11 Things I Wish I’d Done Differently When I Was First Diagnosed with Crohn’s
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Mistakes and missteps. We’ve all made them in our life.
I’ve made plenty in my 35 years with Crohn’s.
Today, I’m sharing with you the top 11 missteps I made in my early days (and even into my not so early days) with Inflammatory Bowel Disease with the hope that my mistakes can help you can avoid some of these pitfalls and find your healing path much sooner than I did.
Here we go!
Three Things You’ll Learn in This Episode
- The #1 reason I finally have a great collaborative relationship with my doctor and what it took to get there
- What prioritizing YOU really means
- The truth behind why more doctors don’t prescribe food for their patients and the reason why (spoiler: it’s not their fault)
- And much, much more. This episode is chock full of gut healing goodness!
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Mentioned in This Episode:
How to Find an IBD Doctor You’ll Rave About
Episode Resources:
Status of Nutrition Education in Medical Schools
Connect With Karyn:
Schedule Your FREE 30-Minute IBD Consult
Episode Transcript:
Mistakes and missteps. We’ve all made them in our life. I’ve made plenty in my 35 years with Crohn’s. Today, I’m sharing with you my top 11 missteps with the hope that you can avoid some of these pitfalls and find your healing path much sooner than I did. Here we go!
[MUSIC]Hey there my friend. Welcome once again. I’m so happy to be sharing this space with you today. I’ve got lots to share with you this week as we take a walk down misstep memory lane so let’s go for it and just dive in.
This was an emotional episode for me to put together. Going back and looking at all my mistakes, everything I did wrong while I was finding my way with Inflammatory Bowel Disease. While I was going through and making notes and thinking of ideas to share with you, I often found myself welling up with tears, occasionally having to just stop and take a moment for the losses and the wasted time I spent along the way. So many missteps. So yeah, this one is personal, but I’m sharing it, warts and all, with the hope that it will give you insights and a-ha moments so you don’t needlessly suffer. We suffer enough with Crohn’s and colitis. Today, let’s see what we can do to ease some of that suffering for you.
So, keeping in mind this might come across a little bit shaky or emotional at times, here’s the 11 things I wish I’d done differently when I was first diagnosed with Crohn’s and 11 things you can do differently too start from wherever you’re at on your healing journey today.
#1- If were to start over, I would start with food, not use it as a last resort.
The idea that food has nothing to do with how our Crohn’s or colitis shows up in our body is utterly preposterous! Why is this nonsense still being petaled by well-meaning, but under-educated doctors is beyond my comprehension. And it’s not their fault. As crazy as it sounds, medical students aren’t taught about the link between the state of the digestive tract and the quality of the food we put in our body in their gastrointestinal education. In their reported 40,000 hours of training doctors receive in United States medical schools, and according to the Journal of Clinical Nutrition, on average med students receive 23.9 hours in nutritional instruction. 23.9 hours out of 40,000 hours of medical training. If we’re going to be mad at anyone for this injustice, it’s the pharma happy and sometimes big pharma entwined medical schools that are going about this all wrong.
It’s no wonder your doctor’s first response for IBD is, “Let’s get you on some biologics.”
But just because that’s your doctor’s first inclination to put you on meds, doesn’t mean it’s the only path for you. I wish to God I would have known about gut healing food 35 years ago when I got this wrenching and life altering diagnosis. There was no internet back then. There was no one pointing me in a different direction.
Now there’s a lot I could say negative about the internet and social media. I often think about the struggles it’s creating for our children. But with the negative and darkness also comes the light. The amazing content, vocal voices for change, and regular people like you and me trying to make a difference in our IBD lives and help others in the process.
The internet has changed everything for our C + C life. We now have the power to see success stories, research studies, ideas, opinions all about food leading the way to intestinal healing—all at our fingertips. So, yeah, if I could start over again, I would do thinks differently. I would start with food, no matter what my doctor told me. And just let me say, huge point here so if you’ve started multitasking, come back to me. Starting with food doesn’t mean an only food approach and it doesn’t mean I’m anti-medicine.
Why can’t we do both?
And keep a goal of when your IBD is in remission, mainly using food to stay that way? Why not keep that in the forefront of your mind as your ultimate goal? I wonder, if I had had this information sooner, about the power of gut healing food, could I have saved myself from 3 bowel resections and the lasting impact that’s having on my life? I’ll never know. I started using food as my main healing source 20 years into my disease, not soon enough.
