Hey there mom friend, have I got a story for you! A 20-year story with a triumphant ending! And what a journey it was.
Because it’s a long journey and because I know you’re a mom and YOU’RE LUCKY TO HAVE 5 MINUTES OF ALONE TIME A DAY, I’ll break this story down into important life milestones.
You’ll see a bold header for each milestone like “IBD and Marriage” and “The SCD Intro Diet”. Feel free to read the milestones that speak to you the most.
Whether you have Crohn’s Disease or any other form of Gut Junk, you’ll likely find a little bit of your story at every twist and turn.
So, grab a cup of tea (maybe a glass of wine) when you get that five minutes of peace. Take a load off and have a read.
Come back often, whenever you are in need of some inspiration to keep you moving forward on your Gut Lovin’ journey. And will you do me a favor? Let me know what parts you relate to, what was helpful for you and most importantly,
Tell me how I can help you on your journey from Gut Junk to Gut Love.
Email me anytime at email@example.com
Like so many with Gut Junk, my story begins in a hospital.
I am 17 years old, just graduating from high school, ready to go to college 3 ½ hours from home to study dance with hopes of continuing my dance career that started at age three.
I am ready to take on the world!
I am the “baby” in a house full of boys—the only girl with three older brothers in an upper/middle class family in the privileged community of Orchard Park, NY. I am sheltered, moderately spoiled with worries like, “Do I have enough hairspray to hold up my 80’s style hair?”
Back at the hospital, I am coming out of exploratory surgery where a colorectal surgeon is trying to find out why I keep having bloody poops and why I have several rectal fissures (tears in the rectal lining that bleed).
“Hrfmmmbbrrrr… Croobsh Distreshffff… Vefishr Sinerkth…”
As the anesthesia wears off, I hear mumbling voices around me and see a blur of people I vaguely recognize as my parents and my doctor. They are talking in hushed tones. I can’t make out what they are saying. The image lasts only a moment and I am out again, blissfully unaware that my life is about to change forever. I wish I would have known that change was coming. I wish I would have fully embraced those last few moments of childhood innocence.
As many loving parents do in a situation like this, they try and shield me from the emotional and physical pain that will surely follow. Even when I fully recover and wake from surgery, they don’t tell me anything. They say “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 have been 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 try to diagnose me with everything from Esophagitis to Endometriosis.
Swear to God! I know it sounds weird, the two are nowhere related, but I think they were just grasping at straws. Looking for an explanation for the unexplainable. At the time, I don’t question. I don’t think ahead.
A couple days after surgery, my parents sit me down and tell me the news, “The doctor did a biopsy while you were at the hospital and discovered that you have Crohn’s Disease.”
I don’t even know what Crohn’s Disease is. I’ve never heard of it.
I don’t know what this means, but I have heard the word DISEASE before and it definitely doesn’t sound good.
My Nana at
my wedding in 1998.
An Italian grandmother we called Nana that lived a life of only going to school until the 4th grade, never owning a single toy or a doll, yet still carrying on with her head held high— always bringing you to laughing tears with the stories she would tell.
And my mother, having undergone multiple eye surgeries in her youth trying to restore her vision. None of them worked. She is still legally blind in one eye and the strongest woman I know.
My mother at her nursing school graduation
During the summer after I graduated from high school and was diagnosed with Crohn’s Disease, it was always just expected that I would carry on, strong and confident, and that I could get through anything. 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 a college 3½ hours away from home.”
My mom didn’t miss a beat. She said, “Karyn, the train of life is leaving the station. If you don’t get on the train, your life will pass you by.” That was all the discussion we had about it.
With support like that, there’s no room for doubt.
I went away to college two months after being diagnosed with Crohn’s 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.
Though I did engage in the typical college antics—parties, drinking, sorority life— much of my college life was different than those around me.
