“Are we allowed to use the ‘R-word’? Are you saying I’m in remission?”
“Yes. You can say that you’re in remission! Be proud of our hard work.” <- my doc.
After nearly five years since my diagnosis with Inflammatory Bowel Disease, my medical chart has added a new word to its history: REMISSION
A brief recap:
–Late September 2012: began noticing symptoms (x rated version: bloody stools 30x daily and through the night, fatigue, sudden weight loss, nausea)
–October 2012: Diagnosis “Moderate to Severe Ulcerative Colitis”; began Remicade IV treatments immediately
–April 2013: hospitalization (“holistic approach” without meds didn’t work- oops)
–May 2014: Mega-flare
–June 2014: diagnosis changed to “Crohn’s disease” after 2nd colonoscopy
–July 2015: Ran first half-marathon while fundraising for cures to Crohn’s and ulcerative colitis with the Crohn’s and Colitis Foundation of America; still not in remission
–August 2016: Concerns that Remicade infusions are losing efficacy; increase frequency of infusions
–December 2016: New medical center, new doctor, new state, new meds
–February 2017: Diagnosis is confirmed to original dx after 3rd (or 4th?) colonoscopy and biopsies, “Moderate to Severe Ulcerative Colitis”
–May 2017: Reached clinical REMISSION
…what does that mean?
My labs are normal, showing no signs of active disease, meaning that my inflammatory markers are all within normal range. Also my micronutrients are all within normal ranges. I have zero symptoms in a day. ZERO. And then I wake up the next day after sleeping completely through, and I have zero symptoms again, and it keeps happening.
There’s no guarantee how long remission will last, since there’s no medical cure for Crohn’s disease or ulcerative colitis. My doctor is enthusiastic to work with me though, and he thinks there’s hope in the future for me to eventually live life without my IV infusion with a 50% chance of relapse. I actually like those odds, and I’ve NEVER heard a doctor reference my life without infusions, so this made me cry happy tears…and I’m not a happy tears kinda girl. However, weaning my body off of the infusion will take months, potentially even years because it’s a slow balancing act: increase the time between infusions, check blood, remain on oral medications, check symptoms, lower dosage of oral meds, check blood, etc.
The goal now is to stay in remission and eventually get into “deep remission”. To me it sounds like I’m currently in remission with training wheels, but I gotta ride like a pro before I can be set free. More patience and hard work, and I am completely up for it!
In order to appreciate a milestone of this magnitude, I’m gonna be nostalgic for a hot second. Lessons I’ve learned from Crohn’s/ulcerative colitis/whatever the heck my diagnosis was when I learned these lessons:
1. Vulnerability is your friend. Vulnerability leads to empathy. Be vulnerable, because it creates a genuine connection with people that you can learn from, be encouraged by, or befriend. You can still keep your dignity and humility AND manage to be vulnerable too- don’t worry :).
I can connect with people on really weird, strange, close levels now because of my new-found empathy powers…and sometimes that freaks me out. But it’s cool, too.
2. Disease is a lens to view the world. NO WAY could I see the world in the way that I am able to see it now had I never been diagnosed. I’m able to feel the importance of time. Time is vital. Time is not on our side, but we can make the most of it…because it’s a gift. Truly. Sound cliche? I don’t care.
3. Humor is your greatest weapon. Whether I’m shitting my pants in traffic, dealing with a bad report, debilitated by fatigue, or having the greatest day of my life…humor. Always, always a good reason to laugh, usually at my own expense, and that makes my day. It’ll make yours too, if you let it.
4. Strength isn’t something that comes by osmosis. Life is tough- no, really. Life. Is. Tough. But one day you’ll look back thinking, “How did I survive that? How did I make it through?” You got stronger. While you were driving that struggle bus, you were gaining character, muscles, emotional fortitude, and badassery. You couldn’t feel it, but you were resilient. And now your resilience has made you strong. Way to take those trials like a champ! Find joy in trials, because you’re gonna find strength.
