After 35 Years With IBD: 5 IBD Breakdowns That Turned into Breakthroughs
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It’s the big 5-0 (episode 50) and I’m getting personal to celebrate this milestone.
Thanks for hanging out with me over the past 50 episodes and for stopping by each week for your dose of IBD information from a food, lifestyle, and mindset perspective. I appreciate you more than you know!
Throughout episodes 1-50, you’ve heard others share their story. You’ve heard me talk about my clients, but I haven’t really shared a lot about my IBD journey, up close and personal, warts and all.
You’ve even sent me some really lovely emails asking why I do the work I do and why I started this podcast. You asked for a while now, so here’s goes nothing.
Today, I’m getting vulnerable, taking a break from my introverted self, and pulling back the curtain to share a few things I’ve learned in my 35-year Crohn’s experience with 5 breakdowns that threatened to take me down, and 5 breakthrough paths I chose to take instead. There’s lots of heartache in this one, but with lots of triumph thrown in too. Hope you enjoy and that some part of the episode speaks directly to you.
We talk about:
- The dangers of using prednisone steroids long term
- How bad 80’s hair isn’t so bad when you consider all the other bad things that happen in this life
- Why gut healing food isn’t the only answer when it comes to keeping your IBD in remission
- How you can get through any embarrassing IBD bathroom situation with a little stealth and a lot of humor
- How everything in your IBD life comes back to your Wheel of IBD Wellness
And so much more!
After this episode, you’ll definitely have your answer to why I created this podcast and why I do the work that I do. And most of all, I hope this information sparks some inspiration for you to keep fighting when you want to give up, keep asking questions and finding answers, and always, always be the one in charge of your healthcare.
Episode at a Glance:
- [06:24] How bad 80’s hair isn’t so bad when you consider all the other bad things that happen in this life
- [15:50] What a Sitz Bath is and why it could be your best friend when you Crohn’s or colitis rectal involvement
- [16:49] How you can get through any embarrassing IBD bathroom situation with a little stealth and a lot of humor
- [20:55] The dangers of using prednisone steroids long term
- [22:15] The benefits of having a supportive mom by your side
- [32:01] How you’ll need to pivot your IBD plan many times in your lifetime
- [35:00] Why one particular infertility doctor is stupid
- [37:53] Why you shouldn’t get cocky when it’s 10-0 in the 7th inning stretch
- [45:15] Why gut healing food isn’t the only answer when it comes to keep your IBD in remission
- [46:36] How everything in your IBD life comes back to your Wheel of IBD Wellness
- [53:10] The best way to take your IBD healing journey to the next level.
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Mentioned in This Episode
Episode 30: I’m Doing Everything Right, How Come I’m Not Better
Episode Transcript:
Welcome to episode 50 of The Cheeky Podcast. I can’t freaking believe it. Our little engine that could is raising our consciousness and giving hope to women all around the world that we mamas with IBD, we are bad assess and we will never give up, and we will never stop finding the true healing path in all of us.
Podcasts are and amazing invention, aren’t they? Connecting us to each other so we can find ways to help our Crohn’s and our colitis and I’m really proud to be a part of that.
Have you been with me since the beginning? You go girl! Joined halfway through? Amen sister friend? Maybe this is your first episode. Welcome aboard! No matter when you joined the conversation mama, I am so happy to have you here, I’m so grateful for you and I can’t wait to share some IBD wisdom with you in this special and very personal episode #50. Buckle up, because it might just be a bumpy ride.
Here we go!
Hey hey dear one. I’m so happy to share this time with you today. It’s episode 50. Whoo, hoo!! We made it. And to celebrate, would you do me a favor? Whether this is your first or 50th time with The Cheeky Podcast in your ears, if you’re enjoying the information, would you please take a minute to give us a positive rating and review in itunes? It helps other IBD mamas hear about all the IBD goodness we’re putting out each week. Thanks dear one, I appreciate you. Now we’ve got lots to talk about today.
Like I mentioned at the top, this is episode 50 and throughout the weeks and months that the podcast has been on, you’ve sent the most lovely and supportive emails and several have asked me to do this for quite a while. You tell me that the how to’s have been valuable in your healing, and you’re loving the interviews, but you’re wondering why I haven’t shared my story yet. What made me want to start the podcast? What’s my IBD story?
