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A sweet review

In his recent post - Vermont Children’s Hits the “Sweet Spot” for Quality Medical Care - on  Fletcher Allen's Health Care Blog, Nathaniel White had this to say:

 

"It is my belief that the “sweet spot” for quality medical care lies somewhere between the laboratory and the bedside. Those truly talented healthcare providers are those who are able to blend the ever-evolving science of medicine with the art of taking care of patients."

 

Nathaniel White is a medical assistant in Pediatric Gastroenterology at the Vermont Children's Hospital at Fletcher Allen - one of 36 participating ImproveCareNow centers.


The Plan (according to Alex)

alex8799For a teenager with IBD, life has its “ups” and “downs” like it does for everyone else, but I bet the “ups” are better for me than others – or maybe I just appreciate them more. With awesome “ups” … the “downs” become a little more tolerable and no matter what, the “ups” and “downs” and how you handle them is what shapes your life.  Recently I had a big “up” - not a big turning point in my life, but it certainly reaffirmed a couple of my life ambitions - the first being to set goals and the second, to make my mark on the world.

 

The second to last weekend in June, I spent four days at the Hugh O’Brien Leadership seminar (HOBY). It was a great experience, a lot of fun; I met new friends, and learned the principles of good leadership. Leadership is important to a community, to an organization, to me … to everything really. At the HOBY seminar, we learned about the different areas where leadership can be applied and different elements that define a good leader. HOBY taught me a thing or two about my own leadership development – they suggested in the seminar that in order to exemplify good personal leadership you must first know yourself.

 

It took me some time to realize who I was as a person and what I have come to know as my goal in life.  Maybe this is just part of growing up, but I have to wonder if the ups and downs of having Crohn’s disease have not played a part in that process.  Over the past several years, things have become very clear for me - my goal in life is to help others - using my experience and my disease to help others through their “downs”. For the longest time, I denied the fact that I had Crohn’s; I did not want to be different and just wanted to fit in – I guess I was in denial. However, over the past few years, with the support of friends and family, living with Crohn’s has helped me discover myself and I have turned what some might consider my weakness, into my strength.

 

My goal in life is to become a gastroenterologist and to use my experience as a patient to better my patients’ experiences. My life ambition includes two important ideas that we covered in the HOBY seminar last weekend. The first is to always make SMART goals. Without goals, life has no direction and someone without goals will very often not accomplish anything. The second of the two topics we discussed at HOBY was the more important one in my mind - that is to make your mark on the world by changing and inspiring others lives.

 

My plan: to touch the lives of as many patients as I can in my lifetime.

 

[Editors note: read more posts by alex8799 in his archive]


In Which We Discuss Alcatraz Bathroom Sounds

This entry was inspired by a conversation that I had with Tinkerbell and Jedediah.  Tink and I had just picked up Jedediah from a party.

 

Tinkerbell (a loyal blog reader) and I were discussing the Alcatraz Bathroom series, and Tinkerbell said, “You ought to do one on Alcatraz Bathroom SOUNDS.”   [Jedediah claims that this was HIS idea, but I digress.]

 

“What do you mean,” I ask?

 

We discussed what she meant. Tinkerbell was referring to when an intestinally-challenged person is not “alone” while going poo.

 

We’re not like you “other people.” You’d call yourselves “normal bowel movers,” but your normal is not our normal. We often have diarrhea or small poop pellets.  You don’t know how much you miss pooping logs until you can’t do it anymore.

 

So, Tinkerbell, Jedediah and I started discussing our various methods for addressing the embarrassing sound issue. As with other posts in this series, we will separate out single-user bathrooms (like at a friend’s house where sound can emanate outward) from multi-user bathrooms (where you are literally NOT ALONE). We welcome comments with suggestions for other approaches to this difficult problem.

 

Single-User Bathrooms:

 

Preferred Method:  Ceiling fan. Repeat after me: “There’s no shame in using the ceiling fan.” The only downside is that someone may be wondering “what you’re doing in there,” but if available, this white noise approach of drowning out the sound is the best.

 

Alternate method 1:  Controlled discharge (which may just not be possible given your condition). Well timed and spaced plops or splashes work well because it’s not like somebody is standing outside the bathroom while you’re doing your business. At best, they’ll catch a plop or a splash here or there.

