LOOP

On the day before my 21st birthday, my Mom informed me that I was now an adult and that I didn’t have to listen to my parents anymore (folks, you heard it here first!). I laughed at this, and inside I thought, can I really be turning 21? How is that even humanly possible?

As part of my summer research job, I was headed out of town on my birthday for a project. Everyone at work was apologetic about the untimely trip, my parents disappointed that they wouldn’t get to spend the day with me. I was unperturbed - completely happy and willing to travel for work on my birthday. And here is why:

I spent my 16th, 17th, and 19th birthdays in the hospital. I couldn’t eat the birthday cake, and all I wanted to do was stay wrapped in my covers and continue to watch McDreamy save lives on Grey’s Anatomy. My 19th birthday was particularly memorable. I was just under two weeks away from my ileostomy surgery, which I was so excited for I probably qualified for some diagnosable mental condition. The GI finally convinced me to try some pain medication, after I had refused it for some time (note: not because I was stoic, because I’d never had it for IBD before and thought it would be as effective as Tylenol for a massive head injury). And once I had the pain medication, life was awesome (pain control, where had you been all my life???). I was still in pain, but all of a sudden I didn’t care so much and my eyes just went a little blurry and I was instantly more comfortable. Everyone I had possibly ever known (and maybe even some people I didn’t know) came to say happy birthday and give gifts. I promise (sarcasm implied) if you want gifts for 6 months, have your birthday in the hospital and then get an organ removed. An appendix will do, no need to go for the colon. So if you can imagine me, sitting on my bed, happy as a clam and slightly (or okay, mostly) out of it, with gifts piled around me and people everywhere - then in walk people with guitars and they start singing happy birthday. I asked my parents about this, I swear I didn’t hallucinate it. As crazy and silly as that memory seems in hindsight, the very idea that two years later I could be pain-free and working on my birthday flabbergasts me. I was too sick to work, too sick to travel, too sick to enjoy my birthday.

So cue my 21st birthday: I was serenaded with happy birthday at work (being sung to by the chief cardiac surgeon was hilarious), piled in a car with my co-workers, had dinner, went for a run, watched the Olympics, and went to bed. A normal day. An ordinary day. But those of us with IBD know that normal is extraordinary, and days like that don’t come as easily or frequently as we’d like. As I was running, I took this photo and couldn’t help but smile at where I’ve been, and more importantly, where I’m going.

I know my future with IBD still exists, there are still uphill battles to lose and conquer, scars to earn and strength to be lent to me by those I love. But today, I am 21 and things are bright and shiny.

Fingers crossed, eyes wide open - adulthood, here I come.

Jennie

My college roomie does not have Inflammatory Bowel Disease. Yet, I’m convinced that if anyone stole my phone and read our daily text message exchanges, they would wholeheartedly believe that we both have a strange obsession with poop. We talk about poop a lot. More specifically, we make poop jokes a lot. Usually inappropriate poop jokes that I wouldn’t even repeat here. That’s not too much of a tragedy for you, since like most inside jokes between friends, you probably wouldn’t find them funny. Really, our sense of poop-humor is akin to the average six year old’s, but I wouldn’t have it any other way. It’s an incredible feeling to receive support from a friend without IBD. It’s even more incredible to laugh about poop with that friend. That’s the sign of a true ally, and it’s rare to find those outside of the IBD community. To get back to the recurring theme here, I’m crazy lucky.

Anyway, I started using the stool softener Miralax today to help with some IBD-related constipation. I texted from the parking lot outside the CVS: “Some have a closet full of beer at college. We’ll have a closet full of Miralax.”

A year ago, I sat at home crying and desperately searching the Internet for advice as I packed for my freshman year of college. I had a flare that wouldn’t let up and would need to use nightly enemas in my dorm room. I was convinced my roommate would think me a freak. What eighteen year old admits to using an enema? Who even uses an enema every night? For someone who claimed to be okay with her IBD, I really let my fear of rejection kick my rationality out the window. I practiced holding in an enema while sprinting from my bathroom to my bed. I bought a huge box to hide the prescription boxes. If I had known that over a year later, I’d still be using enemas nightly, I would have absolutely freaked.

