osotmy

Hello, beautiful souls! I'm LeeAnne Hayden, your host, and I'm thrilled to welcome you to another inspiring episode of "The Beautiful Bag Podcast." Whether you're tuning in during your morning coffee or unwinding at night, I want to express my deepest gratitude for being a part of our amazing community.

Episode Highlights:

1. A Personal Journey: In this episode, I wanted to share my own journey dealing with blockages and how it has affected my life. For those who might not know my story, let me give you a glimpse into my world.

2. Life Before My Ostomy: At 39 years old, I was deeply immersed in corporate America that turned into a successful run in network marketing. 

3. The Unexpected Turn: Despite my commitment to a healthy lifestyle, I started experiencing discomfort and growth in my abdomen, leading to an unexpected diagnosis of a rare sarcoma tumor.

4. The Ostomy Surgery: After two surgeries and the removal of the tumor, I was left with an ostomy, which I've now had for nearly 8 years. This marked a significant change in my life, but it also allowed me to continue pursuing my passions.

5. The Battle with Blockages: Over the years, I've had to navigate the challenges of ostomy life, including dealing with blockages caused by adhesions. I've learned some valuable lessons on how to manage these situations.

6. Tips for Coping: In this episode, I shared tips for dealing with blockages and abdominal discomfort. One surprising remedy is sipping on Coca-Cola, which can help alleviate symptoms. I also emphasized the importance of hydration and listening to your body's signals.

Conclusion: Living with an ostomy is a journey filled with ups and downs, but it's essential to stay informed and proactive about our health. Remember, your body is unique, and what works for one person might not work for another. The key is to pay attention to your body's signals, hydrate, and seek medical advice when needed.

Thank you for being part of "The Beautiful Bag" community, and if you found this episode helpful, please consider sharing it on social media and tagging me @LeeAnneHayden on Instagram

Intro  (0:00)

• This episode is about my journey for my new listeners. 
• I have shared a lot of other stories with others, but it is rare that I share my story often and my Ostomy journey. 
• What led me into having an Ostomy.
• What I have done over the years.
• Cancer and ending up in an Ostomy.
• My mindset and my growth.

 

How It Began (2:19)

• Back in September of 2015 I was working in direct sales, built a large business, and joined a company with Tyra Banks in her cosmetic line. 
• I wanted to be a part of her affiliate program. 
• Was selected as the first 200 people to start that company in the direct sales route she was taking. 
• I was busy all the time and building my team, but something didn’t feel right. 
• I was 44 years old at the time and my periods started hurting and were very painful. Sweating a lot so I just assumed going through menopause. 
• Summer of 2015 I earned a trip to go meet Tyra in person, but couldn’t go to meet Tyra not feeling good. 
• The doctor did an exam and immediately saw something. Thought it was just a cyst, but because of family history they thought I should just go and see an oncologist. 
• So I went to meet Tyra then came home for my doctor's appointments. 

 

After The Trip (5:42)

• Doctors' appointments after I got back showed that I had something called Lynch Syndrome. 
• This leads to Colon Cancer, Uterine Cancer, and those types of cancers. 
• The oncologist said we can do a full hysterectomy and take everything out. Test it and make sure it's not cancerous. 
• Had surgery and a full hysterectomy. And everything there was clean with no signs of anything. 
• However, they didn’t get the “blob” out. It was still there. 
• So far embedded into the pelvis floor that they could not reach it. 
• The colorectal surgeon said to leave it there while I heal from surgery. And then they can do some testing on it to see what is there. 
• Biopsies, CT scans, and samples were sent off to another hospital to be tested. 
• Looked like a soft tissue sarcoma. And wasn't sure the type of tumor it was. 
• 2 months of its just cysts, no big deal. 
• 2nd surgery date was January 15th 
• Between that kept going back and forth wondering if it was cancer. 
• And knowing what the outcome could be, I did not want to be in a bag.  I wanted to be able to beat it without having to remove everything. 

 

Mindset Spirituality (10:20)

• Had too much living to do and things I wanted to do in life. Could not let this take me away from that life. 
• Meditated for years, and would just meditate to understand why I was going through this. 
• I sat with myself a lot to just listen and find my purpose as to why this was happening. 
• Ask the tumor why it was here, what was I to learn from it?
• Slow down, stop working so hard, spend more time with family. 
• The only way to save my life was to end up in a bag. 
• Had a few successful businesses, top 1% of direct sales. 
• Came with a lot of work. 
• Day and night 
• Had a lot of stuff, but at the end of the day, stuff doesn’t mean anything. Money is great but I needed to slow down. 
• I would meditate on my body being healthier, running health through my veins. 
• I prayed a lot. I am a spiritual person and I prayed so much. 
• I started reading the Bible and through those months and that year, I read the entire Bible.
• I tried to understand the words and I meditated on those words and passages. 
• Felt closer to God.
• There is something bigger out there and more than where we are today. 
• There is something more that we cannot see, but it is very close to us. 
• I could feel the energy around me at times. 
• I felt closer to God than I have in a while. Had a connection to Him right before surgery. I could feel Him touching my shoulder, and I felt a sense of peace and calmness run through my entire body. 
• I knew no matter what happened out of this, it was going to be okay. 

