Life with a Stoma with guest Matilda Ahdrian
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Intro (00:03)
· This week’s guest is Matilda from Sweden. We met on Instagram
· She has Ulcerative colitis
· She has been in an ileostomy since 2012
You've had your ostomy since 2012. So that's like 10 years now?
Yes. anniversary, and I'm so excited. In September, we're gonna celebrate in some way. I love it. I love it. And it's not that you want to celebrate it. So why do you want to celebrate it? Like what? Why is it such a beautiful thing? Because it's a crazy amount of time. 10 years with an ileostomy because from the beginning, it was said that I would have it for two years. And back then it felt like that was forever. How am I going to do this? And now, like my years has literally flown by. And I mean, my bag, which I'm calling Guna. It's a Swedish name. It's his birthday. So, I of course I had to celebrate.
I believe it's, it's our second it was our second chance at life. So, we should be celebrating.
Yes, yes, of course. I mean, when you look back at that day, like the surgery day, of course, it's a bit traumatic. But for every year from that, it feels like it's an extra year of life. Because that point changed my life from my sickness.
Her Story (02:46)
· I got my diagnosis of ulcerative colitis when I was 15 years old. And back then were well, in my family, we kind of have way more than one having this problem with our tummies and both with Crohn's and Ulcerative. So, yeah, we knew fast that it was something like that.
· The flares come and go with ulcerative, the inflammation, like is active or not active, and then you need more medication and so on.
· That worked pretty fine for nearly two years, until I got really bad and nothing helped. I had high fever, couldn't eat anything. I lived on the hospital. So, in the hospital, they really like focused and tried everything at once. I was without food. I had a food drip
· It was emergency surgery on a Saturday, and they will move a whole colon. And when I woke up from that, I had an ileostomy but also the fever was gone. So, it was literally the sickness was taken out of my body.
That must have felt so amazing. When the sickness was just taken from your body. How did you feel? (04:43)
· At that time, when you get this diagnose, my doctors always said a stoma is the last way out. You don't want to end up there. But there's always that option. And of course, you don't want to do surgery if you if not needed. I just want to get out and be healthy. So, when we did that surgery, and that actually made things better.
· Even if I my body was extremely weak and to recover from an open tummy surgery, it's a process. But at least it felt like now we're going in the right direction. So, it wasn't the end. For me. It was like, the new first abitilty to actually be able to get my life back.
· I'm just going to bag, I'm just in a bag, I just wanted my life back. Colitis and Crohn's it's debilitating. You know, it's when you're lying in bed. And sometimes you just can't get up and you can't focus and can't function. And all you're doing is worrying about what the next day
So now you're in your bag, and you're back in school, you're living you're living your life. You're always on a beach in a bikini!(06:44)
· I've been to a lot of beaches. This like period of Corona has stopped me from the beaches because Sweden is cold. So like, I'm really, really excited to be able to travel again to see like new places new beaches. Yeah, I love I love warmer weather.
· After graduation, I went backpacking, because I wanted to do what I should do with or without the bag. So, I had one year off from high school until at uni and went backpacking. And then there was my like, the first time of really many, many beaches.
I love that now let's talk about that. Because there's so many people so you get your get your get your bag, you're healthy, you're in between, you know, graduation and university and you're like, I'm going to go backpacking, that would probably frighten most people who are in an ostomy. How do I go backpacking? How do you carry all the bags and everything you need? What was that year? (08:12)
· Well, I was only away for three months, but that's still a lot of luggage and bags for everyone having a stoma? And yes, there is logistics to plan to be able to do it. Of course, it's not like I'm going tomorrow. But I checked with my stoma nurse, is this like a crazy? Or is it possible to do it?
· I literally had a big backpack. I had very much extra supplies to because in you know, when you are swimming and in warmer climates, it you can be needing changes more often. I had a lot with me, and I always had for two weeks in my hand luggage in case of the big backpack would go away during the flight. I think around two weeks in my friend's backpack. So, I like had the portions out in case of something happens.
· We went around the globe, we started with a shortstop in the US, we had a few days in California, LA, and then we went to Fiji, New Zealand, Australia, Hong Kong, and then back. Oh, that's a pretty good route.
· But it's that I really want to live, if you want to go on vacation or a longer vacation like a backpacking trip. It is possible. That is important. It is possible just plan.
I love to travel, if I didn't get my stoma I’d be with my ulcerative colitis, then I would be more worried about traveling because you never know if you're sick tomorrow with ulcerative colitis if there will be a flare from the inflammation. So, the stoma has actually made me more secure to travel.
Where did you find that confidence from where does that come from? (15:00)
· I actually got that question this week on Instagram. And I don't really know if I have a good answer to it. Because I just did it from the beginning. Like, it hasn't been a question for me, even if yes, everyone, like, literally everyone looks at you, or look at looks at the bag. And that's important to know, if you go into the beach for the first time, yes, there will be eyes on you. But for me, it's important to know, or the people know that they are not looking because something is disgusting. They are looking because they haven't seen it before. I mean, I have had my stoma for 10 years, and I haven't met anyone or seen anyone at the beach with a Stoma. So of course, people are looking, because we don't see it, it's under our clothes, nobody sees that we have a stoma, and does that encourage me to actually be one of them, showing it because I love to swim, and I'm not going to stop swimming just because someone looks at it. But if you feel that it is like uncomfortable that everyone is looking at you, then you can just take a towel, or you can take a sweater or something just over you and then you will be totally anonymous. And I will usually compare it to being a celebrity. They can't hid. So, we can choose to be to be famous with when we're showing our bags at the beach. But don't feel for it anymore, then just coverage and nobody will care.
What is the one thing that you think that they need to they need to know? (17:46)
· The important thing for me is if there is something you want to do now, with or without your stoma, try it. Try it with your stoma and try it in your way. And you don't have to go all in at the first time. You don't have to go backpacking, the first thing you do like to try to just sleep away from home
· I have seen everything since I got my stoma, like I'm doing it for the first time I went swimming for the first time, I went traveling for the first time, I went to school for the first time, like everything for the first time with a stoma and try that. And if that wasn't something for you, then don't do it or adjusted to the next time. Don’t’ let the stoma stop you from doing what you want to do in life. Whether it's work or school, travel, anything or like, yeah, you know, you can do everything for the first time.
Find Matilda on Instagram @matildaahdrian