If I’m being really honest with you and with myself, I’ve put off talking in depth about my IBD story because I’m just not that comfortable being at the center of the story. I love telling client stories, talking about what I’ve learned on my IBD journey, but talking about myself, my mama always taught me the best way to shine is to shine a light on someone else.
But today, in honor of the big 5-0, I’m going to swallow my introverted nerves, and put it all out there, my Crohn’s story—at lease the parts I think will benefit you. I hope it inspires you in some way, to see your story in my story, to keep pushing forward, to never give up, to believe in your power, to know the strength and value of what you bring to the table with your intuition and insights– through all your provider interactions, and ultimately how you have the power to take charge of your own healthcare decisions. That’s the main thing I’ve learned in my 35 years with IBD. So, I’m getting vulnerable with 5 breakdowns I’ve experienced in my time with IBD and how I was able to turn those breakdowns into breakthroughs. Maybe you’ll see a bit of what you’ve gone through in my story, and insights to take with you for what you have yet to go through on your IBD journey.
Let’s go ahead and dive in with breakdown to breakthrough #1. It all starts with the diagnosis.
Like so many with Crohn’s and colitis, my story begins in a hospital.
At 17 years old, I was just graduating from high school, ready to go to college 3 ½ hours from home to study dance with hopes of continuing my dancing career that started at age 3.
I was ready to take on the world!
[06:24] And let me give you just a little more context into where I was at, at that time. In my nuclear family, I was the “baby” in a house full of boys—the only girl with 3 older brothers- or more accurately, it was more like having 4 fathers who loved to watch my every move! I grew up in an upper/middle class family in the privileged community of Orchard Park, NY. Go Quakers! I was fairly sheltered, moderately spoiled (although my brothers would tell you mega spoiled) and through most of my life up til that point, my biggest worry was “Do I have enough hairspray to hold up my big 80’s hair?”
But back at the hospital, I was coming out of exploratory surgery where a colorectal surgeon was trying to find out why I kept having bloody poops and why I had several rectal fissures (tears in my rectal lining that bled when I pooped or sat down, or stood up, or moved…).
“Hrfmmmbbrrrr….. Croobsh Distreshffff….. Vefishr Siknerth…..”
No need to adjust your earbuds. These are just the sounds I woke up to as the anesthesia wore off after surgery. I can still hear it in my head today, these muffled voices and I remember seeing a blur of people I vaguely recognized as my parents and my doctor. They were talking in hushed tones like people do in a hospital. I remember, I couldn’t make out what they were saying, just those mumbles. And the image lasted only a moment and I was out again, blissfully unaware that my life was about to change forever. When I think back on those last moments of unknowing I had IBD, I wish I would have known that change was coming. I wish I would have fully embraced those last few moments of true childhood innocence.
As many loving parents do in a situation like this, mine tried and shield me from the emotional and physical pain they knew would follow. Even when recover and wake from surgery, they didn’t tell me anything. They said “the procedure went well” and “we’ll talk when we get home”.
This isn’t the first time I have been shielded from the truth.
Since I was 14, strange symptoms were creeping up with no known cause. I went from stomach pain to esophagus pain to canker sores in my mouth and finally to bloody poop. Well-meaning doctors diagnosed me with everything from Esophagitis to Endometriosis.
It seems crazy to me now that they didn’t put 2 and 2 together. Or if they did, they were clearly getting 5!
So many of us have experiences like this before we get our IBD diagnosis. I’ve heard about this happening over and over from GLC members and clients—that it took years to get a proper diagnosis.
I have no clue why it takes so long.
At the time, when I was getting all these non-IBD diagnoses—for 3 years, I didn’t question anything.
I never asked, “Why would an otherwise healthy 14-year-old girl have esophagitis?” In hindsight, I feel kind of stupid for not asking the right questions, but I don’t even know what the right questions would have been.
THE DIAGNOSIS THAT CHANGES MY LIFE
A couple days after that surgery, my parents sat me down to tell me the truth, “The doctor did a biopsy while you were at the hospital and discovered you have Crohn’s Disease.”
You know exactly what my response was, I know you do. What’s Crohn’s Disease?
I didn’t know what Crohn’s was, but I knew the word DISEASE and it definitely didn’t sound good.
At 17, I endured my first real breakdown moment in life when I got that diagnosis. Can you think back to that moment for you? When you got that diagnosis. It sucks right? Definitely a breakdown moment. Maybe a little bit of a relief because now you know what you have, but at the same time, it still sucks.