Then, I got to college. I met my incredible friends. I realized I had blown the whole situation way out of proportion over the summer. When I first confided to my best friend that I use enemas, she barely blinked an eyelash. I was shocked. After all that panic, it turned out to be not a huge deal at all. A few weeks later, we watched “Dracula: Dead and Loving It” - which is a terribly funny movie I totally recommend that also happens to poke lots of fun at enemas (as a supposed cure for vampirism) - and I can guarantee that movie would not have been nearly as funny for us if I hadn’t (quite literally) let my enemas out of the box.

A year ago, I couldn’t have sent that text from outside CVS. I would have been terrified to bring packets of Miralax into my college dining hall. This year, I’m not even phased. I know it won’t be a big deal to her or any of my friends. In fact, I know there’s a greater chance of someone at the table making a joke over the white powder than anyone giving me a funny look for it. It’s just the way it is. My friends know me, know I have IBD, and know that it’s a serious disease that I’m okay with taking lightly sometimes. I am in a wonderful place that I wish was available to every IBD patient.

UC and Crohn’s are serious diseases. Chronic illness sucks and shouldn’t be taken lightly. That said, I think humor can make a world of difference in how a patient copes with their disease. I know I find it liberating to have a go at the disease that makes me go. I think nocolon33’s hilarious Alcatraz bathroom series is a great example of this. Humor is just another way I fight back against my disease. It may have my colon, but it’s got nothing on my spirit.

This summer’s family vacation was a trip to Disney World!! I had an awesome time. I watched my sister ride Mount Everest roller-coaster seven times.  I got to ride some rides myself;  my favorite was the new Star Wars ride.  The rides are good but the thing that stuck in my mind the most about the trip was an experience I had during one of the meals.

My parents bought a meal plan for us while we were there and this allowed us to enter into the Disney “system” that I had some food concerns.  This was cool because it meant the chef came out to our table for every sit-down meal we had, to talk to me about what foods I could eat. There was one particular chef at an Italian restaurant that we ate at on the last day that I really liked. All of the chefs before him, at other restaurants, were great and very pleasant, but they all seemed preoccupied with the food that they had left in the kitchen. This one chef was different – when he came to our table he took out a pad of paper and wrote down what my dietary needs were as we talked to him. Maybe it was his manner, or his attention to detail, but somehow he made me feel like I was his one and only concern at the time.

This experience confirmed in my mind something I learned from my experiences at Children’s Hospital in Cincinnati; it is the little things that matter; it is the little things that make or break a patient’s experience.

Last summer, at the same time as our family vacation this summer, I was in the hospital getting ready for resection surgery. One of the little things that I remember the most from that “vacation” was meeting the surgeon for the first time. My surgeon had a New York Yankees lanyard with his ID on it. I instantly could relate with him because I had something outside of my medical care that I could talk to him about – not that I am a Yankees fan; I am a Toronto Blue Jays fan so that made the conversations even more interesting. It is that personal touch, that relating to the person that was caring for me, that made a difference.

In a similar experience last year, I have a friend who on his first appointment when he met his new doctor, talked to that new doctor about Harry Potter for half of his appointment.  The  doctor was wearing a Gryffindor lanyard. I know another lanyard story; I am convinced lanyards are magical! The magic is in the conversation they bring.

It is the little things that count.  From food to lanyards or chefs to doctors ...  it is these little things that patients remember and make all the difference in the world to the overall experience.  Whether you are going through the trauma of a hospital stay or the trauma of an IBD patient trying to eat out, it is these simple things that make the patient see the caregiver as a person; someone that cares about you and even a little less scary.

