About IBD Episode 66 - I Just Needed Something to Change

About IBD Podcast Episode 66 – I Just Needed Something to Change

Ostomy surgery can improve quality of life for people with IBD but it is still not discussed often enough, or early enough, in the disease process. This leaves patients to cope with the surgery and the acceptance of an ostomy during a time when they are already critically ill. For Austin Powers, who goes by The Ostomy Guy, he exhausted all his possibilities to treat complications from Crohn’s disease before having surgery to place an ostomy. It was several more years before a quick encounter with another ostomate set him on the journey of acceptance. Today, Austin runs a podcast and has written a book about his experiences, The Ostomy Guy Story: Memoirs of a Bagman, which is available on Amazon. Listen all the way to end to hear one of the many letters Austin receives from his readers, who are inspired by his story.


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Find The Ostomy Guy on Facebook, Instagram, Twitter, and on his site, theostomyguy.com. You can also buy his book, The Ostomy Guy Story: Memoirs of a Bagman, on Amazon.

Find Amber J Tresca at AboutIBD.comVerywellFacebookTwitterPinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. “IBD Dance Party” ©Cooney Studio.

Episode Transcript

[Music: IBD Dance Party]

AMBER:
I’m Amber Tresca and this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.

This is the second episode of my series talking to people who live with a permanent ostomy and exploring why they share their stories publicly and what it means to the ostomy community. I connected with Austin Powers on Twitter where he goes by Ostomy Guy. He has a podcast of the same name where he interviews people who live with an ostomy or who have other serious medical conditions. His path to becoming public about his ostomy started unexpectedly when he sat down to write about his disease journey. What started as a vague idea about writing a blog turned into a book, The Ostomy Guy Story: Memoirs of a Bagman, which is available now on Amazon. Listen all the way to end to hear one of the many letters Austin receives from his readers, who are inspired by his story.

AMBER:
The first thing that I want to ask you, Austin, is what led to your ostomy surgery?

AUSTIN:
So I’ve had Crohn’s and colitis since I was a little boy. My, the type of Crohn’s that I’ve had is fistulizing Crohn’s colitis. And my fistulas have pretty much, aside from three or four of them, have been rectal. And it got to a point in my early 20s, where I had I mean, I was having cysts and abscesses and all kinds of things back there that was just, it was it was terrible was all kinds of scar tissue. I was having surgeries pretty regularly.

But then I had an abscess that, that just a fistula that couldn’t break the skin and turned around and started burrowing inward and filled up into an abscess and over a short period of time. And that ended up blowing a hole in my colon. And I tried for a year. I mean, they told me right away that I could get an ostomy. And it would probably really help the process. And I was like, absolutely not. And so I went a whole year. I had nine surgeries that year trying to close this wound up on my backside. It was huge. And it just wouldn’t close. It just wouldn’t close. 

It was, It was surgery after surgery, recovery after recovery. And it got to the point where I had lost so much weight, and I was just getting more and more sick. And the pain was terrible. And so, last resort was all right, none of these other surgeries are working. We’ve tried everything to try and get this wound to close and it won’t. The only way to do it is to bypass all of that and do a colostomy. And I mean I was, I was just broken already from the sickness physically, at that point that I didn’t care, I just, I needed something to change. I knew I was, I was not doing good. I was incredibly weak. This is the longest period of time I had been so sick like out of work home. Sick. And that’s all of that led to my ostomy surgery in back in 2006, January 3, 2006.

AMBER:
They spoke to you about having an ostomy in regards to dealing with this abscess. Was that the first time that you’d ever heard of an ostomy or had you been approached previously about having ostomy surgery?

AUSTIN:
I had only heard about ostomies from hip hop music, believe it or not. From a couple of different songs. And I had only heard the mention but I listened to lyrics and I follow and read the words and I like content. And so I would look up what things meant that I didn’t know. And those were always a result of injury, gunshot wounds or something like that. So I looked up what it was. And so I knew what it was. And then, but I never really thought about it, except in that sense. And then when they had brought it up to me, it was like, absolutely not. And I only thought of like, paralyzed people who had somebody who had to change their bag for them. And that’s all I could think of when I thought of an ostomy. And so I was 1,000% against it.

