Ostomy surgery is a life-saving procedure that can improve quality of life, but that doesn’t mean it is always easy to accept. Stephanie Hughes founded The Stolen Colon after having surgery to place an ileostomy to treat her Crohn’s disease. She’s an ostomate, but she’s also a writer, a woman, a wife, a mother, and a resource for people in the IBD and the ostomy community. She shares her journey through Crohn’s disease and acceptance of her ostomy with me, including what her kids think of her stoma, how she manages issues around privacy, and what happened when a person who didn’t know she had an ileostomy told her that ostomies were smelly. Listen all the way to the end to hear how Stephanie’s advocacy in the ostomy community touched one family and gave them hope.
Information for topics discussed in this episode includes protectomy surgery, colectomy surgery, ileostomy surgery, changing an ostomy appliance, Enterostomal Therapy (ET) nurses, ostomy tips, and what’s normal with a stoma.
Find Stephanie Hughes on Facebook, Instagram, YouTube, Twitter, and on her blog, The Stolen Colon.
Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, 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.
Welcome to the first of my series of episodes with people who live with a permanent ostomy as a result of IBD. Most of the ostomates I’ve interviewed over the years didn’t know much about ostomies before their surgery so I first want to give a brief overview. An ostomy is when an opening is created in the abdomen for waste to leave the body. In the setting of IBD, this means that a piece of the intestine is brought through the abdomen. Stool leaves the body through this opening, which is called a stoma. An appliance, which some people call a bag or a pouch, is worn on the abdomen over the stoma to collect the stool. The ostomy appliance is then emptied out into the toilet whenever it gets full.
Ostomy surgery is a life-saving procedure and you won’t know someone has an ostomy unless they tell you. There are different types of ostomies and various reasons for having one other than to treat IBD. I will put links in the show notes and on the episode 65 page on my web site, aboutIBD.com.
My guest on this episode is Stephanie Hughes, founder of The Stolen Colon. Stephanie was diagnosed with Crohn’s disease when she was a teenager and lives with a permanent ileostomy today. I sat with Stephanie at Crohn’s and Colitis Congress in Austin, Texas to speak with her about her life with an ostomy, why she decided to start her blog, and the stigma she’s experienced. Listen all the way to the end to hear how her advocacy in the ostomy community touched one family and gave them hope.
AMBER:
Hi, Stephanie. Thanks for talking with me today about ostomies. The first thing I want to know is what led to your ostomy surgery.
STEPHANIE HUGHES:
I was originally diagnosed with Crohn’s disease when I was 13. I was very sick at the time. I spent a month in the hospital in eighth grade. But thankfully after that was able to get into somewhat of a rhythm of remission and flares for a number of years at least to a manageable state. 2011 was really when things kind of started picking back up. And I had already blown through a couple of the major medications out there that were no longer working for me. And, and so my doctor was like, okay, we kind of got one last try on this new medication that had just come out to see if it would work. And but this new medication that have come out was one that had a lot of risks associated with it. So we kind of gave ourselves a short window for, for giving it a try.
So I think I was on that medication for three months and had a colonoscopy at the end of it. And at the end of it, he just looked at me was like, it looks worse than ever, and I really have nothing left that I can offer you. I was still at the point that I I was very much opposed to having surgery. When I first went to this doctor a few years before that the very first time I met him, I told him, I will try any medication that you want me to try. But surgery is off the table. And that was my stance the whole time. Again, anytime it was brought up, I’m like, I’m not interested. What other options do we have? And so at that point, when he was kind of like, I don’t have anything left to offer you. I still wasn’t prepared to go that path. And so I actually went just off all of medication. I tried to figure out what to do next. And oh my god, that was the worst idea in the world. If I would not recommend that to anybody. It was it was horrible. And it was me just not being prepared at the time for what I needed to do. But at that point, it got really bad for me and I got so sick. I was to the point that I guess I realized that even though the medications weren’t controlling my Crohn’s symptoms well enough, they were controlling a lot of the other symptoms that I was having.