 

After Surgery (17:40)

• Came out after a 9-hour surgery. 
• And immediately asked the doctor if we got that blob! 
• And I knew at that moment I was in an Ostomy bag. 
• I fought this so badly. I THOUGHT it was ugly, I thought it would ruin my life. 
• I got up walking and moving because I wanted to get to California to see Tyra again for the 2nd time. 
• Out of the hospital Tuesday and on a plane Saturday!
• I needed to do that. I believed there was something bigger out there and for us, I knew I had so much I needed to share. 
• My journey wasn't over. 
• Came back from California and shared my story, but I am not running as hard. 
• Moved to NYC for 3 years, and stopped working so hard in the direct sales. 
• Don’t want to build a team right now, but still share products with a company I am in and I share what I love. 
• My journey isn’t there anymore. It's here with you guys talking to you about my Ostomy and doing this podcast and bringing awareness to this lifesaving medical device.
• At 51 years old I just signed a contract with an acting and modeling agency. And this brings me to the point of our lives never over. Our journey and our lives are ever evolving. 

 

Closing (22:00)

• There is a reason why we ended up in an ostomy and why we are in one. 
• Slow down your life? Or live bigger? 
• Someone you will inspire? 
• Whatever that is, there is a reason you are here and give us a second chance at life. 
• You are in this position for a purpose and you are making a difference whether you know it or not. 
• I thought it was important for me to share my cancer journey with you all! 
• “Regardless of whatever is going on, we are beautiful and it does not matter. So know that life doesn't have to be different. Yes, there are going to be struggles, yes, there's going to be things that you're going to have to overcome. But it's through that journey that you learn how strong you are and on the other side you are always so good!”
• What you believe is true and you can do anything you put your mind to. 

Intro  (0:00)

• This week we are talking with Cristina Falbo 

• We met in our Facebook Group Body Positivity With An Ostomy

• I wanted to bring her on because of her story and how it is similar to mine. 

A Little Bit Of Your Ostomy Story/Cancer (0:57)

• Have Ostomy because of Cancer

• Had cancer in 1995. Cervical Cancer.

  • Right after had her son.

  • I could not have any more children after that

  • Stage 3 

• Had a colostomy during some of those treatment periods. 

• Happened 27 years ago.

• Had to have the colostomy then, things were not as good then as they are now. 

• DIfficulties with adhesives, obstacles with not really having any good Stoma Nurses available. 

  • Kind of on your own, learn as you go.

• 2015 and I was diagnosed with terminal cancer. 

  • Cervical cancer. Recurrence of original cervical cancer. 

  • Surprised because they don’t usually see a 20-year gap with that. 

  • Told terminal by 3 different Chicago hospitals. 

  • No surgeon would take on my case. 

  • Too complicated and would have ended my life. 

• Ended up getting 1 more opinion. 

  • My husband pushed me to get another opinion. 

  • Went through all the testing and they said they would be able to help me.

  • Top 100 surgeons in the country who were going to help me.

Emotional Rollercoaster to Keep Going And Didn’t Give Up (4:58)

• Was stressful. 

• Glad I had my husband by my side to help support me through that. 

• Had 5 children, 2 of them in college, I was now going to be out of a job so this was a big concern.

• Concerned that if I passed, how would it affect her family.

• Just wanted them to be okay. 

• Husband had talked about doing all kinds of possible treatments before we found the surgeon. 

  • Looking for any possible opportunity to save my life. 

  •  Researching, sharing information, and finding options. 

• Just training to maintain sanity day-to-day. 

Leading Up To Second Surgery/Treatment (7:20)

• Attended a friend's wedding right before the surgery. 

• Was a nice distraction to be with them and spend this weekend with them. 

• Soaked up and enjoyed every moment of that little vacation. 

• In preparation, it is probably the best thing you can do. 

  • Live in the moment

  • Something I try to do every single day. 

• Day of the surgery, I woke up early, fixed myself all up with hair and makeup.

Surgery (10:13)

• Did you know being in an Ostomy was the option?

  • Yes. I Was told that I would have both a permanent Urostomy and Colostomy. 

  • After surgery though they said it would be possible to reverse the Colostomy. 

  • They did reverse that but then had to go back into that. 

  • That was a decision I had to make because of my lifestyle. 

• Lifestyle. What was it like? What made you say go permanent with it? 

  • Gotten to the point where I could not go out or did not want to. 

