Bag Lady Mama: The woman changing the way we see living with an Ostomy
Krystal a.k.a Bag Lady Mama is just like you or me. The only difference is Krystal lives with a bag, an Ostomy.
Hear her incredible story of how her sickness with Crohn's Disease transformed her to become an incredible advocate for her community.
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The website: www.icantstandpodcast.com
You can follow Peta on Instagram @petahooke
Peta [00:00:03] Hello and welcome to the I Can't Send podcast, the podcast, answering your questions on what life is like when you have a disability. This week's episode is with such a fantastic chick. She is an absolute firecracker. Her name is Krystal, and she's better known as Bag Lady Mama.
Peta [00:00:27] Just a warning before we start. Krystal and I do swear a few times on this episode. We had to record this episode remotely. I've cleaned the audio up as much as I can, but it isn't as clear as it normally is. So I hope you still enjoy it because I had such a great time chatting with Krystal. Without any further ado, let's get into it.
Krystal [00:01:07] Hi, Peta. I am Krystal, otherwise known as the Bag Lady Mama. I am known as Bag Lady Mama because I have an Ostomy me most people know what a colostomy bag is. So I had that because I have Crohn's disease. I was diagnosed with Crohn's disease when I was 15 years old, so I was very, very young and I've had a few little issues, bowel issues leading up to that. But it was it really came to a head when I was 15 and I lost 10 kilos in two weeks and I was just really sick and it took almost 18 months to diagnose me with Crohn's. For those who don't know what Crohn's disease is, it is an autoimmune disease that affects the lining of your bowel so that can start from your mouth to your anus all through your intestines or stomach, your eyes, your skin, your lungs, it can affect enormous amounts, enormous amounts of new words. What I like to know I've got an enormous amount of your body it encompasses, and it is an excruciatingly debilitating disease. So they removed the diseased part of the barrel and I was fitted with an ostomy bag. It was the best thing that ever happened to me, and my experiences from that led me to this path that we're at now where I can share my story and make people not feel so alone. And I knew when I was diagnosed that that this must have happened for a reason. We all need to kind of find something that that justifies the crap in our lives. So mine was okay. This has happened. One day I'm going to write a book. One day I'm going to help people. Then one of my friends said to me, You just need to frickin do it, Krystal just got a blog just write, just start it. So I did. I just literally created a page. Put a picture on there. I said what I was going to do. And I had five hundred followers, I think within like twenty four hours.
Peta [00:03:32] Wow.
Krystal [00:03:33] And I thought that must have been just all of my friends. But it wasn't. I think for four months I had 20,000 followers on Facebook,
Peta [00:03:41] oh my god, And for those listening, that is very hard to do. So I bow down to you, girl. You know how to work the system.
Krystal [00:03:52] Thank you, darling.
Peta [00:03:54] Do you define your stoma as being part of yourself or do you see it as a separate entity to you?
Krystal [00:04:01] That's an awesome question, Peta, honestly, that is a really, really good question because. At first, when it first happened, it was like this little alien. This this thing on my stomach and I was like. Rationally, it was a part of me that I was just like, this is not a part of me, it was like a separate entity, and I remember thinking, Oh, am I going to hurt it? Like every time I changed my bag, I would think, Well, I have to be really careful when I clean it because I'm afraid I'm going to hurt it. I think that actually may have helped me, like connect with it over the time because I could then swear and swear at it and be like, Fuck you, like, stop shitting all over me kind of thing. I can direct my anger at it and focus on that one thing, as you know, the good and the bad. I could keep it separate from me that I'm still me. Now, as the years have gone by, this is my second stoma. But with this one, I've never I've never named her. I just it's just it's just a part of life now. I gave myself the space to not be defined and overwhelmed by my disability or by my baggage. I was then able to grow into an adult and go, You know what? This is just a part of me, and I now have this shared common experience as a fundamental with other people who have a disability. And my biggest focus with my blog is not about what led up to requiring an ostomy because I feel like there's too much focus on that. My point of difference that I feel like I have is that I focus purely on the ostomy because it's irrelevant all that stuff behind the story. Like, we all have something shared, and I think it's really awful to discriminate because it's unspoken discrimination in the Ostomy community like that. If you have to have a bowel disease to have an ostomy, and that's the only reason why an is spoken about. But what about the other people? I mean, there are people who are paraplegic that require an ostomy. There are people who have traumatic birth experiences. There are people who have cancer. There's a huge range of people who require an ostomy. And that is that experience and the way that it changes and shapes are is the common denominator. And why should we isolate people? Because of that, it's not fair.
Peta [00:07:10] We're both very positive people, and we have, I would say, a very similar outlook on life. How did you find the transition from being a person with health issues to the person you are now that can be viewed as having a disability?
