I had always been a sick child. I can remember constantly calling my parents from the nurse’s office. While sitting in the nurse’s office I found myself wondering what was wrong with me, and why everyone in the school office knew me by my first name. I was that kid.

It was the spring of 2007, and I was finishing up my junior year of high school. It had been the hardest year of my life with classes becoming increasingly more difficult and a mysterious illness plaguing my body.  With daily diarrhea, debilitating stomach cramping, anemia, and other severe problems (which I will spare you from) it became clear that something was seriously wrong –– it was more than just the gluten sensitivity and irritable bowel syndrome I was previously diagnosed with.  My illness was at a tipping point and my quality of life had decreased dramatically.

I was finally given a colonoscopy and subsequently my mystery was solved: I had moderate to severe Crohn’s colitis.  While I remember feeling relieved to finally have a diagnosis, I was also extremely disappointed that it had taken nearly a year. How much needless suffering had I endured?  Soon after my diagnosis and one failed surgery later, I made the transition to the UCSF pediatric IBD clinic with Dr. Mel Heyman. This may have been the most important decision of my life. Dr. Heyman, along with Laura, the nurse practitioner and a team of other medical professionals, identified the right medications for me, referred me to an exemplary surgeon at UCSF and ordered additional tests. Over the following months, the substantial decrease in my symptoms was nothing short of miraculous. To me it felt like being released from a confining and painful space, into one that was warm and safe.

Over the years, I have felt truly empowered by the team at UCSF to take an active role in the treatment of my illness. Some of the modifications I’ve introduced into my care plan have involved: a gluten and dairy free diet, the intake of potent probiotics, and getting plenty of exercise. I am an avid surfer, and feel really energized by the rough waves at Ocean Beach here in San Francisco. I have also recently become interested in how psychological stress may negatively impact patients with IBD, and would like to investigate this further. I am grateful beyond words to have had Dr. Heyman as my pediatrician and to be currently volunteering my time as part of the UCSF IBD team.

Andrew graduated from the University of California, Santa Cruz with majors in Neuroscience and Psychology. He is currently volunteering with the UCSF IBD clinic, and plans to attend medical school starting in the fall of 2015.

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.

Picture this: you’re waiting for class to begin, or an elevator to open, or for a cashier to call you to the counter. Sound familiar? Welcome to my life. With a fair amount of time spent waiting, I often (along with the vast majority of my contemporaries) pull out my smart phone and start sifting through text messages and checking (and re-checking) my email. It kills a few minutes, and before you know it, class is starting or the elevator comes or the cashier calls out, “Next in line!”

Three summers ago after I returned home energized from my freshman year of college, I began a summer job as a babysitter to three one-year-olds. I love kids and these little ones – a pair of identical twin boys and a little girl – were as precious as they come (besides nap time when the boys would cry until their faces were red). I so enjoyed watching them discover the world and interact with myself and each other. I had just started a new biologic medicine before leaving school for summer break – it was going to be ‘the one’ (sadly, ‘the one’ in the chronic illness world rarely refers to a significant other, but instead the lofty potential of a medication to bring on the sought-after remission).

Spoiler alert: it was not ‘the one’ and one evening I found myself at the mouth of a toilet throwing up. I banged on the ceramic tile floor of the upstairs bathroom to get my parents’ attention downstairs in the kitchen, and after they ran up the stairs to see what the matter was, they found me in tears pleading to them that something just wasn’t right. A scope and lots of sedation later, the answer: severe inflammation throughout my colon. There’s a lot of ways to say it, but it came down to one thing – farewell colon.

There was a park a little ways away from the kids’ house and we would often walk there to play (note: a triple stroller with three kids is super heavy!). I recall walking home from the park one day and needing to go to the bathroom, immediately.   I considered going to a random house and demanding to use the bathroom but decided against it. I made it back to the kids’ house and soon found myself housebound there with my three charges, herding them in the bathroom so I could watch them every time I needed to go (which was quite often). Between bathroom breaks I can remember standing in the kitchen with an Oreo on my tongue, trying to find the energy to play with the kids.

