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How I Manage Crohn's (Mostly) Without Medication

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The universe gave me a little reality check recently. I had the idea to write a blog post about my experience with Crohn’s Disease, and I dismissed it thinking, “I don’t identify as someone who even has Crohn’s anymore.” Cue my latest flare up, which started a couple of weeks ago. 
 
Now, before I move any further here, let me explain. I’m 29, and I was diagnosed with Crohn’s when I was 16. It’s a chronic auto-immune disease affecting your intestines. Ulcerative Colitis is a similar disease, and the difference between the two is just where in the intestines a person is affected. My first flare up was bad – drawn out for several months and ultimately necessitating two blood transfusions. Since then, I’ve been able to get off all medications and can count the amount of times I’ve flared on one hand. When it happens, my symptoms are relatively mild (small amount of blood in stool accompanied by mild inflammation and bloating in my belly area), I can usually pinpoint what irritated my guts and get back on track quickly.
 
I don’t stay updated on the latest Crohn’s-related medical research (keep that in mind if some of this seems totally ignorant, sorry), and I feel like I lead a totally normal life and hardly take Crohn’s into consideration. My last colonoscopy 2 years ago showed I don’t even really have scar tissue build up – something my gastroenterologist originally said would get so out of hand I’d need part of my colon removed.
 
I recognize I am incredibly fortunate. Crohn’s Disease can dominate people’s entire lives, or so I’ve heard. Serious malnutrition. Very many emergency bathroom trips per day. Intense pain. Colon removal. Sometimes even rectum removal. In that case the small intestine would have an exit through a hole in your abdomen, and its contents would empty into a bag to wear all the time. Sharing my experience with Crohn’s almost feels like an insult to the “real” #crohnswarriors.
 
Usually, I don’t get worked up when I start having symptoms. Two things are different this time around:
 
1. Recently, I listened to a podcast episode where a woman shared her struggles with Ulcerative Colitis. Her struggles are much greater than mine in general, and her story brought me back to what life was like when I was first diagnosed. While I try not to create any drama around my flare ups, it’s not something to just brush under the rug. I don’t want to take it for granted that a flare that starts out mild can’t get out of hand or that I’ll be this lucky forever.
 
2. Dominick and I had a miscarriage last year and are at a stage where we’re trying to have a baby again, another thing we’ve learned not to take for granted. When your intestines are inflamed to the point that there are bloody, open wounds, you’re not absorbing as much nutrition through your intestinal lining as you’d like to be, especially if say you’re trying to get pregnant and have a healthy pregnancy.
 
All of that said, I want to reiterate that for the most part, my experience with managing this disease is fairly limited. Everyone has their own unique bio-individuality to consider when finding out what works for them. This is all in my site’s disclaimer, but I want to make this crystal clear: Please do not take what I say as medical advice. I recommend you consult your physician or gastroenterologist in coming up with your personal battle plan to manage your disease. 
 
I just know that my doctor is always surprised I do so well off my medication, and when I have had small flares here and there his recommendations are to take Imuran (immune suppressant) as a long-term solution and Prednisone (steroid) as a short-term solution. I took both of these in the past and am very thankful to be able to have come off of them, because I hate the side-effects. Imuran is less terrible, but the regular blood work it requires is a PITA, and in the amount of time it takes to have an effect I’ve noticed I can stop a flare on my own. After my first flare I did take a biologic drug, Remicade, via IV treatment that seemed to do me well. 
 
How exactly do I manage Crohn’s Disease and mild flares up without medication? I took a long time to get to the point, but that’s why I’m writing this post today. First, I look to manipulating my diet and managing stress. Below are the considerations I take:
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EASE DIGESTION 

Even normally healthy people can do with giving their guts a break from time to time. That’s one reason intermittent fasting works well for a lot of people. Modified fasts can also be an option – liquid-only (like say bone broth or low-sugar juices).
 
When you are eating, take in mind that even “healthy” food isn’t the easiest to digest. Small seeds, whole grains, and raw fruits and veggies can be particularly troublesome. They can have high amounts of insoluble fiber, which is not broken down by the body and can irritate the gut lining, especially during a flare. Removing peels off fruits and veggies and cooking them well can help to break down cell walls, easing digestion.
 
Soluble fiber, on the other hand, may soothe your intestines. It breaks down into a gel-like substance as it moves through the intestinal tract. Rolled oats are my go-to.
 
Supplementing with digestive enzymes can also assist your body in getting as much nutrition out of what you can consume while minimizing the work it has to do. 
 
Personally, I avoid nuts entirely while flaring, but if you do choose to include them in your diet, try soaking them ahead of time. This is always a good practice, as it removes a majority of plant-toxins and also makes them easier to digest.
 

MANAGE INFLAMMATION 

You have to add this layer to the nutrition approach, because foods that are easy to digest aren’t really the healthiest. I find myself frustrated with how limited my options are during a flare, and then I feel like a butthead since, like I said, I have it SO MUCH easier than the majority of people with Crohn’s.
 