5. Kindness. Be slower to judge. You don’t know what people are enduring. We’ve all been through some small version of hell at some point, and some people handle that with more grace than others. Be kind to yourself, also. Rest, breathe, relax, sleep in if you need to, but don’t beat yourself up. You’re a work in progress, and you deserve a little kindness; we all do.
Oh- and celebrate every little accomplishment along your way. The best is yet to come!
^ How I celebrate/deal/rationalize/breathe
Thank you all for celebrating this milestone with me!!!
The question I get asked most often by friends and strangers alike is, “How did you know something was wrong?”
Please don’t use my experience in lieu of a doctor’s professional opinion. If you think something is wrong…go get checked out!
Okay. Here’s my story:
Once upon a time in early Fall at a coffee shop on campus at The University of Texas at Austin in 2012, I began having excruciating stomach cramps. When I say the word excruciating, I mean excruciating. Unbearable. The BEST way I can describe the pain for the sake of being relatable…have you ever had a violent stomach virus? Multiply the frequency of your symptoms to several times a day and night, for weeks. Then you get me.
I excused myself a couple times over the duration of my brief meet-up with a friend at the coffee shop. “Guess I should switch the chai lattes to soy,” I thought to myself.
But the pain and the symptoms weren’t alleviated by omitting dairy. Within weeks even ice chips resulted in pain, followed by 10-15 wind sprints to the bathroom.
X rated version: I knew something was wrong when I noticed that my stools consisted almost entirely of blood, and nothing seemed to offer even a hint of relief (not even drinking imodium from a straw…not recommended, by the way).
About a week and a half later, I made an appointment with University Health Services; they accommodated me quickly when I described my symptoms. They prescribed me high-powered antibiotics, which didn’t phase my symptoms. “Come back in 8 days for a follow-up.” I noticed that I had already lost twelve pounds when I weighed in with the nurse before my appointment.
I found a local gastroenterologist, without a referral from a professional. Something had to be resolved fast.
At the time I would wake up two hours before class began (after a night of restlessness because of constant stomach cramps and running to the bathroom), to ensure that I would arrive to class in time, allotting plenty of time for bathroom stops in the buildings on my way to class until I was finally able to make it to my class. I received permission from my professors to record their lectures during this time, because I would have to sneak out of class three or four times to be sick. This went on for a few weeks.
During my first appointment with the gastroenterologist, he scheduled a colonoscopy for the next day, and so began my life of poking, prodding, stool samples, blood samples, and biopsies. The prep juice wasn’t bad because I was pretty clear from shitting thirty times a day…still not entirely sure what the big fuss over colonoscopies is all about.
After my colonoscopy the doctor read my diagnosis, “You have moderate to severe ulcerative colitis. There’s no cure, but there are treatment options. You’ll be monitoring this diseasefor the rest of your life.”
Honestly, I was pretty certain that I was dying of cancer. When I was diagnosed, almost three weeks beyond my very first noticeable symptom at the coffee shop, I had lost twenty-five pounds. I looked like a bag of bones. I was weirdly relieved to have “ulcerative colitis” as a diagnosis. Having answers makes all the difference.
(During this time I got recruited by Abercrombie model scouts on campus for a live audition. They were quickly educated…thanks to the prednisone and my lack of sleep.)
All that I had heard about “ulcerative colitis” was a brief overview in a pharmacology course, and I knew that Crohn’s was its cousin, both under the umbrella of Inflammatory Bowel Diseases (IBD)…not exactly enough for me to understand what the heck the doc was talking about. He explained that my immune system was hyperactive, recognizing even food as a foreign substance that needed to be expelled immediately. Not cool, immune system. Not cool.
My body was rebelling against my colon. Why? Could be genetics, or the environment (e.g. toxins, antibiotics altering gut bacteria), or an interaction between the two.
“What can I eat?”
“Eat whatever you want. Since you’re a bit underweight, drink as much dark beer as you want. Eat burgers.”
