Meet Gaylyn- Gutless And Glamorous

What if the decision you feared most was the one that finally set you free? We sit with Gaylyn Henderson—writer, model, and founder of Gutless and Glamorous—to trace her path from a swift, severe Crohn’s diagnosis at fourteen to an ostomy that gave her health, energy, and a voice loud enough to change minds.

Gaylynn opens up about the early years when prednisone and 6MP were the only options and hospital stays collided with high school milestones. She explains how stigma around surgery—echoed by culture and sometimes even clinicians—kept her in pain despite worsening Crohn's with fistulas. The turning point came with a loop ileostomy and near-instant relief: weight returned, pain lifted, and daily life felt possible again. That contrast fuels her mission to push back on misinformation, normalize ostomies, and help others avoid years of needless suffering.

We explore how a personal blog became a movement. Gaylyn shares the moment she hit “send,” the flood of messages from people who finally felt seen, and how modeling with Aerie made ostomy visibility mainstream. Her nonprofit, Gutless and Glamorous, builds community through modern, welcoming spaces that don’t feel like traditional support groups, connecting patients who can check in when symptoms surge and silence sets in.

Mental health takes center stage as Gaylyn unpacks the myth of “I should be able to handle this,” and we discuss why therapy and tools like EMDR can help after the crisis has passed. Chronic illness can be isolating; community is part of care. Expect candid talk about advocacy, ostomy life, body image, and the courage to redefine normal on your own terms.

If this conversation resonates, tap follow, share it with someone who needs it, and leave a review—your voice helps more people find the support they deserve.

Links: 

• Gutless and Glamorous website
• Gaylyn on Instagram
• More of Gaylyn's story in Elle magazine
• Gaylyn in The Mighty

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Chapters

• 0:00 Warm Welcome And Drinks
• 2:12 Galen’s Crohn’s Diagnosis At Fourteen
• 6:40 Early Treatments And Severe Flares
• 11:20 Community, Camp, And Finding Support
• 15:45 Surgery Avoidance And Tough Complications
• 19:20 Choosing An Ostomy And Real Relief
• 23:10 Advocacy Awakens And Social Sharing
• 27:05 Modeling With An Ostomy And Visibility
• 31:00 Building Gutless And Glamorous
• 35:00 Mental Health And The Gut–Brain Link
• 41:00 Staying Connected And Final Takeaways
• 43:10 Closing Thanks And Listener CTA

Transcript

SPEAKER_02: 0:00

Hi, I'm Elisa, and I'm Ray Land, and you're listening to Venom.

SPEAKER_01: 0:04

A podcast sharing real time about the reality. This week we talked to gutless and glamorous Galen Henderson. We talked to her about what it was like being diagnosed with Crohn's disease when she was only 14 years old and there was really no treatment options. We talked to her about how surgery was presented to her and how she wrapped her head around getting surgery when she finally was faced with that. We talked her about what it's been like to live with an ostomy and to live well and out loud and proud with her ostomy. And we talked to her about forming Gutless and Glamorous, the blog, and also the nonprofit organization and her focus on connecting with people living with inflammatory bowel disease and the importance of mental health. We had such a great conversation with Galen and we really enjoyed listening to her talk about her advocacy work and her advocacy within the community. And Robin was such a fangirl. It was cute. We hope you enjoy it. Cheers.

SPEAKER_02: 0:59

Hi, everybody. Welcome to Bowel Moments. This is Robin.

SPEAKER_01: 1:02

Hey everyone, this is Alicia, and we are absolutely delightedly overwhelmed with excitement to be speaking to Galen Henderson. Galen, Robin was just saying that you were on guest list number one for us five years ago. And so we are so excited to finally have you on the show.

SPEAKER_00: 1:17

Oh, I'm so excited to be here. Thank you so much for having me.

SPEAKER_01: 1:21

Well, we are excited for you to share your story with everyone. But first, a very unprofessional question is what are you drinking? So nothing fancy, just water. That's okay. That's been the norm lately. I think the last probably dead guests have been drinking some form of water. Sometimes it's in tea fashion, but some form of water. Gotcha. What about you, Robin? That's right. Yeah, you too.

SPEAKER_02: 1:45

This is non-alcoholic, but I decided to be fancy. I'm drinking an orange pellegrino that I added a splash of pomegranate to.

