ImproveCareNow Pac


Kicking Up Confidence

My lucky parents were blessed with a child who not only won the IBD lottery, but long before that diagnosis, had a severe reaction from eating a nut at age two. Growing up with a life-threatening nut allergy, I became accustomed to standing out from my friends long before my IBD diagnosis - but that is a story for another time. The point here is, I mastered the game of careful avoidance from a young age. Although I was not sensitive to the smell of nuts, I would take care not to even hang out in the same room as any. I was taught well that they were the enemy, and the farther away I stayed, the safer I felt.

 

So, you can imagine my surprise (read: horror) when, on my very first college campus tour, our guide announced that one of the distinguishing features of the campus was a large courtyard brimming with pecan shells. I stuck to the sidewalk when the group walked through the (admittedly beautiful) pit of possible death, trying hard not to let this unexpected development spoil a day that had been wonderful up until that moment.

 

I came home disappointed but determined. I returned for a second campus visit prepared. After two rounds of allergen testing (including literally walking into my allergist's office with a bag of pecans and asking that we rub them all over my feet), we confirmed that although I had not outgrown my oral allergy to pecans, I did not have a skin allergy. So, one year later, I returned to that pecan court - and despite the March cold - donned flip flops and stomped all around that thing. My heart was racing, but I had to prove to myself that I could do it.

 

Pecan Court as described by Sami I was literally walking, kicking, and dancing through a Pit of Things that Could Kill Me.

 

But I did it. And nothing happened.

 

Three years later, I walk through that pecan court at least once a day. And sometimes, I feel a little surge of victory. I can do what I once thought I couldn't do. Other times, though, I feel a pecan shell slip beneath the sole of my shoe and rub up against my foot - and despite the overwhelming evidence that I won't react - I still look for a hive to pop up. I am safe - but I can never erase that twinge of fear and doubt.

 

IBD is similar in some ways.

 

I have been in remission for over two years. But in that moment I see a red-tinge on the toilet paper, my mind inevitably begins to race off in directions I know it shouldn't go. I'll think, 'This is it. This is the first drop, and tomorrow there will be two drops, and then in a week there will be red all over the bowl, and then I will be on Prednisone, and I should go freak out now.' I always manage to regain my common sense by the time I finally flush that terrible industrial grade skin-irritating toilet paper away, but the panic never fails to set in for just a moment there. Even now.

 

I know remission is not a cure, and thus I am always ready to lose it. When I feel an abdominal cramp come on, I know I should go straight to the conclusion that it's just my menstrual cycle. That's the most likely conclusion, and for three years, that has been what it always turns out to be - but my mind never goes there first, even now. Perhaps it's a coping mechanism for when the day does come that I slip out of my remission - as if I think I'll find comfort in saying, 'Well, at least I knew this was coming.'

 

Living with a chronic illness, I am always walking through a pit of danger. Right now, I'm protected, my treatment is doing its job, but I know my armor is unlikely to last me forever. My 6mp probably won't hold off my immune system until I'm old and gray, but in the absence of a cure, my disease isn't going anywhere. Even my medications could hurt me one day.

 

But, just like with my nut allergy, there are things I can do to protect myself. I can take my meds on schedule. I can check in with my doctor every three months. I can be alert to my body and bowel movements so that I catch bumps in the road before they progress to flares. I can avoid behaviors and foods that might trigger problems, and do my best to keep my body healthy and rested.

 

It's important to know what I can't do, but it's equally important to know what I can do. I can walk through that pecan court. And, with a touch of luck and a lot of cooperation as an engaged patient, I can be an IBDer who hangs on to that remission for what I hope will be a good long time. It's important to know where I stand, but even more important to walk with confidence through wherever I am - whether it's the sidewalk or a courtyard of pecans, remission or a flare.

 

IBD was certainly unexpected and (if I let myself become preoccupied with all the what-if's of my disease) can be unnerving, but I am walking, kicking, and dancing through it.