  • Was afraid to go out.

  • Could not live in the moment. 

  • Lived in fear of having an accident. 

• It got to the point where I didn’t feel like I was truly living. 

• Had blockages, was uncomfortable, was in pain, and finally said enough is enough. 

• When I woke up from getting the Ostomy I was so happy. 

  • “The happiest person to wake up with a Colostomy she ever met!!”

  • Was happy because I felt like I was finally free.

  • A lot of people look at it as a restriction of freedom, but I was FINALLY free!

  • Immediately woke up without pain. 

  • Finally I knew that I was going to be able to do things.

What are some things you have been able to do now since having the permanent ostomy? (13:49)

• Was my dream to retire to Florida.  Planned to do this one day. 

• While in the hospital when I had a blockage and decided to get the colostomy, my husband came into the room and taped pictures of houses in Florida all around the room. 

• Said let’s go now, so it has been pure heaven. 

  • Bought a house with a pool, it was a MUST!

  • Have so much fun, love the home and the pool. 

• Entertain at home, friends come to them a lot. 

• Go on vacations, go on cruises. 

• Start planning time with all of our family. 

  • Think about what is important, and always come back to your family. 

Swimming With Bags (17:53)

• Knew my appliances before I had a pool.

• Knew how they reacted with water and warm water. 

  • Pool is saltwater so it was a bit of a learning curve. 

• Have a hot tub and can go into that. 

• Use a longer wearing bag when swimming. 

• Make sure to let it cure/have a time to let adhesives seel. (24 hours before go swimming) 

• Can’t think of too many other restrictions. 

• Have swimwear designed for Ostomies. 

  • Have some that are not designed for it either. 

  • Have a 2 piece that is the most comfortable, makes it easy to make adjustments and bags fit right inside of the suit. 

• Take care of the Ostomy when I need to. 

• This has not impacted my enjoyment at all. 

• I Grew up being a summertime pool person, and if I eliminated this from my life, I wouldn't be true to myself. 

• “I am going to enjoy every part of everything I possibly can!!” - Cristina

• “But the most important thing that you've said, these last 2030 minutes, is that you are being true to yourself. You are honoring who you are, you are living your life, you don't really think about it, you just take care of things when they need to be taken care of, and your family. And everything you do is just surrounded by that. And I have to praise you for that!” - LeeAnne

What are some of the things you do to help you live in the moment and stay in the moment? (22:38)

• In the process of being evaluated for a Kidney Transplant. 

  • One of the things that came out of the cancer. My Kidneys were damaged.

• There are a lot of things that could eat me alive, wIth worry and anguish and concern. 

• I have been on my deathbed 2 or 3 times now. 

  • I have fought death before a few times and won and that is part of it!

• Bigger part is, when you really explore all of the “what ifs”.. There are so many possibilities to one situation that your ability to control any of those things that are going to happen, are just not within our own personal ability. 

  • Knowing that made me let go of those things. 

• When I have those days that things pile on top of me, I have to give myself a break and a treat! 

• I am trying to constantly keep myself grounded. 

  • Use the phrase “Live in the moment.” 

• There is not a beginning and an end to things.  We are all in a process.

• “Have I done enough in life? Am I doing everything I should do in my Life? Am I on the right path? And the truth is, I think that we are all right where we were meant to be on our path. And we are doing it right now. We're not looking at the future of what we're gonna do. You can't look in the past and undo anything that's already there. You're doing it right now. We're doing life right now. Every moment.”

Closing Thoughts (28:51)

• People with Ostomies or new Ostomies seem to find me all the time. 

  • So many people are so afraid and it is a scary process. Just brace for it. It is okay. 

  • You are doing what you are supposed to do. 

  • You were led to this point in your life and this is where you were meant to be. 

• You can’t plan for this, prepare for this. But just know it is going to be alright. 

• Hold your head up high. You have been through A LOT of stuff!

  • If you have come this far, look at all you have gone through. 

  • You are winning because you are still here.

• It really is an amazing life, and my life is not done, I am not over it.

  • Has adjusted and learned the tricks on how to get through different situations.

  • You make these adjustments and they become second nature. 

• Hold your head high, you have DONE SO MUCH

Reach Out To Cristina (33:27)

• Find her in the Body Positivity Group.

On Facebook under Cristina Herleinn Falbo.

From super healthy, to waking up with intense pain from a kidney stone, to finding cancer within such a short period of time at the beginning of 2020.

Tom’s life changed dramatically with 1 visit to the ER.

He had stage 3 cancer that required him to get a Urostomy and a Colostomy, completely changing his life. But with the support of his wife and community, he was able to come out on the other side with a new outlook.

Tom and his wife came out of this experience just wanting to help people who are going through this and have gone through this in any way that they can! That is their goal to help as many people as possible!