SPEAKER_01: 1:55

Fancy. I love it. Well, I made myself a margarita tonight. So I'm drinking a blueberry margarita. I don't know if that's a thing, but I had blueberries. So I was like, the only fruit I have in my house is blueberries. So I made myself a blueberry margarita tonight. Cheers. Cheers, guys. Cheers. All right, Galen. Next question for you is tell us your IVT story. What brings you into our community?

SPEAKER_00: 2:16

I was diagnosed with Crohn's disease when I was 14 years old. And it has been a roller coaster of ups and downs and fast drops and high highs and lows and low lows ever since that time. I am 41 years old now. So I have had Crohn's for more than half of my life. And yeah, so I was diagnosed when I I started having some issues going to the bathroom frequently. And I that started the summer before I went into high school. And I started losing some weight, started seeing blood, and you know, it was very scary. But within my family, within my community, we I guess tried to make, I don't want to say excuses about like what could have been causing this, but making excuses, trying to not try or being in denial for a very long time. I think when I saw blood, that's when we were like, okay, something's wrong. We really need to go to the doctor. Let's figure out what's going on. Went to my pediatrician and he immediately referred me to a pediatric gastroenterologist. My diagnosis story is unlike many that I have heard in that I was diagnosed very swiftly. And so I am thankful for that. Thankful, but also it was due to the severity of my disease. And that's why that my pediatrician said he felt like some mass in my stomach when he did the palpitations and things like that. And like I just remember being diagnosed very quickly. But of course, like what does that mean? I was diagnosed, and then my I was very underweight. My doctor was like, my pediatric was like, you know, let's go ahead and get you checked into the hospital, get your, you know, get you fed, get new nutrients in you, and things like that. It was a planned hospital stay to do all these things, but of course, it did not turn out that way. It did not go as planned. And I went in as an emergency due to having lots of severe pain, you know, going to the bathroom, seeing a lot of blood. And that, I guess, was kind of the beginning of my journey and not really knowing what was to come. I still very vividly remember thinking that, you know, still very early on, like, okay, you know, all I have to do is take medicine. I'll take my medicine, I'll do what they say, and I should be fine, right? And that's, you know, furthest from the truth for me or for most of my journey. And so, you know, it started out very severe. I honestly don't believe that I had or that I was ever in remission. Like within the first five to ten years of living with Crohn's, it was very severe. I was diagnosed at a time where biologics were first coming out, so there weren't a lot of medicines available. It was prenazone or 6MP. Those were your options. And I started a biologic, you know, as soon as it started, or as soon as I was able to, or it was on market. It worked initially, but then unfortunately it did not work anymore. And so I just, you know, it was just up and down, up and down throughout the first, you know, 10 years or so of my life with Crohn's disease. I was in and out of the hospital. This was, you know, during formative years of my life. I was, you know, a freshman in high school. Well, I was in and out of high school, in and out of the hospital, having different surgeries, having different hospital stays. It was a very difficult time. But, you know, like many in the IBD community, we get through it. And yeah, it's yeah, it's just been very trying, difficult time. I don't want to sound like so, you know, it was just the worst time. It was uh it was the worst of times, but you know, I still, despite having Crohn's disease, you know, we make the best of what we have. We make the best of our situation. And throughout high school, I was able to participate in cheerleading and dance team and things like that when I was able, when I was in school. And yeah, I was very lucky, I feel, that I was introduced to the foundation, to the Crohn's and Colitis Foundation early on in my diagnosis. I will say, my, you know, my pediatric gastro, you know, gave me all the brochures, gave me all the pamphlets. And of course, me and my family, we looked into them. Like we we didn't know what we were getting into. And I still think it's very important to stay connected to a community that can relate to what you're going through and can give you advice and can, you know, be a shoulder for you to lean on. In the beginning, it's very difficult to convey the realities of IBD and to really explain to somebody newly diagnosed what to expect, I guess. So I say that I was very lucky to be introduced to a lot of people that had Crohn's