Ep 18: What Death Taught Me About IBD

When your time on this earth comes to an end, where do you want your IBD to be? Will it be a life of continued strife and struggle with this illness or will it be many, many years of quiet, calm, and health? This episode helps us figure out the most useful mindset hacks we need to say we did everything humanly possible to take control of our IBD now, when it matters the most.

In this episode, I’m reflecting on the 3 things the death of my mom taught me about living your best life with IBD.

We’re talking about:

  • The power of living well now
  • Creating a “family” of supporters
  • The roll of willpower, fight, and determination in an IBD treatment strategy

And so much more!

After the episode, you’ll have the mindset tools you need to help you spend the next 20, 30, 40, 50 plus years living the life you deserve. One that doesn’t have you chained to the pain of IBD in your life.

Episode at a Glance:

  • [03:15] What living well has the power to look like in the face of adverse challenges like Crohn’s and colitis.
  • [07:45] When your bloodline doesn’t give you a family that supports you, you can still create a family of supporters around you.
  • [10:05] Finding a supportive possie that has your back and what that can do for your health
  • [10:50] The roll of willpower, fight and determination in keeping IBD at bay.
  • [14:36] The best way to take your IBD healing journey to the next level.

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Mentioned in This Episode:

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Episode Transcript:

[Music]

INTRO: You are listening to The Cheeky Podcast for Moms with IBD, a safe space for moms with Crohn’s and colitis, connect, explore powerful tools for healing and transform our lives to thrive in motherhood and in life. I’m your host, Karyn Haley, IBD health coach, integrative wellness enthusiast, and mom to three outstanding kids. After having Crohn’s disease for 30 years and working as a health advocate exclusively with IBD clients for the last 10 years, I know it’s time to bring the types of candid conversations I have with my clients out into the open. It’s our time to go on an IBD healing journey and do it like only a mom can. Let’s do this.

[music]

[00:51] Hey there dear one and welcome to another episode of The Cheeky Podcast for Moms with IBD. Have I told you lately how much I appreciate you and how much I enjoy spending this time with you each week? How cool is it that we get to connect with each other every Wednesday over our shared journey of healing our Crohn’s and colitis? I don’t know about you, but I think that’s rare and awesome. Thanks for joining me on the journey mama.

Today is going to be a shorter than normal podcast. It’s been a roller coaster of a week for me and honestly, I’m just hanging on by a thread at this point. I told my husband the other day that I was afraid that if he blew on me, I think I’d fall over and wouldn’t be able to get up again. But at the same time, I’ve got these thoughts on my brain. They’ve been running over and over in my mind since my mom died last week and I have to share them with you because I think it’s helping me and I really they it’s going to help you on your IBD healing journey too.

Over the last few months, I watched as my mom’s battle with liver cancer winded down after the most valiant fight I’ve ever witnessed and during this time, these words and thoughts about what dying taught me about Crohn’s and colitis kept going through my mind. They would wake me up in the middle of the night and they would stay with me as I moved through my day.

Over and over… and I thought to myself, I’ve got to share this with you.

I really think these epiphanies I had during the process of my mom dying are going to serve you too, so today, I want to tell you what death taught me about healing IBD.

There’s 3 things:

[03:15] #1: Now is the time to live well.

Emphasis on NOW and WELL.

IS YOUR IBD PREVENTING YOU FROM LIVING WELL, RIGHT NOW?

You’ve got an incurable, chronic illness and that sucks. It brings your mood down, it slows you down from the things you need to do, it might even keep you from saying “yes” to activities you know you would enjoy. Today, you might be 25, or 47, or 63 years old. And I used to hate it when people my parent’s age would tell me, your life will pass you by in the blink of an eye. But it’s just so freakin’ true. In my mind, I’m perpetually 27 years old and I’m newly married, and the world is before me waiting to be conquered.

I swear, all I did was blink and now I have a 19-year-old son. How the hell did that happen? When you blink, just like I did, and many years have gone by, did you struggle with IBD that entire time? Can you imagine 20 more years of what you’re going through right now? On your death bed, will you say I did all that I could to live well now and could you say, I slayed that IBD monster?

5 years ago, when my mom was diagnosed with the dreaded C word, her doctor gave her 3-6 months to live. My mom told me that whether she had 3 months or 10 years, she was going to make sure that whatever time she had, she was going to live it to the fullest. Just like we go to gastroenterologist visits and take supplements or meds or change our diet to help our IBD, my mom did all of those types of things too. We can still do all of these essentials AND keep living our best life.

My mom continued playing bridge. After her diagnosis, she moved to a new community to be closer to me. There was no bridge group there, so she started one. She learned how to play mahjong, she sat on the community council, she headed up the hospitality committee, she sang with the community choir, she did water aerobics, she played poker with her friends every Wednesday night.

During the last 5 years, I kept asking her if she was doing too much. Heck, her schedule was more packed than mine!

She kept living.

She made a choice to suck all the marrow out of life and she did just that.

Even though we have a chronic illness, maybe even because we have a chronic illness, we must find ways to live… now. For you, it might be a book club or a new course about a topic you’ve wanted to learn about, it could be prioritizing date night with your partner, or learning to cook gourmet cuisine, or in a Covid world, finding time to binge watch Bridgerton or Schitt’s Creek.

IF IT BRINGS YOU JOY IT’S WORTH YOUR TIME.

I know on my mom’s death bed, she wasn’t saying, “Gosh, I wish I would have lived.” Don’t let IBD be the reason you don’t live.

[07:45] #2 The second thing I learn about IBD while in the midst of the death of my mom is that family is at the root of lasting healing. Physical, emotional, spiritual, and mental healing.