Making the Team

Patient Scholar Sami KennedyIn October 2012, I arrived wide-eyed and a little afraid at my first ImproveCareNow Learning Session. I remember walking into the big room with my luggage and taking in the scene - so many brilliant clinicians and researchers I admired and greatly respected all in one hotel for one weekend. And here I was, too. I am nineteen - and so to many, I'm just a kid still. I didn't know what to expect, but I did expect to listen more than I spoke. After all, in a room full of some of my personal heroes, I was "just a patient."

 

As the inaugural Patient Scholars, to say that Jennie and I have been given the opportunity to live a dream would be an understatement. For a girl who expected to listen far more than she spoke, my voice has been valued more than I could ever have hoped or imagined. Jennie and I are just two patients - but to think about how many patient voices can and will resonate at future Learning Sessions excites me more than I can express. It's so clear to me now that "Just a patient" is not a concept that exists in ImproveCareNow.

 

On April 12th I returned to Chicago for the first Learning Session of 2013. Gutsy 2 (myself) may have been without her Gutsy 1 (Jennie) - but together through the art of virtual communication and the help of some friends, we didn't let a sudden strike of illness take away our weekend of hard work and joyous celebration. We shared in a presentation on self-management support and treatment adherence. We opened up about our stories and the accomplishments of the PAC (Patient Advisory Council) over the past year. We were inspired by stories of progress and achievement coming from all around the network. I even learned a new dance - the PDSA - aptly named after a fundamental quality improvement measure - because QI is really at the heart of making care better and thus rightfully deserved a spot at the heart of the celebration! (I expect PDSA to go viral on YouTube any day now.)

 

For a moment, when I landed in Chicago, I felt that familiar sudden shock of fear. For just a moment, I felt little again, like I was "just a patient" with a lot of ideas on the fringes of a great big community. But, this time, when I entered the conference room, I knew I belonged in this community. In one year's time, it's my hope that more patients will have felt the joy of this kind of welcome.

 

Five years ago today, I was waking up early - colon all cleaned out - and driving to the hospital with my mom, neither of us knowing I wouldn't be going home that day or that a whole new world was about to welcome us. Six months ago, when I arrived in Chicago for my very first Learning Session, I couldn't have even imagined myself standing in front of such a brilliant crowd and sharing my story - a story that only just begins with a diagnosis and hardship - on the level I did last weekend. Today, I can't imagine what comes next - but I know I'm humbled to have a voice that can share in the learning. I am eager to pass on the torch of leadership to the next Patient Scholars - because we all have stories, and many of the stories I heard last weekend touched me deeply and reminded me of why I do this.

 

I do this because, right now, another young girl and her mom are driving to the hospital - and they don't know what comes next - but I do.

 

That young girl will get better. And maybe, if we all reach our hands out together to say that everyone can make a difference and is valued on our team, she'll be able to help change care for the better for the next girl with IBD.

 

Like any good team, we are more than the names on the backs of our jerseys when we unite.  In this Network we are more than the names we go by: patient, parent, researcher, clinician. I am so proud to have a jersey on the ImproveCareNow team.

 

Together, we have quite the winning streak. And one day, I really do believe that we will achieve that cure, together.


All or Nothing

This semester alone, I have heard the phase “all or nothing” easily a gazillion times. Okay, I might be exaggerating here, but what I’m trying to say is that my psychology classes have discussed – repeatedly, at length each time – the ‘danger’ in “all or nothing” thinking. And it’s very true, because things are never black or white, things are not all or nothing. It’s not as easy as saying that someone is sick or healthy, there are grey areas in the middle, that slick slide you find yourself on traveling from one side to the other.

 

I hear my professors say this – I have proof of this scrawled in my doctor-worthy handwriting – and yet, I watch them crash through the glass walls they just built. Today in a class, a guest lecturer was talking about chronic pain. I know the guest lecturer meant well and he was in truth ultimately very determined to make a difference for those living with chronic pain.

 

But – some rules of thumb for doctors/parents/anyone reading this: not everyone who will deal with chronic pain/illness is anxious or depressed. Everyone (illness or otherwise) will deal with anxious and depressed moments, absolutely, but that does not mean they present with clinical psychopathology or that it is the heart of the problem.