 

Alternate method 2:  Simultaneous poop ‘n flush. This method can be effective also at minimizing odor concerns. Flush drowns out poopy sounds, and I have found (through much field testing, with confirmation by the home office in Slippery Rock, PA) that the quicker you dispose of your feces, the less the bathroom will smell afterwards.

 

Caveat:  Of course, single-user public bathrooms (like airplanes and gas stations) are no holds barred. You can pretty much do it however you want in there.

 

Multi-User Bathrooms:

 

Preferred Method: Hurry up or wait. If you’re alone when you first ascend the throne, do your business ASAP. If you’re not, and if you can wait, wait. The risk you run is that there will be a continuous flow of people in and out. Unless you’re pressed for time, though, it’s not like anybody knows you’re the one in the stall.

 

Alternate Method 1: Controlled camouflage. Discharge during electric hand drying is best. While you may not be aware, Crohn’s patient Albert Schultz invented the electric hand dryer, famously noting at the press conference that “It won’t dry your hands very well, but the white noise is magnificent.” You can also time your discharge to coincide with the flushing of another toilet or, as long as noisy enough, the running of the faucet.  I find that the opening of the door does not get the job done.

 

Alternate Method 2:  Simultaneous poop ‘n flush. This was discussed above but is not a preferred method for multi-user bathrooms. It’s just suspicious. The whole point is NOT to bring attention to your poop, and this method FOCUSES everybody on what’s happenin’ in your stall.

 

Not to get you too giddy with excitement, but our next installment will tackle “Toilet Seat Covers—Friend or Foe?”


In Which We Introduce a Recurring Theme of Future Posts

Though I engage in jocularity on all topics related to poo, please don’t lose sight of the fact that I’m trying to, literally, take the subject of poo out of the bathroom and into the kitchen (where families can discuss Crohn’s disease and ulcerative colitis while enjoying dinner).

 

Below, I am going to reveal a theme that I will revisit (over and over and over again, like a joke that just keeps repeating long after it’s no longer funny) in the future on this blog.

 

I’m dedicating this installment to THE BIG REVEAL of this theme.  Which means that there will be virtually no content below. Seriously. Almost none. There’s no “tip,” no “advice,” no imparted knowledge whatsoever.

 

In fact, having read the rest of this post, I strongly suggest you stop reading right now.  What follows is excruciatingly boring.  Consider yourself warned.

 

I was recently inspired where I do some of my best thinking--on the toilet.  I spend gads of time there. (Brief tangent/confession:  I don’t think that this is kosher, but I generally opt for the handicapped stall. There’s just more room in there; I feel more comfortable. My feeling is that I have no colon, and who is more handicapped in a BATHROOM than someone with no colon?  And I obviously feel the same way about people who have IBD.  Don’t be shy.  Use the handicapped stall.  You are poo-challenged.  Take advantage.)

 

Those of us with no colons or IBD spend WAY TOO MUCH TIME in bathrooms. Lots of away games. And there are lots of “away” places, right? Work. Friend’s houses. Gas stations. Restaurants. Outhouses. I also throw in dorms and fraternity houses.

 

Each of these "away" places presents dilemmas.  You can tailor your own loo to your whims and desires, and you can use (or misuse) it in your discretion  "Away" bathrooms?  I wanted a term to encompass these for future blog purposes.

 

These are not all “public bathrooms.” A “public bathroom,” by definition, is open to the public. Which is not the case with, for example, a friend’s bathroom.

 

Likewise, these are not all “communal bathrooms.” Now, I’m not 100% sure what a communal bathroom is, but when I think “communal,” I think “commune” and then “communism” and if there’s one thing that a bathroom is NOT, it’s communist.

 

In fact, I couldn’t think of an existing term that worked, so I set off to coin my own.  After unimaginable inner turmoil, I came upon an epiphany of sheer and utter brilliance (if I do say so myself, and I do):

 

What do each of these bathrooms share?

 

They share the fact that you (as the pooper) HAVE NOT SELECTED THE TOILET PAPER! You are literally stuck with whatever is there (unless you BYO, and take it from personal experience, the stares probably aren’t worth it).

 

In considering what to call these, I actually went back to “communal bathroom,” seeing as not being able to select your own toilet paper did, all of a sudden, sound communist to me. But the term “communist” has unnecessarily negative (for these purposes) connotations, so I again discarded the communists.