When I went to college, I was having really painful poops. Those rectal fissures I told you about earlier? Still there. It hurt so much to poop, that I had to fill a sitz bath with warm water, go to the community toilet in the freshman dorm and poop in the Sitz Bath to help with the incredible pain of going to the bathroom. I’d hide 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.
Sometimes I was stealth and no one walked in on me. Sometimes, my dorm mates would see me and give me really strange looks. I could almost read their minds, “What the heck is that girl doing in there?”
I can giggle about the ridiculousness of it all now!
Then, there was the rectal abscess I got during spring break of freshman year. This hard, puss filled sack caused an infection that gave me fevers and made me feel generally awful. I was rushed from spring break in Florida to the Cleveland Clinic in Ohio to have the abscess drained. A tube stuck out of my butt to drain fluid from the abscess. It was a pain in the ass (literally) and I had a dance performance I had to get ready for. I will never forget praying I would get through the kicks, leaps and rolling on the floor without popping a stitch and having the tube fall out of my butt while I danced.
Fun times! Thankfully, I got through it. The tube never fell out.
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 goodies!
My doc told me it was time for steroids—specifically prednisone. 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.
The anger outbursts, the moodiness, the depression and for me, eventually suicidal thoughts were a huge surprise.
Going through teasing about my weight gain on steroids and suicidal thoughts was enough for me to tell my doctor I wanted off that medication. I’ve never been on it again!
During college and graduate school to get a degree in Mental Health Counseling and a specialization in Medical Family Therapy, I continued to be strong, to press on even when life threw me a Crohn’s-sized curve ball. And there were plenty of curve balls.
From the physical side of Crohn’s like intense abdominal pain, bloating, gas, diarrhea and bloody poop to the practical side like finding bathrooms in a hurry, deciding how much to tell people about my life with Crohn’s, and feeling incredibly frustrated every time I went to the doctor.
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.
His name was Bill.
We met on a skydiving trip—a truly bonding experience. After that, we went out on a date and a relationship grew. He was the first person I could really talk openly to about my struggles with Crohn’s Disease.
He held me in his arms and let me cry until I couldn’t cry anymore when I told him 4½ 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.
Four months after we met, my surgery took place at a hospital 1,000 miles from where we lived. He flew there and stayed with me. He helped me take my first steps after surgery. It was then and there I knew he would be my husband.
After we married, we spent ten years in the Air Force. He as the active duty member and me as the spouse. It was a magical time, traveling around the world, meeting amazing friends, but also a time of sickness and health problems for me.
I always wanted to be a mom. From my youngest childhood memory pretending to mother my dolls, I knew motherhood was a dream I aspired to.
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 will 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.
We finally consulted a fertility specialist who helped us. It took another year to get there, but thankfully, after those painful years, we were pregnant with our first child. I remember dropping to my knees with tears of joy when we found out.
A remarkable thing happened when I was pregnant. My Crohn’s disappeared.
This can happen quite often, actually. Your hormones are in overdrive, your immune system goes through changes, and the disease gets quiet. It was a glorious nine months. I was lulled into a sense of peace.
After our son Dillon was born, Crohn’s came back with a vengeance. It was just waiting, lurking in the shadows, waiting for the baby to be born for all hell to break loose.
There I was with a new baby, 9/11 had just happened, I was afraid my husband would get deployed and my doctor was telling me another four feet of small intestine needed to come out.
I had enough! I vowed that if I got through this surgery, I would do everything possible to never go through this again!
In all honesty, I can’t remember the name of the person that introduced me to a new way of gluten and grain free eating called the Specific Carbohydrate Diet (SCD). I wish I could remember his name because he had a profound effect on my life.
We were still in the military, moving every one or two years, and finding a new gastroenterologist at every base. A resident gastroenterologist I only met once mentioned a book he had read in passing as I was leaving his office. To this day, I have never had another gastroenterologist recommend the Specific Carbohydrate Diet to me. They “tolerate” me when I say it works.