But you have the power now. You have the power and the resources to use food to help you heal. There is no one size fits all diet, but there is the diet that works best for you. Keep striving to find what that diet looks like for you. It’s a decision you will never regret. And if you start to feel overwhelmed by all the gut healing diet information that’s available to you, again, thanks to the internet, that’s where I come in. That’s what I’m here for, so reach out and we’ll get you the help you need to move forward with food as the star, instead of a last resort.
#2- If I were starting over again, just diagnosed with Crohn’s, I would make friends with others who have IBD.
Family is great. OK, family is supposed to be great. Blood is thicker than water, right? But even if you have the most supportive, understanding, compassionate, responsive family, if they don’t have IBD, it’s really hard for them to put themselves in your place—to truly get what you’re going through and give you the support you need.
We need to connect with people who get what we go through on a day to day basis. People who can laugh and cry with us over our trips to the bathroom, our challenges getting pregnant, or difficulties navigating IBD in the workplace, and motherhood and IBD—and that’s just a few of the things we have in common.
IBD friends give us the touchstone we need to feel like we are not alone and we are not crazy.
Very early on in my IBD journey, I couldn’t have been more than 17, my mom took me to a Crohn’s and colitis support group meeting. I was young and scared and a lot overwhelmed. When one woman took me aside and told me I should just end my suffering and get an ostomy bag, I freaked out. I didn’t even know what an ostomy bag was, she proudly showed me hers and, I’m embarrassed to say that it scared the crap out of me. I don’t know why. I think it just was too much for me in that moment, and then I never went back.
I wish I wouldn’t have stopped there. I wish I would have kept searching for a like-minded IBD pal who I could bounce ideas off of, cry with, fight this invisible disease with… someone who got me and the challenges I was experiencing.
It took years and years before I finally connected with another IBD gal who just got me, we were on a similar path with similar health goals and her support meant the world to me. This buddy was an IBD centered Health Coach and she is the reason I am in this field today, why I continue to help people who are struggling on their C + C journey, why it’s part of my DNA now to help others like me and no matter what life brings, will always be a part of me.
Find your IBD clan. They will help you more than you can even begin to realize. Remember, your clan doesn’t have to be local and live. There’s a big world wide web out there and you can get support even if you never meet in person. And if you don’t have anyone like-minded in your corner just yet, I’m here for you my friend. I love having IBD besties all around the world.
#3- If I were starting over with IBD, I would grow a backbone with my doctor sooner.
For 20 years I played the part of the good little girl. Take this medicine… sure, how much? Prednisone for a whole year? Why not! You need this intestinal surgery and by the way, while we were in there, we didn’t ask your permission, but we just took your appendix just in case. Really?
For 20 years I never questioned. And do you know what? Not one day in that 20 years did I feel better. Did I feel even close to OK. Anti-inflammatories, 5-ASA meds, steroids, immunomodulators, surgeries… and I was sick and tired every day.
It wasn’t until I started to ask questions, started to experiment with how much control I could exert over my life before I started to have days where I felt great. Gloriously great! Years of remission great!
Now a days, I still respect my doctor. I still see him as the expert that he is. And the reason I can feel that way about him is because I painstakingly picked him out. Doctor after doctor after doctor, I finally found a doctor I could communicate with. And if that’s been a challenge for you, I want you to go waaaaayyy back in the podcast, way back to Episode 10 and check out the episode titled “How to Find an IBD Doctor You’ll Rave About.” It will help you find the doctor of your dreams.
But even though I have found a doctor I like and trust, I know longer think of him as the end all, be all decision maker. He’s my consultant, he has more knowledge than me about the gastrointestinal tract, he’s my go-to on all things IBD procedure and medicine related. But he’s not the ultimate decider of my fate. He’s not my judge and jury.
We have an honest relationship and with that in mind, I tell him when I’m not going to follow his advice. And you know what? I think when he saw our relationship as a partnership and not me putting him on a pedestal of the “all knowing doctor,” he was relieved. It meant that he didn’t need to have all the answers all the time. We could work on things together and bat around ideas like any true and lasting collaboration works best.