and colitis when I was a kid. I started going to Camp Oasis. It was called Camp Kaleidoscope when I started. But I'm just thinking back as I'm talking, like I still had no idea the journey that I was in for. And I think that's something that, you know, when you live with a chronic illness, like when you're first diagnosed, or yeah, you just it's very hard to convey that the the complexities, the harsh realities of living with it, and really the everyday thing. And like when they say chronic illness, like it's a chronic illness, and it it really is something that you'll be living with for the rest of your life. So yeah, I'm just kind of thinking of that as I'm talking. But like I said, I was connected very early on to community, and I think that made the world of difference for me. And so I like maybe the first 10 years of you know my journey with Crohn's disease, I, you know, in and out of the hospital, and I had severe Crohn's colitis, which I had disease primarily in my colon. And I say that to say because I don't remember this, but my mom told me and my pediatric gastro told me at one point, you know, later on in my life, that if I were to have surgery, I would have to have my colon removed, and that meant I would have to have a bag. I don't necessarily remember that early on, but that was something that I guess my parents knew, my medical care team knew. And I believe that for the first part of my Crohn's journey, we tried different medicines. I was in and out of the hospital in an effort to not have an ostomy or have that surgery. And knowing what I know now, I do feel that that was in a disservice to me, to my family, to even to my medical care team, because I feel like everybody fought so hard to not have surgery when surgery is what helped me the most. So I started developing rectal and vaginal fissulas. Like I said, my Crohn's disease was primarily in my colon, lower rectal area. My first surgery I had a sigmoid resection. After that, like I typically say all hell broke loose, excuse my French, but it really did. Like I honestly felt like after this surgery, I would feel so much better, but it was the complete opposite. And things just went downhill very fast. Rectal vaginal fistulas that would not heal. And it was coming to the point where like something had to be done. And my I started seeing a new surgeon, and he, you know, suggested that I have this surgery, but for because of all of my pediatric life with Crohn's up into early adulthood, all I've known was, you know, you don't want this surgery. You don't want to have this surgery. So we're just fighting against it. The negative stigma had been instilled in me by medical professionals, by people around me. So, you know, I was like, no, I don't want to have this surgery, but what if I do a temporary ostomy and then we can reconnect? And, you know, that was my solution to the issue. And, you know, my doctor was like, you know, that's fine. He just wanted me to feel better. He said, I do feel like, you know, right now we can do that, but eventually you're gonna have to have that done because, you know, your disease is very severe. Um, I do feel like you're gonna feel a lot better. And he was right. I had my first surgery where I had my temporary ileostomy placed, my loop iliostomy, and I felt 500% better and could not believe, like I said, that I had fought so long and been in such bad shape for so long, in an attempt solely not to have ostomy surgery. And that's when I really got my life back in every sense of the word, mentally, physically, emotionally. I started feeling better, gained weight almost instantaneously, which in my journey with Crohn's, you know, losing weight was one of my symptoms that happened very readily or happened often, but I gained like 10 pounds in a month, and that was that had never happened before. And so it was after that surgery, I actually said, Well, I'm not going to, like, I don't ever want to be have to use the restroom normally, quote unquote, again, because I felt so much better. And I really feel like that's where my advocacy started. My patient advocacy is just realizing how much better I felt, but also realizing how scared I was solely due to the stigma from, you know, societal stigma, medical stigma that came with it, from, you know, healthcare practitioners that were advising against it. And then also the finality of the surgery as well. But, you know, after feeling so much better, that's what, you know, in I was gonna say lit a fire under me, but pun not intended. But yeah, so that's where my advocacy really started. And and that is another area where has given me life tenfold. Being able to share, you know, my journey, being able to help other people going through similar situations, or just spreading general awareness to the public about it and breaking the stigma and really fighting against it. Yeah, so that's I guess my journey and kind of a nutshell.

