My Crohn’s Story

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A few weeks ago, I realized that I still haven’t written and shared my full Crohn’s story–the lead up to my first flare and eventual diagnosis–despite having started this blog more than a year ago, last September. I’ve alluded to certain parts of it, but I haven’t shared everything; except with my gastroenterologist, of course.

Growing up, I ate pasta, bagels, ramen noodles, sugar, steaks (I’ve loved steak for as long as I can remember), and lots and lots of junk. But, I had a fast metabolism and led an active life (gymnastics, cheerleading, swimming, riding bikes, and lots of time outdoors), so I was never overweight and was also never bothered by the food I ate. I mention this now, because I believe my Crohn’s is more of a culmination of genetic, lifestyle, and environmental factors throughout my entire life that probably started at an early age with an out-of-balance gut microbiome from a poor diet.

Even throughout most of college, food was never an issue for me. I used to love eating big, fresh salads for lunch every day and–although it was never my favorite vegetable–I could even eat broccoli without any problems. I felt like I was just rockin’ and rollin’ with my diet and fitness-oriented lifestyle at that time. Things were going great.

During college however, I put a lot of stress on my body that probably had more long-term effects than I would have ever imagined. I trained for two fitness competitions that my university hosted–training hard and dieting even harder to drop down to single-digit body-fat levels–and juggled a full-time academic load. I served as a Resident Assistant in the dorms, worked for the school newspaper and the school television news program, and was a member of the cheerleading squad, which I eventually had to give up in order to continue with the ROTC program…there’s only so many hours in the day.

When I trained for my fitness competitions, I took a lot of supplements and thermogenic fat burners, ate a lot of processed/protein supplements and bars, and depended on chemical/artificial sweeteners like saccharin, aspartame, and Splenda for my insatiable sweet tooth. In hindsight, I’m pretty sure this all obliterated my gut microbiome. Then–what was probably the icing on the cake–I received a few rounds of anthrax vaccinations while training with an Army Reserve unit during my ROTC days. My faulty immune system finally had enough. I was halfway through my college career and the first signs of Inflammatory Bowel Disease appeared–though I didn’t recognize them as such.

Things didn’t exactly happen overnight and so my body fought it’s battle fairly quietly for the first few years. The first sign, halfway through college, was blood in the toilet. I think it’s important to note here that I have a bad habit of convincing myself that nothing is wrong, when in fact it most definitely is. I also have another bad habit of not going to the doctor until it’s well past the point that I should have gone in. So, I negotiated with myself that I would see if the blood I was now experiencing with every bowel movement (or if I just strained as if I were having a bowel movement) would go away on its own. I decided I would wait a week and see what happened. This was around 2001-2002, so going straight to the Internet was not my first course of action. The Internet was still pretty basic–relatively speaking–and I certainly had no intention of entering search terms like “blood with bowel movement” or “bleeding colon” into Yahoo! or Netscape on the school’s network in the computer lab.

It crossed my mind that a bleeding colon could be the sign of colon cancer or another severe disease, yet I continued to ignore it. When I didn’t die that first week, I thought I would go ahead and give myself another week to see if the bleeding would stop. Then another week. And then another week. After a month, I remember thinking, “well, how serious can this be…I feel fine, I haven’t keeled over and died…so I’ll give it a little more time to see if it will go away…surely it’s nothing.” And then, before I realized it, a year had passed and the bleeding hadn’t stopped; it had become intermittent, but it was still there more often than not.

I finally went to the university’s health clinic after a year, because–try as I might to convince myself otherwise–I knew this wasn’t normal. A big part of why I waited so long is because I was young and embarrassed. I knew that if I was bleeding from my colon, then surely a rectal exam would be in store and I wasn’t ready for that. Until a year had passed and I knew I had to swallow my embarrassment and find out if this was something to be concerned about.

After the exam, much to my relief, I was told I simply had an anal fissure–a tear that was causing the bleeding. Perhaps this was true, but in hindsight, I don’t think it was. Food had also started giving me trouble by then, but I didn’t equate it to what was happening with the bleeding. So, with my “clean bill of health,” I went back to convincing myself that this was no big deal; blissfully unaware of what was just around the corner in the not-too-distant future.

Food finally became a big problem for me shortly after I went on Active Duty in the Army. My first (and only) duty assignment was Fort Sam Houston in San Antonio, Texas. I arrived in the summer of 2004 and quickly made friends with the other Lieutenants who were in my office. Bleeding from my colon was now just a part of my everyday life, so I stopped paying attention to that. But I couldn’t ignore the pain I started having every single time I went to lunch with my coworkers.

I’m a creature of habit, so when we would all go out to eat, I would order some version of a salad and every time, I would end up back in the office about an hour later with gut-wrenching pain and bloating. I would sit at my desk and try to hide my misery; a smile masking the pain as people would walk by.

I supposed this is when I first started tinkering with my diet with the purpose of helping myself feel better. Before, when I dieted, it was because I was training for my fitness competitions. Now I was slowly trying to find a diet that would take away my pain…food slowly became an obsession. And, over time, eating became less and less enjoyable. I started to dread going out to lunch–or just eating in general–because I knew that shortly after, I’d feel like a knife was ripping through my intestines. It was pretty clear that vegetables were my enemy and lettuce was archenemy #1. So I stuck to eating mostly meat and went low carb for a while; things were ok for a bit…tolerable at least.