AMBER:
So you didn’t know anyone in your real life…

AUSTIN:
No.

AMBER:
That had an ostomy you only knew it from pop culture. Essentially.

AUSTIN:
Yeah. That’s exactly right. I hadn’t, I didn’t know anybody. And it was even after I had had my surgery. I didn’t meet another person with an ostomy for two years. And then after that, I mean it was maybe 8, 10 years before I met the next person with one.

AMBER:
When you say you met a person, you mean in person? Were you online at all interacting with other people?

AUSTIN:
Never. I was never online talking to anybody about any of this. I had. So my parents knew a guy that had an ostomy and they had just told me about him. And this is you know, after a year, so year and a half after my surgery, and they tell me who he was because he’d be working out up at the gym as well the same gym that I went to. And I was always ashamed, never went, wanted to go over and say anything to them. 

And I never did until one day, he just my mom had said something to him, Amber, but he just came over to me. And and he stopped me from whatever I was doing. And I’m a pretty social person and bounce around places. And he stopped me from whatever I was doing looked me square in the eyes and said, “Austin, you’re more than your ostomy.” That was it. And he walked off. And I just said, “Thanks, Bill.” And that was the only time I’d ever had any interaction with another person with an ostomy until I want to say 6, 7, 8 years later.

AMBER:
So you don’t have any real contact or support or anyone in your life that is like you. But then what leads you to start sharing about your ostomy? And what did that look like- your first public foray into sharing.

AUSTIN:
In a small way it started with little conversations, kind of like, a little bit like what you and I are doing. But when you’re somebody who’s sick, you’ve been diagnosed with something serious, um, people in your life and I’m a I’m a family guy, we we have a very familial community here in Wichita. It’s a big small town. In regards to how many people started just knocking on the door, saying I need to introduce you to so and so. Or you need to talk to this person who was just diagnosed with this or I have a friend who just got diagnosed with colitis. Or my daughter is really struggling with this, this, this or this because they’re hearing that I’m sick. And so whether it’s at my parents house, or then when I was older and single, it would be in my own family room. And now like in my house, now it’s constant conversations with other people. And in a little way, I would share my story, one on one, with people like that. And that was it.

Like I used to say early on, right, right when I got my ostomy surgery, like, I’m not gonna be the guy that brings ostomy bags in-style. It’s just not gonna be me. And I’m not gonna try and make people like and be okay with me not having a shirt on because, honestly, Amber, I didn’t accept it. I have four children, and poop is gross, period. It’s just gross. And so I just, I accepted it really early on that I wasn’t going to be trying to talk about it all the time. It was gonna be my thing that I dealt with. 

And it wasn’t until literally this time. So this this Wednesday is Ash Wednesday, and this time last year, I started writing. I gave up streaming and watching TV for lent. That was one of the normal day to day things that I was going to just get rid of. Ash Wednesday night, I just sat down, grabbed my computer, and I started writing what I thought was gonna be a blog. I just told my wife, I was like, I’m just gonna start writing. And we’ll see how this goes, I might write a first blog post, see how this kind of goes. And so I started writing and come, Good Friday, I had been reached out to by a number of publications. I had sent a number of snippets of this places just to get people’s thoughts to see if I should keep going. 

So long story short, that was the first time I had ever like put pen to paper, wanted to tell my story. And the reason I even did that was because I was like, You know what? So many people are dealing with these problems and nobody is talking about it. And the common thing that I was seeing with all the people with IBD, and stomach problems and autoimmune disorders, was depression and anxiety. And this was the common thread between all of them. And the most liberating part for me, has always been sharing my story and listening to other people’s. 

And my brother’s always said, he’s a recovering alcoholic. And he’s he told me when I was a little boy, he’s 14 years older than I am. And he’d tell me, you know at AA, everybody puts their problems out on the table, and you look around, and you see everyone else’s problems, and you’re want all yours back. And in a beautiful way, it makes you very thankful for the problems and the life that you have. You begin to learn to carry your suffering a whole lot better when you tell your story. And the combination of that thinking over a number of years and just the right circumstances of me kind of putting pen to paper and start Right is what began this process of me kind of speaking out and talking a little bit more about it.