For me, sure, I had had some teenage challenges before this. I had boyfriends dump me, got through catty girl stuff and actually endured some pretty nasty bullying in middle school, but this breakdown, this IBD diagnosis was different. It made the other teenager challenges seem silly and frivolous.
The good news is that with this breakdown, I didn’t stay in the broken phase very long.
Even though any sort of physical healing from Crohn’s was still 20 years away for me, this physical breakdown of my body, led to an emotional breakthrough that still carries me through every challenge I encounter in my life.
Something I have to tell you as a side note, before I go any further is that I come from a long line of really strong women. Great, great grandmothers and great aunts that immigrated from Italy with nothing. An Italian grandmother I called Nana who lived a life of only going to school until the 4th grade, never owning a single toy or a doll, marrying an abusive husband, yet still carrying on– always bringing me to laughing tears with the stories she would tell.
And my mother, who underwent multiple eye surgeries—6 or 7 I think before she turned 18 months old—throughout her life, she was legally blind in one eye. When my mom was 77 years old, she was diagnosed with liver cancer. Her doctors gave her 6 months to live, but she lived 6 years—mainly out of shear willpower and faith.
The Train Leaves the Station
It’s because of these remarkable women in my life that after I graduated from high school and was diagnosed with Crohn’s that it was just expected I would carry on, strong and confident, that I could get through this, no sweat. The strength of the maternal women in my life got me through that first blur of a summer with multiple doctor’s appointments, multiple medications and a new lifestyle to adjust to.
In July, the summer I was about to turn 18, I remember vividly a conversation I had with my mom where I said to her, “Mom, I don’t think I can go to college anymore. I’m so sick. I’ve lost so much weight. I’m so scared of how I will make it at college 3 ½ hours away from home.”
My mom didn’t miss a beat. In a loving way she sat me down and said, “It doesn’t matter that you’ve been diagnosed with Crohn’s, Karyn. You will get through it. What’s more important is that the train of life is leaving the station. If you don’t get on the train, Crohn’s be damned, your life will pass you by.” That was all the discussion we had about it. I went to college.
With support like that, there’s no room for self-doubt.
My first physical breakdown of the diagnosis of Crohn’s that turned into an emotional breakthrough happened when I went away to college two months after being diagnosed and I am eternally grateful that my mom didn’t let me wallow and lag behind. College still holds some of the best memories and life lessons I could ever imagine.
IBD and College: Life with Crohn’s in a College Far Away
Breakdown #2
Breakdown #2 that turned into a breakthrough picks up my story about where we just left off. The breakdown begins as soon as I hit the college dorms.
It involves a sitz bath, 5-ASA medications that didn’t work, a year’s worth of steroids with 20 lbs of weight gain, face mooning, and finally becoming suicidal.
Let me break down my breakdown for you.
So, I have to start off first with complete honesty. While I was at college, I did engage in the typical college antics—parties, drinking, sorority life— but much of my college life, as I’m sure you can imagine, having IBD too— it was different than those around me.
When I went to college, I was having really painful poops. Like cry out in pain when I pooped painful. Those rectal fissures I told you about earlier? Still there, except now I had more of them.
[15:50] It hurt so much to poop, that I had to use this contraption called a Sitz bath when I went #2. Have you heard of these? If you’re having painful poops, maybe a Sitz bath can help you too. Basically a sitz bath is a plastic, round bucket that sits on your toilet seat. You fill it with warm water and do your business in the water filled sitz bath, then flush all the contents down the toilet. In my experience, the warmer the water the better. It definitely lessens a painful poop when you have fissures or hemorrhoids.
Every time I had to poop my freshman year in college, I’d go to the community toilet in the dorm (yeah, one of those gross community bathrooms everyone on the floor uses), I’d go in there hiding the Sitz Bath, a jug for the water and a towel to wipe my bum in a duffle bag. I’d try to go to the bathroom when no one was around so they wouldn’t see me filling the water jug at the sink before I went into the bathroom stall. I was super self-conscious that someone would ask, “why the hell are you filling a water jug and taking it into the stall?”
Sometimes I was stealth and no one walked in.
[16:49] Sometimes, my dorm mates would see me and give me really strange looks, but thankfully they never questioned it—at least out loud.
I can laugh about the ridiculousness of it all now!