And so suddenly after that, I was having extreme arthritis throughout my whole body. I was to the point that I couldn’t even get up off my couch. I was having to use a walker to get to the bathroom. And I it’s at that point, though, that I realized how truly sick I was. So I guess in some ways, it was a wake up call for me, just to realize that this was what I needed to do. And so I went back to when we scheduled the surgery in May 2012. I had surgery to get an ostomy and a year following that I had a follow up surgery to make it officially permanent.
AMBER:
Your platform is called the Stolen Colon. What led you to start doing that?
STEPHANIE HUGHES:
Yeah, it’s, it’s interesting when I think back to it, I’ve always been a writer. I was blogging before that just on a personal blog. So I think for me writing and sharing has just been something that’s helped me process, whatever I’ve been dealing with at the time, I had talked some about having Crohn’s on my personal blog that I had before. Just a little bit here and there, but I’ve gotten Really good response from people from that, and just people saying, “oh, wow, I didn’t know you were dealing with this, I was dealing, I’ve been dealing with it too, or I know somebody who has” and it was just, it was a cool experience doing that. And so I think also with the Crohn’s, I had had it for so long. And I never really met anybody else who had Crohn’s or I went on very random occasions, have an acquaintance who I talked to for a few minutes, but it wasn’t something that I shared. So I think kind of that loneliness that you get in those situations, I didn’t really notice it.
But all of a sudden, when I had this new thing coming on and and looking at having an ostomy that loneliness kind of rose up again. And I wanted to try to find some way to connect with people. So I started looking for other people’s blogs and actually found at the time a couple of people who had some stuff that they were putting out there and it was so refreshing for me like oh my gosh, there’s people who are, you know, somewhat like me and dealing with the same thing. And even though it was really great to see that at the time, I also saw that there wasn’t a lot of it out there. And I found a number of people sharing about IBD, but not as many sharing about living with an ostomy.
So really starting the blog, I think was kind of a combination of these things. I think for one, it was just a way for me to kind of process what I was dealing with. And there’s just something about kind of putting that pen to paper or, you know, putting those words out there, that was really cathartic to me to do. And then it was also a matter of wanting to find some sort of community, but ultimately to I think it was wanting it to mean something. I was already going through something that I had fought for years and years. And I was like, if I’m going to go through this, if I’m gonna have to deal with this, I want there to be something good that can come out of it. And maybe by me sharing somebody else out there who felt the same way can see that and be like, okay, somebody else has already gone through this too. I’m not alone. I’m not the only one. Because that’s what I had really felt at the time. And because I had definitely never met anybody else who had an ostomy And I had no idea what that really even meant. So kind of being able to at least have an opportunity to do that was was important to me to try to make make it feel like I had there was a reason that this was happening.
AMBER:
Was there a reason why you had this never surgery stance? Did something happen? Or had you seen something? Or did you have a perception?
STEPHANIE HUGHES:
I think it was just the perception. And it’s hard to remember exactly what I knew about ostomies at the time, or where I had gotten my information. But I had this totally flawed view of what having an ostomy was, like, I basically had this picture in my mind of like wearing a fanny pack around that was filled with your poop that everybody would see and everybody would know. And it was this, like, to me, I was 26 at the time that I was going through this and to me, it was like that is the end of my life. If I’m going to have to walk around with a poop bag the rest of my life. So I don’t know where that view came from and it was really just the perception to me that it was gonna be something that everybody would know. And everybody would see, and everybody would judge me for the rest of my life.
AMBER:
Did you consult anybody before you started blogging? And after you started blogging? What did your family and friends think about it?