 

Finally, I just said the heck with it. I’m making something up. I’m calling them Alcatraz Bathrooms because, well, “Alcatraz Bathrooms” sounded kind of cool to me. Plus, Alcatraz is surrounded by water. Which is important for no reason that I can see.

 

So, future posts will take up our groundbreaking series on Alcatraz Bathrooms. We’ll have posts on AT LEAST the following six topics (in no particular order): toilet paper, etiquette, toilet seat covers (friend or foe?), stall/room size, décor and stench control.

 

I hope that you’ve learned absolutely nothing. Because I certainly have.


Open Your Eyes

In my last post, I mentioned the isolation I felt after diagnosis. I kept my disease and my emotions private. At the time, I didn’t think this was my choice. I felt bullied into silence by my disease. It was so embarrassing. If I had to be sick, why couldn’t I have a normal disease? I thought everyone on the Internet was a weirdo (who would be crazy enough to admit they had IBD online!?) and just wished there was someone nearby who knew UC stood for more than “you see.” I didn’t only feel alone, I was so remarkably confident that I was alone. In retrospect, I wasn’t really trying. I didn’t consider Camp Oasis, or as I preferred to mockingly call it, Camp Whiny Sick Kid (stop, don't listen to my bitter little self, not at all accurate!). I wouldn’t have admitted it, but I knew there were support groups out there. It was my choice not to look into them.

In 2010, I was a Junior in high school, getting over my second flare. I was still as stubborn as my immune system. I wouldn’t have mentioned my disease at school in a million years. When Crohn’s disease came up in French class, it wasn’t from my lips - which made it all the more surprising!

It turns out that all along, a boy just a year older than myself at school had Crohn’s. His family was very active in the IBD community actually. I just never opened my eyes wide enough to realize. I passed him in the hallway at least twice a day. I didn’t speak up that day, though I could see my teacher who knew about my IBD eyeing me from her desk. I wasn’t ready, but this was a defining moment for me. I couldn’t believe it! I ran through the "what if’s" in my mind. How could I have missed this in a school of only 400 students? Would the past two years have sucked less if I had spoken out and connected with him?

Here’s what’s even more surprising, though: I still didn’t reach out to him. Just a few months ago, he reached out to me on Facebook, and I pretended I hadn’t known. I didn’t make the first move. Why?

Taking the first step is scary. Admitting to others that you have a disease is difficult because it forces you to admit your disease to yourself. I ran for two years - because I was scared of a label. I didn’t realize yet that I could choose my label. By not coming to terms with my disease, I was letting it label me - as a girl controlled by her disease. Now, I label my disease - as something that may challenge but will not trap me again.

Now that I’m actively involved in the IBD community, I love meeting other teens with UC and Crohn’s. I love sharing experiences, and I love how we often inspire each other. I wish I hadn’t waited so long to take that first step.

That first step is scary, but believe me, it’s not nearly as scary as fighting IBD alone.

Open your eyes. Look around you. Someone to understand how you feel might be closer than you think. You won’t know until you try.


It's OK to say it sucks!

Remember Alex? Read Alex's first post to LOOP here.

 

My life in one word (or acronym)…. IBD. I was diagnosed with Crohn’s disease at age nine. I am currently a sophomore at Milford High School and 16 years old. My life with Crohn’s disease was summed up one day by my school nurse. That day I came in to the nurse’s office and I broke down. I was in the middle of a month or so – what seemed like an endless period of having stomach cramps for no apparent reason. I started crying and in that conversation the nurse had this to say about IBD, “You’re allowed to say it sucks.” I thought that summed up the low points of my life and other patients’ lives with Crohn’s disease pretty well.

 

In my seven years with Crohn’s, I have gone through all the medications used to treat kids and have not found one that works. I have had several surgeries, the biggest of which was a resection of my ilium this past August. I have definitely had my ups and downs. But doesn’t everybody?

 

Even through the lowest downs, there is always an up; the silver lining that lights up your day. For me, I found that silver lining through Crohn’s disease. I guess Kelly Clarkson doesn’t lie when she says “What doesn’t kill you makes you stronger.” My silver lining is advocacy for a better patient experience. I get my inspiration, my optimism and my might from the patients that I see who have thrived under the weight of diseases worse than mine.