Freshman year, there was also the rectal abscess I endured where I got a high fever from the infectious, puss filled, hard, sack in my butt. My doctor inserted a tube just to the right of my rectum to drain it. I had to keep it in for moths, and I hobbled along, even danced in a showcase performance, with this small tube sticking out of my butt. It sucked.
Someone please tell me that the treatment for rectal abscesses has advanced over the years. That’s just crazy!
But the worst part of my college experience happened my sophomore year when my disease had progressed beyond Dipentum, Asacol, Pentasa and antibiotics like Flagyl and Cipro.
Shout an “Amen” if you remember any of these oldies! They’ve all been replaced with other, hopefully better, 5-ASA’s now.
My doc told me it was time for steroids— specifically prednisone. And of course this was a point in my life where I was a good little patient and did what I was told. If my doc said, steroids, I said, sure! He mentioned to me about the weight gain, the “mooning” of the face, the acne that might follow… but the part about the emotional symptoms that might come up… not so much.
Plus this was in the early 90’s. The days when steroids were given long term. After one year on these toxic drugs, I was teaming with anger outbursts, I was so moody my friends never knew if Dr. Jeckle or Mr. Hyde would show up, I was being teased with guys telling me, “You missed the freshman 15 and decided to gain the sophomore 20, huh? And finally it was the long term depression that set me into a downward spiral and messed with my mind. Eventually I started having thoughts of suicide.
Talk about a massive breakdown. How could this possibly turn into a breakthrough? Again, it took my remarkable mom stepping up and stepping in.
[20:55] One day when she was visiting me at college, I told my mom that I had started to feel suicidal. Again, this unflappable lady, she didn’t miss a beat. She marched me straight to my doctor’s office—I remember we definitely didn’t have an appointment—she demanded that the doctor see me immediately. I don’t think we even waited in the waiting room (maybe because the staff was afraid of others encountering my mom’s wrath) and when the doctor came in, she told that doctor that he was to immediately taper my steroids. She was appalled that they had kept me on them for so long and that they had better come up with a new solution, pronto.
Of course, I can’t claim with 100% certainty that it was the steroids, but I do know that I was never suicidal before prednisone, and I have never been suicidal since.
Thank God, it isn’t standard practice to keep patients on steroids so long term anymore. I feel confident that this breakdown won’t happen to you.
Breakdown to breakthrough #2: suicidal on steroids to mama saving the day.
Breakdown to breakthrough #3 takes me from painful years of infertility to finally having the blessing of three amazing children. Let me tell you about it.
If you’re listening to this podcast, chances are you’ve got kids. You’ve got Crohn’s or colitis and you’ve got kids. It’s a real struggle isn’t it—kids and IBD? I’ve definitely had my challenges being a mom with Crohn’s, but I wouldn’t change it for anything. I think I always new I wanted to be a mom—from as long as I can remember, but there was a time in my life when I thought my IBD would keep me from my motherhood dreams.
IBD and Marriage: Is he husband material?
For many, many years, I followed the advice of my doctors. I followed the conventional path. I was still following the advice of the medical professionals who told me that food had nothing to do with my illness when I met a man that changed my life. He was a friend of my brother’s, studying to be a Psychologist at the same graduate school I went to.
You’ve met my head shrinking, coffee drinking, hubby on the podcast. He’s made an appearance or two.
We met on a skydiving trip—something we’d probably only do in our younger years. After that, we became inseparable.
He’s been there through all of my Crohn’s hell and my bowel resections. I remember vividly when he held me in his arms and let me cry until I couldn’t cry anymore after I told him 4 ½ feet of my small intestine had become the size of a string of spaghetti and doctors were going to operate to take that part out.
He was there again for my next bowel surgery when 4 ½ feet was removed again. But the best thing he ever did for me was to stand by me and our marriage when I broke down, thinking we’d never be able to have children.
IBD and Infertility: Can I have a baby please?
Within a year of getting married, Bill and I started trying to get pregnant. With my Crohn’s history, I was worried it might be a struggle to get pregnant and I was right. After two years of trying to conceive, we still weren’t pregnant. We tried temperature readings, fertility drugs, scheduling sex at certain times of the month…. it was really stressful!
I remember saying to Bill, “I don’t know if we’ll ever be able to have a child. If you want out of our marriage, I will understand.” Bill, my rock, said he was with me for the long haul. He wasn’t leaving just because we couldn’t have children.