I ended up making it through two and half years in the Army by avoiding salads, watching what I ate, ignoring the rectal bleeding, and limping along on a broken foot–well, a foot with one very specific broken bone in it. I didn’t know for a few years, but I broke the sesamoid bone in my right foot during a ruck march in ROTC. You may wonder how I didn’t know–trust me, there was excruciating pain…some days it felt like a sledgehammer was being repeatedly smashed against my foot–but in some people, the sesamoid bone can be a naturally occurring bipartite sesamoid (two pieces). Mine wasn’t naturally occurring, it was fractured in half. But, my swollen, black and blue foot is a story for another day. It is, however, the reason I was medically separated from the service and only spent two and a half years on Active Duty.

So it was in September of 2006 that my official date of separation from the Army came and it was at the end of October 2006 that my first debilitating Crohn’s flare up occurred.

I was at home alone, working as a freelance graphic designer…and then it hit. Totally uncontrollable diarrhea. There was maybe 15 feet from my office desk at home to the toilet across the hall. I bolted upright and dashed to the bathroom in a flash, I barely made it.

Then, just as I was getting up off the toilet, the uncontrollable urge and diarrhea struck again…and again…and again. I lost count of how many times I had gone to the bathroom. And since my rectal bleeding was still an on-again, off-again thing for me–having never really gone away–this was bloody diarrhea, very bloody. I laid on the floor, my head next to the toilet, and waited for the next round that I knew was coming.

During this time, my then-husband was away in Dallas for two months to complete back-to-back rotations at a partner hospital during his medical residency. So I was at home alone, quietly wasting away and not sharing what was happening with anyone. About a month passed with me basically living in the bathroom. I was barely eating, had no energy, and I dropped from 125 pounds to about 108…a number I hadn’t seen since before I was a teenager. At that point, I knew I should have gone to the hospital, but I wasn’t able to go 20 minutes without having an urgent bout of diarrhea. Since Brooke Army Medical Center was more than 20 minutes away, I was not going to chance driving there and risk having diarrhea in my car.

Finally, my husband came home for a weekend visit and was shocked to see the skeleton I’d become. I promised him I would go to the hospital, but it still took me nearly another month to finally go in. I needed to wait until the bouts of diarrhea were at least an hour apart before I felt I could drive myself there.

Not knowing where to start on this medical adventure that I was about to embark upon, I decided to just go to the emergency room. It was December 2006. After describing what was happening to the ER doctors, I was eventually sent home with a round of antibiotics. Needless to say, that didn’t clear up my symptoms. I went back to see the doctor and was prescribed a different antibiotic. Still, my symptoms lingered. By this point, however, I was hardly eating and I spent most of my days laying on the couch. I remember thinking, “it’s a good thing I’m not in the Army anymore and I’m working from home,” because there would have been no way on earth I could have gone in to work during those past three months. Finally, the ER doctors put in a consult for me to see a gastroenterologist. But it would be another two months before that appointment came around. Looking back, I remember that even during that time, the foods that didn’t cause me pain were steak, eggs, and canned tuna…even back then I recognized that my system preferred meat to vegetables.

In February 2007, I had my first colonoscopy. The results: there was just enough ulceration and evidence left that the gastroenterologist suspected Crohn’s Disease. It had been four months since my initial attack and so my intestines had already healed quite a bit on their own…mostly from not eating.

I don’t remember the exact course of medications I took in those early days, but one of the first things my GI doctor had me try was a medicated enema (ROWASA) and Asacol (both forms of mesalamine). Those didn’t work, so I was put on a regimen of Asacol and Imuran, an immune-system suppressing drug.

It was a rocky couple of years, but in August of 2009, I went in for what was my third colonoscopy and my doctor confirmed Crohn’s. Shortly after, I went on Humira–a biologic Immunosuppressive drug that requires self injections every other week. I stayed that course for the next five years. While the Humira helped, I quickly learned that I still had to watch what I ate. I was also starting to recognize when certain foods (mostly hard-to-digest vegetables and nuts and junk food (especially chocolate)) made my symptoms flare up or caused me pain. Since Humira didn’t help 100%, I constantly sought out additional supplements and treatments that I could use to compliment my prescription drugs in hopes of finding complete relief.

Since then, I’ve now tried a number of different approaches for managing my disease–from medications and nutrition to aromatherapy and supplements. Some things helped, others just lightened my wallet. While I recognize (and am grateful) that I am on the more mild end of the spectrum of Crohn’s Disease (since I have not been hospitalized, had any major complications, nor had any surgeries), I’ve still had six colonoscopies to date, swallowed a digital pill camera to take pictures of my entire digestive system (that’s the picture of me at the top of this post, circa 2007 or 2008), had a vagus nerve spasm (which made me drop to my knees in pain and I can only describe as feeling like my intestine had ruptured), used more enemas than I can count, done multiple stool collections, submitted a 24-hour urine collection to check on my kidneys, and even split my head open one afternoon after having a large blood draw done in a fasted state and then attempting to wait in line to fill my prescription where I blacked out, seized, and fell to the ground.

