This is a hard post to write. Because I vowed in 2011, when Asher was a baby, that this would never happen again. It’s also difficult, because if I let it, it can make me feel like a failure. If I sit and wallow in my thoughts, I start to blame myself for not being strict enough or not trying hard enough.
You may have noticed that I was pretty quiet on social media and my blog for the month of March and much of April. Or maybe you didn’t, because it’s easy with social media for life to look mostly perfect. Unfortunately, I was battling an ulcerative colitis flare-up for a few months and my bandwidth was pretty much taken up by trying to get well and still take care of my family. I looked so unwell that I avoided posting on social media in hopes of not concerning everyone. I didn't even realize how ill I had started looking until Ryan snapped this photo of us on St. Patrick's Day. I had forced myself out of bed that day to carry on our tradition of green eggs and ham.
As much as I hoped to never have as severe of a flare up as I did when Asher was little, I knew there was a real risk of this happening again when I got pregnant with Easton. Autoimmune diseases very commonly flare up postpartum, and I know from experience that mine definitely does. I have had a flare now after each of my 4 pregnancies, but after Asher (and now Easton) have been the worst. I flared in 2014 after Aila’s birth and death, which I expected due to the hormonal shifts, and especially because of the emotional stress. But with a very strict diet and supplements, I was able to reel it in and recover quickly from it. It never got bad enough to interfere with my life, and my symptoms were fairly minor. When I got pregnant with Easton, I tried to be more diligent to eat well during and after pregnancy, although I was far from perfect, the threat of a flare was at the forefront and I was keeping a close eye on it.
Unfortunately, though I gave every effort I had to combat it, this one was much more severe than anything I have had over the past 6 years and was really difficult to control.
I was bedridden for a few weeks, and unable to leave my house for almost 8 weeks. Aside from the typical ulcerative colitis (UC) symptoms, I ended up having extreme pain in my joints and bones. I’ve only ever experienced that pain twice with a flare up, first when I was newly diagnosed in 2007 and on 100mg of steroids, and second in 2011. I always thought that pain was side effect of the prednisone, but I found out this time that it’s actually peripheral arthritis from all of the inflammation in my body, and made any movement really painful. My bones and joints felt like they were bashed with a metal bat. I had terrible night sweats that were unbearable and made sleeping near impossible, and then the inflammation and immune imbalance moved to my head and eyes and I was ridden with pain that is comparable to a bad sinus infection and had a 5-day long migraine. I also became anemic very quickly, which caused severe nausea all day long, fatigue, and dizziness. My hair started falling out in pretty large clumps again, and I had zero energy.
I only was able to come out to kiss Asher goodbye for school and nurse Easton, once in the morning and once at bedtime. I saw my boys for a total of about 45 minutes a day. It was lonely, and incredibly depressing. Laying there for days on end, and having exhausted every TV show and book I enjoyed, I started to get into my own head and lose hope in the message of healing through food that I have believed and passionately spread for the past 7 years. Nothing that I had done in the past to help seemed to be working and I was deteriorating fast, which was really discouraging. I was pretty certain I would end up in the hospital, on steroids and needing blood transfusions again, and even succumbed to possibly needing to go on Remicade. Anything to get well and get back to being a mom.
But before taking any drastic measures, I wanted to try to figure out how it got so bad, in hopes of finding a more natural way to recover. Looking back, I feel like I didn’t take it as seriously at first, because I had beaten minor flares in the past. I dabbled with a few different things to curb it, and vowed a few times to do a Whole30, go AIP, or stop eating treats, once I ____ (insert “finished writing my book”, “got back from vacation”, “our house guests left” etc.).
I started drinking a few cups of bone broth a day again, and went back on some of the supplements that my naturopath used in 2011, but without consulting her or a doctor. I’d still nibble on things I shouldn’t have here and there, and I wasn’t watching my own body to see if there was correlation between what I was eating and my symptoms. Interestingly enough, once I slowed down enough to start paying closer attention, it turned out that a lot of what I was consuming that I thought would help, was making things worse. Broth was actually aggravating things (I think it was the onions and carrots in it), and even some of the supplements were making things worse.
When my symptoms really started to worsen, about 4 weeks into it, I went on my standard flare-up fighting diet – a curated mix of AIP, GAPs/SCD/and low residue. I cut out most fruits and vegetables, all nuts and seeds, dairy, eggs, sweets, starches, and nightshades. I stripped my diet down to barely anything to try to nip it in the bud – cooked plain hamburger patties with mustard and avocado, salmon, roasted chicken, applesauce, and homemade jello. After a couple of weeks of only eating that, my body started getting pretty angry. I lost weight quickly, which added to the joint pain and I caused serious heart palpitations. My brain also started rejecting pretty much all food. Chewing and swallowing food made me nauseous which made me not want to eat at all. I knew from past flares that this is what usually got me into the most trouble, so I force-fed myself whatever I could just to keep eating. While the bleeding and pain were largely uncontrollable, I did notice a big difference in the severity from what I ate day to day. This time around was a bit more bearable than the flares I had prior to changing my diet.