SPEAKER_02: 13:37

That's a pretty significant experience being diagnosed that young and having surgery being such a scary thing, you know, being presented as a scary and last result. I consider you one of the OG in the IBD uh advocacy space. And did you go to Day on the Hill, IBD Day on the Hill in 2012? It's very possible. Because I'm like, I can't remember if I met you in 2012, which is the first one that I went to, or if I met you like in 2015 or 16, which is the second one I went to. I just remember meeting this just effervescent, like just an amazing person who is standing up and screaming from the rooftops, like sharing your story so openly and so sincerely and authentically. It really, I mean, I remember it. I remember meeting you. It really affected me. You said that feeling better is what made you want to advocate for others. So, how did you get into advocating?

SPEAKER_00: 14:32

Honestly, and I want to say that was when social media kind of just started, you know, back in 2012. But I started out blogging, just kind of putting it out there. I actually remember that, you know, very vividly when I pushed sin in sharing my story because I was doing it as I was participating in the Take Steps walk for the foundation. And, you know, you share your story to help encourage people to join your team and to make a donation and really just kind of get the effort behind take steps for Crohn's and colitis. And I, despite it being very evident that I was sick, you know, growing up and disappearing for moments of time, you know, losing weight, like physically changing, you know, my face, my body, I had not really talked about it. And so that had been, you know, living with it for like 20 years and hadn't really openly shared my story. Like, of course, people knew, but like it was close friends knew, you know, or knew about it, but not, you know, from me, not, you know, nothing that I shared. And I remember typing up my story and shaking and like crying and like, you know, I can't believe I'm about to do this, and then finally hitting sin. And then something just came over me, like, you know, this is it. I don't know. I I knew somehow that that it was going to change my life in a way for for the better, like in a positive way. Almost to get, you know, let the weight off of your shoulders, like, you know, this is me, this is who I am, sharing my truth. But I I I do remember that day. And honestly, every time I hit sin, still to this day, it's still very scary, you know, sharing your story because you never quite know how it's going to be taken, or or if it's going to be taken the right way and how you want it to sound, or anything like that. But hearing the feedback from the community from the very moment I pressed sinned 10 years ago, like that, and knowing that I wasn't alone, and there were so many more people out there that could relate to me, could relate to my story directly or indirectly, like that feeling was indescribable. And I knew that this is what I needed to do. Not only for myself, it's helpful for me, you know, to share, but for everybody else, honestly, because people were telling me, you know, I I I can't do that. So I I feel like I speak for those that can't share or can't speak.

SPEAKER_02: 17:08

You expanded that though, outside of just your blog. So can you talk about what made you want to do more?

SPEAKER_00: 17:15

Yeah, so really just doing the blog and getting the feedback and people telling me that they could relate and just knowing that there was a need out there. Like I knew that I had not seen anybody that was younger, that had had an ostomy, that looked like me. Like I just hadn't seen anybody talking about it. And so that's what made me be more open about it more than the blog. I shared that I had been very involved with the Crohn's and Colitis Foundation from diagnosis. So they have been an integral part of my journey since diagnosis, from volunteering to participating in different activities. Like I really have grown up with the foundation, I feel, with my local chapter and now very involved with the national chapter and regional chapters. So it's just kind of been a natural evolution, I think. Like just because I've grown up with them and being able to work with them in different capacities has been amazing. But I started, you know, my blog, and then like I said, social media was just now starting to come out or kind of get to be a thing. And I started sharing my story on those platforms on different social media platforms, and then it just kind of took a life of its own, really. And, you know, people would start reaching out to speak or to write. And writing is really, I feel like my passion, and and I'm able to convey things that I may not be able to say out loud. I I don't necessarily think that I really am able to say what I feel, or like I don't want to say I'm horrible at words, but a lot of times I do feel that way. Like I can never say what I want to say or say how I want to say it, but I'm able to write it at times, and that is just, you know, an outlet for me in so many different ways.

unknown: 19:11

All right.

SPEAKER_01: 19:12

So I want to back you up behair. So you said you were diagnosed when you were 14. That is such a pivotal age. How did you sort of integrate this disease, your diagnosis into growing up really and hitting puberty and going through all those big milestones that happen when you're a teenager?

