The Beautiful Bag

The podcast episode features an interview with Jessica Miles, a photographer, registered nurse, and ostomy advocate who shares her journey with a connective tissue disorder and multiple surgeries that led to her having a colostomy. Jessica talks about her experiences with doctors and surgeries, her positive attitude despite her health challenges, and how she copes with her chronic illness through self-portrait photography and birth photography. She emphasizes the importance of taking breaks and setting boundaries, as well as the need for greater awareness and education around ostomies and chronic illnesses. Jessica's story serves as an inspiration for others facing similar challenges.

Connect with LeeAnne on Instagram @leeannehayden and @ www.leeannehayden.com

I just got back from Honduras while on a mission trip.  We brought doctors, a dentist, clothing and medications to the villages of Honduras.   

In this episode I talk about:

what the experience was like

the people we served

What it was like with limited water

Sharing the stories

and much more

For those of you who want to contribute to Dr. Paz and the windows for the church my Venmo is @LeeAnne-Hayden  I am matching all contributions and 100% of the proceeds are going directly to finishing the church windows.  

Connect with me over on Instagram @leeannehayden or reach me at https://www.leeannehayden.com

Have a great day! 

LeeAnne 

In this week's episode I discuss tips and tricks for swimming with an Ostomy. 

• Finding confidence to do it
• Personal story on my first time in the pool 
• What to wear
• How to make sure everything is on correctly 
• How to avoid leaks 
• The benefits of swimming 

www.steathbelt.com

Follow LeeAnne on Instagram @leeannehayden , on Facebook @leeannehayden07 or on her website leeannehayden.com

In this week's episode, I speak with Brock Masters.  Brock was born with Spina Bifida and has overcome so much.  We talk about:

- How perception is reality 

- Fitness 

- Mindset 

- Getting his freedom 

- Volunteering 

- Being part of a community 

and so much more!   

US Youth Camp - https://youthrally.org

Canadian Youth Camp - https://www.ostomycanada.ca/ostomy-canada-youth-camp/

Find Brock on Instagram @brocknessmonsterr or email him at Brock.Masters@hollister.com

Follow LeeAnne on Instagram @leeannehayden or on her website www.leeannehayden.com 

In this week's episode, I speak with Oliver also known as The Kid with a Bag on Instagram.  We discuss:

- Being diagnosed with Ulcerative Colitis as a teenager 

- Having a permanent Ileostomy in June 2020

- Playing sports with an Ostomy 

- Positively using social media to raise awareness for chronic and invisible illnesses 

In this week's episode, I had the privilege to sit down with Dave, who had sent me a wonderful email regarding his story. 

In this episode we discuss:

- Receiving 2 separate cancer diagnoses

- Emotions of being a man in an ostomy

- Advocating for himself

- Listening to his body

- The importance of asking questions

- Writing the questions down and bringing them to the DR.

- Having great faith and a support system

and so much more!   Listen in and let me know your takeaways! 

@leeannehayden on Instagram  or www.leeannehayden.com 

In this week's episode I bring back Dr. Joga Ivatury.   We discuss:

- the differences between an Ileostomy vs a Colostomy

- Ulcerative Colitis & Crohns 

- When to seek medical help

- Listening to your body 

- How to connect with stoma nurses

- Keeping your gut healthy 

During my Sunday morning long walk in nature I decided to share some emotions that I have been personally going through.  Along with some insight on how to get through the trauma we all have been through.  

I would love to hear your thoughts on this episode.  Reach out to me on Instagram @leeannehayden or to my website leeannehayden.com to connect. 

In this week's episode, I speak with guest Lewis Schassler.   Lewis was diagnosed with UC in 1985 and chose to have a J-pouch instead of an ostomy.   For over 20 years he knew something wasn't right and kept going to the doctors.  They continued to tell him that everything looked good until he finally found a doctor that listened.   20+ years later they find out the J-pouch had been leaking all along.  Listen in to hear his story! 

Also listen in to learn how he took this knew life and created a business.  His website is ostotees.com

In this week's episode, I speak with Holistic Health Coach Cody Maher about having multiple surgeries to have a JPouch instead of an ostomy.  We talk about the journey from living life as an athlete, to performing in the circus to the struggles she went through and ending up with a J Pouch.  

From her journey, Cody has now changed careers to be a holistic health coach to help others who are learning about their bodies and more importantly how to work through the trauma. 

I am so glad you are joining me this week on my walk.  In this week's episode, I discuss all the new things I have been learning when it comes t our health and longevity.   Listen in to learn more.

In this weeks episode I discuss some tips and tricks and some things that I did to handle coming down with the stomach bug after my trip. A lot of you had some really good questions about what what did I do and how I mentally handled it on top of how did I get myself hydrated again and what do you do with all the bags.

Hello my friend!   This weeks episode is all about my time in Florence and Venice.   Making a new friend who joined me on the trip and tips about international travel!  

Ciao!

today I am coming to you from the Amalfi coast and we're going to talk about the experiences I've had over the last 10 days at the yoga retreat in a Puglia, Italy. One of the biggest things I wanted to talk about was my last night in Rome and how I had a leak when I woke up and how I dealt with it while traveling. So, if you've had issues or you're scared that you may leak in a hotel room listening because I'll tell you exactly what I did.