Only a few odd food items sounded appetizing, and I ended up only being able to stomach gluten-free mac-n-cheese, my grain-free chicken nuggets, and applesauce. I also craved mashed and baked potatoes, but after trying those once and experiencing really severe symptoms soon after, I decided that all nightshades (not just tomatoes and peppers) were out as well. What I ate was strange, and counter to what I usually follow for a grain-free and paleo diet. In keeping with my usual mantra about doing what works best for your body, I went with it because it got calories and fat into my body, and didn’t make me vomit or exacerbate my UC symptoms. Oddly enough, it’s very similar to what I wanted to eat during my last big flare in 2011.
I went to see my gastroenterologist as a precaution, and as I expected he prescribed prednisone immediately, without even doing blood tests. I knew the next recommendation would be Remicade, as it had been pushed so many times in the past because my UC was “such a severe case.” Ryan and I left the office and simultaneously declared that I would not fill the prescription. I was on 100mg of prednisone in 2011, and it about killed me. Whatever symptoms it possibly helped control from my UC, were overshadowed by the multitude of debilitating side-effects the prednisone caused. We labeled it the devil-drug back then, and have done anything and everything in our power to refrain from it since.
Since my body wasn’t responding to the supplements and homeopathic remedies from my naturopath, as they did previously, I decided to seek the care of a functional medicine MD. One thing I feel like I haven’t done in the past, is dug to find out why I was flaring up. I didn’t want to just mask the symptoms I was having, I wanted to get to the root and work over time to heal and prevent this from happening again. We did a series of blood and stool test, which came back with a small bacterial overgrowth in my intestines, and as expected, very high levels of inflammation.
Thankfully my symptoms started to improve after a new protocol of low dose naltrexone (LDN), and gut-healing and anti-inflammatory supplements, and maintaining a very simple and strict diet. We will also begin treating the underlying issues that were found in the tests, especially replenishing the majorly lacking essential minerals and nutrients and killing off the bad bacteria in my gut. I also haven’t been able to tolerate any probiotics while I was symptomatic so I’ll be adding those back in slowly to work on repopulating the good bacteria and achieving a healthy gut eco-system.
The perfect Storm
I’ve spent a lot of time over the past couple of months beating up on myself for not being perfect. For eating that ice cream or that gluten-free pizza, or those bowls of oatmeal in the morning to help increase my milk. I’ve rehashed every food, lifestyle, and supplement decision and tried to put together the puzzle pieces to figure out why this happened. I mainly blamed myself, but as I looked closer, I realized there was a lot that led up to this that was out of my control.
Medications: I had been on an anti-inflammatory prescription called mesalamine (Lialda) for many years after as a precautionary and maintenance measure since it did not cause any side effects. In the Paleo community, Western medicine can be vilified, and we can feel like a failure if we do not achieve health through diet alone. I came to the decision that while it didn’t work on its own (I’ve had many flares while on Lialda without diet), it potentially could be working hand in hand with my diet.
Enter that failure complex – I get hundreds of emails weekly from you all. Testimonies of finding health for various diseases, and quitting medications and staying in remission. I have put unnecessary pressure on myself for the past 7 years to try to live med-free just like these wonderful testimonies. After a couple of years of feeling well and eating a paleo diet, I started lowering my dose of Lialda and weaning myself off of it over the course of a year. My body now did not have the anti-inflammatory support from the drug, and I wasn’t treating the inflammation naturally. Either way, I needed to support my body with something more than just diet.
Lesson 1: Don’t put pressure on yourself to rely on food alone. Some diseases, especially when you are in a very severe flare up, may need help on other fronts. Diet can be healing and preventative on so many levels, but to get your body to a place of being able to accept the nutrients and start healing, sometimes medications are necessary. And I think it is wise to work with a practitioner to reduce or go off of medications if you chose to do so to make sure you’re doing it safely.
Exigent Circumstances: I had a round of antibiotics in the hospital for an unplanned c-section with Easton. I’ve experienced flare ups in the past from antibiotics (they clear out both good and bad bacteria) so I knew to take a good probiotic afterwards but I still don’t think my gut health was top notch afterwards. We also all got hit with the Norovirus, which completely derailed any digestive health I had. It wiped out any good bacteria I had tried to build up after the course of antibiotics, and induced inflammation in my gut. I tried to go on the defensive afterwards but didn't do enough.
Lesson 2: Life happens and no matter how well you plan or try to counteract life’s circumstances, you can still fail. Don’t get disheartened, and know that you will have to work twice as hard to be disease free – – and that is ok.