SPEAKER_00: 19:26

Yeah, I don't think that, you know, while you're going through it or growing through it, you don't realize the impact that it has until maybe some years later for me anyway. You know, while I'm going through it, I'm just trying to get through it. I'm just trying to survive daily. But it did impact me. I shared that when I was diagnosed, there weren't a lot of medicinal options available. And prednisone was one of the only options that you had. And if you're familiar with prednisone in the IBD community, of course you are. Do you have a love hate relationship with that? That medicine, or at least I did, because it works, but it works at times, but it changes you, it can change your physical appearance. And I say that because, you know, at such a pivotal age, at a time where your body is changing, introduced a drug that also changed my physical appearance. And I remember going to school, like from not going to school for maybe a few months because I was sick, and people not recognizing me because of the effect that prednisone had on me. And that was very challenging, not realizing that I looked that much different. But it was also hurtful. You know, they did not know that, you know, they weren't doing it maliciously, but I was just unrecognizable due to the different medicines and because of the cause and effect of the disease. I'm losing weight, gaining weight, and having the moon face, losing my hair. You know, I went through a lot of physical changes that were very, very tough and that impacted me in ways that I couldn't necessarily articulate at the time because I feel like I couldn't articulate it. We couldn't articulate it, me and my family, because we didn't know that these things were going to happen. We weren't expecting these to happen with Crohn's disease, you know, but it did happen and it was very tough, you know, not being recognized by your friends. Or I feel like my friends didn't really know what to say, you know, at that age. I didn't either. And it was just kind of unspoken, a little bit like Galen's sick. Galen may be gone for a little while. She may be in the hospital. My friends would come visit. It was hard to explain because I I and we didn't necessarily know what was going on either. So it was a very difficult conversation to have. But as time went on, you know, I became more open about it for those that asked. But going through the physical changes was really tough, you know, at that age.

SPEAKER_01: 22:08

When they were talking to you about surgery as like kind of the next step for you, how did they present it to you? And is there a way they could have presented it to you that may have helped combat some of the stigma that you internalized at that point?

SPEAKER_00: 22:20

I don't think at that point, no, there was nothing that they could have said to combat the stigma. Because as I shared, like my adult pediatric gastros, other surgeons, other nurses, you know, all pretty much advised against it. So if my medical care team is advising against it, you know, it's it's very hard. It's something that I had to unlearn from being instilled in me, you know, growing up, that this is not something that you want. So I don't think at the time that it was presented to me that it could have been presented differently. The way that it, the surgeon that did the surgery presented it to me was just you're going to feel better. Like this is something that you need. And it was, you know, after I had had the rectal vaginal fishulates for quite some time. So yes, please, it was becoming clear to me that there was no way that I was going to get better. Like there's just due to the nature of the disease, you know, what has to come out, like there's no way that's going to heal if you have to go to the bathroom all the time. So it was just something that, like, cause and effect, like I kind of realized they're right. You know, it just finally kind of hit me. Like they're right. I have to have the surgery. But as far as the stigma, I don't, I think that was something at the time that I was gonna have to unlearn myself.

SPEAKER_01: 23:45

You've come a long way from that, certainly. You know, you've done a lot of things to raise awareness about living with an ostomy and living well with an ostomy and being proud of your body. How did you get there? I mean, because I think there's that that definitely was hard won based on the fact that you started with such a, you know, a different view of living with anostomy. So talk about the process that kind of got you to the point of being as open as you are about and you know, as celebratory as you are about your life with anostomy.

SPEAKER_00: 24:13

Yeah. So I mean, it it was a complete 180, like, and it continues to be. And I, and it sounds so simple, but for me, it was just the fact that I felt better, like mentally, physically, emotionally. I was no longer in pain. It was like somebody turned the lights on, and like it was a brand new me. Like I had been in pain for 10 years. Like, like I said, I had not been in remission. And then I have the surgery, and everything is different. Like I can eat, I can go outside, I can do this, I can do that. So it was just really like a change of perspective and opening of my eyes that I can't believe that they were wrong about this. And I have to do something to tell other people that might be in my situation that it's not what you think it is. And so that was really the motivating factor for me because I felt so much better. And I didn't want anybody else to suffer as I did, like for that long, just because of the stigma of what people are saying about it. Even, you know, like I said, even healthcare providers. And I know society has, you know, you see in on TV or different things, like the jokes and stuff about colostomy bags. And so I know that plays a big impact as well. But for me, because I felt so much better, my self-image and and you know, that changed, like just how I felt about myself completely changed overnight. And I just wanted to share it because I just remember how scared I was and didn't want anybody to feel like that.

SPEAKER_01: 25:56

I think that's beautiful. I really do. And because I do think so many people are concerned, and you're right, there's so many sort of negative things that get said about ostomies. And so I think it's important for people to see and hear about what it's really like to live with with an ostomy and and how it can make you feel so much better. Right. How did you get into modeling though? Because like one of the things, I mean, the reason that I sort of knew about you is because you you did a campaign with Ari where you were the first model they had that was that was showing an ostomy in their campaign. So how did you how did you get there?

