Written in June, 2020
Growing up, I was always “healthy.” At least, I didn’t get sick very often and was always naturally lean. However, being born in 1980, my arrival coincided with the beginning of the processed food explosion. My generation was the first, starting from infancy, to grow up eating more packaged, highly-processed, “edible food-like substances” (awesome term created by author Michael Pollan) than real food.
It’s no wonder that we have seen a dramatic eruption of autoimmune disease as well as obesity, cancer, diabetes, heart disease, among other devastating health effects in the last few decades.
But let’s go back to the ‘90’s – as I said, I was healthy by the standards of the day. Then almost overnight, in 1999, I rapidly went from a normal 19 year old college student, to experiencing a sudden onslaught of ceaseless bloody diarrhea, weight loss, dehydration, and the life literally being sucked out of me. I still remember the night my symptoms began to fully present, it was after a dinner of……wait for it……McDonalds.
After a week or so of these worsening symptoms I made a fateful appointment at the doctor (a primary care physician) who told me……wait for it……that I had hemorrhoids and to take Pepto Bismol for the “unrelated” diarrhea. WHAT?
Since I was young and didn’t even remotely know how to advocate for myself back then, I went home without answers and experienced my health declining rapidly for another week. Finally my mom decided she didn’t care what the doctor said and that I needed to go to the ER, stat. After one look at my colorful “stool sample” the ER doctor immediately admitted me and I was given my first colonoscopy. It was crystal clear from the colonoscopy that I had the autoimmune disease, Ulcerative Colitis, which causes inflammation of the large intestine and develops bleeding ulcers in certain parts or throughout the entire colon. That night I was officially given this diagnosis, and was left to ponder the idea that I had a chronic (AKA "incurable") disease that would potentially change life as I knew it forever.
After being put on tons of corticosteroids, antibiotics, and an anti-inflammatory drug, however, I improved at an impressive pace and went on to restart my young life, thus returning to my late ‘90’s teenage regular habits and diet. Of course that wasn’t the end of it, but at the time I felt like I got my life back without much collateral damage (thanks to the pills I was popping every day), and even thought, maybe having this incurable disease won't be a big deal after all.
But as was expected with a chronic autoimmune disease, over the next 10 years I did indeed experience minor to medium sized flares here and there, some more problematic and disruptive than others. Each time I would call the doctor who would have me take the standard protocol of steroids and antibiotics, as I remained oblivious to the side effects or potential ramifications of these medications. I was still taking a large dose of the anti-inflammatory drug on a permanent daily basis as well.
Then after transferring from community college and moving to a university, the lifestyle change again prompted a decently problematic flare, which led to me leaving school and coming back home to familiar territory. I started working full-time and found a regular routine that included the beginning of my interest in nutrition and health – though at the time, diet changes meant falling for the low fat/low calorie/highly processed rhetoric of that era (remember Lean Cuisines?). Still, some healthier habits such as being a little more aware of the food I was eating began developing around this time.
As my health stabilized again I took up running and began eating less junk food and cut out most fast food – admittedly as I was in my early 20’s this was mostly for vanity reasons more than for health reasons, but I was slowly learning nonetheless.
A few years later I got married and with this big lifestyle change came another flare. This time the steroids only partially helped, so following the advice of my gastroenterologist at the time (and still failing to do my own research) I "leveled up" and started taking an oral immunosuppressant drug, and was on that for about a year. It quickly put me back into complete remission. Then I decided I wanted to consider pregnancy so I weaned myself off of the immunosuppressant and stopped taking birth control and then immediately got pregnant just like the after school specials always said I would (well surprise!). Thankfully I had learned a whole lot about nutrition by this point and had switched to eating a lot of organic foods. My diet was far from perfect still, but it wasn’t terrible and it helped me to have a healthy pregnancy and a healthy baby (who is now a tween!). Little did I know what was coming, however.
13 months after giving birth, the storm hit. I had stopped nursing a few months prior thus triggering a normal post-breast feeding shift in hormones. But being that I still had an autoimmune disease, the hormone shift, coupled with the fact that I wasn’t sleeping nearly enough and wasn’t taking care of myself physically, emotionally, or spiritually, led to THE MOTHER OF ALL FLARES. It was so bad that I can honestly say that I’m fortunate to be here to write this today.