Of course, we thought about adoption. We didn’t care how we became parents. We were seriously considering it while we also going through fertility treatments. I remember one idiot fertility specialist we met with—and trust me, I don’t use that word often or lightly and I understand how derogatory it is, but this doctor deserves it. He told me that the reason I wasn’t pregnant was because besides having Crohn’s I must also have anorexia because I’m so thin. He told me to get help for my anorexia and then I would be able to get pregnant. I didn’t have anorexia! In the words of Hermione in the first Harry Potter series, “What an idiot.” He truly didn’t get Crohn’s or colitis at all.
Just when I was at my lowest point, hormones raging from fertility drugs, we conceived our first child through a fertility procedure called IUI. I remember getting the phone call from the doctor telling us we were pregnant and literally dropping to my knees in pure joy and astonishment. After such a dark times, what a breakthrough! And to my surprise getting pregnant my first time set off my fertility juices because I got pregnant two more times after that. We have three beautiful boys now—two of them grown men– and I feel so blessed that they are a part of my life every day.
Breakdown #3: years of infertility to the miracle of 3 kids. What a breakthrough that was! If you’re struggling to get pregnant, please don’t give up hope. I’m so grateful that I kept trying.
Breakdown to breakthrough #4
[36:01] Probably the biggest breakdown to breakthrough I had in my almost 35-year Crohn’s journey was going from looking at my illness from an approach of making no decisions and no moves on my own, looking to everyone else for answers, keeping the power and the knowledge outside of my control, which by the way got me nowhere. Not once in those 20 years did I ever feel well. Not one day. And the breakthrough that emerged from this breakdown was the biggest transformation and mindset shift of my life.In 2007, our family move back to the states. We had been living in England for 4 years while my husband was in the Air Force. He was getting out of the military, and we were settling in Maryland.
I wasn’t feeling well.
I was a mom with 2 little ones, 17 months apart. I was running myself ragged. I was stressed.
The immunosuppressive drugs I was on wasn’t suppressing my Crohn’s symptoms, but it was suppressing my immune system so much that I was constantly fighting off one infection after another.
I went to a new gastroenterologist who ordered a colonoscopy and endoscopy.
When the tests were complete she gave me this news, “There’s nothing else I can do for you. You’ve had so much of your small intestine taken out that you shouldn’t have more surgeries. You should wait and hope for a small intestinal transplant.”
Of course, medicine hasn’t advanced that far yet!
I was devastated.
I’ve done everything I was told to do for 20 years. I listened. I took all the medication, as prescribed. Endured pooping in a bucket, a rectal abscess, steroid rage and depression, and 2 bowel resections. How can you be telling me there’s nothing else I can do for you. It felt like the medical community had failed me.
What the hell do I do now?
In that moment the mantra my mom taught me 20 years earlier, back when I chose to go to college instead of climbing in bed and staying there was pounding in my head—-
“The train of life is leaving the station… The train is leaving the station…”
And then it hit me. The medical community may have given up on me, but I still have hope.
I raced home from that doctor’s appointment and ran to my basement where books and trinkets are packed high in boxes. I search and search until I found Breaking the Vicious Cycle—the book Elaine Gottschall wrote about the Specific Carbohydrate Diet.
Even though I had bought it and read it 5 years prior, at that time it just read like Greek to me. Gluten free, grain free, dry curd cottage cheese, almond flour, homemade yogurt? Know one was talking about gluten back then. I was not ready to hear it. But this time, right then and there, as I read it again, cover to cover, highlighting so much that all the pages looked bright yellow, taking notes in the margins… this time, for some reason, it made sense.
Somehow in that moment, the breakthrough just washed over me. I just knew that the words in this book were the step-by-step plan for my future.
Gluten Free/Grain Free Eating Takes a Village
I also knew that healing like this wouldn’t be easy. It wasn’t healing in a magic pill. It was hard work. It took time, but finally, after 20 years of hell, I knew it would be time well spent.
So even though I knew that this was the path I needed to take, I was still daunted. It was a whole new way of eating for this Italian girl who lived on bread, pasta, cereal, and mashed potatoes.
Even though the internet was not what it is today, I scoured and scoured until I found an SCD expert. A Health Coach who showed me the ropes and walked me step by step through the maze of SCD “legal” and “illegal”.
I had never heard of a Health Coach before, but I jumped in with both feet with the clarity of a woman who knows she is on the right path for the first time in a long time, maybe the first time in her life.
The SCD Diet: Game Changer
So, I did the SCD intro diet and to be really honest with you, it kind of sucked, especially in the beginning.