AMBER:
I agree with you. It’s a very salient point. It sounds like you have a very good support structure around you. Was everyone on board with you being a little bit more public about your ostomy surgery?

AUSTIN:
You know, nobody really, nobody really had much of an opinion or said anything about not liking it. I’m a pretty private person. And that’s very hard when I’m doing a podcast and I start doing this kind of stuff. But on the other hand, the problem that I have dealt with for so many years, was that I needed to not feel so ashamed for something I was dealing with. And the only way to not feel that shame was to speak about it. And I I’d bet you — I haven’t asked for them. But I’d bet your money that if you asked my family. if what they thought of me doing all of this? They would all probably say he was made to do this is what he’s doing is exactly who we’ve always known. And it in a lot of ways is a passion that I had. I didn’t know that I had. 

Yeah, my support system is very, very strong. And I have a huge family. And we all live pretty close together and hang out pretty regular. There’s always, it’s not always sunshine Rainbows, trust me. But there’s a difference between liking your family members and loving your family members. And we’ve been through thick and thin together. And so we’re just we’re all really close, no matter. No matter what kind of BS we’re kind of dealing with on a day-to-day basis.

AMBER:
That’s great. I love that there are so many people behind you and helping you with this process and helping you on your journey.

AUSTIN:
I would have quit. I know so many people who don’t like when I talk to people, they’re the one part that I have a really hard time with, with others. And I always ask them to kind of understand where I’m coming from, is that I thrive having people supporting me. And when I meet somebody who doesn’t have a support system, I take my family, I can take my family and my friends and those people in my life for granted so much that I, I’ll be able to see it when someone else is dealing with it. 

But I think it’s such an easy solution. You know, you just got to go. Like there’s people in your life that love you. You just go open up to them, and then they’ll go, oh, my goodness, I didn’t know you were dealing with that. And then maybe what you’re dealing with actually affects them. And I, I can kind of push always in that direction. But I also really struggle with people who don’t, who won’t go and talk to somebody. Because that’s the, to me, that’s just been the solution to so many of my problems is talking about it with people that actually care for me and being open to their opinion whether I liked it or not.

AMBER:
Have you thought about interviewing any of your family members for, The Ostomy Guy Show?

AUSTIN:
Yes, I have. And I just haven’t. And I’ve had a couple of them that have offered and think it would be awesome. And I’ve had a number of like spouses and parents of people, I’ve done podcasts With that said that they, they’d love to hear my mom’s story or my wife’s side. And so I’ve thought of having both of them on because they both been my caretakers through it all. But yeah, I’ve thought about it. It just hasn’t happened.

AMBER: 
I’ve had my husband a couple of times and my kids and it’s very eye opening, but at the same time, it’s very challenging. And also to ask your family members to relive some of the things that they went through. Because I personally think being a caregiver is more difficult than being the patient.

AUSTIN:
Yes.

AMBER:
So asking them to relive it, you know, can be a big, can be a big ask.

[MUSIC: Emotional Piano]

AMBER:
So you were pretty private about your ostomy for a while until you just decided to sort of go all out and write a book and have your own show?

AUSTIN:
Yeah.

AMBER:
Did you face any stigma in your everyday life in regards to your ostomy?

AUSTIN:
So I hid it so much from everybody. They might know that I was sick, but they wouldn’t know how sick I was. And I wouldn’t I really wouldn’t tell anybody about it. But at the same time, Amber, I’m a pretty confident person. I have always been that way. I mean, I’d run around with my shirt off from the end of March till About the end of August. I mean that I was that guy. I love going to the gym, I love working out. And I love going to the pool. I love playing frisbee doing things outside. 

Summer used to be my favorite season until my ostomy. And then I hated it. Because I might show up and go to a pool. But what you couldn’t see was I hated my life. I hated having to be there and dealing with it. I hated knowing people could would look at me. That was, that became a very negative thing because I was actually just really ashamed. I never really had anybody even notice, because I didn’t go anywhere to where someone could notice. I built a world that allowed me to have complete control and let nobody in unless I wanted them in. And even those people that were in there, I only let them so close. 