And that family word means “family” however that looks for you. Family is not always the blood we are born into. Family is the people we choose, the people we are there for, the people who are there for us in times of anxiety, stress, depression, pain, vulnerability… the people who tell us to take action when we are stuck in fear. The people who don’t take our crap and tell us we are out of line. The people who we cry in front of without fear they will hold it against us.

For some, that support is found in their bloodline. For others, it’s found piece by piece. For my mom, it was the latter. She had a very rocky childhood, born legally blind in one eye, enduring countless eye surgeries to try and fix the defect before she was even 2 years old. She endured physical abuse and became a mother to her brother at a very young age. It wasn’t until I witnessed the outpouring of support that came my mom’s way during her last few months that I realized, over the years, from her college days to her nursing career, to her days with young children, to her retirement years in Florida to her last years living in a senior community with my dad—all the while, my mom was collecting a possie of support—a family of sorts— people whose back she had and people who had her back.

Do you have a family like this?

If you found it in your birth family, that’s awesome and something to be treasured. But if you didn’t, don’t wait any longer to find your tribe. And never underestimate the power they can have in your life to help you heal your IBD.

Support is HUGE.

Being able to talk to someone about the difficulties of IBD and celebrate the triumphs too… that’s HUGE. We can have all the medicine or natural remedies in the world, but if we don’t have gal pals to cry and laugh with, the health isn’t as meaningful, and the pain is twice as deep.

AND THERE’S ONE MORE THING DEATH TAUGHT ME ABOUT IBD.

[10:50] And that’s that emotions like willpower, fight, attitude, and a belief in your healing plan do make all the different in the world.

When my mom was given 3-6 months to live, she told me it’s not my time to die. Even though the odds with liver cancer are pretty grim and she was diagnosed with end stage cancer, she just knew 3-6 months was not going to contain her fight.

In the beginning, I thought, “Oh bless her heart. Isn’t that courageous.” As we went on one last trip, celebrated one last birthday, enjoyed one last moment… those moments just kept coming and coming. One year turned into another, and another, and another… and 5 ½ years later.

It wasn’t until the end that I realized… the treatments she was getting were helping, but it was her sheer willpower, her sheer determination to live, to fight, that kept her going all this time. Her doctors were dumbfounded by her, they even created a research study behind what was keeping her going so long, they marveled at her positive outlook on life.

Through bearing witness to this strength, I realized that when it comes to IBD, a belief that you can heal is just as important as what method you choose to heal. Emotions like a positive attitude and finding gratitude in the smallest of moments makes a massive difference for your health.

Your willpower and belief in the healing journey you take can move IBD sized mountains. It doesn’t mean you won’t falter along the way—and of course, when you do, you can always go back to the second thing I learned. Family and support is everything—but even when you falter, keep going, don’t stop, keep the belief in your journey strong. It will get you through the dark days of this illness.

[13:20] So, that’s what death taught me about IBD. It taught me that now is the time to live well. It taught me that family is everything, and it taught me that willpower is just as much a treatment as medicine or natural remedies.

Do you have these beliefs in place? Is there one or two you’re still working on? Well, if my mom’s death has taught me anything it’s that there’s no time like the present. What are you waiting for dear one? Remember, you’ll blink, and 20 years will have gone by. How will you look back on those years? With regret or with pride?

WHAT WILL THE NEXT 20 YEARS LOOK LIKE FOR YOU?

Let’s make the next 20 years a healthy 20 years, no matter what age you are right now. Years you’ll look back on knowing you did everything in your power to keep IBD in the shadows.

I know that’s what I’m going to do. Work in progress, here I come.

Until we chat again, I’m wishing you a cheeky and healthy IBD journey.

Thank you so much for joining me today and for listening to today’s episode. When it comes to IBD, I know there’s a lot of resources out there, and I’m truly honored that you chose the Cheeky Podcast to get your IBD information today. If you found this information helpful, please give us a rating and review. It helps other moms find the podcast and see what we’re doing over here to help IBD moms everywhere. And if you feel called feel a call to do it, share this podcast with an IBD mom who you know could really use an uplifting message today, ’cause that’s what we’re all about over here at the Cheeky Podcast.

[14:36] One last thing, if you’re still with me, and if you are, you’re definitely my kind of gal. We have to get to know each other better. If you’re tired of living on the hamster wheel of IBD with all the ups and downs between flares and remission, if you’re struggling to get control of your abdominal pain, gas, bloating, diarrhea and other troubling IBD symptoms, go to my website. It’s karynhaley.com, and my mom had to be just a little bit different, she spelled my name with the Y. So it’s K-A-R-Y-N H-A-L-E-Y.com and schedule your very own free 30-minute IBD root cause trouble-shooting session with me where we discuss the challenges you’ve been having, we set goals to help you move forward, and we talk about how we can work together to help you get your life back. It’s a power packed 30 minutes. You don’t have to live in IBD status quo. There’s so much that can be done to transform your life so you can thrive in motherhood and thrive with IBD. I’ve seen my clients walk this path and it gives me so much joy to take that journey with them.

My entire coaching practice is run online, so you never have to leave your house and you never have to get out of your jammy or yoga pants for us to work together. You know I’m wearing them to. If you’re ready to take your first amazing step towards healing, I’m ready to chat with you. Schedule your free 30-minute IBD root cause trouble shooting sesh today at karynhaley.com. Click on the work with me tab and I’ll see you soon. It’s important to note that the information in this podcast and in this episode is for general information purposes only and not intended to be a substitute for professional medical advice. The statements made in the Cheeky Podcast for moms with IBD, either by me or my guests, is not intended to diagnose, treat, to cure, or prevent any disease. Before implementing any new treatment protocols, do yourself a favor and consult your physician first.

Thank you so much for listening, for being here, for saving this space for us to spend some time together. Until we chat again, I’m wishing you a cheeky and healthy IBD journey.

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