 

Crohn’s has turned into my life and my strength. It is the reason I am down, but it is also the reason I get right back up again. I have made new friends from Crohn’s. Through Crohn’s disease, I have learned who I can count on, to support me when I fall. It has introduced me to some of the most wonderful patients and people I will ever know. I have met patients facing bigger obstacles than me and living their lives giving back to others; living like everyday could be their last. Through Crohn’s disease, I have found my future and my life goal.

 

Life will always be full of obstacles but the way you deal with them is what determines whether the roadblock will be turned to a strength or a weakness.

 

Crohn’s is my life and my strength.


Health IT at the White House

On June 19th, I was honored to represent the ImproveCareNow network and other learning networks at a White House meeting on how Health Information Technology (health IT or HIT) can improve health outcomes.

Present were about 75 leaders from institutions and practices that have advanced the use of health IT to improve care and outcomes.  In his opening remarks, Farzad Mostashari, MD, Director of the Office of the National Coordinator for Health (ONC) IT made a number of important points:

    • The number of offices using electronic medical records (EMRs) has doubled and about half (2,400) hospitals in the US now have EMRs

 

    • Increasing the use of health IT faces many challenges: workforce training, data sharing, privacy and security.  The opportunity is to move beyond simply implementing new technology to using health IT to improve care and outcomes.  ONC is particularly interested in how to turn data collection through electronic health records into a quality improvement program and so invited groups like ours.

 

    • What’s unique about HIT is how fast it can adapt and change in response to needs and feedback

 

    • And it’s important to harness the knowledge within the field.  For me, this was the most important message of the day and one that’s right in line with what we’re doing in the ImproveCareNow Network and C3N Project.  It’s our responsibility to share the knowledge of all – patients, clinicians, and researchers to make health care better.  If patients and clinicians don’t speak up and share what they know, patients will suffer by not getting the best care



During the conference participants shared numerous examples of how HIT and the Affordable Care Act are working to make care better, more efficient and cheaper

    • HIT helps to engage patients in collaboration in addressing their problems.  “You use it in collaboration with patients to guide their care.” Mike Zeroukian, MD

 

    • Charles Kennedy, MD Aetna.  “We will increasingly see health insurers pay for health information exchange and better use of data.”



Participants also noted the many limitations of current technologies including:

    • Ways for patients to share information among providers

 

    • The need for greater public awareness about individual vendors’ willingness and action in making data sharing possible across systems

 

    • The need for public usability ratings for EMRs (like Consumer Reports) to spawn greater competition in meeting the needs of practicing clinicians

 

    • The need for EMR vendors need to learn about how to support QI



Overall, it was clear that administration officials were listening and that much excellent work is taking place in the field.  It’s a pleasure to be able to represent the work of ImproveCareNow and the C3N Project, which is one of several data and knowledge sharing networks for kids with chronic illness.  Networks such as ours will be the way of the HIT future.


I've been lucky.

It first occurred to me while organizing the Big Blue Box, a jumbled collection of boxes, bottles, and doctors’ notes. A friend walked into my dorm room as I transferred that week’s supply of pills into my backpack. She already understood the basics of IBD, but I took the opportunity to introduce her to my crew of prescription superheroes.

 

I was diagnosed with Ulcerative Colitis in 2008 at fourteen. It took just one month. I got lucky. I woke up from my first set of scopes to find out I’d won a ride to the inpatient floor. I was told to expect at least a week-long sleepover. Instead, my body ate up the Prednisone like candy, and I managed to break out after three days. Lucky for the second time.

 

My first superhero was Asacol. It gave me a sweet two months of remission. I flared again in 2009. This was my worst IBD flare to date, no doubt, but again I got lucky. I avoided an inpatient stay. I responded to Prednisone again. The rash on my skin that threatened to take my beloved Asacol away turned out to be a benign condition. I won’t deny the facts: the pain was unbearable at times, I felt very isolated in school, and I re-flared halfway through my Prednisone taper. I still think myself lucky.

 

I met a new superhero: 6mp. My parents and I feared it at first. It had the dreaded C word attached to its reputation. It came with an abundance of blood tests and risks. It also saved my colon. I’ve had very few side effects, and none of them significant. I expected nausea or worse to come out and, bam, hit me in the face, but they didn’t. Remission finally stuck around. I’ve had no significant disease activity since 2009.