The question soon became how did I get so sick so quickly? The answer was complicated – first and foremost, I had never really been well. Secondly, and perhaps more importantly, I had become so accustomed to feeling ill and dealing with symptoms that the feelings of wellness, health, and energy were merely distant memories. I could talk about them, but could not really physiologically remember what it was like to be well. Going to the bathroom existed solely as a horrifying painful experience, but it was my daily reality. And somewhere along the way, my disease had made the transition from uncomfortable and unpleasant to unbearable and unrealistic.

Having Crohn’s isn’t my fault – but it is my responsibility to do my best to take care of myself. After some initial denial, I was a conscientious patient who asked a lot of questions and adhered to my medications and spoke honestly with my doctors.  But I said farewell to my colon anyway.  What had I done wrong? How could I have better predicted the steep descent of the flare that eventually took my colon? Another spoiler alert: it all ended up just fine, as I was able to squeeze in my ostomy surgery a month before my sophomore year; I returned to college that semester and I love my bag. But the whole experience made me think, there must be a better way to track my symptoms so that I can catch myself when I’m starting to slip down the mountain; so I can alert my doctors and put up the CAUTION signs and figure out a strategy to rescue me from a debilitating flare.  You know, even without a colon, I still get flares.

Now picture this: you’re waiting for class, the elevator, or the cashier. You reach for your phone, but instead of texting a friend, or checking the weather, what if you took two minutes to track your symptoms? Well, luckily for us, there’s no ‘what if’ because it is real. It being Ginger.io, a smart phone app and ICN innovation that does a few super cool things. In honor of Ginger.io, I’ve made a list.

Ginger.io is Super-Cool Because…

1) It looks cool – it’s a sleek app that’s easy to use (in research geek-speak: it has a great deal of clinical utility because it’s feasible for participants to navigate).

2) It sends you push notifications when the surveys (which take an average of 2 minutes) are ready to complete, so you’ll never miss a beat.

3) It leverages your smartphone’s location services with the idea that when you’re feeling well, you’re moving all over, and when you’re feeling icky, you’re staying in bed with some Netflix (okay, so maybe the latter is just me….). The app literally tells you how much you travel so you can have a clue as to whether or not your ‘moving and grooving’ habits have changed (but don’t worry, it doesn’t creepily stalk you!).

4) Daily surveys capture the details of whether your pain is getting worse or better, whether you’re going to the bathroom more or less – in other words, it helps you become more conscious of your disease and any changes in your symptoms (i.e., giving you and your medical team the power to stop a flare in its tracks).

5) You get your info – you have a chance to receive a monthly graphic report of your answers to bring to your next doctor’s appointment.

6) It pays! A little moula never hurt anyone! Since you’re helping with research, there’s a financial incentive for every survey completed – and no, it’s not monopoly money!

Would my disease and surgical history have been any different if Ginger.io had been around 3 years ago? Maybe. But my point isn’t about rewriting my history; it’s about my ability to get engaged by tracking my symptoms and about being involved in health care innovation research in a way that is directly beneficial to me (and hopefully many others who live with chronic illness every day). In a busy world, Ginger.io is an efficient use of my time.  I don’t mind spending a few spare minutes here and there to catch up on my health and assess how I’m doing.

Your mission, should you choose to accept it, sign up for Ginger.io.  Take a few minutes to dedicate to your health on a daily basis (and hey, it will come in handy when you’re bored and staring at your phone), it’s an app-solutely great idea!

Jennie

To my 12-year-old, newly diagnosed self:

For a long time, you will regret your decision to tell your parents that you were hurting. You will wish you had kept the pain and the blood and the fear a secret so that you wouldn’t be different and sick.  You will wish it very much, using up your wishes on birthday cakes and fallen eyelashes. But first, let me tell you, you did the right thing and that not telling your parents would not have kept you from getting sick.