Your intestines are inflamed during a flare-up. Sometimes inflammation can be a good thing, like say when you break your arm and inflammation prevents you from being able to bend it and injuring it further. When your own body is attacking your intestines and the high levels of inflammation are decreasing your overall bodily function, we obviously don’t want to exacerbate it.
 
Let’s take sugar for example. It’s really easy to digest, but because of how inflammatory it is, I get more strict than usual about keeping it out of my body during a flare. Refined grains (namely white flour) are something else I choose not to include in my diet in general. Neither of these processed simple carbohydrates are nutritious at all, so they’re not going to help give your body what it needs ever, especially when you’re trying to heal. They’re both, again, highly inflammatory.
 
Dairy is also commonly inflammatory, but some people report benefiting from eating no-sugar-added yogurt during flares. I’m not one of those people, so I completely eliminate it.
 
Now let’s get extra here: nightshades. Tomatoes, peppers, potatoes, and eggplants are in this family of plants. There have been many studies that have found people with auto-immune diseases or excess inflammation in their body do significantly better on a diet free from these bad boys. Arthritis is probably the most common condition studied in relation to nightshades – it’s also an auto-immune disease where the body is attacking the joints. On one hand, potatoes are high in soluble fiber which some can argue is soothing to the gut, but they’re also nightshades, so until you know for sure you tolerate nightshades well, avoid them. 
 
Fried foods, excess alcohol, and unnatural additives are also to be avoided during a flare and as often as you can all the time. They’re inflammatory and health-diminishing.
 
There are certain foods you can add to your diet to help fight inflammation. Unfortunately, I eliminate many of them during a flare because of their high fiber or seed content. Some safer options (in my experience) are avocados, turmeric, and fatty fish like sardines (it’s my experience with Crohn’s that made me start liking these little guys). Adding a good quality Omega-3 supplement is a great idea in general, and you may consider upping your dosage during a flare. It can be such an important part inflammation control that it can dramatically improve outcomes of traumatic brain injuries if given close to the injury occurrence. When I’m not flaring, I enjoy other anti-inflammatories more regularly: berries, broccoli, and grapes.
 

STRESS 

When I get a flare up, I ask myself what could have caused it. Usually the answer is stress, since my normal self-care measures are pretty much standard (see below). My first bad breakup was when I got my second-worst flare up, and I actually did get back on medication for that one.
 
Stress is super inflammatory. During high-times of stress we’re also less likely to make good decisions for ourselves. Double trouble!
 
There’s acute stress and there’s chronic stress. As someone who also struggles with anxiety and depression (much more than I struggle with Crohn’s), stress management is definitely an area where I can always improve. I mostly manage my chronic stress and keep it under control, but when certain things happen in life like going through said breakup, having a miscarriage and experiencing a COVID-19 crisis with the rest of the world, I’ve learned it pushes me over the edge.
 
Chronic stress goes beyond just worrying. Even good things, like a challenging workout, can add stress to your body. There’s also less obvious sources of stress like toxins in our environment. Fragrances and chemicals in the air, on our skin, and in our homes can contribute to the toxic load we’re carrying around with us every day.
 
My regular journalling practice has helped me a ton, and I also make time to move every day. In this current flare, I’m working to finally give an honest try to getting consistent with mediation. I also know during this time that my daily movement practice should be gentler on my body, as I want my body to focus it’s healing efforts towards my intestines versus growing bigger, stronger muscles. 
 
There’s less we can do with acute stress, because so much is out of our control. I’m learning that I can experience post-traumatic growth and increase my resiliency by slowing down, taking more time for self-care, and opening my heart to experience my feelings fully and connect with others during tougher times. This blog post, for example is one way I’m doing that – I’ve gotten more personal.
 
I also have this freebie for eating for stress management, but understand some recommendations run counter to a protocol I’d advise for a flare-up.
 

NORMAL LIFE 

So I will say, I feel like I’m pretty sensitive to foods. Maybe that’s because I have Crohn’s. Bloating is the first thing to happen when I eat something I don’t thrive on: dairy, sugar or other refined carbohydrates, grains, alcohol, beans, small seeds, and raw veggies. I also notice joint pain, head fog, fatigue, breakouts, and crankiness. Unless I see blood, I don’t classify any symptoms as a flare. I know my body pretty well, and unless I’m flaring, I’m not crazy strict with eating. It’s normal life for me to mostly avoid the foods I don’t tolerate well, and I don’t create a lot of drama around the unsurprising consequences when I choose to deviate.
 
To paint a clearer picture, I mostly eat a paleo diet (no grains, sugar, additives, legumes) that’s pretty veggie and fat heavy. Staples in my diet are a Bulletproof coffee every morning, collagen powder in my smoothies, berries, organic and pasture-raised chicken eggs, lots of greens (usually steamed or blanched if not baked), sweet potatoes, quality red meats (grass-fed, pastured, organic), and wild-caught seafood. I don’t eat things like Chia seeds, raw veggies or other “health” foods that might irritate my gut, but I occasionally indulge in sugar. It’s a way of life for me, but I can see a lot of my normal habits have been informed by my prior struggles with Crohn’s while also leaning on what I know about nutrition for optimal health.
 
