Honesty Hour - My Experience With Ulcerative Colitis
As I lay here (moderately propped up by pillows) in this hospital bed inhabiting the cozy room 7 at the Lahey Hospital, my late night thoughts rapidly began to take me down a familiar path of just why I was admitted here today. Habitually, I’ve kept a lot to myself health-wise with the exception of close friends and family when it comes to what’s really going on with me. During most points of my life, I was naive to adopt the mindset that “it’ll never happen to me” when it came to illness. Lo and behold, during the first week of my junior year of college, I became a statistic and joined the 1.6 million other Americans the day my gastroenterologist diagnosed me with ulcerative colitis. UC is an autoimmune, chronic, inflammatory condition that attacks the colon and causes inflammation in the lining. UC is very similar to Crohn’s disease and together they make up the two main classes of Inflammatory Bowel Disease. With proper medication, some dietary modifications, and a healthy stress-free lifestyle, it’s fairly easy to maintain remission and feel little to no symptoms. However, with added stress, an infection, or the inability to find the right types of medication combinations, the disease causes a downward spiral and a dreaded “flare-up” that can take months at a time to correct. Although it’s always nice to hear “maybe you’ll be feeling better tomorrow,” from encouraging friends, no one has ever really known that it usually takes weeks of “tomorrows” for me to see a significant improvement. Subsequently, the constant blood loss and lack of appetite can cause further damage including anemia, low potassium levels, and poor nutrition. Unfortunately, this categorized my latest flare-up and has now led me right into this hospital bed hooked up to a creepy IV, eating pudding, and trying to figure out how to work this prehistoric hospital TV.
I’ve never felt comfortable enough to be honest about my struggle with UC because of my fear of judgment and being misunderstood. It’s definitely hard to maintain relationships and remain positive when being sick for weeks at a time; and my struggles were never anything I’d wanted to burden anyone else with. I’m not writing this post for sympathy or pity – but simply to raise awareness about IBD and to share my story in hopes that someone out there going through a similar struggle can relate. No one starting their second half of college wants to be told that anything is wrong with them. Additionally, no one wants to spend the entire week before graduation burdened with stomach pains during a time that should’ve been fully dedicated to non-stop celebration (and vodka crans).
Living with UC in college definitely had its obstacles to say the least. When sick, alcohol and inflammation were not two variables I was jumping up and down to mix together, which made living in an environment surrounded by a strong drinking culture (go Wildcats) a challenge sometimes. In my mind, going out without drinking when I had flare-ups was perfectly doable because I wanted to spend what’s known as “the greatest 4 years of my life” socializing with my friends no matter what. Unfortunately at times, it was hard for others to see it that way. You’d assume people would focus on how drunk they were getting on their own instead of scoping me out in the corner holding a Sprite and calling me out for it. Although I’ve been repeatedly asked to this day- “why aren’t you drinking?” or “why even come to the bar if you aren’t going to drink,” it was much easier to pretend I had an exam the next morning, fake a hangover, or claim to be taking antibiotics then to try yelling over the speakers blasting “Down in the DM” in the middle of the bar that I have this disease. However, when post-grad life came around (kudos to my fellow recent grads trying to avoid being washed up), I came to realize that in telling those white lies all the time, I wasn’t being honest with myself, others, or being true to the person I am.
This disease is an enormous part of what makes me “me” that I physically can’t hide anymore because there is no excuse I can piece together to explain why I’ve been this sick so consistently for the past month. The extreme lows that UC has caused me recently resemble such deep troughs that, at times, I’d never thought I’d be able to climb out of (literally, my arms are currently the size of tree branches.) The constant reintroduction of dangerous steroids between flare-ups that have caused anxiety, irritability (if I’ve lashed out at you at any point ever, I apologize, and now you know why), and potential long-term complications were not fun to experience. It’s strange going from craving a bacon cheeseburger 24/7 to finding myself overjoyed at the fact that I have a big enough appetite to chow down one Ritz cracker over the course of an entire day. Most girls would dream of stepping on a scale after 2 weeks and seeing a weight 15 lbs. lighter than normal but to me it’s been an uncontrollable and unhealthy reality that I would so badly avoid if I could. It was never easy getting colonoscopies in my 20’s next to men in their 50’s getting theirs for the first time wondering what I’m doing there so young. Constantly calling doctors and pharmacists to prescribe new medications that “might get everything under control” is the worst form of phone tag to play. I can honestly make a string of lights for my entire bedroom with the number of empty orange CVS pill bottles that I’ve accumulated within the past 3 years and sell it on Amazon. Yes, it was disappointing not being able to hold down any of the turkey, hummus, and MOST importantly, the buffalo chicken dip this Christmas. It was even more of a disappointment trying to sell my $80 New Year’s Eve ticket to no avail while my friends rang in the New Year and I watched Netflix. It’s now also become increasingly complicated trying to balance a career and a workload with symptoms that are so unpredictable and hard to articulate to coworkers, (thankfully, my manager is overwhelmingly understanding).
With the support and understanding of those around me, it’s a lot easier to stay positive about the entire experience. Was I that girl that fainted in front of the registers at Marshall’s from dehydration? Yes… that may have been me… so next time I shop I’ll just wear a wig and sunglasses and no one will remember a thing. I’ve quickly learned that things that were formerly given so much importance (i.e. going out and getting drunk with friends or excitedly getting a text from that guy you met at the bar) are far from a focal point if you don’t have your health. Amongst all of these roadblocks I’ve faced this past month or so (apologies if I came off too cynical last paragraph), I’ve been able to keep a smile on my face because it really could be worse. I’m so fortunate to have the utmost support of the greatest friends and family who’s inspiring words and intermittent “hope you feel better’s” have literally kept me going each day. The continuous reminder of “it’ll get better” honestly goes milestones in my mind.