 

One of the points this lecturer made was to help encourage positive thinking, active lifestyles, and a sense of control. So here’s an important note – if you want patients to have positive thinking, the doctor has to be positive with them, if you want patients to have a sense of control (and better yet, not just a sense but actual control), then a doctor has to be willing to share. It’s not all or nothing, it’s not you versus me, it’s us, here together – the ‘chronic’ should be a hint that there’s a plethora of time together. So use it wisely.

 

With each passing lecture, the urge to stand on my chair and shout (no, not ‘Captain my captain’, though that would be pretty awesome) “Hey you, listen, I’m a patient and I disagree. You can’t judge me or make blanket statements about me and all patients because you don’t know me.” This might cause massive disruption to the class and/or result in a stern conversation about being adults and not interrupting others when they’re speaking. But, like every kid knows, if you don’t have anything nice to say, you shouldn’t say it at all.

 

Sometimes I think people forget that patients are not lab rats. We’re not a separate population, smushed somewhere between children and adults. It’s like wearing one of those really itchy and constricting outfits for a family function and all you want to do is rip it off, but that would be impolite and people might stare so you smile tightly and keep your mouth closed. It is so polarizing to say people can only be a patient or a doctor, no in-between space, or shared community or feelings or beliefs. One or the other. All or nothing.

 

So I will stand up metaphorically on my chair (though, in reality, this involves me typing passionately at my computer) and declare that I am not just a patient, it is not black or white, not every person with a medical issue experiences anxiety or depression or is incapacitated crying ‘why me’ in a corner with a sappy violin playing in the background. Most of us are strong and capable and fighting – we’re advocates and whole, real, amazing people. We are every color imaginable, because black and white is boring, we are everything because to be all or nothing is belittling and untrue. We are loud, and we will never be quiet.

 

Jennie


Jennie's Shield

Warrior Statue Silhouette and Orange Sky[Editor's Note:  IBD is definitely not always guts AND glory...sometimes it's just guts...and as Jennie puts it - disobedient guts.  Staying positive and empowering others to do the same is important to Jennie, but she recognizes that it's also important to stay real.  And it is a very real challenge to live with a chronic illness each and every day - physically and psychologically.  Read Jennie's musings about her most recent Gutsy Generation post, titled "The Shield".]

 

My blog posts usually focus on living well and living large with IBD - my goal is to always portray a 21-year-old finding her way in life with disobedient guts. Someone once told me that they admired my ability to be vulnerable, which at the time I was mortified by this comment. Vulnerable? What an insult! I thought. But now I think it is one of the nicest compliments I have ever received.

 

Why the change in attitude? Being vulnerable and exposing your scars - literally or metaphorically - shows that no one is perfect, everyone struggles, life is hard and it's about getting through and getting up. Every individual at one time or another will face anxious moments, sad moments, frustrating moments, and the like - it's normal and in so many ways it's what it means to be human. This is all the more important in pediatric chronic illness, when children with healthy psychology are confronted with incredible physical and emotional trauma. It's like buying a map to get to a different city but having the car break down on the way - it's critical to support mental health alongside physical health in flares and remission.

 

It's not that it's 'all in your head' by any stretch of the imagination, it's that it's impossible to tease apart psychological health from physical health - anyone who is nervous feels butterflies in their belly. The psychosocial issues of IBD warrant discussion and reflection and not just from the 'outside in' (i.e., doctors and researchers), but from the inside out, where patients can stand up and say - without shame or embarrassment - that they're struggling and need help. This is a way we can truly improve care now.


It's Good To Have A Voice

Good to have a voiceI’m a big proponent of the patient voice. It’s only natural for me. My second grade teacher actually nicknamed me “She Who Is As Loud As Thunder” for a Thanksgiving program. I was a loud kid, and any of my friends will tell you I haven’t changed much. IBD was a temporary knock down, but it didn’t take me long to get up. On my second day in the hospital after diagnosis, I was making a list of questions for my doctor. I didn’t have the courage to say them just then, but I was making the list and handing it off to my mom. I’ve always been opinionated and talkative, so becoming an engaged patient was an inevitability.