I ate like a baby. Mashed bananas, homemade fermented yogurt, pear sauce, carrots cooked until they were mushy, chicken broth…
Those first few days, I missed my old food and I felt like crap.
But as the weeks went by, my crappy symptoms began to disappear.
My stomach pain was gone, completely GONE. My diarrhea began to improve. I couldn’t believe it
I hadn’t felt this good since my early teens!
On the SCD, my initial plan was to try to go off all my meds in one year, but after just 6 months, I felt so good, that I just went for it.
It’s been 13 years since then, and I’ve never regretted my SCD decision. Not once. The SCD saved my life.
Breakdown #4: From “there’s nothing else I can do for you” to an SCD breakthrough of healing proportions.
[37:53] You might be thinking that after that triumphant breakthrough, life with Crohn’s has been on easy street for this gal. Well for a while, I thought that was the case too. I’d been looking for a way out of all the pain, the medications, the uncertainty of what hellish symptom would appear next. SCD gave that to me. But what I learned in the last several years is that keeping my IBD under control isn’t just about diet, it’s about a lot more than that.
Breakdown to breakthrough #5, my final breakthrough so far. I hope that what I’m about to tell you can be a learning experience for you too. So you never have to go through my trials and tribulations.
For years, the SCD kept my IBD completely in remission. I ate huge salads for lunch every day. My once a day poops were so solid, that I experienced occasional constipation. My energy was through the roof, and I didn’t take it for granted. I savored every bit of a strawberry, of pumpkin seeds, of chrunky fibrous nuts.
I thought, why isn’t everyone doing this? The SCD is the cure. After the most profound experience of my life, turning my IBD around with this diet, I became a Health Coach to serve others on their healing journey.
But about 5 years ago, a few things happened that brought me back to square one, and showed me that there isn’t just one path to healing. There’s several. About 5 years ago, I had to find my way past yet another breakdown so I could begin to rebuild again.
Within the course of a few months two illnesses struck me hard. First, I go the flu. Not a stomach bug, but the diagnosable flu. It wiped me out. I felt horrible. I laid in bed for a week, sometimes unable to pick my head up. I became severely dehydrated and required IV fluids. Thankfully, I did recover. Only a couple months later, I got plagued with food poisoning. E coli to be exact. It seemed like everything that was in my insides was coming out of both ends. I couldn’t get off the toilet for a several days. I think the flu I had had recently, had set up such gut dysbiosis that this food poisoning pushed it over the edge.
Looking back, I think if just one of these ailments had brought me down, I think I would have been able to fight it back. But the two of them, bam bam, together like that, it set up the stage for a lasting bacterial imbalance that I’m still fight to this day.
After months of trying to get back on track, I started working with a wonderfully gifted nutritionist, who diagnosed me with SIBO, small intestinal bacterial overgrowth. It’s common to contract SIBO after bacterial upsets like a bout of food poisoning. And SIBO is just want it sound like, an overgrowth of bacteria in the small intestine. When we think of the bacteria in the intestine, many people think that we have equal amounts of bacteria throughout the digestive track, but actually, most of the bacteria in a healthy individual lies in the colon—the large intestine. When too much bacteria travels to the small intestine, we can end up with SIBO. And it’s so much more common that many realize, especially for IBDer’s. Most mainstream doctors are not testing properly for SIBO and the symptoms are so similar to Crohn’s and colitis that we don’t realize we have it. But it’s really important that we do figure it out because the treatment for SIBO is different than the treatment for IBD.
If you’re wondering about SIBO, if it might be a factor in your symptoms, and you want more info on symptoms, testing, and treatments, check out episode 30: You’re Doing Everything Right. How Come You’re IBD Isn’t Getting Better. It’s one of my most downloaded episodes and it’s got some great SIBO information. I’ll link to the episode in the show notes. Another great SIBO resource is Allison Siebecker. I’ll also leave a link to her SIBO work there as well. There’s a ton of good information on her website.
SIBO is a bit of a monster. You can treat it, but it usually takes a few treatment courses, and then in times of stress or bacterial imbalance, it can rear its ugly head again. SIBO is definitely something I continually work hard on to keep it in check in my own body.