 

Through it all, IBD was my secret. Poop isn’t really a comfortable topic of conversation in high school. I hated how my disease had affected my high school social life. I decided I needed to reach an emotional remission to match my physical remission: I would control how my disease affected my life, not vice versa. I joined an online support group. I’ve met and bonded with other teens with IBD. I’m a member of the ImproveCareNow patient advisory council. This year, I’ll be a volunteer counselor at CCFA Camp Oasis. I’ve found my voice, or at least I’m trying.

 

I have friends without colons. I have friends that dream of remission. I have friends that have dietary restrictions I don’t have or feeding tubes. I don’t pity them, but I do consider myself lucky. Every patient’s story is different, and none of us chose our story ahead of time. We didn’t get to preview our particular path through the disease and approve or veto it. I don’t know why my path has been less bumpy than my friends’. It makes me sad. If I could, I would share my remission with them. I can’t explain why things are the way they are, so I just call myself lucky.

 

That day in my dorm room with the Big Blue Box, all of this ran through my mind.

 

“This just makes me feel so bad for you,” she said finally.

 

The story rushed through my head from the beginning - where I started, how far I’ve come. My story is my own, but my passion for sharing it is about so much more than me. Neither of us spoke for a few seconds.

 

“I’m okay,” I say. It’s true. I’ve been lucky.


How I live with IBD

Optimism is a wonderful thing that the world needs to have more of. Dictionary.com defines optimism as “a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome” or “the belief that good ultimately predominates over evil in the world.” Optimism is what pulls a person through adversity; gives a person hope; and makes patients heroes that serve as role models for other patients.

 

My six-year experience with Crohn’s Disease has included the bottom up approach in finding medications and without all that much success; hospitalizations; resection surgeries; alternative ways of finding nutrition, and lots of pain. Some may think that it’s hard to be optimistic with all of this, but I have two choices.  I guess I could wallow in self-pity or face it head on, and try to stay optimistic.  The latter is my choice; I think a better path to follow and it sure makes it easier to keep up the fight.

 

Some of my optimism is natural or part of my personality I guess.  Part of it is telling myself that I can beat this thing and that maybe someday they will find a cure; in fact maybe I will be a Doctor someday and be part of that research.  Friends and family certainly help, and maybe the odd distraction (like music, or a good movie …).  For the most part I guess I am optimistic because I refuse to give up hope. I believe in staying strong.  In my opinion, keep looking beyond the day-to-day challenges and hoping tomorrow will be a bit better. Without hope, there is no way of getting through the struggle.

 

I also get some of my optimism from others; specifically from other patients.  Seeing what others go through makes my battle look small. These patients serve as my heroes and role models – probably because I see what they are going through and certainly can appreciate it when I compare their condition to mine. The biggest hero in my life today does not have IBD; she has Cystic Fibrosis. She has had to put university on hold while she waits for a double lung transplant. She goes in and out of the hospital for weeks at a time and never gives up hope. She is optimistic and in the face of hard times she devotes her time to other patients. What is inspiring is her ongoing optimism; someday, I wish that others would look at me and think the same thing – that good ultimately predominates over evil in the world.


Story of Self | Jill Plevinsky

Jill Plevinsky Jill Plevinsky | Patient Advisory Council Chair

I was diagnosed with Crohn’s disease at age 7 and have grown up to become both personally and professionally invested in the pediatric inflammatory bowel disease (IBD) population. Through my interest in improving the lives of these patients and their families, I became involved with the C3N Project and ImproveCareNow primarily as the founding chair of the Patient Advisory Council, which serves the initiatives of both projects.

 

I currently live in Cambridge, MA having recently earned my M.A. in child development from Tufts University. As I continue my collaborative work with the C3N Project and ImproveCareNow, I hope to eventually earn my PhD in clinical psychology and continue research and program development efforts that will help improve the accessibility of social support and overall health-related quality of life for all patients with IBD. I have a special interest in utilizing social technologies and social media platforms to do so because my own avid use of these tools has helped me to broaden my own patient network beyond friends I had met through experiences earlier on in life through pediatric support groups and Camp Oasis.

 

My own experience at these support groups and the Crohn’s and Colitis Foundation of America’s Camp Oasis program initially inspired me to dedicate my higher education and career goals to young patients with IBD, and I hope that my insights and unique perspective from that of a patient and a researcher helps LOOP readers to better understand how ImproveCareNow is striving to make a difference from the top down.


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