^ Never made sense to me. UC is an autoimmune digestive disease in my gut, where most of the immune system is located, and I’m being told to eat whatever I want? Too good to be true. I knew immediately that dairy and beef physically hurt to eat, so I eliminated those. Next to go was processed meats and fast food, because no way are those beneficial. To my surprise there were still plenty of good options to eat, despite being in college and on a budget. Good food didn’t have to be expensive. I began researching which foods to eat to help with inflammation, since UC is an inflammatory disease, and I tried to eat more of those helpful foods: leafy greens, grilled fish, lean meats, and blueberries became my go-tos. And so began my interest in nutrition. I watched it help me, change me, and I dreamed of how it could help the people I love. Present day Stacey is in school again pursuing a dietetics degree.
After my scope, the doc handed me a paper folder full of info pamphlets and immediately prescribed me an IV biologic & immunosuppressant: Remicade. MANY people ask, “Why did you decide to be on such a high octane medication?” At the time I didn’t feel a like I had much of a choice. Looking back, I still would’ve agreed to such aggressive treatment, because I felt (and looked) like I was actually dying. It’s different for everyone, but for me it was serious at the time. I mean. I LOST OVER 25 POUNDS IN THREE WEEKS, PEOPLE.
I remember my first infusion, walking into a dimly lit infusion suite with recliners bordering the walls, each with a patient hooked up to an IV pole. Some were asleep, others read books, flipped through their phones, and a few watched HGTV buzzing in the background on the televisions. Not all the patients had Crohn’s or ulcerative colitis, some had rheumatoid arthritis, MS, and a host of other autoimmune conditions. This was the first time I realized that my life would not be the normal I remembered. I needed medication from an IV so I could live life like I remembered living. Weird.
Overnight, I felt like I had gone from being a normal, healthy, social college student to a smaller, weaker shell of myself: spending more time alienated by my symptoms; a more vulnerable person, more medicated, with less autonomy over my own health. I bought a pill pack from the pharmacy store that looked like the one my grandmother carried in her oversized old-lady purse, so I could keep up with my new lifestyle.
In addition, I was prescribed pain and sleeping aids (which I never took), along with a hefty dose of Prednisone, a corticosteroid. Jesus and steroids saved my life, and I honestly believe that. Prednisone was the only oral medication that seemed to ever work.
But I hated it.
Steroids were great in college, because I felt very energetic (almost jittery) while taking Prednisone, so even on little sleep I was able to get a lot accomplished. However, the mood swings made me feel like a crazy pants to say the very least, so I avoid Prednisone at all costs today. I also like to sleep…and I have the hardest time sleeping when I’m on the ‘roids (disclaimer: not the same anabolic steroids that give you muscles…womp womp)
LIFE AFTER DIAGNOSIS
Slowly but surely, my energy levels began to creep back up to normal. I got my life back. Sure, I had to make some adjustments here and there (still learning), but heyyy I’m alive!
I graduated with a pretty decent GPA, even with a hospital stay, despite my family’s pleading for me to take a medical leave of absence from college. I never asked for a project deadline extension. I honestly look back on this time in life and think, “How?” But I was in survivor mode. Don’t say “I could never.” You could. And you would.
I got into the working world, took some time to get a Crohn’s diagnosis, had a doc switch diagnosis back to “ulcerative colitis”, changed shifts, changed jobs, conquered anxiety, and got to know myself really well. Wasn’t glamorous, and wasn’t what I anticipated, but it’s okay! I’m okay.
LEARNING TO COPE 1. Haters Gonna Hate
People will criticize you whether or not it’s warranted. I have been criticized for being a “pill popper”; for “taking the easy way out” with the infusion (that one is beyond me); for being “too stressed”; for not taking a medical leave of absence from college; for drinking beer; for the way I eat. People don’t mean to be as nasty as they can be sometimes; they simply don’t know your situation. I control as much as I can with diet, but I’m also human and sometimes I slip up or make conscious decisions to indulge. The meds help where nutrition cannot for me. My dream is to be 100% in remission with diet, but I’m not there yet. I can’t advise YOU if you were recently diagnosed on which course of action you should take. This disease is different for everyone. What works for one person may NOT work for another. It’s all about figuring out what works for YOU until there’s a cure. But shake off the negativity. You’re living with this- YOU are the badass.
