Breaking down IBD, with Amber Tresca

Episode Transcript

Ariel: Hello, everybody, and welcome back to another episode of the “Colon Health Podcast.” I’m your host, Ariel Bridges. And today, we have Amber Tresca with us. Hi, Amber? How’s it going?

Amber: Hi, Ariel. Thanks so much for having me. I’m really excited to talk to you.

Ariel: We are so excited that you are here today. And do you mind just starting us out here? Can you share what it is that you do with our audience?

Amber: Sure. I’m assuming that you don’t mean all of the science fiction that I watch or all of the bad jokes that I make. I’m assuming that we’re gonna be talking about IBD so we’ll start there. My name is Amber Tresca, as you said. And I’m the founder of About IBD. I’m also the co-founder of IBDMoms. And my day job, as we sometimes like to say, is as a medical writer and editor. So, I primarily write patient-facing materials for Verywell Health. And what I do there is to take the different aspects of digestive disease and work through them and tease out what’s important to patients. And then put that into plain language for everyone to be able to understand.

I also run a podcast that is called “About IBD.” And on that, I talk to people who live with inflammatory bowel disease, which is Crohn’s disease, ulcerative colitis, or indeterminate colitis about their journey. And I also interview clinicians and get ideas from them that can help patients get more information about how to manage IBD and live a better life with these diseases. So, in a nutshell, that’s pretty much how I spend my time.

Ariel: We’re all about accessible health education here. And that seems like it’s also right up your alley, something that you mentioned with your podcast “About IBD Podcast,” which I will link in the show notes below is you discuss different IBD journeys with different people. And I love having all of our guests share their own personal journeys on the podcast, because, well, you understand the importance of sharing journeys, but I would love to hear more about your journey and kind of what brought you to all these interesting things that you’re doing.

Amber: Right. It’s pretty wild. And when you ask people about their journey, and mine is no different, there are so many twists and turns and you could probably go on for hours about it. So, I have developed over the years, something that I try to help patients too, as well is to sort of develop a succinct way of telling your story and hitting the high points. So, I’ll just go through that and hit the high points of my journey with IBD because I was diagnosed with ulcerative colitis when I was 16 years old. And that was three decades ago. So, it was in what we kind of refer to now as the pre-biologic age. So there weren’t a lot of treatments available. The treatments were pretty limited at that time. So I lived with the disease. It was never really very well treated.

We think of IBD as a disease that comes and goes. So you have active disease, hopefully, you get treatment and you get into remission. And I feel like the 10 years that I was living with ulcerative colitis in that way, never really got to that remission point so it was almost always constant disease activity punctuated by hospitalizations. But when I was 26, things really came to a head. And we found that I had what I like to refer to as my last colonoscopy because my colon was falling apart and I had no quality of life. And we’d sort of topped out of the treatment options that were available to me at the time, but there was really nothing that was gonna help anyway, my colon was in such bad shape. It was just beyond the point of repair. So at that point, we decided it was time for surgery.

And in ulcerative colitis, surgery means having a colectomy. So that means removing the large intestine and placing an ileostomy. In my case, I was also able to have a J-pouch created. So what my surgeon did was he used the last part of my small intestine and he created an artificial rectum out of it. And that’s why we call it a J-pouch, because it’s in the shape of a J. And then that J-pouch gets connected to the anus. So, I had the first surgery where my large intestine was removed and I had an ileostomy. And at that time they also created the J-pouch. But for three months, I had the ostomy and then I had it reversed. So, my small intestine got all connected together again. And then I started using my J-pouch. So that meant that I was going to the bathroom out of my bottom again, which is how most people think about going to the bathroom.

So, at that time, I realized that I was having these surgeries and everything was explained to me very well, along the way I had a great medical team but up to that point, I didn’t know what I should have known. I never really took an active role as a patient and I was too uneducated and I recognize that. So, I started getting involved more in the IBD community. And at that time I was also starting my career in medical publishing. So these two things were rather synergistic. And I work in a lot of different areas in terms of medical writing and editing, but it was IBD and digestive disease for obvious reasons why I was really focusing and where I was really putting a lot of my energies. So, I worked for medical publishing health for several years, but then I decided to have a baby.