Remission. Hearing the word always made me think of cancer and the hope that goes along with achieving remission. Having served as a volunteer and a member of the board of directors for a cancer non-profit organization for seven years, I shared many moments of joy with many cancer survivors for having achieved remission, the "R" word. During treatment it is the hope, but often not spoken of until you finally get that word from your medical team. Little did I know that the "R" word would enter my world in the way that it did - through my daughter's IBD diagnosis in August of 2010 at the age of 9. Upon hearing that it was Ulcerative Colitis ravaging her body, consuming her childhood, and sapping her energetic persona I became a mother living for the "R" - remission.

Policing Your brASS

Guilty.  Guilty as charged.  Big time.  This goes back a long way, too.

I don’t clean up after myself well.

As we’ve established in previous posts, I have no colon.  But I have been poop-challenged for almost 40 years.  Sure, I had some periods of UC remission where I, arguably, pooped like regular boys and girls.

But I also had (and continue to have) long stretches of loose stools.  And, of course, there were the loose and bloody stools.

[Brief aside:  I try to tell patients and their families that bleeding in UC can be the most benign symptom.    And it’s easy to say that one drop of blood can make the whole bowl red and that you shouldn’t overreact .  From first-hand experience, though, I also know how terrifying it is to see blood in your bowl or, worse, in your child’s bowl.  End of brief aside.]

I’m a huge NCIS fan.  That’s another story, but it’s from NCIS that I learned the phrase, “policing your brass.”  It’s meant to refer to picking up your spent shell casings after shooting a gun or rifle.  Being a good housekeeper, if you will.

“Policing your brASS” refers to cleaning up after yourself following a messy poo.

As Sela says, “nobody wants to sit on your $hit.”

I have to say that I was better about this when I used to bleed.  I think this was because I made it too easy for the poo detectives back then.

Poo Detective:  Can you describe the scene?

Poo Witness:  There were red, watery dots all over the seat and bowl.

Poo Detective:  Did you say “red”?

Poo Witness:  Yes sir.

Poo Detective:  He’s at it again.  Han.

Poo Witness:  How can you be sure?

Poo Detective:  Well, we’ll go through the registry of bloody pooers in the neighborhood, but Han had the means and opportunity.  And he works on this floor.  We’re pretty sure we have our man.

This is not a strength of mine.  My performance at Alcatraz Bathrooms is much, much better than my performance on my home field.

Not to make excuses, but the after hours poos present my biggest challenge.  Why?  Well, my vision is about 20-6000, so I don’t see too well without glasses or contacts.  Following a nocturnal trip to the loo, I may police my brASS and think that everything is hunky dory.

But the killer always makes a mistake, doesn’t he?  He fired four shots but only remembered three.  He picked up three spent casings and missed the fourth.  He’s caught, red (or brown) handed.

Please, please be courteous to the next user of toilet, whether it’s a family member, a co-worker, a friend or a stranger.  Again, as Sela says, “nobody wants to sit on your $hit.”

“But I took my medicine!” I hear this down the hall from a patient room.  I’ve heard this enough times in my work as a psychologist that I immediately begin to assume what is going on in the room.  In my mind I imagine the child down the hall is probably being told that labs came back showing little to no medication in her system, even though she’s on a considerable dose for a serious problem.  She has been admitted and she’s in bad shape; in lots of pain.  The medicine they wanted her to take could help her body get better, or at least keep her problem from getting worse.  And she is adamant she has been taking it, perhaps also implying she has been taking it every time she was supposed to take it.  And… the doctor or nurse talking to her doesn’t think she is being completely honest.  They shake their heads:  “But honey, numbers don’t lie.” She then looks to her mother for support but finds, instead, a disapproving look.

I could be wrong about my assumption (my daughters might say I am wrong more than I should be!). Nevertheless, this issue of medical non-adherence –failing to follow the medication, diet and lifestyle recommendations of a physician or medical team for a particular medical problem- is far more common than I wish it were.