STEPHANIE HUGHES:
I don’t think that I consulted anybody about blogging. Like I said, I had been writing before and sharing and when I say blogging before, this is a very loose term. I had a blog that probably 10 people read. wasn’t like…
AMBER:
Your mom? [LAUGHTER]
STEPHANIE HUGHES:
Pretty much. It wasn’t some big blog, I’d share it on my Facebook page. And that was it. Yeah. But like I said, I kind of got the biggest response when I wrote about having Crohn’s disease. And I just saw so many different people making comments on that. And when I started doing it, I mean, I talked to my husband about it, but there was nobody that really discouraged me from doing that. I think they knew for me that this was a way that I process things and that I had good intentions behind. Trying to do it. So I never had anybody who tried to talk me out of it or make me really think twice about it. And especially at the time, I think none of us really knew exactly what that meant. It was more of just writing short, little paragraphs about, Hey, I have surgery scheduled. And this is what’s coming up. It was almost a little more of a way just to keep people in the loop. And as part of it, too.
AMBER:
Right. Yeah, I understand that completely. You were blogging about Crohn’s disease on and off as part of a blog that you were doing about your general life. Even so, how challenging was it to click publish on that first post that you made about your ostomy?
STEPHANIE HUGHES:
Interestingly enough, I don’t think it was that hard to hit publish that first time for me. I remember having some pause. The first time I wrote the blog about living with Crohn’s disease, because it was probably The first time I said it, you know, quote out loud and actually shared that with people beyond if it came up in conversation. For some reason, so I remember that one being challenging. I think once I started the blog, that wasn’t a big deal I was it was a couple weeks before my surgery, I was mostly just sharing kind of updates about that the bigger moment for me was several months later, and I had some company who had sent me an ostomy cover product type thing.
And they asked if I could send a picture back with me wearing it, and I’m like, Oh, sure, that’s no problem. And but I kept putting it off. And it was like several weeks and they kept asking me about it. And we’re finally a little bit like something going on here. And it dawned on me and I hadn’t even realized it at the time. I probably had my blog for eight months at this time, but I had never taken or posted a picture of me with my bag. And all of a sudden I realized that I was terrified to do that. I was out there like sharing my story and trying to help people and I wasn’t actually like sharing my full experience of what was happening. And so I had to kind of take stock at that moment of what I was doing, and, and went through and took a picture and shared it. And that that moment for me was a lot harder. So actually putting that image out there in the world more so than just the story about it.
[Music: Emotional Piano]
AMBER:
Have you ever experienced any stigma either in your real life or online, not that those two are equivalent? They’re very different things. But I’m interested to know if there’s ever been anything that gave you pause anything that somebody said to you or did, that was a challenge.
STEPHANIE HUGHES:
So I’ve never had anybody be blatantly derogatory in my face. I hadn’t experienced once I was talking to Somebody who was a nurse, like, it wasn’t an ostomy, nurse, maybe an ER nurse or something. And I don’t even know how we got on the topic of ostomies. without her knowing that I had one. She said something about how she had patients who had ostomies. And people always say, like, Oh, they don’t smell. And they’re not gross. She was like, but I’m here to tell you that they do and stuff like that. And it was one of those moments. I’m like, I don’t know how to respond to this. And we were in like, we were at an event. I think that’s what it was. I think we were actually at a Crohn’s type event. And so that’s probably how the conversation led there. And it was also one of those moments where like, I don’t know how to, like, stand up for this or say something about it with a whole bunch of people around and it was a really awkward situation. And I think ultimately, somebody else came up and she realized that I had one in the midst of it. And so that led to an awkward conversation.
But other than that, I really haven’t had anybody say something to me. I imagine that there are people who have probably thought things but haven’t come out and said it. More of the stigma that I see has come actually from other people who have ostomies who might write me a letter or something talking about how gross they think they are, and how horrible This experience has been, which I really feel for but at the same time, it feels like, Okay, if you’re saying that you’re gross with this, and you’re basically telling me that you think I’m gross with this. And that’s been more of the stigma that I’ve seen is a lot of people who kind of put that on themselves.
