Changing the stigma of having a stoma with guest Stefanie

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Intro (0.00)

·       This week’s guest is Stefanie and we met on Instagram

·       Wait until you hear her accent!  She was doing some amazing things out there on social media and I knew we needed her on the show. 

·       She is a 22 year old college student with her ostomy.

·       Lives in Scotland 

Start of Her Story  (1:13)  

·       Didn’t know she would receive so much attention out on social media when she started posting.  She continues to do it to help people and it is a safe place for her to feel comfortable talking about her experiences. 

·       Never had complications in the past, woke up one day and didn’t feel very well. 

·       Drs told her it was a cold 

·       Couldn’t got to school, was stuck in bed, started to deteriorate.  

·       Drs finally gave her a colonoscopy and found colitis 

·       She was glad they found something and it wasn’t just in her head 

·       Was put on medication after medication, but her bowels were too far gone. 

·       Was told would have to wait a couple years for a different medication or get a bag

·       She ended up choosing the bag after a year because she really didn’t want it. 

·       Wished she would have spoken up sooner about it not being a cold and advocated for herself more. 

So now you're in your bag. I mean, you're young, like you're in college, and how was that? Like? What was that like when you first got it? (6:41)

·       I thought the bag was going to be the worst possible outcome. At the time I thought It was disgusting, It was horrible. It was going to make me feel unattractive, it was going to be essentially my worst nightmare come into life. 

·       When I did get my bag, I did not like it. And I struggled a lot mentally and physically trying to deal with the changes. Like trying to look at myself in the mirror and recognize myself was difficult. Every morning, I would wake up, I didn't want to look at my bag, because I just wanted to pretend that it wasn't there. 

·       I didn't want to talk about it openly to people. Because let's be real who wants to talk about poo 

·       Thought it was going to be temporary and ended up with a second surgery to make it permanent. 

·       Second one was the hardest because it was permanent.  

·       Then she started feeling better and doing things (like getting out of bed) I had spent majority of my two years lying in my bed, homebound I was able to get up out of bed, I was able to keep food down, I was able to go out in the car and go to the shop, I was able to go and visit my grandpa, I was able to go and see my friends. That to me, was like, that's totally eye opener. Like, whoa. Like, it reminded me of what it feels like to be normal. And I was in no pain. And I thought, I forgot what that felt like, I forgot what it felt like to feel, you know, a sense of relief, because every day was challenging. 

·       slowly but surely as the time went on, I started to build relationship with my body. I started to love myself. 

You said you thought it was going to be ugly and smelly, and, awful, and who wants to talk about poo and all that stuff. But here you are. You're out on Instagram, you're answering some amazing questions that people ask you all the time, and you're showing your bag. And guess what? People in ostomies we talk about poo. And guess what that opens the door for other people to talk about poo? Because curious. They want to know. (12:37)  

·       When I had my Instagram page, my own personal one, if I was in a bikini, I had this body with nothing attached to it. And then suddenly, there's something there that wasn't there before.

·        People started to ask What is that? That's how the conversation starts. 

·       It's such a good way to start conversations to start breaking down misconceptions and tackling taboo subjects. 

·       When I was going through everything, there wasn't someone like me that I had on the internet to talk to 

·       All you see are older people not younger ones. 

·       you can imagine anybody going through their journey of you know, IBD, Crohn's Colitis, cancer when they look on the internet, and that's all they're seen. That's daunting. That is terrifying. I remember how scared that would be I thought I do not want that on my body. No way in hell am I have enough on my body? But had I known back then that there was actually these black bags, these white bags, you can get bag covers, Lacey bags, very sexy bags, I would have been more ok with it. 

How school going? (17:42)

·       It’s is amazing.  The fact that I'm even at University is a massive achievement in itself. That was something I never thought plausible. Back when I was ill. 

·       I'm studying psychology 

·       I'm actually going to change my degree. And I'm going to go and do community education. 

What are some of the top questions that they that people have asked you? (19:59)

·       one of the biggest ones is when did you start exercising after your stoma surgery? How was affected? Because fitness has become a humongous part of my life. After all my surgeries. I take my health seriously.

·       When people ask me, you know, how was my body and fluids after surgery? And how did I get back? 

·       How did you lose your weight after your surgery? After you're on steroids? 

·       Can I still wear dresses even with a stoma? Do you wear it horizontally? Do you read it vertically? 

·       Can I have sex after having my surgery? How do you manage having sex? Like, is that still a part of your life? Do you feel like it's different? Has that affected your confidence? 

How has your relationship been with the boyfriend? (22:36) 

·       I was really fortunate enough to have met my boyfriend in high school. So I've been with him. It's going to be eight years this year. So we were young, he's my high school sweetheart. So he was with me pre diagnosis, he was there from the very first symptom all the way through, you know, the ups in the very low lows. And then it was there with me all through my surgeries, everything. He's just been my constant, like he's been constant. So I'm quite fortunate in that sense. 

·       If I were single, I would tell them on the first date but that’s me 

·       You don't need to feel obligated to tell people that you have one. I feel like there's a lot of pressure or must tell someone. If you don't feel comfortable, you don't have to you do that in your own time. 

What did you do to start your journey back to fitness?   (25:56)

·       I feel like that's when your recovery starts, the minute you wake up every movement that you do. Following on from that, it's your fitness journey to see the motional even just setting up a bit, getting out of bed standing up and going back to bed. That was like the start of my fitness on it. And I classify that as the start because that's when I started moving my body again. 

·       I strength train every day. But like that took time, that's two, that's two years on. 

·       I started from basics I worked on, a lot of core work had to build up of course, and because if you don't if your core, you can't do anything, it's so your core strength is so important. So I went back to basics, strapped it down and built my way up from there. 

I'm assuming it's really helped your mental health? (28:24) 

·       when you go through what we have went through, it is so detrimental to your mental health. It is ridiculous, like you're in such a dark place. And trying to find a way to cope with that can be hard. And luckily enough, you know, we found fitness as my absolute escape. 

·       I'll wake up every morning and even if I'm having a bad day, I know that when I go to the gym, I'm going to feel some sense of relief. You know that gyms, my outlet when I go to the gym, all these thoughts on the bodies or the or the anxiety that I feel just disappears. 

Closing:  Now, if there was one last thing you would want to leave our listeners with? What would that what would that be?(33:42)

·       That's such a hard question. There's so much I would like to see but essentially just take your time. Don't rush things. Don't feel like you have to be someone that you're not. Except, you know that even though things might not be turning out or be panning out the way you had expected them to. As cliche as it sounds that as elite at the end of the tunnel, and you just need to persevere. Find what works for you. And do you

Find Stefanie on Instagram @lifewithastoma_