As I’m going on hour 12 in this hospital room, (now dimly lit), because my mom is trying to catch some zzz’s on a recliner beside me (bless her heart for staying here overnight - quite possibly the greatest mother on this planet), I remain extremely positive and hopeful that there is a light at the end of this tunnel. On the plus side, after facing a whopping 10+ needles today, I won’t even flinch seeing one when I get my flu shot this year. I’m not bothered by the nurses who continue to wake me up to take more blood, give me some type of transfusion or vitamin, or give me another shot because at the end of the day, they’re here to help me regain my health which is all I can ask anyone for. Underneath it all, personal struggles are what you make of them and not letting disease define you can make the biggest impact. :)
I’ve never felt comfortable enough to be honest about my struggle with UC because of my fear of judgment and being misunderstood. It’s definitely hard to maintain relationships and remain positive when being sick for weeks at a time; and my struggles were never anything I’d wanted to burden anyone else with. I’m not writing this post for sympathy or pity – but simply to raise awareness about IBD and to share my story in hopes that someone out there going through a similar struggle can relate. No one starting their second half of college wants to be told that anything is wrong with them. Additionally, no one wants to spend the entire week before graduation burdened with stomach pains during a time that should’ve been fully dedicated to non-stop celebration (and vodka crans).
Living with UC in college definitely had its obstacles to say the least. When sick, alcohol and inflammation were not two variables I was jumping up and down to mix together, which made living in an environment surrounded by a strong drinking culture (go Wildcats) a challenge sometimes. In my mind, going out without drinking when I had flare-ups was perfectly doable because I wanted to spend what’s known as “the greatest 4 years of my life” socializing with my friends no matter what. Unfortunately at times, it was hard for others to see it that way. You’d assume people would focus on how drunk they were getting on their own instead of scoping me out in the corner holding a Sprite and calling me out for it. Although I’ve been repeatedly asked to this day- “why aren’t you drinking?” or “why even come to the bar if you aren’t going to drink,” it was much easier to pretend I had an exam the next morning, fake a hangover, or claim to be taking antibiotics then to try yelling over the speakers blasting “Down in the DM” in the middle of the bar that I have this disease. However, when post-grad life came around (kudos to my fellow recent grads trying to avoid being washed up), I came to realize that in telling those white lies all the time, I wasn’t being honest with myself, others, or being true to the person I am.
This disease is an enormous part of what makes me “me” that I physically can’t hide anymore because there is no excuse I can piece together to explain why I’ve been this sick so consistently for the past month. The extreme lows that UC has caused me recently resemble such deep troughs that, at times, I’d never thought I’d be able to climb out of (literally, my arms are currently the size of tree branches.) The constant reintroduction of dangerous steroids between flare-ups that have caused anxiety, irritability (if I’ve lashed out at you at any point ever, I apologize, and now you know why), and potential long-term complications were not fun to experience. It’s strange going from craving a bacon cheeseburger 24/7 to finding myself overjoyed at the fact that I have a big enough appetite to chow down one Ritz cracker over the course of an entire day. Most girls would dream of stepping on a scale after 2 weeks and seeing a weight 15 lbs. lighter than normal but to me it’s been an uncontrollable and unhealthy reality that I would so badly avoid if I could. It was never easy getting colonoscopies in my 20’s next to men in their 50’s getting theirs for the first time wondering what I’m doing there so young. Constantly calling doctors and pharmacists to prescribe new medications that “might get everything under control” is the worst form of phone tag to play. I can honestly make a string of lights for my entire bedroom with the number of empty orange CVS pill bottles that I’ve accumulated within the past 3 years and sell it on Amazon. Yes, it was disappointing not being able to hold down any of the turkey, hummus, and MOST importantly, the buffalo chicken dip this Christmas. It was even more of a disappointment trying to sell my $80 New Year’s Eve ticket to no avail while my friends rang in the New Year and I watched Netflix. It’s now also become increasingly complicated trying to balance a career and a workload with symptoms that are so unpredictable and hard to articulate to coworkers, (thankfully, my manager is overwhelmingly understanding).
With the support and understanding of those around me, it’s a lot easier to stay positive about the entire experience. Was I that girl that fainted in front of the registers at Marshall’s from dehydration? Yes… that may have been me… so next time I shop I’ll just wear a wig and sunglasses and no one will remember a thing. I’ve quickly learned that things that were formerly given so much importance (i.e. going out and getting drunk with friends or excitedly getting a text from that guy you met at the bar) are far from a focal point if you don’t have your health. Amongst all of these roadblocks I’ve faced this past month or so (apologies if I came off too cynical last paragraph), I’ve been able to keep a smile on my face because it really could be worse. I’m so fortunate to have the utmost support of the greatest friends and family who’s inspiring words and intermittent “hope you feel better’s” have literally kept me going each day. The continuous reminder of “it’ll get better” honestly goes milestones in my mind.
As I’m going on hour 12 in this hospital room, (now dimly lit), because my mom is trying to catch some zzz’s on a recliner beside me (bless her heart for staying here overnight - quite possibly the greatest mother on this planet), I remain extremely positive and hopeful that there is a light at the end of this tunnel. On the plus side, after facing a whopping 10+ needles today, I won’t even flinch seeing one when I get my flu shot this year. I’m not bothered by the nurses who continue to wake me up to take more blood, give me some type of transfusion or vitamin, or give me another shot because at the end of the day, they’re here to help me regain my health which is all I can ask anyone for. Underneath it all, personal struggles are what you make of them and not letting disease define you can make the biggest impact. :)