The book was called Breaking the Vicious Cycle by Elaine Gottschall. It sounded intriguing enough and I was desperate enough that I bought a copy. I read it cover to cover and at the end of the book I said to myself, “What did I just read?”
All I got out of it was: “restricted diet” and weird recipes that used something called dry curd cottage cheese.
I could tell there was something important there, but I couldn’t decipher it. I didn’t get it! So, I set the book aside and never picked it up again until five years later.
So, I had vowed that after my second bowel resection, I would never be that sick again. Even though my doctors told me I had the “worst case of Crohn’s they’d ever seen” and that I would “have part of my small intestine removed every six years until I didn’t have any left” (both direct quotes), I’ve kept true to the promise I made myself.
It took some detours and curves to get to HOW I would go about it, but I take pride in knowing I proved the doctors wrong!
I felt so good after my second surgery that Bill and I decided it was time to have another baby. This time, we conceived our first month trying. This makes so much sense, right?
The first time around, I had 4½ feet of my small intestines the size of a spaghetti string that I didn’t even know about. With baby #2, my disease was quiet.
How’d the pregnancy go? Another nine months of bliss with the birth of our second son Devin, followed by Crohn’s upheaval and chaos after he was born.
This time, steroids were out of the question.
So, here I was with two little boys 17 months apart, both in diapers, getting ready to move to England on another military assignment.
It is the early 2000’s. Little whispers of alternative health like acupuncture and homeopathy are creeping up in the mainstream, but I am still skeptical. I know with all my heart that now that I have these two beautiful children, (when I once thought I would be childless) that I have to be there for them. I owe it to them to be healthy.
It is with them in mind that I say “Yes” to immunosuppressive drugs.
I have to be honest. There was a slight improvement of my Crohn’s symptoms with these immunosuppressive drugs that boast the possible side effect of lymphoma (cancer of the lymph nodes). I remember researching the drug and telling my doctor about my concerns.
For four years, this is the course I take. I don’t feel great, but I am able to care for my boys and enjoy our time in England (as long as I always know where the nearest bathroom is). Lingering doubt that this is not the path to real health creeps up from time to time, but I know I am doing the best I can at this moment in time.
In 2007, we move back to the states. My husband’s time in the military comes to an end and we settle with our four and five-year-old boys in Maryland. I am not feeling well. The immunosuppressive drugs aren’t suppressing my Crohn’s symptoms anymore, but they are suppressing my immune system so much that I am constantly fighting off one infection after another.
I go to yet another gastroenterologist who orders a colonoscopy and endoscopy. When the tests are complete she gives me the 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 am devastated. It’s like the medical community has failed me. They’ve given up on me.
What the hell do I do now?
The mantra I learned 20 years earlier, back when I chose to go to college instead of climbing in bed and staying there for 20 years is pounding in my head…
“The train of life is leaving the station… The train is leaving the station…”
And then it hits me. The medical community may have given up on me, but I still have hope. I race home and run to my basement where books and trinkets are packed high in boxes. I search and search until I find Breaking the Vicious Cycle—the book Elaine Gottschall wrote about the Specific Carbohydrate Diet. Right then and there I read it again, cover to cover and this time for some reason, it makes sense.
I take my time. I take notes. I underline and highlight so much in the book that the pages all look bright yellow. I know that the words in this book are the step-by step-plan for my future.
I know that this healing journey is going to take some time. I know that I am willing to put in the work it will take. I know that I am finally motivated to make change.
Why did it take me so long?
I try not to look at it as years wasted. I guess it just wasn’t my time. While I know now that this is the path I have to take, that this is the path that will heal me, I am still daunted. The SCD has me giving up gluten, dairy, sugar and grains. This is a whole new way of eating for an Italian girl that lives on bread, pasta and cereal.