Don’t be spineless with your doctor. Let them know where you stand. Appreciate their value, but at the same time, stand in your truth with your head held high and convictions strong. That’s what having a backbone with your doctor looks like.
#4- If I had to do it all over again, I’d prioritize me above all a lot sooner.
She doesn’t mean prioritize yourself above her kids, does she? Yes, I mean above your kids. Prioritize you over everyone. Because guess what? And this is particularly difficult for moms to hear because we are taught that our kids always have to come first. Well guess what? When you take care of you, I mean really do what you need to do in the self-care department, you are able to have the energy, the health, and the vitality you need to bring that love back to all those around you—especially your kids.
In my health coaching practice, I talk to moms about this over and over. It’s so hard for us moms. The guilt over putting ourselves first. It makes us feel ashamed, embarrassed, entitled. But the same moms who just can’t or won’t do it, are also never fully there for their kids. You’re have assing the birthday party, the activities, putting dinner on the table, the bedtime story… you’re never fully there because you feel like crap.
When you take the time for you, prioritize you, you will not believe how present and engaged you can actually be… and not just with your kids. With your partner, at work, with your friends, your parents, your neighbors, your pets… and the list goes on and on.
Prioritizing you though, I want to add that this is such an individual process. Only you know where you struggle in this department and where you could really use some “you” attention. For me, I spent way too many years putting everyone’s needs above my own and when I finally stopped being an under-educated doormat about my Crohn’s and decided that it had gotten me nowhere, that was when I declared I was starting the year of ME. That’s what started me down the path of self-care.
At the time, I had two young kids and they weren’t getting the mom they deserved. And I wasn’t living the life I deserved. The year of ME was about eating gut healing food, taking time for restorative yoga, setting up morning meditations (even if they were just 5 minutes) or my morning pages where I’d write about anything that was on my mind, making time to hang out with friends and engage deeply, meeting new IBD friends, and most importantly, taking time to breath. So many stress and anxiety management techniques out there, but prioritizing conscious deep breathing was probably the best decision I ever made for the health of my mind, body, and soul.
When you come up with your own priority plan, whatever that looks like for you, I highly encourage you to write it down. Declare it to yourself, declare it to your family, post it on social if you’re comfortable. But own it and hold yourself accountable to it. Prioritizing you won’t just make your life better. It will make life better for those around you as well.
#5- If I was starting over with IBD, I’d keep all copies of my patient records.
After 35 years, 8 moves, more procedures than I can count, lots of gastroenterologists and treatment plans, I wish I would have kept copies of my Crohn’s history. Even if you’re not moving to a different state, what if you just switch doctors? It’s been known to happen.
I can’t tell you how many times a doctor will ask me a question, and I just can’t remember the answer. If you’re newly diagnosed, you might think that sounds crazy, but for me this is year and years and my memory ain’t what it used to be. You’ll blink and it will be that long for you as well. For the last 10-15 years, I’ve done a much better job of keeping my records, much of it in paper format, so that not only do my doctors know my medical history, but I do as well. And that’s even more important in my opinion.
#6- If I had to do it over again and was just diagnosed with Crohn’s, I’d be more open and vulnerable about my illness with family and friends (and heck, strangers too).
Over the years, I’ve gotten much more comfortable talking about Inflammatory Bowel Disease. See, I can even say it without cringing. In fact, it’s not unheard of for me to strike up a conversation with a stranger and nudge something about IBD into the conversation. Knowledge is power and the more people who are aware of what IBD is, the better. We never know who has the financial ability to put money into researching remedies and cures for our important cause or who needs this information, maybe because they’ve had similar symptoms or a loved one with similar symptoms and bringing IBD out into the open shines a light for them.
But I wasn’t always this way. I was just a teenager when Crohn’s came into my life. I was young, insecure, and all I wanted to do was fit in. It’s hard to fit in when you’ve got Crohn’s or colitis. I makes you different. I didn’t want anyone to know I had a poop disorder. Afterall, I was the only in the world who pooped, right?
So I hid it. I hid my Crohn’s from boyfriends, my college roommates, my co-workers, my friends, lots of my family members. I pretended everything was fine after I spent 20 minutes in the bathroom. I said, “It wasn’t me,” when my smelly farts took over a room.