SPEAKER_00: 26:28

Yeah, so that was that I mean, again, I, you know, look for ways to to create awareness, to show awareness, to be forefront, you know, in the public facing so that people can see an ostomy and maybe not only the IBD community and people that are contemplating ostomy surgery, but the general public to see that, hey, that's what an ostomy looked like. It's not what, you know, not what I've heard, not it's not nasty, really just to change the perception around it. And Aerie had an open call one day, and because I actively searched for opportunities like this, I was like, you know what, I'm gonna apply. I did not think that I would get chosen because I have an ostomy. And I remember when I got the call back. Of course, I'm always hopeful. Like I do, I do a lot of things and I always think the best. Like I always do think like things will happen, but I, you know, I was like, I'm gonna do it. They're gonna look at me and they're gonna be like, you know, what is that? But yeah, like I I remember I was at my friend's house and we were baking cookies, and I told her about it. She was like, Yeah. She was like, Oh yeah, let's let's make a video. And we made a video, just me dancing around, you know, with my ostomy showing, and I submitted it, and I'll never forget the day I got the email. It was my little brother's college graduation day, and I remember getting the email, and I was just like, oh my gosh, like, is this real? And I didn't say anything because again, it was my little brother's graduation day, and so I was just like, I did tell my sister because she was in the car, and I was like, you know, Ari just like they are accepting my video. And she was ecstatic and she told everybody, but yeah, and I still a little part of me was like I was fearful that I was gonna get sick and wasn't gonna be able to do it. But I remember that, you know, the day I went up there, you know, the first time I went up there, and it really it was a joyful experience in that I did not feel like different than, or I don't know, they were very welcoming and understanding and just, you know, didn't make me feel any type of way. They just really were had open arms. And you know, since that time I have been, you know, working with them, done it a few times, so or you know, model with them. And yeah, so that was just, I don't know, pretty cool. Yeah.

SPEAKER_01: 29:16

That is. That's I I didn't realize it was an open call, that's so cool. Now, the bigger question though is did you get to pick what you were going to wear? Or did they have like wardrobe for you? And they're like, these are the things we're gonna have you.

SPEAKER_00: 29:29

Yeah, they had wardrobe, and I did not get to pick. So they had what we were gonna wear, which is fine with me. Yeah, it was pretty cool.

SPEAKER_01: 29:39

That sounds like it. So you said you started blogging. Is that where Gutless and Glamorous started, or how did that get started?

SPEAKER_00: 29:46

Yes, that started with blogging. Tell us a little bit more about that. I started blogging in 2012, a little bit after my first or my first ostomy surgery, and just started sharing my experiences, the good, the bad. Like I shared, writing was a way that I could share what was going on. Because I wasn't always very open, not even with family. Like, you know, when you live with a chronic illness, sometimes you feel that, you know, because so often, like on a day-to-day basis, you may feel bad, you know, like on a day-to-day basis. And so for me, writing helps me to kind of say how I'm feeling, how it affects me, and also kind of tell those around me, like what's kind of going on. And that's how it started. But, you know, once I started blogging and just the messages started pouring in and people sharing, like, that's my story, that's what happened to me. Like, I can't believe this happened to you too. I, you know, started the nonprofit because I was like, you know what, there has to be more, like, there are more people out there like like me. And we need to get together. We need to have a a means of a way to get together or just support each other and you know, and not be the traditional like support groups that I grew up with. Um I remember being, you know, I was very young when I was diagnosed, and I just remember being in these support groups and being the youngest person in the room. And, you know, although everybody around me had, you know, similar conditions, it still felt isolating because I was the youngest. And, you know, it still felt isolating in a way. That makes sense. So I started, you know, it started out as a blog, but then as a nonprofit now. And, you know, I just I made getting together fun. And we would do different events that with the overall goal of being supportive with each other and you know, getting together and talking and you know, sharing our experiences and just, you know, being there for one another. And I remember very early on through Gutless and Glamorous with the I Am Gutless and Glamorous awareness campaign, and that really took off and went globally, really. This was, you know, a few years ago, but it just kind of showed that you're not alone, even though it can feel so isolating at times, and oftentimes you do feel alone because because of the nature of these diseases, because of the nature of ostomy surgery, it's not something that that most people would shout from the rooftop or, you know, even sharing with family, you oftentimes feel like a burden. So I think it's just it's important to have these communities that you can relate to. You know, you may not go through the the same exact things, but just having somebody there to, you know, hold your hand, a shoulder to cry on, shoulder to lean on is is imperative, I feel. It's been very helpful for me as well. And, you know, just want to be that for other people as well.