Stress: If you have an autoimmune disease, you know that stress can be your worst enemy. I’ve had a ton of stress over the past 2 years. Most of it stems from Aila's death, which transitioned over to my pregnancy with Easton, as well as his wellbeing and safety after birth. I'd spend most nights waking up looking over at him peacefully sleeping and think that he died. I was delirious at night and there were dozens of occasions where I'd frantically pick him up, startling him awake, just to make sure he was in fact still breathing. I also stressed about whether I was making enough milk or if something I was eating or taking was making him gassy. In addition to that, I am a type-a person and stress over pretty much everything. I stressed over writing my new book and whether or not everyone would like it, that I wasn’t posting enough new recipes on the blog, that our house updates were stalled, or that Asher wasn’t getting enough attention after the new baby arrived.
Lesson 3: Stress on the body can make Autoimmune diseases so much worse. Do your best to not stress, which is easier said than done – – I know, believe me.
As moms, we also put so much stress on ourselves to breastfeed, especially with all of the campaigns out there for breast is best, or normalize breastfeeding. After my supply decreased from the Norovirus, I was so worried about it and took milk inducing supplements and ate a ton of oats in hopes of it increasing. I believe they caused serious gastrointestinal upset, but my mommy blinders kept me from seeing it because I was only focused on the goal of more milk. I actually believe these were the final straw that sent me into the flare, after everything else from above building up.
I love breastfeeding. I think it is one of the most special bonds between a mother and her child. But women are under so much pressure about it. They worry their babies aren’t getting enough, or their supply is too low. It’s a terrible feeling to feel like you can’t provide for your child. I was forced to stop with Asher at 9 months because of my illness, which is still a fantastic amount of time, but I have had guilt about it ever since. I hated that my health forced me to stop, and we didn’t make the decision together based on his needs and my needs. I always felt like I was robbed.
With Easton, I chose to forgo certain supplements that may have been able to help this flare because they were unsafe for breastfeeding. I also forced myself to sit up in bed and pump and nurse even when I was barely functioning. Ultimately, I had to realize that “mom” was more important to him than “mom’s milk,” and take care of myself first so I could be present for him and Asher.
Lesson 4: Don’t lose the forest for the trees or in this instance, the baby for the milk. Make sure you are there for your family first, and not pursuing something that may hurt them in the long run.
Eating: With all of that stress and busyness, also came leniency with the way I was eating. During my pregnancy and shortly after, I started allowing some non-gluten containing grains like rice and oats in the name of milk production. I had been well for so long, I thought I could tolerate bits here and there. I didn't notice any immediate symptoms from eating them and I also wasn’t careful about cross contamination because I didn’t think I was sensitive to it, but I believe they caused inflammation and over time, my gut said enough is enough.
Lesson 5: Diets are hard, and occasionally you “cheat”. That is ok. Just be sure to listen to your body to hear any hints of protest. Don’t let occasionally turn into sometimes, turn into frequent just because there are no immediate side effects.
Me: My self-care was also seriously lacking. I was low on sleep from a newborn and not accepting much help because I wanted him with me at all times. I stopped being diligent about my supplements in fear that something would cause him gas. I didn't take time to journal, stopped taking walks, and wasn't spending anytime just being quiet during the day. When I wasn't with E, I was working on my book, traveling, or running Asher somewhere.
Lesson 6: Being a mom is hard work. Being a working mom can be even harder. Be sure to prioritize your disease, even when you are not in a flare. Take care of your self, rest, and relax. It’s ok to need a break.
I feel like just when my story is complete, my book continues to add blank pages and they continue to be filled in. Thankfully, I can say that I am in recovery, but I am still not out of the woods. I am no longer anemic and have started gaining back some weight, and am able to go about my normal life again. It will be a long process of rebuilding and replenishing.
After being diagnosed with my disease, I spent a lot of time asking “why me?” I again tried to answer that question with my daughter Aila’s diagnosis and death. I’ve come to terms that I may never fully understand the answer on this side of heaven, but I have been blessed to see my suffering used to help others, which is something I never expected. It doesn't take away the pain, but it somehow makes it all feel worth it.
When I’ve been in a season of health for a long period of time, I tend to block out the painful memories of the misery and somewhat remove myself from the problem. I started this blog to help others and offer hope, and if I lose that empathy for others suffering, then I am not fulfilling my calling. My theory is that I experience these flare ups to remind me why I am doing what I am doing, and to continue striving to help everyone out there that is going through tragedy, be it health or loss. I believe in healing, and do believe I will experience full healing at some point. But for now, I think I’m meant to still “have” this disease and manage the symptoms with diet. So if you're trying, and you're still getting sick here and there – know that there's no such thing as a perfect healing journey, and know you are not alone.