2. Keep your people close
There will be people in your life who are with you during your diagnosis, and I don’t just mean the people who happen to be around. Who is WITH you? Who is there keeping you strong? These are the people you want around forever. For me that’s my sister, my college roommates, and my Zack. Story time 2.0:
One night in my apartment that I shared with friends, I was THE most physically ill I had been in my life, sick from both ends for hours and hours (pretty, huh?). I called Zack and begged him to come over. He spent the entire night on the phone with pharmacists, arguing with my doctor about medications, all while I slept on the bathroom floor in between being sick. Finally, around 4am, after much harassing Zack managed to get me some anti-nausea meds. My gawsh, the guy is a saint.
He fought with me. He went to bat for me. He never judged. He didn’t do good things for reward. He was just there, beside me, gutting it out with me. And so were my roommates. The BEST people I know.
I promised myself that if I ever had the energy again to move, then I would. Sounds overly emo, I know. But y’all. I really struggled with weakness for so long. So my roommate and I did this thing ^. Not pictured: Roommate Becca, still one of my greatest friends, probably drinking a mimosa at the finish while snapping this photo.
KEEP YA PEOPLE CLOSE.
3.It gets better
There will be times when you think, “TF HAPPENED? I was doing so good! Where’d these symptoms come from?” This will pass. It will get better. You will prevail. You’ll come out stronger with every flare. You’ll live to tell about it, and you’ll develop a pretty damn good sense of humor from it, too.
4. Find your silver lining
There may be days when you shit yourself in your car while in traffic. It’s okay to cry about it, but then try to find some humor in that. When you’re in a flare and EVERYTHING makes you sick, think about all the amazing Netflix you’ll be able to watch. “I won’t be able to do this when I’m better.” Think about all the food you CAN eat. If none of those options work, recognize how this has changed your life. I wasn’t interested at all in nutrition before this disease, and now it is my life. I sho wasn’t going to run before UC, and now it’s my hobby.
5. You’re still you
You’re still you, but you’re more relatable. You’ve seen struggling, and SO.MANY.PEOPLE. are struggling. You’ve seen sickness, and SO.MANY.PEOPLE. are sick. You’ve seen recovery, and people NEED to find their strength to recover. Help them find it. See this as a weird superpower. This disease doesn’t define you, but if you let it, it will make you a better, bigger, badder, stronger, gassier(?) version of you. You’re still you, only better.
Please let me know how any unexpected life situations have changed YOUR life! I’m with you. Solidarity!
Keep moving forward 🙂
OH! And have a great Monday! There is such a thing, I promise.
For those of you who don’t know, I was diagnosed with moderate to severe ulcerative colitis in 2012, the year before my college graduation. I had never heard of ulcerative colitis until my diagnosis. I remember thinking, “Thank God- it’s not cancer.” Because after two-three hellacious weeks of losing over 25 pounds and not recognizing what the heck was happening to my body, I was sure that it was something drastic.
I ignored people, even some who I loved, pleading with me to take a medical leave of absence; my GPA even increased during this time, probably because: 1. I was quarantined to my house with no social life since I was shitting 30 times a day, and 2. I was determined to prove that my limitations weren’t limiting me.
I remember the doctor explaining “there’s no cure, but it is treatable,” and thinking “Well, why bother telling me there’s not a cure if it’s treatable?” But I know now that what he meant was, “We’re going to try a lot of different medications, and see how you respond. Over time, they may lose efficacy, and you’re going to have to try new meds. Some of these medications may require lifestyle adjustments, like having to go to the hospital every few weeks for an infusion for the rest of your life. You’ll try dietary adjustments. You may feel anxious and face sleepless nights; you may become a person you don’t recognize; you’ll lose your hair and have weight fluctuations, but you’ll gain the best kind of people for friends. You’ll have a struggling social life, but you’ll adjust. Each and every time, you’ll overcome, and you’ll be stronger for it.”
^That’s what he implied. Honestly, it’s taken me years to figure out that this is a lifelong thing. Sometimes I still don’t get it.
That year of college was memorable. I recall not knowing if I’d have the energy to make it up the stairs to class. I promised myself that if I had the ability to move again, then I would.