I move every stinking day, mostly without fail. I journal. My house products and personal care products are “clean” and free from nasty chemicals and fragrances. Sleep is a huge priority to me, so I make the time, even though I haven’t figured out how to sleep through the night. We have HEPA air filters at home and filter our water. These other non-diet measures I’ve taken to promote health in my life probably also have some impact in how I manage my disease, but who knows. They’re certainly worth mentioning.
 

CURRENT FLARE PROTOCOL

I’m sharing my approach in the hopes maybe people can gain hope or ideas in managing their condition, but I recommend you consult your physician in coming up with your own approach. Everyone’s body responds differently to everything and at different times. I don’t even know exactly how my own body will respond to my current protocol – I will say that when you go on any kind of elimination diet, it’s a good idea to slowly add things back to your diet one by one and then monitor how you respond. Treat it as an experiment. You may be able to tolerate some things I cannot or don’t do well with things that don’t bother me. There are also definitely more strategies and supplements you can try out, but for me, this is what I’m doing now that’s different from my normal routine, and it’s relatively simple and inexpensive:
 
– Manage stress with adding meditation to my routine post-workout, easing back on workouts, and waking up in the AM without an alarm.
 
– Limit insoluble fiber as much as possible by eliminating most veggies, grains, nuts, and fruit skins for now.
 
– Nothing processed or fried.
 
– No added sugar.
 
– Only grains: white rice, oatmeal.
 
– No nightshades.
 
– Double up on my fish oils.
 
– Ugh, and I didn’t mention it before, but coffee. I’m giving it up for now.
 
Usually during a flare, I simply tighten up and deviate less often from my standard diet. This time, I’m pulling out all the stops though to hopefully overcome this flare quicker.  I will schedule an update to let you know how this worked for me this time around or if I decided to do anything differently.
 
Update 4/21/20: I’ve been imperfect about implementing the more strict guidelines to my lifestyle, but I notice my flare improving. The only real setback I had was ordering a salmon burrito from Rubio’s. The ingredients were all pretty compliant with my protocol right now, but I suspect they used bad oil or something else that worsened my flare for a day. I’m scheduling an appointment with a new gastroenterologist this week. I’ll admit, it’s mostly because I’m going public with sharing how I manage my condition and feel a responsibility to lead by example. It’d be good to have an established specialist to see in case things don’t stay as relatively chill as they are now, and who knows? Maybe my new doctor will have some insights I hadn’t thought of or been presented with before. I don’t want anyone to not see their doctors because of this post, I just want it to highlight that you can take charge of your health, and that I don’t think medication should be the only thing you manipulate to manage your symptoms. Have conversations with your doctors about this information. Do your research. Pay attention to your own body. Learn how you can nourish yourself in ways that contribute to better health. Honor that every body is different and this disease manifests itself in different ways for different people and will manifest differently for you at different times in your life because of various factors. I’ll post another update next week! 
 
Update 5/19/20: We’ve come full circle. I started out this post with a little case of foot in mouth, and that’s where I’m wrapping. You’ll see what I mean in a moment. I will say that I still stand by the information above as what works for me and the approach I would take in managing a flare FOR ME, so I’ll leave it up in case anyone finds it helpful.
 
Fortunately, I was able to get into a gastro appointment amidst everything going on with COVID. I really like him and at the very least, I am glad to be established as a patient with someone close by who I like and trust. He took the time to understand my history, my current symptoms, and learn what I do to manage Crohn’s medication-free. He is as surprised as my last doc at how well I do, and since diagnosis of Crohn’s is imperfect, it has me back to wondering if I even have the disease and identify as someone with Crohn’s. Because guess what else? My symptoms this time around actually point to my flare not being a flare at all, but perhaps some irritated internal hemorrhoids. My doctor and I only chatted, so there’s no way to know for sure what exactly is going on in my insides. I appreciate a conservative approach, and should symptoms get worse or I decide to give my medication-free approach a helping hand we discussed possible options for treatment of either Crohn’s or hemorrhoids. Before we’d go either route, I’d get an anoscopy (a really dialed back version of a colonoscopy) to get a clearer picture of what’s actually going on in my body. At this point, my symptoms are almost entirely gone – I just have blood in my stool infrequently, and I will say I notice it’s after eating off my standard protocol. I have added more veggies and fiber back into my diet and have gone back to my “normal life” protocol. When reintroducing more fiber to your diet, do so slowly, over the course of several days or you’re inviting bloating, gas, and abdominal discomfort into your life.
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I hope I gave you some food for thought. Being able to manage this disease with diet modification has given me a lot of freedom. If you have Crohn’s or Ulcerative Colitis, I’m curious what you’ve found that helps you to prevent or overcome flare ups. Email me, comment below, or hop on a call!
 

Thanks for reading!
Caitie

P.S. Would you like to hear more about my story getting first diagnosed? Let me know, and I’ll write it up! 

 

P.P.S. It was my experience with Crohn’s Disease that first got me interested in using nutrition as a way to pursue health versus just a smaller pants size.

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