I think, in moments like this, that a pediatric patient might see herself in a boat, all alone, supposedly in charge of making sure her boat doesn’t capsize, or sink, or head into a storm.  And that just isn’t fair.  There might be room in the boat for her mother and father, but if they are there, I am guessing there are times they are doing their own jobs on this boat.  There might even be a physician or a nurse; at times a psychologist might even hop aboard.  However, to the child, with the oars in her hands, she might be the only one feeling the full weight of responsibility for medical adherence.  And that is the heart of the problem.  She can’t do it alone.

I argue our young patients need to have boats that are big enough for a whole crew of supporters who are responsible for helping make sure they take all the medications; follow all the rules. In fact, I argue that those patients need not just to see, but to feel, that there are co-captains prepared to take the wheel, turn the oars, ready the sails, whatever is needed, because they are partners in the success of the boat (and the young boat-captain!). Yes, they need to know they are steering their own boat, and yes, as they get closer to adulthood they need to be able to do more and more of this on their own.  But how many children are ready to be captains for such a big job – keeping their bodies going when they have medical problems that are far greater than pimples or bad hair days; when not keeping good track of medications could mean, well, death?  We love our children.  And when I say ‘we’ I mean mothers, fathers, physicians, nurses, dieticians, social workers, pharmacists, psychologists, and many others.  I want us to find better ways to partner with our littlest captains, so they can grow into their jobs successfully, and without so many disapproving looks and avoidable hospital stays.  Who’s with me?

Awesome LOOP blogger alex8799 recently submitted 'Zip Lines, PICC lines and Tofu: Facing the Challenge' as a guest-post on The Gutsy Generation, an initiative by the CCFC YAC (that's code for the Crohn's & Colitis Foundation of Canada Youth Advisory Council).

Alex had also shared this post with us here at LOOP, but instead of just re-posting it I wanted to take the opportunity to send you over to The Gutsy Generation.  It's a great blog!  The contributors are young people, just like Alex, who live with IBD and have decided to share their stories with the world.  They all definitely get two enthusiastic thumbs up from me!

[slideshow]Two and a half months ago, I was in a hospital bed weeping. Surgery hadn’t gone as planned and suddenly the horrific semester I had just overcome seemed to loom before me. My heart felt like it had been split open, my dream from the summer of going to Peru seemed torn apart. Life was unfair and overwhelming and painful.

But if there’s anything I’ve learned, if you wait a few minutes, take in a big breath, and remember who you are, things become a little more possible.

So now, as I sit here writing this, I will try my very best to relay the amazement, wonder, joy, and peace of my recent trip to Peru. Warning: there truly are no words, so whichever I find will not do it justice.

First of all, the people were wonderful. There were ten of us including myself and the group was comfortable and hilarious, comforting and encouraging. We sang songs and joked and had serious times when we related stories of pain and discouragement. It was a group of people who had every reason to be bitter and angry and discontent with the world, but somehow there was so much joy.

We were broken in easily to the challenge that was steeped in front of us. After a couple of days of touring around Cusco, wrinkling noses at the cooked guinea pig, and grinning over adorable Peruvian children, we donned our backpacks (which seemed to get heavier everyday!) and took out our trekking poles. I’ve never been to South America before, but the sheer vastness of mountains and the glaciers standing triumphantly in the background, the laziness of the cows grazing in the fields, the rumbling of the river as it fell over itself - all of these sights and sounds I tried to commit to memory so I would never forget. It was, in a word, beautiful.

There are too many details to try to write down, too many things I will not be able to aptly describe. On the third - and hardest - day, we climbed to the peak (4200 m) to ‘Dead Woman’s Pass’. After climbing the ultimate StairMaster (thank you Incans), I climbed to the top of a big rock with a fellow young trekker. We looked down at the stairs, winding in the distance, saw the Incan irrigation chevrons carved into the landscape, and cheered for the trekkers behind us to make it to the top. There aren’t words - it was gorgeous and glorious and empowering and exciting. We sat there and breathed, inhaling and exhaling, unable to find words to articulate how our hearts were singing.

