colistis

In this episode of The Beautiful Bag, host LeeAnne Hayden sits down with Jenny Harrison, a remarkable individual whose journey with gastrointestinal challenges serves as a testament to the power of strength and determination.

Introduction: LeeAnne and Jenny dive deep into Jenny's journey, exploring the highs and lows, the triumphs and tribulations, and the invaluable lessons learned along the way.

Key Points Covered:

1. The Beginning of the Journey: Jenny shares the story of how her journey with gastrointestinal challenges began, from the removal of her gallbladder to the discovery of adhesions.
2. Navigating the Unknown: Facing high output, dietary restrictions, and the constant threat of obstructions, Jenny discusses the daily challenges she encounters and how she perseveres through them.
3. Finding Strength in Community: Through her work at Girls With Guts, Jenny found a supportive community of individuals who understood her struggles, offering encouragement, empathy, and a sense of belonging.
4. Embracing the Journey: Jenny shares how she learned to embrace her ostomy as a symbol of strength and resilience, empowering herself to live life on her own terms.
5. A Message of Hope: Jenny's journey serves as a beacon of hope for anyone facing gastrointestinal challenges, reminding us that with resilience, courage, and support, we can overcome even the greatest of obstacles.

Connect with Us:

• Follow The Beautiful Bag on Instagram: @thebeautifulbagpodcast
• Follow LeeAnne on Instagram @leeannehayden
• Folllow Girls with Guts on Instagram @ibdgirls
• Join the conversation and share your story using the hashtag #TheBeautifulBag

Tune in to this inspiring episode to discover the power of resilience and the beauty of embracing life's challenges with courage and grace.

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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

Intro  (0:00)

• This week’s guest is Chium and we met on Instagram. 
• She was out there with her Ostomy working out, doing all that fun stuff I love and I just needed to know her because she is such an inspiration out there!

Start Of Her Story (00:55)

• Had her Ostomy due to an emergency situation in 2018. 
• In and out of the hospital dealing with her Crohn’s and flare-ups.
• Not in a great place at all.
• During a routine colonoscopy, they found a perforation in my colon which led to having the Ostomy put in. 
• Have had it since then, and now she is able to live a much better quality of life than she had before and what she thought she was capable of. 
• A blessing in disguise.
• Ileostomy - not yet permanent. Still remains to be seen.
• At the time of the surgery, it was the idea of being temporary because of the issues that popped up. 
• Still need to go through the procedure and have it assessed to see if it can be reversed.
• Right now it will be there for a bit.
• Was a complete surprise when coming out of the procedure. 
• Knew it could have been a possibility, but never expected it to become a reality.
• She was doing very poorly and what was happening with her bowels, was a thought that was in the back of her mind that it could happen. 
• Not having time to research and understand what it was and how it could benefit held her back at first. 

Experiences Post Surgery (4:34)

• Was a lot of mental processing afterward because it was a shock.
• Her body changing so drastically and something synthetic is now a part of you with this taboo topic and stigma of POOP!
• The mental hurdle you have to get over is that this is not taking away from you and making you less of who you are. 
• A huge wall was put up. Attractiveness, sex appeal, her pride, all took a huge hit.
• At first, I did not do much to get through that. 
• Sat in self-pity and feeling bad.
• Got to a point where it became such an effortless process that somehow it clicked that it is not a big deal!
• Not sure when or what happened, but somehow clicked.
• The first part of getting over the hit her pride took.
• Decided she has been dealt this card and she can either choose to sit and wallow or do something. 
• Didn’t want her children to constantly see her like that either.

Coming Out And Being Social After (9:12)

• When did you start going on social media and saying WOAH there are a bunch of people out there going through what you did. 
• Before this was not active on social media at all.
• Facebook was for family and the extent of social media.
• Felt so isolated and did have that click, I knew that I wasn’t the only one going through this. There are more people out there.
• Wanted someone else in this situation to maybe avoid a little bit of what I went through.
• This is why I started on Instagram to post anything I could. 
• Discovered other individuals.
• 750,000 to 1 million people in the US with Ostomies
• Though it was a smaller community and no one likes to talk about this. 
• Remember seeing something and being blown away by the number of people living with this. 
• Was a sad moment because so many people living with this and it's so hidden. 
• Part of the stigma is just older people who deal with this and this adds to the shame when you are younger. 
• Someone else’s journey helped you, now your journey is helping other people!

What Are You Doing On A Daily Basis To Work On Your Health, Your Messaging & Mental Health (15:00)

• There are days when you don’t want to do anything and veg out, and I think that helps my mental health, you do need those days. 
• Should have to be on the go and in a constant state of rush. 
• If I feel tired, I do a better job of listening to myself and telling myself to take a break. 
• Tried to be more self-reflective and take a hard look at myself. 
• Started in the hospital when recovering from surgery.
• Recognized I needed to change the way I was eating and approach food with a more open mindset. 
• Starting with food opened the door to educating myself on other things. 
• Exercise came next. 
• Realized I was not active which is probably playing a huge role in being over-stressed, inflamed, and other things. 
• Found out about the gym, different exercises.
• Understand what I am going to do. 
• Worked with a personal trainer to feel more comfortable.
• Didn’t want to do anything to hinder me because of the Ostomy.
• Trainer pushed me to get out of my corner, but kept it within a reasonable pace and allowed me to feel comfortable.
• Did end up with Peristomal Hernia in the long run because I went from being a sedentary person to trying to work out 5-6 times a week. 
• Recently I had surgery for that hernia.
• So that concern was big for me in the beginning but I didn't realize how easy it can pop up.
• When I started to really educate myself on nutrition and exercise and get into it, walking is better and really good for you.

