Mm-hmm. It's how it Yeah. ⁓

Amber Tresca: That's where I am today is that they tell me I am in what they call histologic remission, which is that like test results don't show anything. Like there's nothing ⁓ to speak of. But, you know, at this point though, like I'm also 53. So now like other stuff is happening. You know what I mean? And it's just and it happens earlier in in sooner, at least it did to me, when you've lived with ⁓ an inflammatory condition for a long time, you know. So I'm still at the doctor's like.

Ali: Yeah, yeah. Yeah. Yeah.

Amber Tresca: constantly and have been through pelvic floor therapy and like, you know, all this other ⁓ kind of stuff to manage these these things. ⁓ but I'm not gonna I'm not gonna complain too much about it. ⁓ I mean it's just it's just the reality of it. I'm lucky that I do have insurance. I can't go to the doctor. They do usually figure out what's going on. I am usually able to get get get treatment and get something going. ⁓ yeah. So that's where I am today.

Ali: Yeah. Yeah. When when you are when you said you were like sick and in bed at night, I I can relate to that. And I'm sure most people who ⁓ are are listening to this can relate to that that I mean I I'm not even gonna lie, last night I went to bed at seven thirty because I'm tired because my meds aren't worth you know, I don't have my meds. ⁓ so ⁓ today you you ⁓ symptom free? ⁓

Amber Tresca: Yeah. Mm-hmm. Yeah, yeah. I mean, like, okay, so something that we talk about a lot now with IBD that we didn't talk about in the way back when when I was diagnosed, because they thought it was basically a condition that affected your intestines and that's pretty much it, right? You know? ⁓ it affects your whole body, it affects everything, you know, people can have complications, skin, eyes, liver, gallbladder, like, you know, you name it. It can urinary tract, like all these things. ⁓ and I've had a few of those ⁓ over the years.

Ali: Yeah, yeah. Yeah. Systemic.

Amber Tresca: I think right now the biggest thing is fatigue. And there doesn't seem to be a whole lot out there. I mean, I take vitamin B12 shots. That's something that people who have had surgery on their bowels sometimes need because your body doesn't absorb it. So I do that. They recently told me to increase the vitamin D that I'm taking. So I'm doing that, you know.

Ali: Absorb it, yeah.

Amber Tresca: I go get my blood work done, et cetera, et cetera. but it's kind of like I don't have the energy of what I think, because I don't know what it is to be a healthy 53-year-old. I know what it's like to be me. but I can look at my peers and they don't go to bed at 7:30 at night like we do sometimes. So yes.

Ali: Yeah. Right. Yeah. No. Mm mm. Or they work out every day. Like I I c I mean sometimes you it's hard to look at not it's hard to not look at the your neighbor next door who's the same age with the same amount of kids and doing but that is very much the life that I live right now. It's like and the people will invite me to do things and I'm like, man, I can't go play pickleball and my wrists don't work. I just I need

Amber Tresca: Yep. And compare. Mm-hmm. Mm-hmm. Mm-hmm.

Ali: My my knee does I need a knee replacement. I need my other knee. Like I but I don't lead with I have rheumatoid arthritis either. Like it's it's I've had it for so long that the vast majority of people that live here don't even know I have it because it's just something that I've gone through my life with. And I don't need to explain myself to every single person that comes along. But it is a mind.

Amber Tresca: Yeah, yeah. Same. Mm-hmm. Yep. It's ⁓ Yeah. I'm cracking up at the pickleball. Yeah.

Ali: F to you know, to to think about. ⁓ to see everybody else live in ⁓ yeah, I know, pickleball. It's such a big thing here. Everybody plays pickleball. Or ⁓ Mahjong. I don't do Mahjong either. Do you play Mahjong? ⁓ it it it is having a moment. It is having a moment. And I hate board games, so and I tried to play it once.

Amber Tresca: Mahjong is is having a moment. Like I g up here too. Yeah.

Ali: Do you know that board that game changes every year? You had to learn all these tiles and how they work and then next year they come up with new ones.

Amber Tresca: I did not know that. I know that there are people that teach people to play Mahjong and I was kind of like, Well, why do you need t somebody to te That's why.

Ali: ⁓ I have a master's degree and I was like, what is happening here? This is I cannot. It's it's hard. ⁓ but yeah. Yeah. So Mahjong and pickleball, big things here. And I I at least at least with the pickleball I can say I can't do that. I need a knee replacement with Mahjong, I have to I have to make it work. All right. So give me a piece of advice to a young woman, young mom.

Amber Tresca: That's funny. Mm, yeah. No pickable. Yeah. Yeah.

Ali: who's newly diagnosed with I B D or arclative caritis. That is not how you say that. Alcerative colitis. My cousin yeah, my cousin has that, so I I know that. ⁓ that you would give to them in their early stages of motherhood and disease.

Amber Tresca: That's hard. Yeah. Mmm. Mmm. Take care of yourself. Take care of yourself. You have got to keep that inflammation under control. You've got to. And anybody who tells you to go off your medications, ⁓ because you're pregnant or because you're thinking about becoming pregnant, ⁓ that's probably not the answer. ⁓ so seek out a second opinion. But you definitely need to take care of that IBD. Don't ignore it. the hormone fluctuations that will come along with pregnancy, with birth, with perimenopause can cause you problems. So keep your team close, take care of yourself, and learn everything that you possibly can about your condition. So it's really broad advice, but I think it goes down a lot of little different holes that can cover a lot of different issues. Yeah.