Even with the chilly nights wrapped in sleeping bags and the midnight journey to the bathroom tent with only a headlight, the trek came to an end way, way, way too fast. We reached the Sun Gate and took countless pictures, so proud of one another and the journey we had completed. I looked down at Machu Picchu, the postcard picture I had seen online so many times, and couldn’t mesh the real and surreal elements of the moment. I had made it. I was on the top of the world. And as happy and proud as I was, my heart ached that the trip was nearing an end and I would be leaving the people I had come to care about so dearly.

Besides crying as I left Peru, the most vivid memory I have at the end of the trip was the bus ride from the train back to Cusco. It was dark and everyone was tired and plugged into their iPods or falling asleep. The bus drove along, the lights of the surrounding towns twinkling. I was listening to my music, grinning at the joy of the occasional person who would break out into song or the laughter that would warm the bus. I closed my eyes so tight and promised to remember what it felt like to be there and wished the bus ride would last forever. If I close my eyes now and listen to my heartbeat I can still feel the sway of the bus and the hum of laughter and the peace that blanketed us all.

It was the best experience of my life, though I wish I could say that more eloquently. I am so happy to have been healthy enough to go, but now sad that it is over. But I know that there will be new challenges, new mountains, and new friends.

And when I get nostalgic and wish I was back on the trail, hiking steps and laughing, I’ll look at my pictures and smile, and close my eyes and be back in the bus, happy and whole and healthy.

Jennie

Any of you remember a specifically positive or negative experience with an Alcatraz Bathroom?

I remember a couple.  I can go back years—all the way to that gas station bathroom in Tennessee in the summer of 1976, after my dad almost got a speeding ticket on Interstate 75 South for rushing his colitis son to the nearest exit. I was all of NINE years old when I used it, and I can’t give you many details, but if it was 35+ years ago and I still now remember that it was bad, well, it must have been bad.

DATELINE: Hershey, PA, Spring 2003. (How funny is it that this took place in HERSHEY, PA? I mean, you know, with all of the “Hershey squirt” jokes and such? This is just a coincidence; I promise).

Hershey Park, to be more precise. I gotta go. I REALLY gotta go. My no-colon just can’t stand it any more.

Hershey Park must have been built in the 1930s or something, because there just weren't a lot of bathrooms available. After an intense search, I FINALLY found a bathroom. I entered. And I thought:  WHO DOES THIS? WHO DOES THIS?  Yes, I thought in all caps.

Who is the guy who doesn’t LIFT the toilet seat to pee? REALLY?  Why do I remember THIS particular incident, THIS particular Alcatraz Bathroom? Because it was like some guy took a pee hose and sprayed the whole stall!  It’s like he PLANNED to render the bathroom unusable for any civilized man or beast.

Now, I can make do with almost any Alcatraz Bathroom. (I can’t stop laughing. I’ve been sitting on that one for MONTHS. Get it? “Sitting on that one”? “I can make DO(O)!” I didn’t know when I’d drop that one on you. Get it? “DROP THAT ONE ON YOU!” Should have said, “DROP THAT TWO ON YOU!” Get it? I mean, where can you go for this kind of highbrow humor?)

But I absolutely could NOT make do(o) with this Alcatraz Bathroom. I’m usually flexible. A drop of pee here, a poo remnant on the toilet seat there. I can wipe and clean, I can double or triple layer the toilet seat cover/toilet paper. I’ve got options, you know? But I had nowhere to go this time.

Sela couldn’t believe that I wouldn’t use the toilet. My recollection is that she tried to sell me some kind of explanation that “pee is sterile” and that I should “make do(o).” She was, of course, aware of (had been taken along for) my mad search for a bathroom.

