ImproveCareNow Ibd


Toilet Seat Covers--Friend or Foe?

I’ve never been a fan of toilet seat covers. This goes back to my earliest experiences. You know the flap that hangs over the ledge in the front that, I guess, is supposed to protect your equipment from the Petri dish of germs in and around the toilet? I always thought that part went in the BACK instead of the FRONT. Why? Because my experiences with poop consistency (consistency as in “firmness” not “uniformity”) and my poop blowing all over the place, I thought that the flap was an attempt to protect the integrity of the bowl. I was also young, naïve and stupid.

 

I generally do not use toilet seat covers. In the nastiest of Alcatraz Bathrooms, my procedures are as follows. First, I wipe the seat with TP. I’m not shy about TP usage for this purpose—this is not a time to show how “green” you are. I must protect my hands. Then, I do one of two things. Either I use or try to use (more on this in a moment) a toilet seat cover, or (most often) I use TP (folded over two or three times, depending on the level of nastiness), over the seat and hanging over the front of the toilet (like the seat cover flap).

 

When I say I “try” to use a toilet seat cover, well, toilet seat covers and the containers that dispense them are fraught with design flaws. I think that, truly, the crappiest (pun intended) of engineers are assigned to crummy projects such as this. About half the time, the seat cover rips just exiting the mounted dispenser. I used to think that I was pulling them out incorrectly, but I follow the up-down, down-up, in-out, out-in whatever instructions, and the thing STILL rips. And what the heck is up with style that is folded over twice, essentially in quarters? I find these on airplanes mostly, and I guess that the design was driven by space limitations. That thing comes out of the dispenser just fine (usually), but unfolding the thing? I have nothing but scraps in my hands.

 

I cannot tell you the number of crumpled toilet seat covers I have thrown away, flushed or (forgive me) left orphaned on the floor behind an Alcatraz Bathroom toilet.

 

The ONLY good news here is that the most abominable of Alcatraz Bathrooms usually have industrial flush capabilities so that stopping up the toilet with all the extra paper (both unwiped TP and seat covers) is not a common occurrence.

 

I have to say, in cleaner Alcatraz Bathrooms, like at a friend’s house or at work, for example, I don’t usually cover the seat. What kills me, though, is that there is ALWAYS, ALWAYS one stray hair on the seat. Without fail. What to do about stray hairs? Listen, it’s a dog-eat-dog world out there, and sometimes you’re wearing Milk Bone underpants (a nod to modern philosopher Norm Peterson). God help me, sometimes I just sit on them. I’m not proud of this, but we all eat plenty of rodent hairs in our food so a stray hair on the seat can’t hurt. Right?

 

And you kids out there, just to be clear—you can’t get pregnant from sitting on a toilet seat. Tinkerbell—you CAN get pregnant by being alone with a boy for over three minutes. That’s why your dad has to come with you on all future dates.


You're Making Me Crazy

 

 

 

 

 

 

Unfortunately, I can remember it like it was yesterday.

 

I was at the hospital - again. Missing school - again. In pain - again. And had just been told I was fine - again. And somewhere in between beginning to cry and trying to re-explain what was going on, the thought occurred to me, am I crazy?

 

They call it the ‘med student syndrome’, but let me tell you, this is particularly contagious in the world of Psychology as well. In fact, a good friend of mine is convinced she has every disorder the professor lectures about until I talk her down from her multiple psychopathologic diagnoses. But I was beginning to feel the same way - I knew I was sick, I knew something was terribly wrong, but the doctors didn’t and they were content with sending me home. So again, I asked myself, am I totally off-the-wall-in-need-of-serious-medication crazy?

 

If living with IBD were a job, that might be one thing. If I could spend all of my time and energy and resources on feeling well and resting and recovering, hey, it might just work. But then there’s that thing called life - with classes and homework and friends and responsibilities and jobs and you name it. Most of my friends living with IBD have their plates piled insanely high with activities, and their reason is that there isn’t a moment to lose. But there’s something to be said for deep breathing and going to bed early and sleeping in. Because when you’re running neck and neck with the road runner and your bowels are misbehaving, it can take of all your energy to get through a minute without thinking about your dysfunctional immune system.

 

How does one ‘keep on keeping on’? Short answer: I have no sweet clue. But this is what I do know about the exhaustive mental fatigue that belabors any IBD patient: sometimes, you need to check out and put your head down and call it a day. Don’t throw in the towel, just turn out the lights and try again tomorrow. At the end of the day, you’re the only person living in your body and you do know what’s going on, medical degree or not. Call a friend, laugh at a joke, eat a really good piece of cake. Do whatever it is that makes you feel like yourself and gives you the strength and courage to get back up.

 

And remember, you’re not crazy. You’re gutsy.

 

Jennie


 

 

 


Since 3rd Grade

Remission is the goal for anyone diagnosed with IBD.  The journey to achieve it, however, is long and winding.  The first milestone for those with IBD is getting the diagnosis (another long and winding road; and a story all unto itself).  The harsh reality of an IBD diagnosis sets in with the words, "there is no cure."  Enough said, onto mission-remission.   The road to remission is marked by things like steroids, 6-MPs,  biologics, surgeries, and more.

 

For our gutsy kid, remission finally came 18 months after diagnosis by starting Remicade infusions.  Deciding to use this drug on our daughter was trying but necessary.  No longer could we bear to see her so fatigued - at times she could not stand - or clinching her stomach in severe pain.  Nor could we allow her to live in fear of bathroom accidents at school.  We did not want her to endure another round of oral steroids or have another hospital stay.  Asacol and Azithioprine only brought brief respite.  What's a parent to do?

 

With Ulcerative Colitis, every day she is sick is another day her colon becomes damaged; each day she is sick increases the chance of her colon needing to be removed.  So Remicade it is.  The agony of the decision and the stress of the first infusion led to exhaustion, for me anyway.  But for our gutsy kid, she gained a new lease on life. The very next day she was energetic and happy.  Out of the blue she exclaimed, "I feel so good!".  I  asked her, "When was the last time you felt this good?" She paused, reflecting deeply for a moment, and responded, "Since 3rd grade."  At this time she was in 6th grade.

 

Our gutsy kid spent three years in pain and lost three years of her young life to suffering - mostly in silence.  Even through her pain and suffering she strove to be all that she could be; competing in equestrian sports, participating in school sports, never complaining and seeking normalcy at all costs.  We are proud of her bravery.  We admire her tenacity.  We are grateful to her medial team for giving her childhood back to her.

 

How many gutsy kids spend too much of their lives suffering in silence because of IBD?  Too many.  Thanks to the ImproveCareNow Network and the participating care centers like ours, more kids can achieve remission sooner and get back to the business of simply being kids.


Miralaughs

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.


Disney and Doctors

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.


In Which We Discuss a Specific Alcatraz Bathroom Experience

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.


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.


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