That following May in 2013, my roommate and I completed a sprint triathlon.
Then I graduated, moved out into the real world, found a job, and got angry.
I started researching. I realized that I wasn’t alone in this unglamorous, poop struggle, and not many people talk about it (not victim-blaming. It’s not a sexy disease).There’s over a million people in America alone with this disease…but there’s no cure. Absurd. I was angry that there weren’t cures. I was angry that I was going to have to deal with rollercoaster flares. I was just…angry.
So I thought, “I think I’ll go for a run.” Because honestly, I’m rarely angry. I remember being angry and upset only a handful times growing up, and I went running, huffing and puffing my way around the neighborhood each time.
But this time was different. I wanted to prove to myself that I was tough, despite my weakness. I wanted to push against my limitations, and I wanted to feel strong. I needed to know that I was not damaged goods, and I wasn’t the diagnosis code on a medical chart, but that I was even more capable than ever before in my life.
My way of dealing was running.
Around my angry/I want to feel better and make some trouble on behalf of others/time of chronic badassery, I found Team Challenge and trained for a half-marathon while fundraising for cures to ulcerative colitis and Crohn’s disease- and I channeled my anger into some productivity.
And today I keep running.
If you want me to be real with you, I took a break from October until this month…zero runs, because I physically and mentally couldn’t, because of a nasty flare that has required time, energy, and commitment to dietary adjustments and more meds to shake me outta my funk. I haven’t felt like me…
I’ve spent days in bed until nearly afternoon. I’ll drop Zack off at work, go to bed, and then pick him up after a day asleep, only to go back to sleep. He has been the real slim shady through all of this.
And it’s okay. Struggles are temporary.
Finally, my meds have started working, my dietary adjustments began healing my gut, things started clicking, and the wheels started turning.
Tonight I ran two miles without stopping. Two miles of up and over hills, around neighborhood corners, and hopping over sidewalk cracks, and I feel alive. I can feel my lungs struggling to get their rhythm, and I can feel my legs swinging happily beneath me while my feet pound the pavement, and I’m thankful for my 90’s playlist in my ears and the wind through my hair.
(Shoutout to Mother Nature for allowing me to run with my hair DOWN today- freedom!)
In short, I run because I can and for me, that is the greatest reason of all. I don’t think about ulcerative colitis. All I think about is making it to the next light pole, around the bend. And suddenly I’m there, and I keep going. I run because I get to keep going, past my limitations and beyond sickness.
Because I can :).
Why do you run?
P.S. When I can get a bit more organized, I’m thinking of making a couch to half-marathon training list with the help of one of my running coach friends.
A UC patient from the couch to a half-marathon…or two or three
Soon after I finished my nutrition exam on Friday, Zack came in from work. “Grab the dog, and let’s go hiking! I bought beer.” <- The way to my heart.
I grabbed the dog, some EPIC brand snacks with some smart pop and an RX Bar, and off we went!
We had to walk quickly because we were chasing the last bit of the sun that remained, but we loved the trails out at Lake Thunderbird! We were the only three out and about, and it was completely serene. We saw a ton of beautiful deer! Jaxon was thrilled to be exploring initially, but on the way back he planted his feet into the ground (how he says “I am so done”), so I picked him up to walk back to the truck. When we got home, we facetimed our longtime friend Pratik who is far away at med school. A perfect Friday, indeed.
Saturday was a lazy movie day with a side of Hello Fresh. The weather here was meh, so we lounged. It was wonderful.
I made my meatloaf low FODMAP compliant by omitting the onion and gahhlic. Instead, I used some gluten free panko that I had on hand, plus the rest of the ingredients in the box that were low FODMAP. Zack’s meatloaf patty was made as directed, and he loved it!
Normally, I hate meatloaf. Just ugh. It’s like fancy feast for humans, and I don’t like it. Needless to say, I wasn’t thrilled about making this meal, but surprisingly it was delicious! Not your momma’s meatloaf- way, way better. I really enjoy sweet potatoes, so those were a hit.