 

So my speechlessness took me by surprise when a professor asked my class (Literature & Illness - sounds like the best class ever, right?) to characterize what it means to be a patient in one word. It was the one word part that stumped me. I can speak my thoughts as a patient in blogs and essays and whatnot, but one word? Coincidentally, I was the final student to be asked, so I was able to listen to my classmates’ answers first. The word powerless came up a lot.

 

And it occurred to me - I’ve rarely felt powerless in my care. Lonely? Yes. Frustrated? I would have shouted that word at you when my Prednisone taper failed back in sophomore year. Scared? Here and there. But powerless? Rarely, if ever. Why? Because I’ve always been allowed to have a voice. My voice has never been shot down. I’ve never needed to settle for being quiet - and maybe that’s why I feel powerful in my care.

 

Having a voice has allowed me to feel comfortable with my treatment plan. It's allowed me to feel okay asking questions. Lists don't get passed over to my mom anymore. It's certainly made me feel prepared for the ultimate transfer to adult care in a couple of years. Most of all, having a voice in my care has given me the confidence to be comfortable with my life with IBD. I would say that's quite the opposite of powerless.

 

Take this week. I’m waiting in the mail-room to pick up my seven week supply of enemas, which came in a very big box. A very big box at least twice my width. And in college, a big box typically indicates (a) cool new furniture or (b) a very special care package from someone who loves you a lot. So, naturally, one of my friends got very excited when my box and I made it back to my dorm. And while I won’t deny that my mother loves me a lot, the contents of the box weren’t quite what my friend was expecting. The best part - after she figured it out, we had the greatest laugh. Two years ago, this might have been awkward. Instead, it was just a hilarious moment among friends. I felt comfortable enough to control the situation and make what easily could have been a negative situation into a positive one.

 

This is the reason I’m such a big advocate for patient involvement in care. There are the obvious reasons - it contributes to better adherence, psychosocial adjustment, and understanding of their disease. But I believe, most importantly, when patients are enthusiastically encouraged to join in the decision-making process - and given the resources to do so effectively - their confidence can skyrocket. I’m certainly a more confident young adult after having IBD for a few years than I was before, and I know my experiences with IBD have been a huge factor in my development.

 

Whether it’s feeling comfortable enough to laugh in my doctor’s appointments or laugh over my friend’s reaction to a box of enemas, it’s the same feeling that’s hit me lately. It’s good to have a voice.

 

Back to class, when it came my turn to define a patient in a single word, I chose changed. That’s really what it is and should be when it comes to the patient voice - not the loss of a voice, but a changed voice. A voice that needs to learn how to join in harmony with others to form a unified care team, but still a voice that can be heard loud and clear.


Nobody Puts Baby in the Corner (or a Space-Saving Bag)

Today in class, a guest lecturer talked about patients with chronic illness “having to get used to” their new roles as patients. Those words were not the main point of the sentence; they were the words you say trying to pad the time, but nevertheless they were there, sandwiched in between other ideas. It made me think of space-saving storage bags. My grandparents bought them years ago, in an effort to control the umpteen crocheted afghans that had begun to overtake their Florida condo.

There’s a sense of disbelief – or at least at 13 I possessed such a notion – that overtakes you when watching someone demonstrate a space-saving bag. They show you the pile of items to be stored and the nonsensically small bag that the items will supposedly all fit into. No, your reasonable brain informs you, this is impossible; it is foolish, for it seems like trying to fit the entire American population into the state of Rhode Island. But the miracle is performed; disregarding your doubt, the vacuum is hooked up to a special port in the bag, sucking air out and shrinking down the large pile until it is neatly, possibly even comfortably, squished in the teeny space-saving bag. And this is what I thought of, as the speaker lectured, about fitting into bags that can't possibly contain the whole of you - until you shrink.