When I went to Mexico for a buddy’s bachelor party, we rented a beach house and the acreage in front of it and behind it, so that we had the beach and everything to ourselves and we were just out there playing frisbee hanging out. I mean, I spent the whole summer at a buddy of mines parents pool, I didn’t go to public pools very much. And we’d hang out there and I was pretty confident and tan and look good and working out and all this stuff. And we went to Mexico. 

And the very first day we’re sitting there playing frisbee, and I hear there’s a group of girls that are hanging out and swimming and doing their thing. And one of them just starts hollering at me calling me ostomy bag. “Hey ostomy bag! Hey, hey ostomy bag!” And my buddies — I’ve never had to stand up for myself hardly ever. Like go back to my support system and being the seventh of eight kids. My friends just jumped on that and shut her up. 

But it was the fact that it happened that hurt me, and it hurt me bad. And three days later, I mean, I didn’t go back out onto the beach the rest of the time we were there with my shirt off. I didn’t go get in the water. I walked everywhere on the beach, my buddies, they go and swim and get on one of those banana boats that’s being pulled and go down to a bar that was down the beach a bit and I just walk. 

And it was three days into that trip that that same girl came and apologized to me for what she had said and she felt really bad and she had a sibling that was really sick with the same problems I did. But that was the only time I’d ever had anybody say anything to me and it turned around within a three day period of time, but I was so insecure amber this I had way more to do with my ego and my pride and vanity before this thing happened, then the actual ostomy doing that.

AMBER:
Why do you think she came and apologized? I’m kind of curious if you have any thoughts about that.

AUSTIN:
That group of girls started hanging out with the group of dudes that was in with me. And me and the groom to be we’re just, it worked out great because the girls hung out with our buddies who are single and I had a girl back home, and the groom to be and I hung out the whole time. Well, her friends, like I said, My buddies were standing up for me. And in talking with my buddies, they realized that they were they their feelings had been hurt. They told them how much it hurt me, because they could tell how I was acting, which I think prompted those girlfriends to go to this gal, which then prompted her to say something to me. I’m pretty sure that’s it, it had to have been a conversation that took place because nothing really happened to make that happen.

AMBER:
Do you think that made any difference for you in regards to how you were then perceiving yourself because it kind of kind of threw you for a loop?

AUSTIN:
It confirmed what I already thought about myself, like I had my I already thought all of this was gross. And I knew people when they saw are found out, they would think it was gross. And that’s basically how I took that experience. It was only confirmation of what I had thought in my own head, you know, it’s like, can’t see the forest through the trees. I’m sitting there with all these people in my life that are so supportive, and are so caring and loving and one person breaks in and then they get she gets thrown to the curb by these people who are my guardians. And all I see is the one thing she said. How fogged my vision was at the time is unbelievable.

AMBER:
I’m sorry that that happened to you. But at the same time, it was clearly a learning experience, not just for you, but also for everyone around you I think.

AUSTIN:
It was a really good reference point for me, just going forward from there, because that kind of spiraled me back, if you will. So from then on, a couple of things kind of started happening that began me stomping in the direction of more acceptance of what I was dealing with, because that was about a year and a half after my surgery.

AMBER: 
So it was still very new.

AUSTIN: 
Yes.

AMBER:
Thank you for sharing that story with me. I’m glad I asked you that question. So, on the flipside. What kind of positive feedback have you gotten in this now that you’re all in? You’ve written a book, you’re doing your show. What are people telling you about this? What kind of impact are you having on their lives?

AUSTIN: 
I’m getting, there’s I get a number of responses. I get letters and emails and people who, like at my local community who have come up to me, but it’s it’s always the letters and emails from people you don’t know or people you weren’t expecting when. You know, family members will send their friends a copy of my book, or they’ll send their family members a copy of that are dealing with this or the spouse of someone who’s dealing with it. 