As of today, I joined ‘the real world’ - aka started my first real-world-full-time-look-I’m-an-adult-honest-to-goodness-getting-paid job. Today went as follows: 1) I ran into the PI of the study (who’s the head of the division, and who I’ve worked for the past couple of summers) and he gave me a hug (the day was off to a good start) 2) Got my ID badge which officially says “Jennie David, Cardiac Surgery, Research” - AWESOME 3) Found out that my ID badge gave me access to the OR (unnecessary, but totally cool nonetheless) 4) Geeked out with a co-worker over the research studies 5) Nearly drooled on my computer at an abstract that’s being presented at an international conference in a couple of weeks where I’m listed as a co-author.

Graduating from college is more or less synonymous with the phrase, “Here comes the real world!” To paraphrase a speaker at graduation, if this is the real world, where was I living for the past 21 years? The dictionary defines real as, “actually existing as a thing or occurring in fact; not imagined or supposed.” I would therefore like to argue that my entire life has actually existed and occurred in fact and has neither been imagined or supposed - so I would like to believe it’s all been quite real. The question becomes - what does joining ‘the real world’ mean?

For those of us living with chronic illnesses, we joined ‘the real world’ a long time ago, often years before our contemporaries. I would gander to think that ‘the real world’ refers to a certain consciousness, when you are acutely aware that your actions have consequences, that things matter, that responsibilities have weight, that bills need to be paid on time, and that if you put dark jeans in with white laundry you will dye all of your underwear blue. To quote Joan Didion in ‘Goodbye to All That’, a favorite essay of mine (that I highly suggest you read if you find yourself entering ‘the real world’), “That was the year... when I was discovering that not all of the promises would be kept, that some things are in fact irrevocable and that it had counted after all, every evasion and every procrastination, every mistake, every word, all of it.”

Definitions are, in virtually every way, relative and changing. Entering adulthood is different for everyone, just as living with an illness is or even a person’s preferences for candy. ‘The real world’ - or the awareness that you have a choice in making things the way you want them - isn’t something that’s prescribed only to the cohort of recent college graduates, it’s something that can happen at any time to any of us. For me, I was 12 and newly diagnosed and began to realize that I had the ability to define what Crohn’s meant for me and to defy what others thought it meant.

There is a difference between being chronically ill (a physical reality) and living with a chronic illness (the emotional experience). Today, in the midst of loving my new ID and reading over papers, I was temporarily bothered by the psorasis sprouting along my arms and legs and the ache in my abdomen compliments of my inflamed guts grumbling. Does it mean I didn’t enjoy my first day? Does it mean I can’t be successful at my job? Of course not. I’m just a girl who has a lot of goals and dreams and will work my butt off to get there - step one, doing my best at my research job, step two, getting where I want to go. I’m someone in my own right, and my Crohn’s fits in, but it does not define me in and of itself.

I remember the first time I ever heard the term ‘glass ceiling’ and thinking it was a funny way of talking about limitations. After all, even if it’s a glass ceiling, you can see the sky, so is it really that bad? But I think that’s the point - you can see what’s out there, but you’re boxed in and can’t get out. We all have preconceived notions about what it means to live with a chronic illness - we might think it means we can’t have a job, or a significant other, or move away from home, and so on. But at the end of the day, we are free to choose our own definitions - and they can change - and we are free to defy the expectation that a life of illness is a life of suffering.

So go ahead - defy expectations, define yourself according to yourself, shatter those glass ceilings. You’re already living in the real world, so go out there and do a downright gutsy job of it.

Jennie

There are evenings like tonight that I am sure I will remember in thirty years. There’s nothing remarkable about tonight, just a quiet evening at home, only it entails being forced to watch the school’s football field undergo a Cinderella transformation into my way-too-soon college graduation. And as such, I am overcome with a simultaneous sense of relief and panic – causing me to nearly freak out at the sight of the stage being built with a near “WAIT, I AM NOT READY TO LEAVE”. But alas, no one would hear me, so I will spare my neighbors the screaming.

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.

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.

I’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.

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.]