By 2008, the internet has exploded and is a haven of information so I decide to search for an SCD expert—someone who can show me the ropes and walk me step-by-step through the maze of SCD “Legal” and “Illegal”. It doesn’t take me long to find someone—A health coach specializing in the Specific Carbohydrate Diet. I’ve never heard of a health coach before, but I jump in feet first with the clarity of a woman who knows she is on the right path for the first time in a very, very long time.
I start phone consultations with Emily, my health coach, and she takes me by the hand and tells me exactly what to do and when to do it. She and I talk about a start date to begin the SCD and I decide that July 4th will be my own personal independence day.
I will declare independence from the shackles of Crohn’s.
I will finally take my health into my own hands.
I will make that day the day I determine my fate. The day I learn to rely on ME.
So, I do the diet and it kind of sucks. I am eating like a baby. Mashed bananas, homemade fermented yogurt, pear sauce, carrots cooked until they are mushy, bone broth…Those first few days, I miss my old food and I feel like crap.
I realize I am going through carbohydrate withdrawal and what is called “die off” of intestinal bugs with symptoms like extreme hunger, fatigue, weight loss, brain fog…I am not a happy person.
A week goes by and the crappy symptoms disappear. Even better, my stomach pain is gone, completely GONE. My diarrhea is beginning to go away. I can’t believe how good I feel. I haven’t felt this good since I was a teenager!
My health coach and I work together for one year as I slowly add more foods into my eating plan. During that year, I commit to CHANGE. I lower my stress levels. I practice restorative yoga. I get out in nature. I remember my spirit.My initial plan is to go off all my medications in one year, but after just six months, I feel so good that I go for it.
I go off ALL my Crohn’s meds and end up never needing them again.
Is it a Cinderella at the ball happy ending? Not always.
About two years in, I learn that there are parts of other eating plans that suit me better like the fermented foods of the GAPS protocol and raw cacao from the Paleo approach. I modify. I tweak to find what suits me best.
Do I ever have flares? Yep, mild ones. I know when they are coming. When I get stressed. When I don’t get enough sleep. When I accidentally eat a food I am sensitive to like soy. I can’t believe how well I know my body now.
I can’t believe I should have just listened to Hippocrates wisdom over 20 years ago…“Let Food Be Thy Medicine and Medicine be Thy Food.” I could have saved myself 20 years of heartache. Oh, if I had the knowledge way back when.
But then, would I be as appreciative of all the gifts in my life? Would I marvel in wonder at the amazing life I get to be a part of everyday as a wife, mom and Gut Lover? Would I be here with you?
Would we be sharing this journey of healing together?
Six years ago, I decided my world was in such a good place that I needed to add one more child to join our family. In 2010, my husband and I welcomed son #3, Liam.
He is the cherry on top of the icing that’s on top of my grain free cake! He rounds out our family perfectly.
Did I have a blissful, Crohn’s free pregnancy? You betcha! Did I get my typical flare afterwards? Nope, not one bit!!!
This story would not be complete if I didn’t mention the gut struggles my children have. Have you noticed that digestive problems run in families? If you have Colitis, you might have a parent with IBS. If you have Acid Reflux, you may have noticed that you have a child that’s sensitive to dairy. Just like any genetic pattern, digestive issues run in families.
My kid’s gut junk started with my oldest, Dillon. When he was eight, he started having behavioral problems like anger outbursts and hyperactivity as well as brain fog and poor memory.
After a number of doctors told me there was nothing wrong with him, I decided to remove gluten just to see what would happen. No surprise, his symptoms dramatically diminished! He still struggles with some stomach problems and of all my children, I worry most about him getting a digestive disorder like Crohn’s. He does best when he eats grain free, but he’s 14. It’s tough enough to be 14 without adding a bunch of food restrictions.
Dillon eats gluten free 95% of the time and most of that food is grain free too. He understands the connection between what he eats and the behavior issues and gut junk that follow. It works for him and I’m happy with that.
When my middle son Devin was nine, he developed scaly rashes all over his head. I took him to the dermatologist. The diagnosis? Psoriasis. Knowing what I know about the link between food and skin conditions, I decided a visit to a Naturopath was in order.