AMBER:
That’s really upsetting. How does that feel when you get those kind of emails? And then how do you respond to them?
STEPHANIE HUGHES:
Those those are always ones that I struggle with. And I try to I try to just be as encouraging as possible because I know how much this flips your life upside down. But I’m also a big believer in positive thinking and making the best of what you have. And that was sort of my realization once I actually went through all of this was okay, this is my life now. Like, this is the hand that I was dealt and I can’t change that. All I can change is how I respond to it from here. And I can spend the rest of my life thinking this is the worst thing that’s happened to me and treating it in that way. And it’s probably going to be the worst thing that’s happened to me. Or I can turn the other way and say, You know what, we’re going to move forward, I’m going to make the best of this, that I can, I’m gonna deal with it, but not let it run the rest of my life. And that’s really what I’ve tried to do on a daily basis is to just think of it. It’s just part of who I am now. It’s just part of my story. But it really doesn’t change anything else about me other than just, you know, how it’s changed me going through this whole process. So I really just try to encourage people to, to try to do that to see that this doesn’t alter who they are as a person, it doesn’t change their value as a person. And I don’t know, I don’t know if that gets through to people or not. But I think at this point, that’s all you really can do.
AMBER:
I think it’s interesting though, that someone who is still at the point where their struggling psychologically, and they’re having trouble accepting it, that they would then reach out to you.
STEPHANIE HUGHES:
I think most often for them, it’s that they suddenly feel like they are lessened in value and that nobody’s going to want them, nobody’s going to care for them. I think that a lot of it stems from that feeling of wanting acceptance. And I don’t know, perhaps it’s going to somebody else who’s been through this, who can understand it more and looking for some acceptance through that means as somebody who actually has kind of the full story, or maybe some of its because I really have always tried to in my blogs to even when I’m talking about really hard times that I’ve been through or struggles that I’ve had, I try to always end it with some some sort of hope or something of what I have learned through this or even if it’s not something that I have attained at the time, something that I’m trying to move towards and hopefully that messages coming through. And that maybe they’re just trying to find how they can look at things that same way. And I mean, and I’ll admit it’s, it’s a struggle, and I’ve had times where that’s easier and times when that’s harder.
AMBER:
You are an ostomate, but you are also a wife, and a mother, and it are you student anymore, or you’re graduated now. Now you’re all graduated. You have a very full and busy life outside of your blog and your ostomy. Are there any guardrails that you sort of put up to separate these different parts of your life?
STEPHANIE HUGHES:
That’s a really interesting question. And one that I haven’t really thought of in that context before and especially at this point where I am right now in my life. Being a mother and a wife is what I’m really acutely aware of at the moment and that I’m completely grappling with on a daily basis, now sort of being eight years removed from having an ostomy it’s not as much something that I am dealing with on a daily basis. I mean, obviously, I have to deal with it. It’s part of my life, but it’s just kind of the routine at the moment. And yeah, on occasion, it’ll be something will pop up, I might get a leak, or I might have a little bit of some, eating something that maybe didn’t agree with it as well. So I’ll have those moments where, you know, it reminds me that it’s there. But it’s not as much of a daily thing that I’m dealing with. And so it, it’s kind of an interesting perspective, because I definitely wouldn’t have said that a couple of years ago.
But right at this moment, if you were to ask me to tell you who I am, all those other things, being a mother, being a wife, being a writer, and a woman, all of those things would kind of come first, and obviously living with an ostomy and living with Crohn’s disease is part of that list. But it would be a bit further down as I was describing it, and living with an ostomy has completely changed who I am like it’s so so much a part of me that I’m not really even sure who I am without having an ostomy without having Crohn’s disease, like, I don’t know who I would be at this point in my life if I didn’t have them. So that will always be a huge part of my identity, even if it’s not something that I’m dealing with as much at the moment.