Ali: It really does. And I'd piggyback on it a little bit. If you're not comfortable with someone on your team, find somebody you are comfortable with. Do not do not just go along to get along because you don't know and you don't have a voice yet because you're new into this whole thing. And ⁓ you gotta be comfortable. You gotta trust them and you gotta interview them. You pay their bills. Just remember that. That's what I like to say. Exactly.

Amber Tresca: Hundred percent. Mm, mm-hmm. ⁓ they work for you. Like, remember that they work for you. I mean, everybody is deserving of respect. Okay, but so, but they work for you. And I will say that I think mother motherhood helps women find their voices because maybe for the first time you end up advocating for your child. And I think we're all gonna advocate harder for our children than we would ever do for ourselves.

Ali: Mm-hmm. Mm-hmm. Thousand percent.

Amber Tresca: But once you do it for your child, then I think it also becomes a a little bit of a lesson in how that works and how to do it for yourself.

Ali: Yeah. ⁓ it's like flexing a muscle, you know, like you you just you work that muscle out for the first time with your child and now you have a voice. I wish I could go back and do my pregnancies again because I was newly diagnosed and like diagnosed and pregnant within months of each other. And and I was a deer in the headlights and did not ask questions and just like sat in a hospital bed and labored without ⁓ like absolutely now I would never do it today. ⁓

Amber Tresca: ⁓ my gosh. Yeah. Mm-hmm.

Ali: Because you have perspective and with time. And ⁓ so I think that that's really good advice. Listen to your doctors, but be comfortable with them and ⁓ ask questions and don't ignore. I ignored for like five years. I have so much damage from that. So much damage from that. Because I thought I knew better. ⁓ but yeah, that's that's excellent information. Anything else you'd like to add for our audience? I don't want to keep you too much longer.

Amber Tresca: Yeah. ⁓ Yeah. Yeah. Mm. I mean I've done a ton of yapping, so I I've

Ali: I know. This is my favorite way to podcast. I just sit back. Let's let you talk.

Amber Tresca: Yeah, well, you know, we we just met recently, so we don't have a deep history of knowing one another's stories yet. And so it's a little bit of getting to know one another, and I'm sure we're gonna work together many more times over the course of our careers doing this. ⁓ especially as some of the very small group of women podcasters who are living with ⁓

Ali: Yes. Yeah.

Amber Tresca: immune mediated conditions. So ⁓ we're gonna circle around each other like all of the time. So yeah, the yapping the yapping can go can go a lot of different places. But ⁓ I've I've enjoyed hearing more about you as well. ⁓ since you answered a few of my questions. But can't help myself. Can't help myself. I'm used to a asking the questions, so

Ali: Love that. Yeah. ⁓ thank you. No, I like Yeah, I actually like it. I mean I would prefer like I said, I don't love when it's just me on my on an episode because it's just me talking, but like back and forth, talking to people, learning their stories, sharing your story is so valuable. There's so many women out there who struggle and don't know where to turn and feel so alone. I felt so alone because when I was diagnosed 17 years ago, there was no communities for that I was aware of.

Amber Tresca: Yeah. Yeah. Mm-hmm. Yeah.

Ali: You know, there was there was groups on Facebook which and they were harder to find and it was really miserable, misery, sin dipped in misery in a Facebook group. Everybody was so miserable that I had to get out of it because I just was like, This is toxic. And I get it, we're all miserable because we're all in pain. We're all suffering. But that's not how we build each other up either.

Amber Tresca: Right. Yeah. They were harder to find. Yeah. Mm-hmm. Yes. Mm.

Ali: And advocating for people. ⁓ that's something that's been on my to do list for twenty twenty six is to get into advocacy for ⁓ insurance things and things like that. And it hasn't happened yet, but maybe July's the month. Okay.

Amber Tresca: All right, mama. Like we're gonna talk offline because ⁓ you know, we can do more stuff. And I have some more, I have some more ideas for you about ⁓ just as we went through discussing how you like to podcast. ⁓ I got an idea for you. We'll talk about it offline so nobody ⁓ so that ⁓ you can surprise folks with it. And ⁓ just to let everybody know, I am at about IBD across all social media and on the YouTubes and on the podcast apps, all of them. So you can find me there.

Ali: Асом. Excellent. Perfect. Yes.

Amber Tresca: ⁓ if you wanna hear although I don't yap on my own show, it's really just it's mostly me listening.

Ali: Well, you can yap on my show anytime you want. We can be. Yeah, I love it. I love it. Well, you're you're a gift and I'm so grateful that our paths cross. I'll thank Mariah separately because I think she's the one who introduced me to you. ⁓ and yeah. Yes.

Amber Tresca: I know. That's what's so funny. So I go on other people's shows so that I can I can actually do the apping. She was Mariah of Mamas Facing Forward, who is an amazing resource and one of the most beautiful humans I've ever known in my life. And so driven. So yeah, she's good to know.

Ali: Yeah. So this is a phenomenal group of women that I'm connecting with with my short couple months into this podcasting

Amber Tresca: Yeah, yeah.