I’ve tried the Low FODMAP Diet, Low-Residue Diet, The Maker’s Diet, the Atkins’ Vita-Nutrient Solution, the Specific Carbohydrate Diet, the Bulletproof Diet, low-carb, keto, fermented foods, raw milk, homemade elemental shakes, and now a carnivore meat-only diet. With each of these experiments, I’ve tried to take what works and throw out what doesn’t…always adding to my personal Crohn’s toolkit. I continue to learn and remind myself to stay strong and keep trying, even during the times when it seems like no matter what I do makes a difference. Even though some days feel like I’ve taken one step forward and two steps back, when I pause to look at the bigger picture, I think that some of my crazy and wild experiments must surely be playing a role in keeping me strong and mostly in remission. I’ve fought this disease for 12 years now. While it’s gotten a few good punches in, I’m still coming out on top. At the very least, trying different things makes me feel like I have some control over what my body is trying to do to itself.

As far as supplements go, I’ve tried everything from turmeric, glutamine, lysine, beef liver and marrow, bone broth, oil of oregano, vitamin D, and now I’m venturing into the world of CBD oils. With each day that passes and the more I look back and reflect how my disease and lifestyle have evolved, I realize that there’s no one right way or one magic supplement that will help. But, I think there are lifestyle and environmental factors that we can take control of to improve where we’re at in any particular moment–whether we’re fighting a disease or not.

So, after 12 years of quietly managing my Crohn’s and reading/relying upon the countless stories of other IBD Warriors before me, I decided it was time to share my story and start recounting the journey that brought me to where I’m at right now…sitting here and writing this blog. My sincere hope is that other IBD Warriors out there who come across my blog will find the same hope and inspiration I found from reading the stories of those before me.

12 Replies to “My Crohn’s Story”

  1. Thank you so much for sharing your incredible journey in such an open manner. Our best friend suffers from Crohn’s and has already had one surgery to remove the inflamed part of his bowels, so I’m somewhat familiar with it. He’s on a cortisol treatment, among other things, and seems to have reached a balanced stage of Crohn’s where it’s not a problem more often than it is. A balanced diet seems to have been crucial to this–and by balanced I mean that, much like you, he has identified what triggers it for him and avoids it.

    I’m convinced it has a strong genetic component, as his brother also suffers from Crohn’s, so I’m curious to hear if other family members might have it. My wife has suffered from IBS in the past. Surprisingly enough, it only went away when she started eating one yogurt a day. I guess that offers her gut the microbiome it lacks naturally.

    Every day I come across another article about the importance our gut microbiome plays in our health and posts like yours seem to prove that.

    Like

    1. Thank you for sharing, Nicholas! It’s comments like yours that really encourage me to keep writing and sharing. I am glad to hear your friend has been successful in identifying his triggers…it can be a tricky process. It truly amazes me how unique we all are and how we can all respond so differently to so many things/foods; and also glad to hear he has more good days than bad.

      While I am the only person in my family (including cousins, aunts, uncles, etc) to have Crohn’s, other autoimmune diseases are certainly seen in my family. My grandpa had lupus, my dad has rheumatoid arthritis, and I believe there are a few other autoimmune conditions in my extended family. For me, my autoimmune disease manifested as Crohn’s.

      I am very much looking forward to the next 20 years in research for the gut microbiome. It certainly plays a major role in our health, so it will be fascinating to watch what we learn from and understand about it in the future.

      –Stephanie

      Liked by 1 person

      1. Thanks! You’re right; auto-immune diseases are all interlinked, aren’t they? My wife also has Hashimoto, for example, and is worried she might develop other ones as she grows older. (Un)surprisingly enough, something as simple as developing a more positive, less stressful frame of mind has had a major impact on her Hashimoto, which makes me think of the psychological aspect of it, too.

        Liked by 1 person

      2. I definitely fall into the camp that believe all autoimmune diseases are linked by having the same underlying principles of inflammation and a faulty immune system…our bodies just respond in different ways, attacking different organs when the immune system trips up.

        It’s interesting about the comment you made about a more positive attitude, there is definitely more we don’t quite understand about how emotions and stress also play into disease. You might enjoy reading the book “The Gratitude Diaries” by Janice Kaplan. She has a whole chapter in her book about stress/emotions and how gratitude affects our physiological responses. In the book, she comments on how the immune system may respond to emotions because worry, anger and fear cause a spike in white blood cells and leave a trail of dangerous inflammation in their wake because they don’t have anything specific (like an infection) to attack. Feeling gratitude could counter that effect and keep the immune system from spiraling out of control. It’s actually one of the reasons I’ve decided to jump on the bandwagon of keeping a daily gratitude journal 🙂

        Liked by 1 person

  2. Powerful life story Stephanie! Thank you for sharing your healing and health journey. I am presenting at a May Crohn’s symposium in May 2019 on the optimism mindset and health anxiety. Your blog will help me prepare!
    Warm Wishes, Dr. Andrea ☀️

    Like

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