It started slowly with my usual symptoms – loose stool turned to diarrhea turned to bloody diarrhea, turned to living in the bathroom with straight blood coming out and no bowel control whatsoever. I was hospitalized with lengthy stays three times in the winter of 2010. The massive amounts of steroids (along with massive amounts of antibiotics) I was given were semi-effective when given intravenously, but as soon as I’d be sent home on oral steroids I would immediately crash again.
One of the hospitalizations landed me in the cardiac intensive care unit for days because my heart rate was so tachycardic from severe dehydration. Another time I had to get a nasogastric tube put down my throat because I was so sick I couldn’t swallow the contrast solution needed to do a CT scan — let me tell you that I have GIVEN BIRTH and I can honestly say that the NG tube experience was WORSE.
Yet another hospital highlight was when I was put in the pediatric unit (at 29 years old) because they were out of beds on the general floor and by that time I looked like a prepubescent kid anyway.
At my lowest recorded weight the scale said 84 pounds while my regular weight at the time was closer to 110 pounds. I’m almost 5’4”. I was always thin but now I was skin and bones.
I was experiencing a pounding heart and inability to sleep from the steroids and from constantly having to get up to empty bloody diarrhea (or often just blood) from my bowels. I had a colonoscopy in the hospital that showed severe colitis throughout my entire colon, and there was so much inflammation that the doctor physically couldn’t get the scope past a certain point. A surgeon started stalking my hospital room daily as threats of removing my whole colon were pushed on me at increasing levels. The interesting thing is that I was actually too sick to safely undergo surgery – I can see in retrospect that being too sick in that moment was actually a huge blessing. SPOILER ALERT: I still have my colon.
After over a month of this, I was literally wasting away and my family was preparing for the possibility that I might die. At this point since surgery wasn’t really a possibility, the doctors decided to start me on a powerful intravenous immunosuppressant drug, even though it typically takes a while to start working. This scared the crap out of me (no pun intended) as by then I had finally done my research and saw how terrifying the side effects and consequences of purposefully SHUTTING DOWN YOUR IMMUNE SYSTEM are, but I had no other choice. I had a 14 month old baby who I had hardly been able to see for weeks. I needed to live. I needed to get home.
The drug did its job surprisingly quickly when coupled with the high doses of steroids, in terms of getting me to a state where I was able to get home without immediately crashing again, but I was still in pretty terrible shape for a long time. For the next 6+ weeks I was still confined to bed and had to rely 100% on my husband and my mom to care for me. I was finally home, but I still wasn’t able to be much of a mom to my baby, which broke my heart more than anything.
Things always got worse late evening and then all night long, as I spent night after night getting up repeatedly and dashing into the bathroom. When I was actually able to fall asleep I would wake up completely drenched in sweat from “steroid night sweats” as my body desperately tried to handle the toxic load from the medications along with everything else. I was still chronically dehydrated as even taking too big of a sip of water would send me rushing back to the bathroom.
These were the absolute hardest nights of my life. They were also the most spiritual nights of my life. Nothing brings you to your knees or gives you a greater desire for connection to a higher power like complete and total helplessness and desperation.
Eventually, things slowly started to get a little better. I had a little less bleeding and a few less bathroom trips. I could get up and make it through a day without collapsing in exhaustion. I could sleep for several hours at a time at night. I could take care of my daughter again. I was still sick but well enough to function.
I continued to get the immunosuppressant infusions even though I hated every single thing about it, and the infusion experience itself was absolutely horrible. I had to go back to the hospital for each infusion where I would sit for hours and watch my new frenemy drip into my veins. Despite prescribed preemptive Benadryl I felt a strange and uncomfortable physical reaction each time as my body said WHAT IN THE HELL ARE YOU DOING TO ME RIGHT NOW. I started to notice that I experienced an increasing allergic reaction to the infusion each time which was scary to say the least.
As the weeks went by the infusions seemed to be working less and less. I had hit a plateau and while I wasn’t getting noticeably worse, I wasn’t making progress either and couldn’t reduce the amount of steroids I was taking.
Finally at the end of that summer, I mentally just couldn’t take another infusion experience. I told my doctor I couldn’t do it, so he had me try another immunosuppressant, but this one you inject into your belly yourself – so fun! I went into the doctor’s office for my first injection so they could show me how to do it and within 2 hours I was in the ER again because I was having trouble breathing. This blessing in disguise was the welcomed end of my infusion/injection days.