And at that time I left my career there and decided to go full-time freelance, which has worked out really well for me. And a few years after I decided to do that, I created About IBD, because I wanted to get involved more deeply with the IBD community. And then in 2018, I worked with my friend, Brooke Abbot, who is of “The Crazy Creole Mommy Chronicles.” Together we founded IBDMoms. Because we’re both mothers, we both live with a J-pouch. And we felt isolated and alone because so many of the mothers around us were living a completely different experience than we were. So we wanted to support moms like us, moms who live with IBD, and also moms of kids who live with IBD. So, IBDMoms is now a non-profit and we’re working now to bring more events and more information to our IBDMoms’ community. So these are the twist and turns of my journey, the high points. And that’s how I got here to where I am today. And that’s pretty much how I spend a lot of my time.

Ariel: It makes me so happy when I hear about it, we’ve talked about this on the podcast before, but the importance of community and how it can feel so isolating when you think about, okay, I have IBD which can be isolating in itself if you don’t know other people that are feeling or experiencing the same symptoms as you. And then on top of that, you are a mom, which being a mom has its own collection of things that can be difficult to understand if you don’t have a good community with you. So being able to really combine both of those communities and have this specific group of people to be able to chat with each other and exchange ideas, I feel like it has to go so far in helping you just cope and feel less alone.

Amber: It really does because in thinking about how long it just tells someone to give the high points of my journey, and what I’m living with today, and that I’m not like other moms my age, or who have kids the same ages of my kids, it’s a different thing. And in the wild, I meet people in my regular life, every so often who live with an IBD, and because of the nature of the work that I do, it usually comes up. So people will tell me, but it’s very rare for me to find someone who lives with a J-pouch. And it’s rare for me to find someone who lives with the same difficulties that sort of severe disease brings. So, I’m living here, living my life, trying to do the best for my family and for my kids, but not really having the kind of support structure that would help me thrive.

So that was why Brooke and I realized that we were sort of going through this alone and we didn’t need to. So we created this community and we’re building it out and we’re learning how…we know how we wanna be supported, but we’re also learning from the moms in the community, what they need and what would be helpful for them, which is everything from learning how to wear your baby, to what you can do when you’re too fatigued to get out of bed. How can you be a mom from your bed and handle all the things, especially when the kids are babies or they are toddlers, and they have all this energy. So these are some of the things that we’re working through. We lived through them and we’re hoping to give our experience to other moms in the community. And then also the moms who are caregivers, because that’s a whole other thing in itself to be the mom of a kid with an IBD.

And so we’re looking to connect those parents together as well and help them find the support that they need as they navigate the journey because they are making medical decisions for their children. And it’s extremely difficult. It’s hard making just the little medical decisions, let alone these big ones that you need to make with an IBD. So, these are some of the things that we’re looking to bring to the community. And it’s been so helpful to have things like social media, where we can gather together and just connect moms together. And then also connect moms to those clinicians who have an interest in pregnancy, and birth, and breastfeeding, and being a parent with IBD because we’re learning more about that every day. So it’s really been a fantastic journey to be on. And we’re looking forward to doing a lot more in the future.

Ariel: I’m getting so excited and there’s so many things that I want to ask you, but I wanna just take a step back first for our audience. And you’ve touched on this a little bit, but can you just explicitly state, what is IBD and then how it’s different from IBS, which we hear a lot as well?

Amber: Right? Yeah. I wanna put it in broad terms. So, broadly speaking, IBD is an immune-mediated condition and inflammation develops in the digestive tract. And then we have the two major forms. So we have ulcerative colitis where that inflammation is going to be in the large intestine and in Crohn’s disease where the inflammation can appear anywhere in the digestive tract. So that’s sort of your high-level this is how we talk about IBD. But I have to point out that these diseases go beyond the digestive system, and they really do affect the entire body in various ways because they cause inflammation. So IBD can also manifest with extra-intestinal conditions, and that can be anything like eye diseases, it could be arthritis, it could be skin problems. And there are so many more, those are just a few of the ones that are more common, but there are many more aside from that.

So, in the way that it’s different from IBS, which is irritable bowel syndrome, and that’s another condition that affects the digestive tract. And it really also can lower people’s quality of life. But the biggest difference there is that IBD causes inflammation and IBS does not. And to make things even trickier, people can have IBD and IBS at the same time. And then you’re trying to tease that out and figure which one is causing the symptoms and what’s going on there. IBS is also more common than IBD is. IBD is considered a common condition, but IBS is even more so.

