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 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.

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.

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.

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.