I worked really hard to tackle SIBO and just as it was finally settling down for a long winter’s nap, I began struggling with small intestinal scar tissue from my old surgeries. The scar tissue was blocking my intestines, causing partial obstructions. Obstructions, maybe you have dealt with those in your own IBD life, are really the worst. Your abdomen fills up like a balloon, the pressure and pain on your belly is intense to say the least, and in my case, I just have to wait until the food passes through, which can be an excruciating few hours.
As annoying as all the physical aspects of illnesses, SIBO, and scar tissue can be, all of these physical setbacks began to take an emotional toll on me. When you’re doing everything right, you’re taking care of yourself, you’re eating right and you still get struck down with challenges you can’t control, it’s emotionally exhausting and infuriating. It was definitely a breakdown for me.
And unlike many of the IBD challenges I’ve been through in the past, the breakthrough with these latest setbacks wasn’t an instant a-ha or quick fix. This breakthrough has come to me in waves.
[45:15] Over the last few years, I’ve realized that staying well, isn’t just about one thing. It’s not just about finding a diet that works for you. It’s about what I like to call your wheel of wellness. To get through and thrive with IBD and the extra challenges it creates, I had to expand my healing circle. It doesn’t matter whether it’s another autoimmune disease that creeps up on you, which is really common for IBDer’s, or dealing with your IBD in the time of Covid, worrying about contracting the virus or whether or not to vaccinate– which of course creates stress that can impact our disease as well, or even other IBD related problems like SIBO, or candida, or scar tissue, or arthritis… we all have to use the abundance of resources at our disposal to create the breakthrough—to develop a fully functioning wheel of wellness.
For me, my wheel of wellness and the breakthrough that came from breakdown #5 means creating a wheel of wellness that centers around learning the ancient art of breathwork, dealing with my stress in a healthier way, focusing on ways to get more sleep, meditating, practicing yoga, trying energy modalities like reiki and craniosacral therapy, getting out of guilt mode when I need “ME” time, prioritizing what’s important in my life, journaling and feeling gratitude deeply every day, manifesting and visioning the change I want to see in myself. And of course, gut healing food too.
At their core, these are mindset and lifestyle practices and over the last few years, I’ve come to rely on these practices more and more. I find as I get older, I need them more and more in my life. And it’s been truly astounding just how powerful of a component the mind is when it comes to healing.
That’s what led me to starting this podcast. As I developed a larger wheel of wellness for myself, I wanted to share ideas with you that could help you develop your own wheel of wellness. If the last 5 years have taught me anything, it’s that everyone’s wheel of IBD wellness should look completely different, but I want to make sure you know all your options, so you can take that information and develop the healing plan that works for you.
These 5 breakdowns to breakthroughs that I’ve shared with you today are not the end of my journey. If there’s one thing I’ve learned it’s that, when it comes to IBD, the journey continues everyday. There’s always obstacles that we get in our way. There’s always going to be breakdowns.
Healing and growing and learning how to rise above, is about finding a work around, finding a road less traveling, finding a path that’s dedicated to your name only. That’s where your breakthroughs lie.
There are many others in the IBD space—practitioners of one sort or another who tell you “this is the way to healing—the one way.” They may tell you the only way to help your IBD is with medicine or the only way to help you IBD is without medicine, but what I’ve learned through all my years with Crohn’s, through all the breakdowns and breakthroughs I’ve been through, is that there is no one way to find remission, no one way for all of us to heal.
If I could pass down just one important message to you from all the time I’ve spent on my own healing journey and witnessing others healing journeys, it’s to keep searching for your way. When it comes to Inflammatory Bowel Disease, we are all different. What works for one isn’t what works for another. But we do have one thing in common, one healing tool that you and I both need. And that’s our own personal wheel of IBD wellness. That invisible wheel that’s a combination of all the healing modalities that serve you best.
Keep cultivating your wheel of wellness and keep supporting your right to have the biggest say in how you treat your IBD. In the next 50 episodes of The Cheeky Podcast, I promise to keep giving you big ideas that have the power to grow your Wheel of IBD Wellness—in the way that works for you.
It’s been my honor and privilege to bring you 50 episodes of The Cheeky Podcast for Moms with IBD. I can’t wait to see what the next 50 will bring.
Thanks for hearing my story today. I hope it brought some light and intention to the struggles you’re going through. You are in my heart dear one.
Until we chat again, I’m wishing you a cheeky and healthy IBD healing journey.
These statements have not been evaluated by the Food and Drug Administration.
This podcast, video, and blog post is not intended to diagnose, treat, cure, or prevent any disease.