So IBD is treated with medications, lifestyle changes, and then also, of course, sometimes surgery, like I was just describing for myself. IBS is also treated with lifestyle changes, and there are some medications that are approved to treat IBS. But surgery isn’t really used for IBS. That’s not really a treatment option. So those are some of the big differences. But I think the thing that they have in common is that they have a really profound effect on people’s quality of life. And they’re both really difficult to diagnose and then also really difficult to treat. So there’s a lot that we can point to that is the same, but that biggest difference being that IBD causes the inflammation and IBS does not cause inflammation.

Ariel: Got it. So, with those difficulties of treating, and as you are going along this journey of trying to figure out what works best for you, how are you managing those symptoms that you are experiencing? And since you happen to have the expertise, I’m curious how the management of those symptoms differs between children versus adults, if there is a difference.

Amber: Right? Yeah. There is definitely a difference. And so, I mean, IBD is so individualized, so every person is going to find their own way to treatment because not only do you have the different forms of IBD, and then there are, you know, subtypes under that, but then the disease can also be mild or it could be severe. So people go through periods where they have active disease, and then they go through periods where, you know, hopefully, fingers crossed you get in some remission. Hopefully, those are longer than the periods of active disease. So management really focuses on that for the most part, in treating active disease and then getting you somewhere to a place where it’s hopefully remission and then maintaining that remission. But the thing about it is that not every treatment works well for every person. So there are people that start on a medication, they get diagnosed, they start on a medication it’s working for them, and they’re off and they’re living their life.

But other people go through several different medications before they find the one that works. So it can be really difficult to get yourself into remission for some people. I think most people also use some kind of complementary therapy, what we call complementary therapy, but which is really becoming so much more mainstream. So I’m talking about things like, okay, you’re using medication, you get that inflammation under control, but you’re also looking at like nutrition. Maybe you’re working with a dietician. You’re looking at stress reduction. And that, you know, that’s a huge thing that can involve a lot of different aspects from meditation, mindfulness to working with a therapist that’s also individualized. And then some people look towards supplements to help them. People with IBD have things like nutritional deficiencies sometimes. And so we look to work with our medical team to understand how supplements might help us.

So, it’s all about finding what works for your life, what works for your type of IBD, and it can get frustrating because I kind of say sometimes it’s a little bit like throwing spaghetti at a wall, you know, you’re not really sure what’s gonna stick. And so you have your healthcare team, which can help guide you through and sort of point you in the right direction. But you’re also using this shared decision-making. So you’re kind of deciding, well, how does this treatment plan fit in with what my actual life is like? Is this gonna be too onerous? Can I actually stick to a nutritional plan? Can I drive to receive an infusion versus do I want to take medication that I can inject myself at home? You know, all of these decisions go into place.

So it’s more about just like what we think is gonna work. And also what’s gonna fit into your life because, you know, the best treatment is the one that you’re actually gonna do, not just the one that somebody presents to you might be the one that they think should work for you. All right. So we have all of that going on, but then you have children. And in children, it’s even different because they’re still growing and IBD can affect children’s growth. And in fact, there’s times when children are diagnosed with IBD because they’re not growing. And they’re not really sure what’s going on. And then they find out that it’s because they have IBD and they’re not absorbing the nutrients that they need to grow properly. So that’s a huge thing that needs to be managed in IBD because you have to get all that information and everything that’s going on, you have to get that under control. So these kids can grow normally and have a normal childhood experience.

And with adults, we have, I don’t know, I think it’s a lot of treatment options, maybe that’s because when I was diagnosed, there were so many fewer. So we have these treatment options for adults. But part of the problem with IBD is that they work for a while and then they might stop working. I mean, I know people that have been on one treatment for like 10 years, and they’re still doing great. But then it’s probably more common than people are on a treatment for a while. It might stop working, you move to the next treatment choice. But even though we have a fair amount of treatment options, they’re not unlimited, right? So if you keep burning through those, kids are younger, right? So just through the passage of time, it can get frustrating because it feels like they’re burning through all of their treatment choices. That can be so difficult and it can be so upsetting and frustrating, and that can also have an effect on your quality of life.