There is something about being a patient that is belittling, and for the chronically ill, something that is voluntarily so. We comply and save our feelings for favorite books, comfort food, the song that always makes us smile, the memory of our first car, our first kiss, our first failure, plans to travel the world, and whatever else makes us up.  Instead we don the Johnny shirt, shrinking into our own space-saving bag. We become reduced down to our disease; a list of symptoms, a medicine cabinet of pills, a medical record number.

If there is a manual on how to deal with a chronic illness, I missed it. As far as I'm concerned there are no rules, all you can do is live (and trip) gracefully. Yes, it is important for people with chronic illnesses to learn about their illness and to adjust to what it means (read: adjust emotionally not adjust your expectations about your life's possibilities).  But it is also important to be true to yourself.  When I wake up in the morning and get ready for class, or sing along to some favorite lyrics, or tell my parents about my day, or make cupcakes for my roommates; I am not my disease. I am Jennie. I am a girl graduating from college who wishes Patrick Dempsey would marry her - and so many other things. I politely, but fervently, refuse to be put in a space-saving bag, because it’s impossible to shrink me down and after years of being reduced to a diagnosis, I will no longer allow it.

The noun ‘doctor’ comes from the Latin ‘docere’, which means ‘teach’. ‘Patient’, on the other hand, is also Latin but means ‘suffering’. Even if you can manage to overlook the double meaning of patients having to be patient, the roots of the words speak for themselves. But the best doctors are the ones who suffer alongside you, who see the pain you’re too proud to admit to, who are normal and everyday and accessible and in that way wholly incredible and wonderful. And the best patients are the ones who never pass up the opportunity to teach a doctor, a nurse, or a medical student. The relationship between a patient and a doctor is dynamic and constantly evolving, and only when we can understand and respect it as a process will we ever be able to meaningfully work together – to quote a Taylor Swift song (but of course), “two is better than one”.

So be a little rebellious (if you’re like me, you never really went through the traditional teenage rebellion phase [Mom, Dad, feel free to disagree], you’ve earned it). You don’t fit in a space-saving bag, so don’t bother trying. Be patient with yourself, but no need to be only a patient – you are a teacher, you are incredible, you are a thousand other things, and (in the words of a fellow Crohnie) you deserve a beautiful life. That, my friends, is impossible to fit in a space-saving bag.

Jennie


Better

I'm often asked if I believe ulcerative colitis has changed me for the better.

 

It's a tough question. I can't go back in time and see how my high school years would have played out otherwise. There is no me, as I am now, without ulcerative colitis.

 

Has ulcerative colitis changed me for the better? The simple answer is no. My disease has not changed me outside of my intestines. I am the same girl with a few extra pills. The more complicated answer is yes* - with the asterisk. It's based on a technicality. No, UC has not changed me for the better, but living with UC has.

 

It starts with another girl: one named Tara. She was diagnosed with Crohn's Disease during her second year of medical school. A few years later, Tara had chosen to pursue a career in pediatrics and found herself on the inpatient rotation at my children's hospital in April '08 - the month of my diagnosis and subsequent hospitalization.

 

You can guess how this plays out.

 

I was the "I'm okay" kid in the hospital. I felt so good on steroids and so relieved to have a name for my disease, my answer to most everything became standardized. Did I want a visit from the art therapist? "I'm okay, thanks." Did I want another blanket? "I'm okay, thanks." It was my standard answer, so if asked if I wanted to participate in a mentoring program, I would have probably answered predictably: "I'm okay, thanks."

 

Tara was the mentor this "I'm okay" kid never wanted. She stayed one day after rounds to share her story. A day past diagnosis, I hadn't yet started to think about what a future with IBD meant. Thanks to Tara, I never doubted my potential. From the get-go, I knew Tara's story. If she could continue to pursue her passion with IBD, my possibilities were equally endless. Until I met Tara, I didn't realize mentoring is not an emergency measure; it's a survival skill. Her confidence inspired my confidence.

 

Being a good mentor is not about knowing the "right" thing to say or the "right" moment to say it. There will be moments when you don't know what to say, and there will be moments when it's best to stay quiet and just listen. Being a good mentor is not about the story; it's about the storyteller. The best storytellers - and the best mentors - realize that every story matters - and every story can change another story for the better.

