: Starting November 2014 :
For six weeks after my colonoscopy and MRE, my unknown path of waiting for a diagnosis felt like a bridge: narrow, gridlocked, lonely.
Forty-odd days of waiting.
A month and half of worrying and hoping and worrying some more.
I occupied myself by focusing on studying. I decided to fully engage my thoughts in schoolwork so my mind wouldn’t wander back into the fear. I tried, but those six weeks still felt like forever.
And finally, those six weeks came and went. I still remember the shift in my world as my gastroenterologist told me the news: ulcerative colitis. My tongue wrestled over the words as if I were speaking with pebbles in my mouth.
Soon enough, the name was easy for me to pronounce; accepting it as a part of my life would take a bit longer.
During that silent car ride home after getting word from my doctor, I remember mulling over the word “chronic” in my head, like an editor examining a story for plot holes where there are none.
Also, I was thinking about cheese. My unbreakable love for nachos, ridiculously cheesy lasagna, The Spaghetti Factory’s three-cheese pasta blend…
Let me explain why.
I was absorbed in these thoughts of cheese because minutes ago at the doctor’s office, my gastroenterologist took cheese of my menu indefinitely. Not just cheese, but all dairy as well! Lactose can cause inflammation, which was undoubtedly the last thing that my colon needed. I won’t use the words devastated or distraught because that’s simply an over-exaggeration even for me, but I was definitely saddened.
Cut out milk? No problem, I don’t like it anyways.
Stop eating ice cream? Fine by me, they have some delicious flavors made from non-dairy almond milk.
No more cheese!? Hmm. Okay that’s gonna take some time to process. And my taste buds were already cursing at me.
So, I pondered all this while driving back to the Jessup campus—finally receiving my diagnosis and the unwelcome news that came with it. I also stopped at the pharmacy to pick up more medications that my doctor prescribed me in addition to the Prednisone I was already on. I stood there at the pharmacy counter, eyes wide, collecting my list of drugs—one, two, three, four, five, six…
Medications are typically the first line of defense for the newly diagnosed, so if any of you reading this are experiencing this or know someone going though this, you might be familiar with these medications I was placed on:
Check out this infographic to learn about the medications, or click the links above to go into full detail!
Being on all seven of these medications at once was tough. That’s because some had to be taken on an empty stomach, some had to be taken with food, and some had to have a certain amount of hours in-between one another so they were fully effective. The structured and organizational side of my brain celebrated, and I crafted myself a chart with the time each day I’d take each pill. This was my daily itinerary:
But guess what! The itinerary was successful! I rarely missed a missed a dose because I stuck a copy of it in the plastic slip of my school binder that I carried with me every day—not the cutest binder cover, but very practical. And if I did miss a dose, it wasn’t the schedule’s fault. It was user error.
And though this schedule helped me stay organized in the midst of it all, it was definitely a challenge to alter my eating schedule to fit around this new eating schedule (after all, isn’t part of college about eating whatever you want at the oddest of hours?).
I mean, I’d go as far to say that it altered my sleep schedule! For example, since Clarithromycin, Amoxicillin, and HealthyTrac had to be eaten with food, it ensured that I woke up early enough to take Nexium before those breakfast medications!
And since Sucralfate had to be taken on an empty stomach, I had to stay up late enough to take it after dinner and before bedtime!
Phew! That’s a lot on top of being a full-time college student!
So in addition to struggling to keep up with my classes, trying to connect with my roommates, working part-time, volunteering at a local coffee shop once a week, and still adjusting to my new home on campus, this vital eating agenda added one more thing to my daily life.
But, hey, if this crazy schedule keeps me away from the toilet bowl-and-chain, I’m all for it.
I’ve crafted this infographic for those of you dealing with a hectic medication schedule. Check out these ways I learned how to keep track of all the meds.
If you give any of these techniques a shot, let me know how they worked for you! And if you have any others, please leave a comment or share on the Facebook group!
So. Fellow ulcerative colitis and Crohn’s Disease fighters, I know that the transition from waiting for a diagnosis to being told you have a chronic disease can feel like walking across a narrow and lonely bridge. The water is cold, and the bitter wind that drags across your skin is frightening.
But let me tell you that you are not alone. Others are crossing that same bridge as we speak.
I’ve crossed it, and so can you.
Even if your eyes aren’t focused on the green on the other side, keep walking boldly forward.
Find a support group.
Be open to yourself and others about what you’re going through.
Let’s bridge the gap of isolation that IBD can bring.
Let’s cross this bridge—together.
In The Comical Colon’s Facebook group, let’s start a conversation:
I’d love to hear about the bridge you are crossing. What’s causing you to look down at the dark waters instead of the light at the other side? Maybe you’ve been placed on a lengthy list of medications too—what techniques can you employ to help keep a consistent schedule? Perhaps you’re feeling overwhelmed as you are learning of your diagnosis and managing your symptoms—what ways can you connect with others and with yourself to strengthen your support group and practice self-care? What is your personal bridge, and what is your plan of action to walk boldly forward?
I wholeheartedly believe way to bridge this disease type’s chasm of alienation, fear, being misunderstood, etc is to connect and talk about it; so let’s discuss our fears, our trials, our triumphs, and find the comical in the deepest, darkest crevices of our guts.