Things I wish I knew…
Disclaimer: If you are reading this and dealing with ANY health related problems I am NOT recommending you take the same unconventional approach as I have in my battle with Crohn’s disease. Any changes you wish to make in your care plans should be done in partnership with the team of qualified healthcare providers who treat you.
What lessons learned would I share with a younger version of myself?
I started this blog because I wanted to have a platform to say the things I wish I would have known 20 years ago when my journey with Crohn’s disease started.
As I think about what I’d tell a younger version of myself there were three key phases of my journey where a little encouragement, guidance, and knowledge would have been helpful. These include 1) when I was newly diagnosed; 2) when I first started thinking about diet as an approach to manage my symptoms; and 3) when I was really looking to make long term lifestyle changes.
I’ll be covering each of these below.
Advice for the newly diagnosed
Finding out that you have a “chronic and incurable” disease is not an easy pill to swollow. On one hand, if you’ve been waiting for a diagnosis for some time it can actually come as a relief to know what you are up against but for others it can be a period of uncertainty for what the future might hold.
I remember being newly diagnosed and hearing the war stories of a distant relative or a random stranger who did not fare well in their fight with Crohn’s disease and I was scared. But after seeing continued improvement in my journey and talking with countless others who are having success through both natural and traditional healthcare options, I’ve seen that hope is real.
If I could go back in time and tell my newly diagnosed self a few things it would be the following:
Listen to your doctors - Most people I talk with when they are first diagnosed have no idea what Crohn’s disease is and they are scared. Thankfully your GI specialist, registered dietitian, naturopathic doctor, and others on your care team know more than you! Granted you normally get very limited time with your GI specialist so rely on the rest of your care team to help guide you as well. Knowing that you’ve got a whole team behind you can be a huge relief.
Be your biggest advocate - For the first 10 years of my diagnosis I did everything my care team told me to but I got sicker. I hadn’t yet learned that my care team didn’t know how I felt. They weren’t able to feel what triggered my symptoms - that’s was all on me!
It’s your responsibility to dig in and learn as much as you can about IBD. It’s your responsibility to get connected with others who have IBD so you can learn and grow from each other. As harsh as it might seem, you are stuck with this diagnosis for life… accept it, learn, grow and do what you can to show it who’s boss.
You’ve got this - Stand in front of a mirror every morning if you have to and tell yourself that you will do the impossible - you will beat an “incurable” disease. It’s not false hope it’s determination - and sometimes it’s the only thing we can do. I don’t think any of you were born to be sick - you were born to be the amazing, kick butt people that you were destined to be. Hold on to that. You’ve got this!
Find a provider / care team who has had their own health journey - The best providers (in my opinion) are the ones who can empathize with you as a patient and really truly want to help. Being a provider is a difficult job for a multitude of reasons but as a chronic care patient you just want to feel heard and understood.
Advice for those starting to think about diet
I started my foray into diet with a cheat sheet called the Specific Carbohydrate Diet. Today there are many prescribed diets for IBD. I’m convinced from my personal journey that it’s less about one specific diet and more about how specific ingredients make you feel.
I do think prescribed diets are a great place to start, and if I had to do it all over I’d probably start there again. But here are the things I wish I would have known back then so that I could have cut down on some of the noise.
One specific diet is not going to heal you - what works for one person isn’t necessarily going to work for another and that is OK. Understand this as you start looking for triggers.
It takes time to find triggers - it’s easy to want immediate success, but the truth is that finding your triggers takes time. This is to be expected. Just take it one day at a time.
Limit Variability - Most of what we eat (packaged / processed foods) contains way more ingredients than what is needed. This makes it really hard to pinpoint how specific ingredients make you feel. Reduce the number of ingredients you eat to find trigger foods faster. You never know you might be able to avoid your triggers just by cutting out things that aren’t whole foods.
95% of everything you eat should be home cooked - You really need to know what you are putting into your body so you can tie back how you feel to what you eat. If you begin cooking your own meals with whole ingredients you’ll be in a prime place to find your trigger foods.
Cut out common allergens - Remove the big 8 allergens: dairy, wheat, eggs, fish, shellfish, tree nuts, peanuts, and soy for a week or two to see if you feel better. (See the post on My Trigger Foods for more) If you see your symptoms improve after removing these you can re-add one ingredient a week watching if your symptoms increase again after adding.
Listen to your body - Start watching for how things affect you. There is always a reason behind why you feel sick. It could be a specific ingredient in your food, it could be environmental, it could be stress but there is always a reason! With each reason you find you are one step closer to getting complete control over your health. Always listen.
Advice for a deep dive into lifestyle change
After several years of fighting IBD with diet I was seeing some success but I didn’t really know what was trigging my symptoms which left me with a fear of food and a very limited diet.
Determined to identify exactly how each ingredient made me feel, this is when I started an elimination diet. I powered my way through several failed attempts at pinpointing my triggers before finding a process that seemed to work.
As I’ve refined my process, I’ve been able to add back in a wide variety of foods that I had restricted myself from for years because I believed they were a problem.
What would I tell a younger version of myself when I was making the switch to an elimination diet and symptom tracking?
Design at least three well balanced baseline meals - Find a baseline of 10 - 15 ingredients that you know aren’t going to negatively impact you and build a few different meals based on these ingredients! Consider taking the help from a registered dietitian or nutritionist (see IBD Community) but ideally you still want to have enough variety in your diet and to make sure you are getting all of the nutrients your body needs. For most of my journey with diet I wasn’t getting enough calories. Well balanced is very important. Read more about my process here.
Journal everything - For me this has been the most important thing on this list! Track your symptoms and tie them back to either the foods you eat, the seasons in the year, and even your stress levels - don’t guess at what possible triggers might be - actually know.
Watch for impacts over time - There were several times I thought an ingredient was a trigger but was wrong. I’ve called out in previous posts that minor triggers build over time and once your body hits its tolerance limit you’ll see the reaction. As soon as you think you’ve got it figured out everything changes on you. But, with each incorrect hypothesis you become one step closer to figuring out what is really going on. :-)
Watch for seasonal impacts - Based on my personal journey diet change was 90% of my battle but seasonal allergies have caused me emotional distress and massive weight loss. It drains my body of valuable nutrients which could be used to help my immune system function correctly. Consider how seasonal factors could impact you as well.
Update: November 2023
Best lesson learned I can provide: never stop learning and never stop trying to be a better version of yourself. It takes time to learn what our bodies are trying to tell us.