Sunday’s excitement was taking Jax to the park. He LOVED the walk there, but once we arrived he wasn’t sure what to do with himself and just looked extremely anxious. He’s such a little mess. Zack and I tried to swing, you know, like adults. Confession: the last time I was swinging in a park was on Christmas day. I tried to jump out of the swing and onto the ground, you know, like we all did as kids on the play ground. Only this time I had more weight and more momentum when I hit the Earth, and I face planted hard.
So. I didn’t swing much
Last night we had a hellacious thunder storm. I see you, Oklahoma. Hopefully tornado season will come and go quickly for this poor Texan soul…
Today I went to the doctor for a follow-up from my scope.
My conversation with my doc was completely unproductive.
“When was your last scope?”
Um- three weeks ago…you performed it.
“Yes, right. What did we decide your diagnosis was?”
seriously, doc? …ulcerative colitis…also…my infusion isn’t working well.
“Yes, okay. We will check on that in three months.”
But it isn’t working…today.
“Right, but I want to see how you fare with the new oral medications, so we will check back in three months. Any questions? See you in three months.”
So here’s to fighting hard to be my own health advocate (it never ends, and no one can advocate for my health better than myself), and here’s to fighting even harder to move and run and get stronger. This disease can put a damper on life mentally and physically, but each time I push back against those limitations, I come out stronger. I win, every.single.time. This time is no different. I just have to keep fighting, and keep being brave.
I hope you can muster the strength to fight back and be brave against your own circumstances, too! You are bigger than your giant.
It’s been a minute. Last week was spent juggling phone calls with insurance companies and doctors in between naps. I’ve been flaring hard, running to the bathroom 16 times a day or so and fighting to stay hydrated, so I was begging for the insurance companies to comply and get me infused. One phone call, the representative asked if I had tried a “generic” brand of medication, one that was “less expensive and less of a hassle than an infusion.” I’m not sure who gave insurance company reps a license to practice medicine, but GAH THEY SUCK. Rant over.
Finally, on Friday.
Four years on this medication, and it’s losing its efficacy, but I’ll go for an appointment next week to brainstorm more solutions. But I am still SO thankful that symptoms have slowed down a bit since. PRAISE!
My parents came for the day on Saturday, and we took them to Torchy’s Tacos. If you live in Texas, Colorado, or Oklahoma and you’ve never been to Torchy’s, you should re-prioritize your life to include Torchy’s. My dad was pretty stoked about it. Then, they kindly took a “family photo” of us with our little house before they left.
After my parents left, we drove to the lake and watched the sun set. Perfect ending to a day.
Jaxon was thrilled to do some exploring. The little deaf dog is doing better at obeying sign language.
On Sunday, I made homemade granola while we watched a healthy dose of Netflix.
The very best part about this recipe is that it’s Low FODMAP AND gluten free (AND delicious). Recipe at the end of this post :).
Sunday was capped off with a four mile walk/run. Isn’t campus beautiful? I went to UT Austin, so this is a very genuine compliment coming from a rival school, where football is blood and life (even though we have been strugglin’). Really though. Such a pretty place for a run.
The first two miles were rough. Getting back into it felt like my lungs forgot how to give me enough oxygenated blood, and I literally saw stars from being dizzy once I made it to the top of some hills. I fully believe that the first couple miles are the worst part of running. I decided to walk/jog the two miles home. My body is still working to heal from this flare. It felt so good to be out on the pavement again, though. My happy place.
PB granola recipe:
If eaten in a quantity equal to or less than 1/4 C, it’s low FODMAP.
-2 tbsp coconut
-2 C gluten free old fashioned oats
-2 tbsp pumpkin seeds
-1 tbsp chia seeds
-1 tbsp pure maple syrup
-2 tbsp melted coconut oil
-1/2 C softened PB
mix dry ingredients and wet ingredients separately, then mix them together. Put them in the oven on aluminum foil for 30 minutes on 350, tossing occasionally. Ta-dahh! Granola. My personal favorite way of getting carbs in the early morning
Hope you are having a great Monday, or at least find comfort in the thought of tomorrow being Tuesday 🙂