I DON’T CARE IF SOMEBODY ELSE’S PEE IS THE CLEANEST, MOST STERILE, HEALTHIEST LIQUID IN THE UNIVERSE.  I DON'T CARE IF YOU TELL ME THAT I COULD DRINK IT!  I AIN’T SITTING ON IT, AND I DEFINITELY AIN'T DRINKING IT. Sorry, that’s just how I roll.

And thus ends the story of one of the WORST Alcatraz Bathroom experiences of my life.

In the end, I continued to hold it. I can’t recall where I finally relieved myself—whether it was in another bathroom at Hershey Park, at an Alcatraz Bathroom on the way to our next destination, or in my pants. OK, I know it wasn’t in my pants. THAT, I’d remember.  Like that time in Israel. . .but that’s another story for another day.

Years ago, a doctor asked me to draw a pie-chart and shade in how much Crohn’s affected my life. I remember hesitating and then looked up and said it was impossible. There was no way to decide where my life and my Crohn’s didn’t walk hand-in-hand, they were as intertwined as written words on paper. Alone it might just be blank pages and a pen, but together they make a story.

I had just turned 12 when I was diagnosed with Crohn’s disease. This is what I remember most about that time: being scared, confused, alone, angry, lost, lonely, and feeling robbed. I didn’t know what Crohn’s was before my diagnosis and thought that it meant taking a pill and not eating broccoli. I did not want to be sick, in fact I refused it, and wished that I could rewind the past few months and never be diagnosed.

But a lot can happen in 9 years, and indeed a lot has happened. I tried every medication to little avail, spent copious amounts of time in the hospital away from school and friends, dealt with people’s ignorance about bowel disease, and acquired a medical vocabulary. I’ve lost count of the PICC scars on my arms and the medications I took. I have boxes of medical ID bracelets and needle caps and finger puppets (the reward for a blood-draw at my pediatric hospital). And even though it’s an enviable collection, what I am most proud of is being involved in awareness and advocacy through Crohn’s and Colitis Foundation of Canada (CCFC) and our Youth Advisory Council (YAC) here.

When I was applying to college, people who didn’t know me well would timidly warn me, “Oh you should stay at home for school. You’re sick”. I absolutely hate being told what I cannot do, because no one else can tell me what I’m incapable of. I left Nova Scotia for Boston University, where I’ll be a senior in the fall. I’m studying Psychology and plan to apply for a clinical PhD in pediatric health psychology in the winter. It’s a mouthful, but I want to be a pediatric psychologist for chronically ill children.

After my freshman year at BU, I became extremely sick during the summer. I had spent so long feeling unwell that it seemed ordinary to me. My GI scoped me and saw the inflammation in my colon was severe and the bowel had begun to die. I was so relieved to hear the news because it meant that something drastic would finally be done. I chose to have a proctocolectomy (aka everything after the small intestine is gone) and a permanent ileostomy. I love my bag so very much, it was the right choice for me and my disease, and wouldn’t trade it for the world’s best working colon.

I think that one of the hardest parts about living with IBD is understanding that it’s chronic. I don’t think we ever have a solid understanding of the word since there is virtually nothing in our lives that is stays the same forever. We grow, we move away, we meet new friends, we watch new television shows. Even though it’s been almost a decade of being an IBDer, there are still mornings when I remember my ostomy and can’t believe what’s happened to my body.

I was recently in Peru to hike Machu Picchu to raise awareness about IBD and ostomies. People asked me if it were possible go back and take away my Crohn’s if I would. I said no, because I wouldn’t trade the clarity that living with IBD has given me on my life and what I want to do for anything. I am not my IBD, I’m just a girl who likes to run, loves Patrick Dempsey, and could probably win a banana-eating contest. And everyday I do my best to live by the words I wrote to myself after being diagnosed, “You hope to rise above your disease and excel”.

Jennie