Welcome to the first of a few new little mini series of traveling through Italy with my ostomy. In this episode I talk about all the things I learned about Rome, the sites that I saw and the things that I learned about the Colosseum, the Vatican and more. One of the most important things that I have learned over the last three days is the need to be hydrated and drink more water than we normally do especially on one days when you're doing a lot of walking. Because let me tell you I did not hydrate enough and I'm  paying for it a little bit now .

So take a listen to this episode of LeeAnne in Rome! Let me know your thoughts and if you want to see any photos I've been posting on Facebook and also on Instagram so make sure to follow me there. Ciao 

Listen in to discover what I saw, what went on and how I traveled. 

In todays episode I talk about how I packed! Listen in and I hope you all enjoy the next few weeks traveling with me! 

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 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, there is a light 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_

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

Intro  (0:00)

• Today’s guest is Amy Hart
• In an Ileostomy due to colon cancer
• Mom to 2 little girls. 
• She has an amazing story, going through Colon cancer THROUGH covid! 

The Beginning Of Amy’s Story And How It All Started (1:28)

• Diagnosed in November of 2019. 
• On the heels of my daughter's birthday. 
• Approaching her birthday, started having a lot of changes in bowel movements. 
• Was always a slow-moving human, but then it started moving fast and furious. 
• Started seeking therapy thinking it was something to do after having children. 
• Chalked it up to PPD or other things, but doctors didn’t think anything was wrong.
• Her body was speaking but did not know what it was saying.
• Intense abdominal pain and cramping. 
• Bleeding began in the stool and it was not just a little. Alternating with feeling sick and not being able to go to the bathroom fully. 
• Emptying bowels completely. 
• Knew something was not right.
• Listen to your family history. 
• Grandmother died of Colon Cancer
• Mother died of Uterine Cancer 
• No concept of genetic testing until was diagnosed with cancer. 
• Had to fight a doctor to give me a colonoscopy because I was so healthy. 
• When they did it, they found cancer immediately and said it was in later stages. 
• Has been a difficult process for her, and continues to be a big challenge for her.
• Knowing this information is so powerful because she will be forever monitoring her body. 
• Have now had other family members get checked because of what she has gone through to make sure they are safe. 

Looking Forward (10:25)

• Wanted to hide away forever after getting her Ostomy
• But THIS wasn’t who she was. How I found her on Instagram!
• A lot of people may not understand it, but they see us through it. 
• She has found confidence that she didn’t have before. 
• She was not easy on herself, she was mean to her and she did not need to be. 
• Didn’t pick this life, but you are doing it and you are owning it! 
• You are not alone doing this.

Surgery & Ostomy (12:18)

• Diagnosis November 2019 through colonoscopy. 
• Then MRI and CT and another colonoscopy afterward to biopsy the tissue to confirm Stage 3B Colorectal Cancer. 
• Genetic testing confirmed Lynch Syndrome
• Predisposition to multiple cancers. Colon, Uterine, Bladder, and Kidney.
• Marker from genetic testing came back at 80% Colon Cancer. So when the Surgeon got that they knew they should be as aggressive as possible. 
• 2 years out of surgery and numbers are still scary. 
• We should all know our genetic testing whether it's genetic testing or something else. 
• After Lynch Syndrome Diagnosis went in for Radiation for 6 weeks. December 9th - January 14th.
• I had a 6 week break then had surgery in March.
• Took the entire colon. - Ileostomy to get everything or less of a chance of coming back.
• Surgeon and Tumor board looked at the case and said to remove the entire colon and everything beneath it. 
• Total Proctocolectomy with an end Ileostomy and ATR reconstructions 
• BIG thing saying if you looked at the inside picture of a body, she would have nothing from the colon down. 
• Reason for that extreme version of surgery is because she is young and wanted to be there for her kids. 
• This is the best thing you can do to have one surgery and have it over with and give yourself the best chance. 
• At the end of the day, it came down to being done with it and not having to worry about all of the “What ifs”

Post Surgery (21:00)

• Came out of surgery and the minute woke up in the ICU would not let the nurse help her with that. 
• That was her way of dealing with it
• Researched how to take care of it and everything so she was ready! 
• Woke up and looked at it, puked then got to it. 
• Because of the lack of personal stuff with covid and not allowing any visitors, gave her a lot of time to get up close and personal with herself and have not spent a week alone in a long time. 
• Forced her to really say are you going to do this and get up or boohoo through this. 
• We all have a choice, everything in life is a choice and we all have these choices. The difference is getting better and getting louder.
• Do have these moments of why me and poor me, and any of us who have gone through something devastating in our life have these thoughts. 
• But LOVE to see the other side of it too. We are still all walking this path.

• “This is the life we have been given and I am going to do what I think is best.”
• Can say this is really hard, I don't want others to go through it, but you can have good days and enjoy life. You can live and walk with it.

Closing (33:00)

• Love the most that you shared about the mindset. The things you went through that it can be a dark path, but you chose not to go down that dark path.
• Live your life the best you can.  We are all doing it and trying to make sense of what our path is. 
• Your story is important so live it! We only get this one and when it's over that is it. 
• Look at it and say, it wasn’t perfect, but I showed up anyway and I had some fun. 
• Find Amy Hart on Instagram. @barefootprofessional @barefootostomate 
• I wish none of us had to go through this, but I am glad it has led us here.