And the other thing is is that with kids, and I think this is almost always the case, no matter what condition you’re talking about is that there’s just not a lot of data about how the treatments affect kids. So as parents, we worry about giving our kids anything that we don’t know how it’s gonna work out exactly. We wanna take our time and understand these things, but sometimes there just isn’t a lot of information available in how these treatments work for kids with IBD if they’re even approved in the first place. So it’s beginning to change. There’s more being understood now. One of the things that’s being focused on is understanding when kids are diagnosed, what is the progression of their disease going to look like over their lifetime, so that the kids that it’s thought, okay, based on these different features of what they have going on today, their disease might go on to be pretty severe. So maybe we need to think about treating more aggressively for those kids.

So that’s some of the things that we’re trying to understand about how kids are affected by IBD. But I will say that to me, we still have a long way to go. I mean, it’s very different than when I was a teenager and we were, you know, it felt like we were fumbling around in the dark. But it still feels like, you know, and I hear this from parents all the time, it still feels like we don’t have a lot of good information. We’re trying to get them the right treatment at the right time, have them have a normal childhood, grow as they should.

And then we’re also trying to understand why kids are developing IBD in the first place, and then why pediatric cases are seeming to grow. Why is this happening? So there’s certainly a lot more that we need to understand, and not only about treating adults versus treating children, but why are people developing this disease in the first place? And maybe how we can prevent it. These are some of the major things going on with pediatric and adult IBD and then also in the future, what researchers are thinking about looking at, and the direction that they’re going in, as far as IBD treatment and management.

Ariel: It’s encouraging how far we have come for sure but it does seem like there still is quite a bit of ways to go. And I feel like when, especially when it comes to parents and you want your kid to just feel better, you can often be kind of grasping for solutions or trying to figure out what’s going on. So with that being said, what are some of the biggest misconceptions about IBD that you feel like you’ve heard, or that are prominent within the community?

Amber: Yeah. I was diagnosed long enough ago that I feel sometimes like I’ve heard it all, and then some. Definitely heard some weird stuff. It’s always amazing to me, the things that people will just literally just say to your face when they find out that you’re living with a digestive disease or that you’re living with IBD. And sometimes people have heard of Crohn’s disease so they will sort of know what that is. It’s harder with ulcerative colitis. There’s a focus on that word, colitis, but colitis is a symptom. It can be caused by a lot of different things. And so there gets to be confusion there as to what ulcerative colitis actually is. So there’s a huge amount of misconceptions. You know, one of the biggest ones that bothers people with IBD a lot is the idea that IBD is only about going to the bathroom, or only about having diarrhea.

And like, I mean, that’s certainly a part of it. I mean, you know, it was for me, and it’s a huge problem for quality of life. And because if you have disease in your rectum, you know, you might be running to a toilet and you also have accidents. One of the things I like to ask people on my podcast is tell me an embarrassing story of the time you pooped yourself, you know? Because everybody has one. But really, IBD affects the whole person. So it’s not just about digestion and that’s what we want people to understand because it’s also about your body image. It’s about your energy level. It’s about your finances, it’s about mental health. And then if you have these extra-intestinal manifestations or you have complications, those can really affect you really profoundly as well. And sometimes for some people, it’s not about the diarrhea and going to the bathroom, it’s about the complications that they have in other parts of their body or the expense of staying on a treatment option that’s working well for them. So that’s one of the things that’s not just about the bathroom.

And another one I think that really affects the community pretty profoundly is the misconception about IBS and IBD, and that they might be like two sides of the same coin when they’re not, they’re separate. You can have both of them, and they’re both, they can be devastating to your quality of life. But IBD causes that inflammation. And that’s what leads to some of, you know, complications, and surgeries, and things like that, especially if the IBD goes untreated. So that’s something…And then there’s the idea that people sometimes make up a disease that’s a combination of irritable bowel syndrome and inflammatory bowel disease. They kind of just like pick three words from each of those and put it together and come up, make up their own disease. Like we see that happening all the time. So there’s definitely a big misconception there.

And then another one that we hear a lot is having to do with that people may have caused their own IBD because they’re not managing their stress well. Or that, you know, somehow they made themselves sick, which is kind of bonkers. I mean, it was something that I heard a lot when I was first diagnosed. And I used to just think to myself, “My gosh, like, I’m a teenager. How could I possibly have done this to myself? I don’t even understand.” But it was something that actually used to be taught. It used to be thought to be true by the medical community. It’s just not going away. Like we know it’s not true. We know that stress doesn’t cause IBD but, gosh darn it, it just won’t go away. So that’s something that we’re fighting with a lot in the IBD community.