Krystal [00:07:30] That's also a really good question. I'm stubborn. I've always been stubborn. I don't like to be put into a box even as a child. I never like to be told that I should think and feel a certain way. We all experience these Big Bang moments where we go, argh, and then it's not to say that instantly you are now 100 per cent yourself, it's just that's the moment where you have that maturity to start that new path and that new reshaping of yourself might become a butterfly. I feel like when you're sick, you have a lot of downtime and a lot of opportunities to go inside yourself and think which can be really freaking bad. But it can also be really good because it gives you an opportunity to really self-assess. And for me, that's really helped me over the years is to kind of look and self-reflect and go, well, I'm going to look at myself like I'm my own best friend and I'm not going to lie to myself and I'm going to go, This is OK. Like, this is. Don't maybe, but I wish I had that like, you know, this is what I've got and it will do.
Peta [00:09:03] And as someone has self-reflected a lot, Krystal, what do you wish people better understood?
Krystal [00:09:11] Let's start with the media. I bet you feel the same way. Goddammit, I'm sick and tired of this negativity. I don't think I've ever seen one positive Ostomy related information out there. I want people to see real-life ostomates. None of this oh, this like, you know, this older lady and man jogging through the forest, you know, and it's all picture-perfect. And hey, you can have a totally normal life and look at these people. I mean, the storyline is accurate that you don't provide the right information, the right visual for people to be able to connect with that. That's what really needs to change. And that's the great thing about social media. As an Ostomite we are not even a token like you don't even we don't even on the radar of a token person that is disabled. We don't get to be put on ads with disabled people we are forgotten about because I talk about people who poo, we don't talk about people who have ostomies. So there's no representation out there, which breaks my heart that needs to change.
Peta [00:10:42] Absolutely. Totally agree with you. And like I think the more representation, the more quote-unquote normalized it is seen as the easier it is for people to embrace themselves if they are in your position and Krystal. How did you learn to embrace your ostomy?
Krystal [00:11:01] Like I said, I've had two different surgeries, so my first experience was vastly different to my second. My first was planned, my first I was excited about because I was so, so sick. The second time around was vastly different. It was traumatic. So when I had to have surgery the second time around, it was because I'm going to just get say it, medical incompetency. It was a very, very traumatic time in my life. My baby was six months old. I was forced to stop breastfeeding. I was forced to have a second surgery. I also had to have two other surgeries to clean out my abdomen because I had two five centimetres abscesses full of faecal matter floating around in my abdomen from where my bowel had perforated. And I knew that having my second surgery would just take me under two meters of bowel. So that would mean a huge change to my absorption under two meters, I technically have short gut syndrome, which can come with a range of extra issues. So I was terrified, had a six-month-old baby, previous surgery. I'd stopped breathing, so I thought I was going to die. I really struggled to connect with my change again. Took probably two years of me just constantly changing the narrative of negative negativity in my own mind, when I look at myself in the mirror and I actually force myself to look in the mirror and and try and go well that's ok I'm still like. This is how my body is now I'm a newer version of myself, I'm constantly changing, constantly evolving. I'm like the 2.0 version of me now. I still have to keep going because life isn't going to fucking stop, even though I want it to. And that is that is a huge thing, I think, for people with any disability. How can you move on and how can you grieve if you're told you're not allowed to? If you have to suck it out, find the silver lining and move on. It's not reality mate. It's not reality. That's not the truth. People can't move forward if they can't deal if they can't have that permission to be in that moment and to grieve and to feel all of those really awful big emotions and be allowed to feel sorry for themselves. Because fuck you, all, we have earned it. We have deserved it. We have the permission. And people should give us that space because we're going to get back up.
Peta [00:13:59] I so relate to what you just said, Krystal, I feel like resilience, coping and self-esteem is such a mental game. And just because nine times out of 10 you have great days doesn't mean you shouldn't give yourself the permission to have the shit days, and that doesn't mean that you're not still a happy, resilient person. You're just being human.
Krystal [00:14:25] We're humans that have had these huge amounts of trials, and of course, we've had these. We're going to have these experiences where we're going to have to process that. And it's a lot. It's a lot.
Peta [00:14:45] Do you have any tips for people to become more comfortable in themselves, regardless of whether they have a disability or not?
Krystal [00:14:52] I always say be your best friend and I know it sounds so cliche and so generic. I can guarantee you people don't see this shit that you think you see. It's not real. It's not reality. People's version of you is so much more different than your own version of you. So when you're looking at yourself? Remove yourself from the equation kind of thing and look at yourself from an external perspective. Also, push your boundaries, push the boundaries of what you've been told you should be and look. Do it when you're when you feel safe, do it and then step out a little bit out of your comfort zone, like go outside of the house, maybe wear white if you have an ostomy just to the shops so that you're not too far, you can come home again if anything happens. So it's all about testing those boundaries and pushing forward within reason and within what makes you feel safe. But I think that's how people grow and move and feel connected to themselves, or reconnected to themselves if it's a new disability because you know you're not the same. But if you keep yourself stagnant, you're not going to learn and you're just going to sit in misery and you won't keep moving forward and you'll never be you anymore. But you can be. It's just these little safe steps that you can take.