I was so over the whole experience by now that when my doctor immediately said we will try another immunosuppressant (because of course there’s so many to choose from!) I told my doctor I was taking a break. He called me a fool and waited for the inevitable. And for a couple of months I was actually good (probably because the injected drug had worked pretty well despite its best attempt to kill me), and then sure enough, I started crashing again.
I was so emotionally exhausted and mentally compromised by this point that I just IGNORED everything. I ignored the fact that all of my symptoms were coming back with a vengeance and just kept praying for a miracle and kept desperately trying to live my normal life with my husband and baby. The thought of having to go back into the hospital again made me wonder if death would be preferable. So I kept ignoring things until I just couldn’t ignore them anymore. Again motivated by my love for my little girl and not wanting her to grow up without her mom, I went back to the ER, was of course immediately hospitalized again, and by this time things had gotten so bad that I needed two emergency blood transfusions.
But this time, I'm beyond grateful to say, things were different. The steroids that had done practically nothing for me in the prior hospitalizations, now worked almost immediately. I stopped fighting it and started taking another immunosuppressant, orally this time (ironically the same one that I had taken briefly before pregnancy). And I started to heal, fast.
The drugs got me where I needed to be, and within just a few months I had a lot of my life back. I was able to taper down off the steroids but was to remain on the immunosuppressant, of which I could never shake the fear of knowing that it came at a price. The list of side effects coupled with the risks of what was intended to be a permanent stifling of my immune system, terrified me.
It didn’t take long. Less than a year later the side effects were already becoming cause for major concern and both I and my doctor knew I needed to try coming off of them. But this was not like before. Now I understood that I needed to find an alternative way to not just heal, but to stay healed.
The drugs saved my life and I will forever be grateful for them, but so help me, at 30 years old, I wasn’t going to let them own me.
In preparation for my new journey, I read everything I could get my hands on about healing through nutrition, diet, and lifestyle. Though there wasn’t a whole lot out there at the time (this was late 2010) specific to natural approaches and diet changes for autoimmune disease, what there was out there, I found, and consumed it like an unquenchable fire.
This was the onset of my passion (some might call it obsession) for learning how we are meant to eat and live, how we are what we eat, how food truly can make us or break us, and how we each have far more control over our own health than we ever knew. As Hippocrates said, “Let food be thy medicine, and let medicine be thy food.” I had the ultimate motivation to do whatever it took. Having experienced the darkest days of being so close to death and almost losing everything, I knew I NEVER wanted to go back there again, and I would do whatever was in my power to not let that happen.
When I walked out of my fourth and last hospital stay of 2010, I somehow knew in my heart that it would be the last time. I didn’t know how yet, but I had an awareness deep within that this was all part of my life’s purpose. As my journey led me down a path of searching for real health, and what wellness really means, I’ve found myself more and more equipped to share what I’ve learned with others.
It’s been over 10 years since the flare of all flares and I’ve learned so much and am so grateful. I have been completely flare free since early 2011 and medication free since I took that last blasted pill in the fall of 2011. My colon is permanently scarred from its battles but otherwise has remained healthy. My latest colonoscopy last summer was the best one I’ve had in 10 years (no sign of new inflammation at all). I am so grateful to have learned so much and now it’s time for me to share it. Hence this blog.
When I started my journey there wasn’t much information on natural approaches to autoimmune diseases out there – but now 10 years later the opposite problem exists – there is TOO MUCH information out there and most of it is conflicting. Realizing the extent of that conflicting information that exists was the final push to get me writing this blog (well that and my husband rightfully shaming me with, “You’ve learned so much and you still haven’t shared it!”).
What I know for sure is that this journey has saved my life, and I’m not just talking about physically. Every tear shed, every night filled with hopelessness, every dark moment of desperation, every frustration, every single mistake made, every time I am reminded how much more I need to learn, change, and grow – all of it has pointed me down the right path and for all of it, I am grateful. If I can help just a handful of people get their lives back for good then it will all have been worth it.
Know that I am not a doctor nor do I play one on T.V. The info I will share here comes from my personal experience, both the failures and the successes, and is meant to inspire you as you travel down the path of your own crazy health journey. So whether you find yourself in this moment hopeless and helpless against an ominous disease, are trying to prevent ever having to face an ominous disease, or are just trying to live the healthiest life that you can for yourself and for your family, my hope is that my experience and my words can bring you some support, guidance, and peace. To your health!
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