SPEAKER_01: 32:57

That's a nice segue into that lately. A lot of what you've been focusing on and talking about is more on the mental health side of the world and and really trying to help people, like you said, sort of understand the disease in the community. And so when did you get started with this? And also tell us more about kind of your hope for what you want to do as you kind of raise awareness.

SPEAKER_00: 33:16

Yeah, so for the last few years, my I myself have been struggling with my mental health. And I am starting to understand the complexities and intricacies of IBD and mental health and how they are interconnected, interrelated, intertwined with each other. And I just want those living with IBD, those connected to IBD, to understand this and to know that it's okay to have a bad day, it's okay not to be okay, and just to really find that support. I think for me, I struggled or I struggle with mental health because I feel that because of everything that I have gone through, I should be able to, you know, get through this. Like I should be able to withstand whatever comes at me. And that honestly was my mindset for the longest time, and that hindered me a great deal as it relates to feeling and living with my mental health or my struggles with mental health, thinking that I could just push through it, or thinking that I could think positively, or think, you know, think my way through it, and not understanding how mental health works. And it's still a work in progress for me. I'm not a psychologist, I'm not a mental health therapist, but I am learning more about it. And, you know, I don't know if anybody, you know, it it could just be an an ice, you know, it just might be me that thinks that because of what I've gone through, I don't, you know, I should be able to get through these things. But I just feel like right now, especially with everything that's going on in the world, in our world, and like I just feel that as a community, we need to really rally together and you know be there for each other and I don't know, lift lift each other up and understand or don't think that even though, you know, we may have IBD, we have been through the unimaginable, it does not mean that we don't need a little bit more help dealing with anything else. And I think for me, that's something that I'm working through currently, and I just want to be able to share more about that. And I've started talking more about it, and and again, I'm getting messages and people are sharing, you know, I deal with that. And, you know, with IBD, it's so complex, like just in itself. IBD is very complex, it affects like every organ, every system in your body. And, you know, more and more research is being done in just how the gut and brain access and the gut and mind are interrelated and how much it can impact day-to-day activities. And so I just feel that it's imperative as a patient advocate to spread awareness and to spread knowledge about how these two are so closely knit together. And for every IBD patient to just be aware of it, you know, it might not impact you at any time, but you know, you're not alone and maybe feeling some type of way. And it doesn't mean that if you start to have, I know for me, I was like, you know, something's not feeling right, but not necessarily, like, I didn't feel like something in my life was necessarily going wrong or something like that. And I thought that's what had to happen with mental health, you know. And I'm learning that's not the case. And I don't know if I'm talking in code, but like I just, there's just so much that I am learning. And as I learn, as always, I just feel the need and the want to share with the community so that we're all aware and so that we all can support each other and just kind of, you know, have each other's back.

SPEAKER_02: 37:19

We talk about mental health a lot on this show. So anybody who's listening, if they've listened to a handful of episodes, they have heard somebody talk about mental health. We've even interviewed some GI psychologists and licensed professional counselors and clinical social workers. So yeah. Everybody listening, you're you aren't talking code to those people. Yeah. I've talked about me going to therapy, what led me to go to therapy after surgery. I've talked about having doing EMDR. We talk about mental health a lot on the show. I think I told Alicia and Stacy not too long ago, I think it's time to get in therapy again. I thought I thought the therapist fixed me and I could just move on with my life. I went to for a certain amount of time and they therapized me and then they gave me EMDR and I'm fixed, right? No. Right. Wrong. I was wrong.