 

Until I met Tara, I never believed a single patient voice could matter. Clearly, as I'm here blogging, I do now.


Follow The Leader

Many years ago now, I was at an IBD conference with several other patients. It was the last day of the conference, and we were sitting in a room, chatting at white-clothed tables with our suitcases at our feet. At 16, I was the youngest in the group by a couple of years - the others were a mix of guys and girls: college-students, with boyfriends and jobs and so on. The moment that is so clear in my mind all of these years later was sitting next to one girl I admired so much and bursting into tears. Alarmed (she had only known me for 48 hours, it was alarming to start sobbing!), she asked me what was wrong. Through my tears and melodrama I blubbered, “I don’t want to go home! No one else understands me like you guys do!”

 

Even though it sounds silly and very over the top, to my younger self, it seemed like nothing had ever been more true. I suddenly had a family of older brothers and sisters who got it, who could coach me from the sidelines and pick me up as I tripped trying to figure out adolescence with a chronic illness. And interestingly, if you asked the group why they were involved, the answer was always the same - so the younger versions of themselves would have the support and encouragement.

 

And it’s true - knowing someone else like you could do it means so much, it’s the I-think-I-can to the I-KNOW-I-can attitude switch, which is priceless. For me, that was the moment when I was suddenly in charge of my life again, and since then I have been fortunate enough to be that support for other people. Having mentors and people to look up to, gave me hope when things felt small and constrained, and in a lot of ways it gave me the fuel to keep going.

 

I am still in touch with my IBD friends from that first conference. Many of them are engaged or married, working and successful, one girl and her husband even have an adorable little boy. Yes, they are still sick, they still struggle to find the balance between patient and person, but they are living and doing an incredible job at it. Their mentorship to me is something that I will never be able to adequately thank them for, so instead I hope that by aspiring to be like them I will make them proud.

 

Jennie


Never Say Never

Under normal circumstances, I would avoid quoting my fellow countryman Justin Bieber in the title, but this my friends is anything but a normal circumstance. You see, I have set a record for myself. I went the entire semester without being in the hospital.

 

My first thought, ‘Is this what college is supposed to be like?’ Answer: apparently. Who knew. I managed to forgo my frequent flyer status at the local hospital (after all, the rewards are less than desirable, I’ve already ‘won’ enough scars to last me a lifetime) and get to all of my classes. I didn’t miss a class for feeling sick - instead I missed a couple of classes for attending an IBD conference and running a half-marathon. Sure beats my ‘sorry-I-decided-to-live-in-the-hospital-now’ line that has accompanied every semester.

 

My parent’s reaction to this: IT’S ABOUT TIME (yes, the feeling can only be expressed in caps). This semester has been full of college firsts - having a kitchen, living with roommates, starting my senior thesis. I think of my roomies, we’ll call them Maya, Mimi, and Ana, and can’t remember a time when I didn’t come home and see their faces, grinning at me, or bake them cupcakes or have silly dance parties to Disney songs. I felt this kind of way after my ostomy surgery a couple of years ago, like the reset button had been pressed and all of a sudden I was turned out bright and shiny (quoting Grey’s Anatomy, but of course).

 

If things were always sunny, I wouldn’t know any different. But when things are dark sometimes, it's nothing short of glorious to open your arms wide and squint into the sun. Not metaphorically, having had a rough go of it for my freshman through junior years, it means all the more to me to have had a wonderful fall semester of my senior year.

 

But this is not to say that challenges are not hiding behind my closet door and under my (impossibly high) bed (note: the bed is very high, I have a stool to propel me atop it). My small gut is dotted with grumpy ulcers, ready and waiting it seems to rain on my beautiful parade. But now it’s different - I have a say in my care, an absolutely wonderful GI, roommates and the best of friends who are all to willing to pick up prescriptions and keep track of what I’ve eaten during the day (“Jennie-fer, what have you had to eat today?” note: ‘Jennie-fer’ is my name for when I’m ‘in trouble’), and just be there and not talk about IBD or bowels or bags and just be 21. Of course sometimes I’m scared, sometimes there are tears, and sometimes I am angry that my body will never give me a break.