So as far as like, kind of trying to separate them at this point in my life, there’s not as much crossover between them, I kind of just treat having an ostomy as just another facet of who I am. I still have, you know, my kids will ask me about it sometimes. And I try to explain to them the best that I can that I was sick and this helped me and, you know, I’ve had when my son was younger, I remember him thinking that his little sister was going to get one cuz I think he just assumed that all girls had bags on their stomach. And so I tried to explain that no, this isn’t something that she’s going to have. It’s just something that mommy has. And so it’s part of the conversation that we have, but I don’t feel like it’s something that I have to consciously separate at this point.
AMBER:
Privacy is a big concern. Are there things that you haven’t blogged about or talked about or done a video about yet, and what you share versus what you keep private?
STEPHANIE HUGHES:
Honestly, in my experience, pretty much everything has been on the table. I don’t really feel like there’s stuff that I’ve been like, Oh, I’m not going to talk about that. Um, I’m not one who’s gonna get into like, details of like, what exactly, you know, it’s, you know, what exactly kind of stuff I’m seeing and stuff like that. But if somebody asked me an honest question, that and I actually felt that giving an answer would somehow benefit or help them understand something. I really don’t mind talking about pretty much anything involved with having an ostomy. And it’s actually funny because I’m a relatively private person. I am not one to. I’m not one to talk about my feelings a lot. I don’t really wear my heart on my sleeve. But when it comes to having an ostomy like, I’ve really don’t feel like I have kept anything, particularly private.
The only one thing that I can think of at all was I am not one that actually likes to show my stoma without bag. I have only done that one time in a particular video about changing the bag. And even then it was a very quick video. And I don’t think I even showed my face and at the same time that’s been the only part that I have felt was kind of a more private part that I didn’t necessarily want to show constantly. But, of course, if a teaching moment came up, I am willing and prepared to do that.
I think more of anything that I have kept private has been some of those feelings about things not as much about the nature of it or kind of the daily living with it. Those kind of things I don’t mind talking about, but sometimes things like where it may make me question my faith or make me question some of who I am, those are the ones that are a lot harder to put out there. And they’re also just harder to put into words. And because I’ve written some things like that before, and sometimes I just don’t really feel like it gives justice to what I’m trying to say. And maybe for me, it’s probably been cathartic just to write that stuff out, even if I’d never have actually published it. And maybe someday, I will. But I think that’s the hardest part is just really actually getting across the point that I want to get across. And to be able to say it in a way that could actually be helpful for somebody else or have somebody else who can understand as well. So that’s more of the side that I struggle with.
[Music: Emotional Piano]
STEPHANIE HUGHES:
This is a letter that I received from a mother of somebody who had recently gotten an ostomy I think about a month prior to this and she wrote to me, My 25-year-old daughter found your Stolen Colon blog and shared it on Facebook, which is how I came to like it and see your posts. I just had to write and thank you for your wonderful writing candid information and heartfelt encouragement for folks dealing with Crohn’s and ostomies. My daughter received her ileostomy on January 17. And she is doing great. She has become engaged to her Earth Angel sweetheart just a few weeks prior and they are getting married this coming November. He is an amazing boy and like your husband is 200% supportive of her and is with her every step of the way on the road to her recovery in their lives together. I read your article about relationships today. And as her mom, you’ve brought me to tears knowing that you are in her virtual life to share your information, insight and encouragement with her. And with all of us who love her so much. Thank you. Thank you. Thank you.
[Music: IBD Dance Party]
AMBER:
Hey, super listener. Thank you to Stephanie Hughes of The Stolen Colon for sharing her story and for being a resource to the IBD community and to moms and moms to be who live with an ostomy.
You can find Stephanie on Facebook, Instagram, Twitter, and on her site, stolencolon.com. I will put all her 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. Thank you to those who have left me reviews in Apple Podcasts, including Littleluna9, A_spareparts, DMVOC, and Michael Grover. Your support and your words keep me going when I feel like stopping.
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.