SPEAKER_01: 38:11

But Galen, I think you bring up really you bring up a really good point that sometimes people think, oh, wait, it must be that I have to be like in some sort of traumatic experience in order to be suffering with mental health issues. And that's not usually the case. Usually when you're in some sort of trauma, your brain is like, we got to get through this, we're just gonna get through this. And then it's afterwards when you're maybe in a more stable place that you you can kind of relax and your brain kind of goes, holy crap, what was that? You know, and so I do think that's that's an important thing for people to understand that just because you're fine now doesn't mean that you did something didn't happen that you're having to process. And just because you're used to having to muscle through something, it doesn't mean it's what you should be doing, and it doesn't mean that you have to be doing it. And I think that's such an important point that you brought up. So thank you for that. I really appreciate that because it's it's hard to talk about mental health. And I do think there's so much we're learning about, like you said, the gut brain access and how IBD may be affecting, you know, the serotonin dopamine in your body in general, but just also dealing with a chronic illness is really hard. And lots of crappy things happen that you have to process. So yeah, there's so much so much at stake there.

SPEAKER_02: 39:18

Absolutely. I was about to tell you to shut your filthy mouth when you said you don't have to push through. Yes, you do, Alicia.

SPEAKER_01: 39:26

I might be directing this at Robin. Oh, I'm joking, Robin. I wasn't directing it at you. But if you feel triggered, you might want to step back and take a look.

SPEAKER_02: 39:34

Yeah, oh yeah. Thank you for smiling at me. Okay. I feel like I haven't been talking that much because I've just been sitting here quietly fangirling this whole time. And it is kind of embarrassing. But I'm gonna say it anyway, because when you said that you started the blog in 2012, I was like, oh, okay, that's where 2012 came from. Because I found the foundation in 2011 and did my first team challenge. Marathon, and that's when I started sharing my story too. Like I'd been diagnosed for 10 years, hadn't shared my story, but because I found the foundation and met other people, I started sharing my story too. And that's when I found Jackie Zimmerman with Blood, Sweat, and Tears, and Sarah with hers and yours. So that's where 2012 came from. The brain is amazing, the things that it remembers because there's so much that it doesn't. And I blame anesthesia.

SPEAKER_00: 40:26

Oh yeah. Oh, that's a shame. Like not remembering much of what has happened. Yeah, and you probably saw like when I'm talking, I'm like, wait a minute. No, that actually didn't happen. Make it up stuff. Yeah, no, I don't remember halfway. I love it. Making up stuff.

SPEAKER_02: 40:44

I do I'm gonna ask you our last question, but first I would just want to tell you how much we thank you for going so far back and really diving into the beginning of your story because it has been about 26 years because I think we were diagnosed around the same time. Yeah, and there weren't any medications. Like Remicaid was just on the cusp at that time. I was given ASECol, so you know, so those lovely times, and we've been dealing with this for a long time. And I don't, I don't know how often now you go back to the very beginning, and we appreciate you taking us all the way back. But unfortunately, it's time for me to stop fangirling and ask you the last question. What is the one thing that you want the IBD community to know?

SPEAKER_00: 41:31

That as a community, we are stronger together, and you're not alone as you may think you are. I know there are days that for myself that it feels like nobody can relate, nobody knows what I'm going through, nobody will ever understand. But there are people that can and do and will. So find that community, connect with that community, no matter how hard it is, and stay locked in. It's the only way.

SPEAKER_02: 42:00

It is the only way. I think this disease makes you want to pull back. And then when you get reconnected, you're like, oh wait, this is what it's like to have these other people who get it on a cellular level. And then when you don't feel well, you want to pull back again. I love that. Stay connected, everybody. Stay locked in.

SPEAKER_01: 42:19

I think it makes you pull back. I mean, that's the problem with it is that it's so isolating when you are symptomatic, you're and you're in so much pain, it's hard to reach out. I think that's why it's important to have a community of people who understand and that can send you the text messages like, haven't heard from you for a while, just wanted to let you know I'm thinking about you, you know, or just to and you can say, I'm just it's been really tough. And they get it. You don't have to explain anymore. You just say, you know, that's it. So I think it's super important to surround yourself with those people that when you do need it, that can they can kind of push themselves into your backwards, if that makes sense. Yeah. Galen, it was so, so lovely to get to know you and hear more of your story. Because, like I said, I've heard I've I've gotten teeny bits and pieces, but I'm not the fangirl that Robin is. And so it's nice to become one now, and so and to hear more about your story. So thank you so much for coming on to share your story with us and share so much of your life with us. We really, really appreciate it. Thank you, everybody else, for listening and cheers.

SPEAKER_00: 43:13

Cheers. Hi, this is Galen. And if you enjoyed this episode, please rate, review, subscribe, and share with a friend.