 

But more often than that, I am so very happy to be where I am. The other day I was standing in my living room on the phone with my Mom, and had this thought:  ‘Wait, how did I get here?’ The sheer fact that I’m a college senior, without any medical leaves: who's had two surgeries and extensive hospital stays, made me wonder how it all happened. And here’s how - with a lot of help. My parents, my friends, my professors, the disability office on campus, and my doctors. My education has and always will be, if I am so lucky, a communal effort. There is no way to thank everyone, all I can do is try and keep running as fast as I can toward my dreams.

 

Life is big and giant and arguably impossible and overwhelming at times. Maybe you feel like you can’t do something all by yourself, but the thing is there’s no reason you should have to do anything by yourself. There are so many others who love you and who are rooting for you on the sidelines (if you can’t hear them, maybe it’s just that your thoughts are turned up too loud). You can do it.

 

Remember, in the wise words of Justin Bieber - never say never.

 

Jennie

 

[Editor's note: Original post featured on The Gutsy Generation.  We made a few minor edits for clarity and to include links to other posts by Jennie, which you'll enjoy.]


One More Time, Just For Kicks

[Editor's note: posted originally on The Gutsy Generation, Jennie has shared One More Time, Just for Kicks with LOOP.  Enjoy!]

 

What would be the fun if things were easy? I prefer the harder, circuitous route that takes you a thousand miles out of the way only to end up a step behind - clearly the more enjoyable path.

 

I’ve since lost track of which stories I’ve employed as metaphors, but alas I shall tell another in the hopes of demonstrating my point. When I was about 9 I was sledding with a friend on this big, enormous, wonderful hill (that seemed like a mountain at the time) near my house. The short of the long story was that there’d been an ice storm that day before and the hill was slick and frozen. Regardless we still thought it was a good idea to sled, and we climbed in this big purple Rubbermaid sled (goodness knows why Rubbermaid made such a sled, but I’ll have you know it was quite hefty and heavy), her behind me, and pushed off. Needless to say it wasn’t the smartest idea to be sledding in such conditions, and soon enough we flew off a bump, did a 360 in the air, then I landed on the ice chest first, then her on top of me, then the big ol’ purple sled and all we could hear as we moaned and slowly slid down the hill was my Mom screaming at the top. When I decided to have ostomy surgery a couple of years ago, I did so knowing that I would still have Crohn’s, still have a chronic illness, still have medical decisions to be make, but it was a big step in treating and addressing my disease. And it was. I don’t for the smallest fraction of a second regret my choice. IBD treatment has been described to me as ‘step up’ treatment (ASAs to steroids to immunosuppressants to biologics to surgery) and by all accounts a complete protocolectomy at 19 was the most aggressive treatment possible. But now as I sit here with a flare-up, it feels like I did when I landed on my chest on that icy hill - the you-have-got-to-be-kidding-me-this-is-ridiculous kind of head-space. Even though I know it’s not true logically or medically, it feels like I’m back in the same place as I was before surgery making these difficult decisions about difficult medications.

 

It’s kind of funny - I’ve never had a flare-up without my colon before. To quote Aladdin, it’s a whole new world. Don’t get me wrong, it still sucks and hurts and seems particularly unnecessary and unpleasant. But I’m not running to the bathroom, and all of my colonic symptoms are only memories. I know for my parents they hoped - with good reason - that my surgery would be more or less the final event in my IBD journey, at least for longer than two years. I can sense their disappointment and frustration on phone calls, just as I feel disappointed and frustrated at times, but I know that I have their support about whatever treatment I choose (to this point my Dad informed me that my Mom and him were “100000% behind me”).

 

It’s kind of like when you’re somewhere and you smell something that seems familiar but it takes you some time to place it - having a flare and being ‘sick’ again is a transition that I’m getting used to. After standing on my soapbox about taking your time with medical decisions and so on an so on, it’s about time I take my own advice.

 

I just have to hold on, and close my eyes for the scary parts if I need to. Here we go.

 

Jennie


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