And the reason I wrote my book to begin with, was for people who are in the middle of their suffering. I wrote it short enough and quick enough so you can get through it, you can get the point, but you can see the mental and emotional side of what we deal with and hopefully have someone who you can kind of relate to and unite with. And also at the same time I wrote it for family members to have a better idea because we don’t talk about this stuff, especially dudes, to have a better idea of what their loved ones are going through emotionally so that we can kind of maybe help the empathy process. Help them in sympathizing a little bit better with maybe how we can be be reclusive be very ashamed, very quiet about a lot of these problems because you might only know a few of what somebody is dealing with. And somebody finally hears and reads this story. And a family member is now opened up. 

I’ve, I love getting responses from people whose, who are now kind of, they feel like they understand their husband better. Or a husband understands his wife better. Or a mom kind of feels a little bit better about the way that she’s been parenting. Maybe in seeing the some of the stories I tell about my mom in in my story. And so it’s been really cool I’ve gotten it’s been so many that my favorite ones are knit have now become Older people who have had ostomies for a long time, you know, I’ve only had mine for 14 years. I’ve had Crohn’s since I was 10. So that’s 28 years, geez, I’m getting old. 

And it’s cool here and somebody who’s had their ostomy for 25, 30, 40, 50 years, and they’re reading my story, and going, this is so wonderful. This is like my life. This is exactly how I feel. My wife and I only know these emotions that have kind of gone through my head. And parents who have been dealing in learning and living with children who are suffering from this stuff. And they’ll reach out to me and go in with this almost gasp of relief, that now saying something about it, hearing somebody say something about it brought them so much joy. So that’s been really the coolest, the coolest part about all these responses is that it brings a purpose to all my insecurities because I was so insecure for so long. And to see that, I’m not an insecure person. I mean, even if you just hear me talk, it was something that was so hidden, that it was a it was very duplicitous life that I was living. And it weighed me down. But now to see that other people think, like they take on my courage, and the way my passion and the way that I just look at life in general and embody that themselves. And then they’ll say, how great you know, this is what’s changed since I’ve read your book or since I listened to the podcast with Carl Hall or Coach Potter or whoever it may be.

AMBER:
It makes your own journey seem more worthwhile.

AUSTIN:
So just a couple of days ago, I got an email, a family member had gotten him a copy of my book. And he had read it with his wife, and this guy has, uh, he’s had his ostomy for 40 years, 41 years. It says, and this is what, this is part of the email. So I also hear a lot of really personal things about people in a lot of their responses, things that they’re going through and dealing with, which is also really liberating to hear other people and their responses telling me what they’re dealing with and they now feel comfortable enough sharing it with me. But this is some of what this guy said to me. 

So he said, “I was so into your book, I couldn’t stop reading it. It was a compelling story from beginning to end. On top of what I’m dealing with my son has been battling all sort of colitis for about eight or nine years. We almost lost him. When he first got it. If it wasn’t for his doctor, we would have lost him. Luckily, he has things pretty well under control right now. So between my son’s experience, and my own, I kind of understand what you’re going through. But when you add all the other things on top of your health that you are dealing with, it makes your situation so much worse. You have to be so proud of yourself for fighting the way that you do. If there is anything I can do to help. Let me know give me a call. Here’s my number. Don’t hesitate. Anything at all. I’m here. I think there’s a lot of people out there that can benefit from this story. I want to Talk to you, again, if you can take the time, so I can share with you a couple of stories of the 40 years of dealing with having an ostomy. Thank you so much.”

[Music: IBD Dance Party]

AMBER:
Hey, super listener. Thank you to Austin Powers of Ostomy Guy for sharing his story and for being a resource to the IBD community and for men who live with an ostomy.

You can find the Ostomy Guy on Facebook, Instagram, Twitter, and on his site, theostomyguy.com. You can also buy his book, The Ostomy Guy Story: Memoirs of a Bagman, on Amazon. I will put all his information in the show notes and on the episode 65 page on my site, aboutibd.com

Did you know you can help me keep producing this show? It’s easy to do! All you need to do is subscribe in your favorite podcast app and leave a review there. If you’ve already left me a review, thank you.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Sound engineering is by Mac Cooney and theme music is from Cooney Studio

Until next time, I want you to know more about IBD.

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