LOOP Blog

“But I took my medicine!”

I hear this down the hall from a patient room. I’ve heard this so many 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.

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

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.

For 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]

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?”

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.

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.