I was embarrassed. On the outside, I looked like a fresh faced co-ed with not a care in the world. I was the swan, looking calm and serene on the outside while I paddled furiously underneath the surface.
And all those closed walls, stoic energy, perfectionism, and denial got me nowhere. I started to resent those around me for not getting what I went through. I started getting angry at myself because I was the one who entrapped myself within these walls.
And then I met my husband. And he was the first person I opened up to about my struggles. Just a little chink in my armor, but little by little his patience and willingness to be there for me with no agenda and no judgment made my walls begin to crumble.
That’s how it started for me and ever since, I’ve slowly opened up more and more about this invisible illness and this is what I’ve learned in the process.
I learned that being vulnerable and honest is not weak. It’s about the strongest thing you can do.
Being vulnerable is being human and real honest human connection is the greatest gift we have in this life.
I learned that perfectionism is over-rated. I can have an abundant, rich life even when I strive for B+ every day.
You don’t have to let everyone in, but have a select group that you can be you with. Vulnerable, present, and beautiful. Your life will be richer for it.
#7- If I had to do it over again, I’d put more value on my own intuition.
We know ourselves so much more than we give ourselves credit for. We know when something’s wrong with our health. We know when the answers we are getting don’t add up. We know in our heart when we need to move in a different direction.
Trusting your gut instincts come with time. They come with learning about who you are and what makes you tick. The best advice I can give on this is to never be so caught up in the business of life that you never slow down to listen to that inner voice that tells you what direction you were meant to move in.
Many times, early on with Crohn’s, I thought to myself, this advice that I’m getting, it doesn’t sound right, but I ignored my inner knowing and went in another direction. Like when my doctor put me on what was supposed to be a month long course of steroids. That month turned into 3 months and I said, are you sure I can be on this so long? And that three months turned into 6 months and I questioned the doctor again, but still remained on steroids. And that 6 months became a year and finally it took my absolute rage, depression, suicidal thoughts by this point and my mom telling the doctor, “enough” for me to finally be taken off this toxic medication.
But over time, as I learned more about myself, about how I felt about root cause healing vs cover up short term support, I learned to trust myself and my instincts. So that when I was going through infertility and the doctor told me that nothing was wrong medically. I just wasn’t getting pregnant because I was too thin, I said uh-uh. There’s something else going on here and I was right. When I instinctively knew after 6 months on the Specific Carbohydrate Diet that it was time for me to see how I’d do without meds, and I was right. It was time. And when my doctor was convinced my gallbladder had to come out, but I knew instinctively that with all the intestines I had had removed, I needed to figure out how to save my gallbladder and not take it out. I needed it to help me digest fat. And I was right.
Intuition is huge. Listen to your gut. We have more intuition in our gut than most. Your intuition will not steer you wrong.
#8- If I was just getting diagnosed with IBD, I’d set boundaries around worry and anxiety time and live a fuller life.
It seems like those of us with Crohn’s and colitis seem predisposed to feel anxiety and worry more deeply. There’s actually some interesting research on this very topic that shows that people with digestive disorders are more in tune with emotions like this. We feel them deeper and it’s not because we have a “nervous stomach.” It’s biological. Part of our make up.
But we can’t worry so much and stress so much that we miss out on life. Is it scary to leave the house when you’ve got IBD? It can be. I’ve met a lot of people who have become shut in’s due to this having this illness. It’s not uncommon. But we can’t let IBD create so much worry and anxiety in us that we let our life pass us by.
Early on, I worried and stressed about what my future would hold, what I was doing wrong, why this happened to me… I worried way too much. And I learned that while I might not be able to get rid of my anxiety completely, I had the power to decide that I was in charge, not my illness and not only that. I also decided that I wasn’t going to let this stress and anxiety keep me from living the full life that I deserved.
If worry or stress or anxiety are a struggle for you too, it’s not about getting over these emotions or even ignoring these emotions. It’s about allowing them a small space to take up in your life, and then putting them in an imaginary box so you can live the full and complete life you were meant to live.
A full life is going to look different for all of us, but just make sure you aren’t letting your fear get in the way of anything you want to do. You deserve to be happy. You may have to take a couple detours to get there, just make sure that you do get there.
#9- If I could go back in time, I’d cultivate my Wheel of Wellness a whole lot sooner.