The second diagnosis? Dermatitis Hepatiformis—gluten sensitivity showing up on the skin. We removed gluten and within a month, the “psoriasis” was gone! Over the years, we’ve learned that if he stays away from gluten when we eat at home, but eats what he wants when he’s out, we can keep his rashes in check. Does he like being gluten free at home? Nope, not one bit. He’s 12. He likes pizza, cake and ice cream. I understand. He’s a kid.
But I have to believe that if we work with our children where they are at and provide them with the information they need to make wise choices, most of the time, they will.
Devin will often say to me, “Mom, you wouldn’t believe the junkie stuff they served at that birthday party” or “Mom, how can I make this recipe gluten free?” He loves to cook and bake and when he does it with Gut Love in mind, how can he go wrong?
For a long time, my youngest son, Liam, was “along for the ride”. I just assumed that after having two children with Gut Junk, it was a good idea to keep him gluten free. Though he rarely eats gluten, he does like cheese. Very recently, I noticed that when he ate dairy, he would get rashes on his hands. I quickly realized that no dairy meant no rashes. So, he eats mostly dairy and gluten free. It’s pretty easy with him. He’s five. He eats what I give him. I know a rebellion will probably follow as he gets older, but until that time, I keep talking with him about making healthy choices.
I tell him that not only is it true that We Are What We Eat, but we are actually What our Bodies Can Tolerate and Absorb.
Have you ever thought about this? If we have Gut Junk, our body can’t digest the nutrients we need because they just slide on through the gut. But when we feed our body the right kind of food for our own body type, we can then benefit from the food we eat—we can literally feel the Gut Love.
Would all of my kids benefit from a strict Grain Free protocol like me? Absolutely, 100% yes! But, they are kids. They want to have a piece of pizza or cake at a birthday party. And as they get older, they want to be “normal”.
The health coach in me cringes when I see a parent bring out a bag of store bought cookies or candy as the snack after a soccer game, but the mom in me understands. They are kids.
We always eat healthy at home. My kids know all about protein, good fats and carbohydrates. They read food labels and tell me when they see “high fructose corn syrup” or “partially hydrogenated oil”. They LOVE to cook and create their own recipes. What more could I ask for at this point in time?
I hope that when they get older, they will remember what they learned in our home about eating right for their own body type and that food is medicine.
Learning that I needed to take the nonconventional path by bringing food, lifestyle and mindful changes into my world has been the savior I was waiting for. I am so thankful that my experience with a health coach was so profound that I became a health coach. Now, I have the knowledge to not just help myself, but to help others around me. Others with Gut Junk like Crohn’s, Colitis, IBS, Acid Reflux, Celiac, Leaky Gut, gas, bloating, diarrhea and constipation.
Helping moms with Gut Junk is my mission. It’s my passion. It’s why I was put on this Earth.
Since I began my healing journey on Independence Day, I celebrate this independence every year on the 4th of July.
I make all of my favorite grain free foods like Orangey Butternut Squash, Celery Root Mash, Bacon Roasted Brussel Sprouts and Grain Free Stuffing. I have a party with my family to celebrate my health and the happiness I get from helping others. At the end of my independence day, I always send a special wish to those suffering with Gut Junk in hopes that they will find their path towards Gut Love too.
In Gut health and happiness always,
I know it was a long one, but I hope there was some part in there that spoke to you. One part that made you say, “I’m not gonna take it anymore!” and “I’m ready to heal from my Gut Junk!”
Now, I want to hear from you. What Gut Junk are you dealing with and what can I do to help? Email me at firstname.lastname@example.org. I can’t wait to hear your story.
Get my FREE Cheat Sheet: 7 Tips to Move Beyond Medicine and Start Healing Your Gut Naturally. And also enjoy the support and empowerment that only the Gut Love Community can provide!