And one of the other big ones that I think bothers people a lot is also that IBD may have been caused by a poor diet. We hear that a lot. And it gets really tricky. We’re now understanding more about how diet and nutrition affect IBD. There’s been some recent study on it. There’s still not enough, of course, now probably I’ll go to my grave saying that. But we’re learning more and there is clearly a link and we need to understand it, but people don’t cause their IBD because they have a poor diet. I mean, that’s just not true. I also think if it were true, we’d see a lot more IBD than we do because, you know, who eats a perfect diet? Like nobody does that.

But on the other side of the coin, there’s plenty of people in the IBD community who their whole lives, they’ve been focused on diet and nutrition. I mean, athletes, they could have been following a vegetarian or a vegan diet their whole lives. And then they also developed IBD. So, it’s just not about that. There’s something more going on here that we don’t yet understand. So these are just a few of the misconceptions. I mean, these are just the ones that I see that are more prominent. Everyone will have their individual experience with the things that people come at them and ask them about in regards to their IBD. I try to use it as an opportunity to educate, even though sometimes it can frustrating.

But when people have these misconceptions that you can bring them some better information and disabuse them of some of these notions so that we can start to turn the tide on this and how people think about IBD because it is associated with an awful lot of stigma. And we want people to understand what these diseases are and what they aren’t. Because that’s how we improve our own quality of life and how we can be more open about what we’re living with with the people that are close to us and also get the support that we need. So those are just a few, there’s tons more, but those are some of the biggest ones

Ariel: That was perfect. You touched on, I think, all of the ones that I would’ve hoped you would’ve touched on. It’s so funny that you mentioned that because I remember I used to work in medicine. I remember like some of the older providers talking about how very intense bouts of stress can bring on ulcerative colitis. So I remember like, it’s just you’re saying these things and it’s making me think of all these things and I just am like, “Oh yeah, I remember people talking about that.” Or even I love that you have on your podcast, your most embarrassing moment because I do feel like with any colon health or any kind of GI-related topic, there is a lot of stigma and people feel really embarrassed. And I’m like, if we can just wipe all of that away, that is an excellent start to finally moving into the direction of understanding and educating that we need to get to the places where we can hopefully figure out some of this stuff.

Amber: Yeah. And asking people about some of their embarrassing moments has been really illuminating. First off, who doesn’t wanna hear a funny story on a podcast, right? But also, like I said, almost everyone in the IBD community has a time where they didn’t make it to the toilet or something similar happened or something funny that happened while they were receiving treatment. You know, like maybe they had a funny thing happen when they were having a colonoscopy, something like that, or prepping for a colonoscopy. So not only does it take the power back for the person that’s telling the story, but anyone who’s experienced something similar will also feel as though they are empowered because they’re not the only person that this has ever happened to. It’s happened to other people too. So that’s one of the reasons why I like talking about embarrassing stories.

Ariel: Yeah. It’s all about making you feel like you’re not alone. We’re all in this together.

Amber: We’re all in it together.

Amber: Exactly. We are just about out of time. So I wanted to ask you if you had any final thoughts, any things that you wanted to share with our audience. And then please make sure that you tell the people where they can find you.

Amber: Yeah, absolutely. My goal is helping people with IBD live a better life. That’s always, that’s my north star. That’s what I wake up thinking about every day. So thank you so much for this opportunity to bring me and bring my advocacy and my activism to your audience. And to let you know where I can be found. I’m found all over social media as About IBD. My podcast is of the same name. It’s available everywhere that you can get a podcast, but it’s also available at my website, which is simply aboutibd.com, where I also provide transcriptions for folks that don’t wanna listen but just wanna read. And for IBDMoms, you can find IBDMoms all over social media as IBDMoms, and at our website at ibdmoms.org.

Ariel: Amber, thank you so much for being here. I have learned so much. And I’m so excited for our audience to listen to this episode, especially all those moms out there.

Amber: Thank you. It is my extreme pleasure to meet you and talk with you.

Ariel: Everybody, as I always say at the end of the podcast, we all have colons. So make sure you ask your questions, do your research, and have a conversation like we were just saying, we’re all in this together. Thanks, everybody. See you next time.