If you’re a long time listener to the podcast, you’ve heard me talk about cultivating your Wheel of Wellness. It’s been instrumental in keeping my Crohn’s symptoms managed and it is crucial for you as well.
Your Wheel of Wellness is an invisible wheel (just like a bike wheel) with all the spokes bikes have. And each spoke represents something that supports our gut health and our overall health. Your Wheels of Wellness should absolutely have your doctor in a prominent spot. The gut healing food you eat is another spoke, medication may be a spoke as well. But other spokes are important too. Spokes that have to do with your mental and spiritual health like your faith or meditation and lifestyle factors like a good sleep regime and your stress management tool belt that helps you when life gets chaotic.
For a long time (20 years), I didn’t have a Wheel of Wellness. My support system consisted of my doctor and no one else. It took me a too long to learn that your doctor should be part of the equation, but not the whole equation. Autoimmune diseases like Crohn ‘s and colitis are absolutely impacted by our mindset and our lifestyle, and our support system, and the food we eat, and the kind of movement or exercise that supports our body. We need multiple spokes to create the life we want and the life we deserve.
If you want to adopt just one thing you’ve heard today, start here. At first, you might say, whoa, that’s a little ambitious to start, but when you come at your Wheel of Wellness from the B+ mom perspective, you know that you can take all the time you need to cultivate your Wheel of Wellness. In fact, I highly encourage you to just add one spoke at a time. Try them out, switch them out. Keep tweaking, changing, and growing your Wheel of Wellness and it will serve you for your lifetime.
#10- If I was just diagnosed with IBD now, I hope that I would take some time to learn everything I can about my disease and my options for healing.
It’s not enough anymore to just go through the motions and do what we are told. We don’t have the excuse of I don’t know where to look or there’s just no information out there. There’s information galore. All we have to do is start looking for it.
I have no doubt that you are much better at this than I was years ago. In the information age and technology age, everything we ever wanted to know about IBD, about it’s symptoms, treatments (both from a medical vantage point to a root cause natural vantage point) is available to us. So go out and do your research my dear. Then, you’ll be armed with information and be a true collaborator for your care and your well-being when it’s time for your doctor’s appointments and time to make a treatment plan for you.
#11- I saved my biggest IBD lesson for last. It’s my latest IBD ah-ha and one I probably only realized about 10 years ago. But man, was this one was a game changer. If I were to just be diagnosed with IBD again, I know that I’d stop asking everyone with C + C what works for them because the only thing that matters is what works for me.
I spent way too many years trying to copy what I was seeing others do. It worked for them so it’s got to work for me. She’s follows a vegan diet and her Crohn’s is in remission. That must be the way I’ll heal too. She swears by this particular brand of vitamins. If I want to heal, that’s what I have to buy. It’s like keeping up with the Jones’—IBD style.
And after SCD (the Specific Carbohydrate Diet) worked so well for me, I started out my IBD coaching practice by putting everyone on SCD. Big mistake! Guess what? It’s not the ultimate healing diet for everyone.
I wish I had a magic “one size fits all” cure. I wish there was one diet, one supplement, one medication, one lifestyle path that fit for everyone with IBD, but the truth is there’s not. Ways to find remission are as diverse as our microbiome. And I think that’s exactly what it is. It all comes back to our microbiome. Each one of us is made up of a diverse group of bugs—trillions of those microscopic creepy crawlers (appetizing, right?) and so what works for one microbiome is not what works for another. Finding healing and finding remission with Crohn’s and colitis is about gathering information from others, but then taking that information and personalizing it to find the healing path that works for you and your microbiome.
Just don’t give up because finding your healing path is complicated. Because I know that finding your way is possible. We all can do this. In the end might not look like what you thought it would and it might not be perfect, but you can find success. I firmly believe that.
OK my friend, that’s 11 Things I Wish I’d Done Differently When I Was First Diagnosed with Crohn’s. Which one of these resonate with you? If it’s not too late for me 35 years in, it’s not too late for you. You only have to pick up on one idea to start a revolution in your life. What will that be for you? I’d love to continue this conversation with you. E-mail me at hello@karynhaley.com and tell me. I can’t want to hear what stood out for you.
Until we meet again, I’m wishing you a cheeky and gut healing journey. Chat soon!
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.