Closing (24:50)

• If there was one thing you would want to say to the listeners, what would that thing be?
• Having an Ostomy is a way to get your life back under control. 
• It may not be what you thought or what you envisioned, but it definitely is a new door opening up to help you, not hinder you. 
• Find her on Instagram
• @Chium816

This episode is a continuation of last week.  We discuss:

- The power of Sleep

- The importance of fitness & performance

- The power of mindset

- How to win the war on cancer

- Conquering inflammation 

- New treatments that are coming for Crohns patients

 

Ashlyn is 1 year out from having her Ostomy and from her perspective, it has really been a year of acceptance for her.

After going in and out of remission with her UC over the years, it finally got to a point where it was truly a life or death situation. The last thing that had to be done to save her life as the medications and treatments stopped working was to get part of her colon removed and have an Ileostomy put in. 

The year post-op was a battle with multiple hospitalizations following her surgery, losing all of her hair, and then working on how she can find herself again and adjust to this new normal and accept herself and her situation.

We can both agree that the mental aspect of recovery is one of the hardest when it comes to this.  But just really ensuring that you have this community around you that supports you and is there for you is so needed to thrive in this new life. 

“Believe in yourself and finding a way to love yourself is the key to sort of everything else. For me, once I was able to accept myself and my new body and my new hair, and all these things I was going through.  I felt like the rest kind of just came naturally. And I think other people can sense that as well.”

You can find Ashlyn on Instagram @ashlynlaskey as well as her youtube channel, The Roaring Redhead. 

Heather's journey started as a young child with stomach issues and doctors always telling me nothing was wrong.  Fast forward years down the road and Heather was in constant pain with Ulcer Colitis, then faced a Crohn’s diagnosis.

Receiving these diagnoses lead her down a long path of healing holistically and doing things to get her life back. She learned about the importance of a clean, organic and holistic lifestyle and diet and started making changes to her everyday life.

After a cancer diagnosis, Heather was forced to have surgery to have an Ileostomy, but continuously stayed positive throughout it all!  This is not a roadblock for her.  And throughout her whole journey, she always felt that people should not feel sorry for her.  But through the whole journey, she thought, “1) What am I supposed to learn from this… And 2) this did not happen to me, it happened for me. It made me a better person all the way around. It has given me the knowledge I didn’t know before, and a passion to help others. To me, I find this a blessing!” 

Heather’s journey has given her the freedom to do things again and she is living her life the way she wants, helping people go through what she has and teaching them the knowledge she gained during her journey. 

Definitely take a little time today to check out her podcast, it's a good one!!  

You can find Heather here at @heathermoffatthealing on IG and Facebook

Michelyn Caldwell founded the company, NB Products (Na'Scent.com) in 1998. This company came to fruition after a close family friend, Linda, needed an ostomy when she was in her 20’s and learning about her struggles inspired Michelyn's journey and dedication to help Linda and others!

For those that are unfamiliar with the product, Na`Scent is an Ostomy Odor Eliminator for use in all ostomy pouching systems.

Over the last 23 years, she has learned that this product has made a huge difference in a lot of people's lives and this has been their main inspiration and motivation to keep things going over the years.

"This work has given me appreciation in life. And I think the one thing I have noticed especially in the Ostomy community is that a lot of these people have been given another life. To hear their stories and the courage they have shown and the resilience in moving forward has just been incredible."

To learn more about Michelyn and the work she is doing to help people in an Ostomy take a listen because this product has really changed so many people's lives giving them the confidence to live their lives the way they want!

"The Ostomy has saved your life and has given you life, but it is NOT YOUR LIFE. You are separate from it. Yes, it has helped define who you are like; it has helped me and allowed me to feel confident in myself. But it is not what makes me, me. And I think that it is important to understand that for everyone else out there. There are other things out there that make you who you are. It's just a part of you." - Jessica Grossman.

Jessica has had an Ostomy since she was 13 years old after battling Crohn's for over four years as a child. And she has done so much since then!

She is an actor & model; she owns a digital marketing company, is the founder of @uncoverostomy, and has been happily married for five years!

Growing up, she forced herself to be comfortable speaking about her Ostomy; it helped her open up and grow into this remarkable woman and bring awareness to her Ostomy.

And through the years, she has come to realize that the Ostomy doesn't define who she is; it has just helped her to be able to be who she is today.

"It's not why I am who I am. It's not something that holds me down because I have it. I can do all of these things because it kept me alive and because it saved my life! BUT I am all these other things because I am alive because of my Ostomy!"

Jessica has such an inspiring story of finding who you are because of this life-saving device and that you can still do what you are meant to do on this earth because of it!

Take a listen and be sure to give Jess a follow! @jessgrossman