Peta [00:16:25] And those safe steps allow you to be proud of yourself, which I think is paramount to being happy and being comfortable in yourself. Positivity is 100 per cent the key, but to be a little bit negative for a moment. What is the most difficult thing about having an ostomy?
Krystal [00:16:45] Pigeonholing?
Krystal [00:16:47] I bet you understand 100 per cent what I say when I say pigeonholing.
Peta [00:16:53] I might, yeah.
Krystal [00:16:54] Pigeonholing drives me insane. Where you are given this definition by medical professions, of professionals, of who you are and what you should look like and what your abilities are based on their own assumptions and based on their own fear. Instead of hearing you, you are pigeonholed and told you can't do this because of this. To me, especially being paramount and it's been a huge part of my birthing experiences, my pregnancies, and that has been some of the most traumatic experiences of my life. And so I disempowering. Any medical professionals and I'm not to say I'm not saying that they're not. There are great people out there. There is but medical professionals, nurses and doctors are given one unit in their degrees on Ostomies. So if I have any kind of emergency and I need to go to ED, there is no one qualified there unless there is unless it's on a certain day an ostomy nurse is working and happens to be available.
Peta [00:18:25] So the one thing you'd want to be improved is to change the medical system? Big goal, but I agree with you.
Krystal [00:18:33] Oh, I'm on to it baby like I'm I. I have huge plans. I would like to see that Ostomy nurses or thermal therapists are what what they're actually called thermal therapists, that it becomes a specific course on its own because then there could be people actually trained to provide the service and more funding from the government to provide the service. Because at the previous hospital that I worked at, we had one one single therapist and she was doing 200 stomas per year. That's just that's ridiculous, and she couldn't get any more funding to do it because no one takes it seriously. I like you and I are very positive, we're also very realistic. So we're not just sharing the truth, we are sharing the truth, but we're we're we're going to share all the aspects of that truth. So I'm not going to say it's all going to be roses and I like that you want to talk about the negative as well because it's reality. There is a lot of negativity in there as well, and there are there are ways that we can deal with that and I've been so disempowered myself. And that is why I'm so fiercely a huge advocate for people being empowered early on so that they don't have to face that discrimination and that disempowerment, because the reason why I had to have my second surgery is because I kept being told I was delusional. I kept being told. What are you talking about? You're not a doctor getting your get in your box. You don't know what you're talking about. And because of that, I almost died with a six-month-old baby and I knew that they were wrong. I knew my body. But because I kept being told no. And I was too scared and also very, very fucking sick. I didn't want to rock the boat. I didn't want to question them because they are the expert.
Peta [00:20:54] Yeah, I totally agree with you there, it's a hard balance because I do really respect medical professionals because God knows science is not my strong point. That is not what I'm best at. But at the same way, my stubbornness to make sure that I get the right treatment is so important for me, my family and my friends, because they going to be the ones supporting me at the end of the line. When you leave the hospital, it's all. It's a lot longer process to feel better and to feel yourself than just the period at the hospital. And I'm stubborn also in the fact that I'm protective, so I don't want other people to go through what I've been through.
Krystal [00:21:37] Exactly. I think you and I are so similar in that way because, you know, we are protective of our community and we don't want them to suffer because no one should feel as shit and are isolated and suppressed as no doubt with felt, because that's why we're here now kind of bucking the system because we experienced having to say fuck you to the system kind of thing and so, Yeah, we're sharing that wisdom and that knowledge with our communities that we've built because we need to because if we don't, who is?
Peta [00:22:19] Before the last question, I just want to thank you for doing this, I thoroughly enjoyed this conversation. I feel like I found a very similar person like we're a bit twinning in some ways. Where can people find you, Krystal?
Krystal [00:22:33] So Facebook, Instagram, YouTube, Twitter. I am all Bag Lady Mama. On all of it, say, or if you wanted to email me firstname.lastname@example.org, I also have a website www,bagladymama.net That's where you can find all about me. Some information, my shop and all of my stories, all of my journey and my community.
Peta [00:23:05] Finally, last question, what do you love about having an Ostomy and a disability?
Krystal [00:23:11] I love to shock people. And I love seeing that on people's faces and that education that I'm able and that awareness that I'm able to kind of like really push out into the world. I love that. I love the community that we have. I love the love and the support that we give each other. I think it's really, really, really valuable. And I'm really proud of the things that I'm able to do and and people that are part of my community.
Peta [00:23:47] Thank you so much for your time. Thoroughly enjoyed this conversation and good luck in everything in the future. I'm all behind you.
Krystal [00:23:56] Same same Peta. Thank you so much for having me. You're an absolute gem and I adore you. I think you're so awesome, and I'm so glad you can have me here today.
Peta [00:24:09] Thank you for listening to this week's episode. I hope you enjoyed my chat with Krystal, a.k.a. Bag Lady Mama. If you did, can I encourage you to leave the writing and review? If you listen on Apple podcasts of Peta, get to follow Krystal and I on social media. I love talking to anyone that DMs me and I so enjoy hearing about what you guys think of the episodes. So until next week, bye.