ImproveCareNow Parents


The "R" word

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

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.”


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?”


Parenting sick kids

[EDITOR'S NOTE: Learn more about the parent behind this story here.]

Parenting a child with any chronic illness is, to put it lightly, a challenge.

I strongly believe that IBD is “different,” but that’s a topic for another day.

Other parenting topics that we will save for another day include advocating for your child with regard to healthcare and (key the “Schoolhouse Rock” music) Knowledge is Power!

In fact, today we’re not going to focus on your child or children with IBD at all.  We’re going to concentrate on your other children.  So, this post may not apply to you at all, and if it doesn’t, move along, move along, there’s nothing to see here.

When I speak to parents, one of my messages is, “We tend to treat our kids with IBD differently, don’t we?  Maybe we let them out of chores.  Maybe we let them do things that we don’t let their siblings do.  Right?”

[At this point, every parent’s head is bobbling up and down.]

Then I say, “It’s OK.  It’s natural.  And there’s nothing you can do about it because you’re always going to have a tendency to want your sick child to get the most out of the time that he/she feels well.  But, remember that you have other children.”

Oh, yeah.

This is far from an exact science, and specific family dynamics will affect how you navigate through this part of your challenge.  But here are a couple of tips.

First and foremost, you must remember and be sensitive to the fact that each of your kids are dealing with all of the same every day issues that all kids deal with, and you need to be there for them as best you can.  While it may be the last thing you want to discuss and you may deem it “unimportant” given that you are awaiting medical test results, your daughter’s bad experience on the bus merits your attention.

Second, you must let your other children, in an age appropriate manner, know what is going on.  I was 8 when I was diagnosed with UC, and my sister, KK, was then 6.  KK recently confided in me that she thought I was dying.  My parents never had the, “Han’s tummy is sick, but he’s going to get better” discussion with her.  My parents needed to understand that her life was turned every bit as upside down as everybody else's by my illness.

Chores around the house are also tough.  It’s not like Sela and I ask our kids to go down to the creek with a washboard and scrub their clothes, but setting and clearing the table, putting stuff away, taking out garbage, caring for (no codename needed) Izzy the dog—those are things we expect from our kids.

Here’s the tightrope.  We’re not going to ask Jed or Tink to do any of these things when they don’t feel well enough to do them.  But we also don’t want our healthy kids to carry more of a share of the load.  The last thing we want is for Elly Mae to be “mad” at or “resent” Jed or Tink for being sick.

I remember a discussion that I had with Tinkerbell when Jedediah was at his sickest—in and out of the hospital.  Tink was 14, and Jed was 12.  I went to speak to Tink and I said, “Don’t think for a minute that your mom and I don’t recognize that you’re getting short shrift.  We absolutely recognize that we haven’t been there for you as much as we would have liked, and we’ll make it up to you.”

Tink’s response still brings tears to my eyes.  “Dad, it’s OK, Jed needs you.”

I figured we must be doing something right.  But most of all, it was just another example of Tink’s awesomeness.


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