ImproveCareNow Parents


This is it

[Editor's Note: The following post was written for LOOP by a member of the ImproveCareNow Parent Working Group who is also living with Crohn's disease.]

 

After years of planning for transition, this is it. On Monday, my son will borrow a car from a classmate, drive himself 35 miles from his university campus to a Dallas hospital, use valet parking for the first time, check in at an infusion center, and get his Remicade infusion, alone, for the first time. He’ll be far from his Ohio home and far from me. This will be his 53rd infusion; I’ve been there for nearly every one.

 

As usual, he has led me along in this transition. At age 11, when he’d only been diagnosed with Crohn’s disease for a few days, he came to me and said, “Mommy, if I have to have an ostomy that’s OK, because you have one and you can do whatever you want”. I hadn’t even brought up the possibility of surgery but he was already way ahead of me.

 

I’ve tried to do what the transition guides tell us, with mixed results. (Does anyone not get mixed results with teens?) But now that his – our – transitional period is ending, I can see that he was preparing himself all along. He is ready to continue the daily battle on his own, with me in a supporting – rather than guiding – role.

 

So now I’m left to consider what my new post-transition role should be. For the past seven years, I’ve advocated for pediatric IBD patients through our local center and the ImproveCareNow network. There’s still much to do and I’m still motivated to continue, but I’m no longer a parent of a pediatric IBD patient. How much longer will I be able to relate to other parents and feel that they can relate to me? I guess you could say that I’m in transition now. There are no pediatric-to-adult transition programs for the parents, so I suppose I will have to find my own way.


Parental Guidance

Curvy Road SignHaving a child with IBD means many things. It means learning a new language, a new way of living, developing new family dynamics, gaining a new perspective, and seeking, desperately, to get guidance (and to give guidance). Also, it reinforces the notion, "You don't know what you don't know." But, luckily at my child's care center, and across the ImproveCareNow Network in which our care center is a participating member,  guidance is available to parents and guidance is also sought from parents.

 

As I watch my child learn to live with Ulcerative Colitis, I learn too. So, not only does my parental guidance come from her medical team and other parents, it comes from my child as well. She guides me by letting me know I am being overprotective or questioning too much - how did you feel today? what was your level of stomach pain? how many times did you go to the bathroom? - and that sometimes it is best to just leave the UC inquisition for another day. When she is feeling good, she just wants to relish the moment and forget about UC. She guides me to live in the moment as she has learned to do and to appreciate the gift of now.

 

Parents as partners and teachers is important to a child's medical team. Parental guidance is a must when communicating a child's flare pattern as it is as unique as are our children. My daughter's care team relies on me and my husband to guide them through her symptoms and health pattern so they can care for her better and deliver better outcomes.  It cannot be "family-centered" care without the family participating as partners in a child's care.  Doctors cannot provide the best care for IBD kids without parental guidance.

 

As my child is a tween, my parental guidance to her during a medical visit is to model clear communications with her medical team. When my children were very young, I would always say before a doctor's visit, "Doctors are like detectives, and we have to give them the clues to help them solve the mystery."  Teaching our children how to communicate with doctors is a necessity.  With her teen years fast approaching and college around the corner (in my mind anyway), I must use my parental guidance to prepare my daughter for life-long medical care without me. I must model the behavior she needs to learn to do life with UC on her own, someday.

 

Even though my daughter is only a tween, her transition to being able to care for herself must begin now.  While I want to be by her side through her IBD journey forever, the reality is I cannot do that.  So I must not fail her by not preparing her or guiding her toward this kind of independence. We are very fortunate, our care center has a formal transition program from pediatric to adult GI care.  It  is just this type of guidance that I need to receive from them to do this right.

 

ImproveCareNow (ICN) made transitions a focus at their recent Learning Session in Chicago.  Young adult patients, medical professionals and parents came together to bring their perspectives, provide their guidance for the many transitions children with IBD face and how to navigate them as smoothly as possible.  Across the ICN Network,  parental guidance is not only needed, it is valued.  The ICN Parent Working Group (PWG) is proof of that - parents from ICN centers are coming together to guide one another and the ICN Network.

 

When a child is diagnosed with IBD, or any chronic disease, parental guidance is important. Why?  Because family-centered care requires a circle of communication and guidance from all involved at different points on the journey.   It is the needed model to resolve the issues and meet challenges of pediatric IBD. Without the many facets of "parental guidance", our children will not live as well as they should with IBD.  So not only is parental guidance important, I believe it is required.


Can't This Thing Go Any Faster?

This is not a typical post for me, but it’s important to me that I let you know that I feel your pain as parents and patients.  I PROMISE that my next post will be an Alcatraz bathroom installment.

 

The darkest days for my son, Jedediah, clearly among the darkest days of my life, were those when Jed was in horrible pain.  Often, going to the bathroom offered some relief; other times, not so much.

 

Like many of our kids prior to a new treatment taking effect or a surgery, Jed was basically housebound in the weeks leading up to his colectomy.

 

So, when we were recently on a car trip and Jed announced that he had to go to the bathroom, even though I knew he was not “in pain,” Sela and I WERE in pain.  FOR him.  We were flashing back to those darkest days.

 

Then, it was déjà vu all over again.

 

It was 1978 or thereabouts.  My dad and I were on a car trip.  I was fresh in remission from my stubborn UC onset—it took over a year of twice daily steroid enemas to get to remission.  My folks, like Sela and I, had seen their child in pain with no way to relieve it.

 

I announce that I have to go to the bathroom, and my dad’s foot gets heavy all of a sudden.  I know now what he was thinking.  “Hey, I can DO SOMETHING here.  If I go faster, I can make my son feel better quicker.”  How many times have you wanted the ability to DO SOMETHING to make your son/daughter feel better?

 

The Tennessee Highway Patrol had other ideas.  Pulled over for going about 20 mph over the speed limit, my dad pleaded with the officer to let him take his son to a bathroom.  The police officer responded that the speeding ticket would cost $75 ($264 in 2012 dollars) and that my dad would have to follow him to the police station to pay the fine.

 

This was bad, and my dad didn’t want to make it any worse, so he let the police officer continue to talk about court, judges, etc.  Then he says, “But if you give me $5 [$17.60 in 2012 dollars], you and your son can be on your way.”

 

And, that, my friends, is how one Tennessee Highway Patrolman bought lunch on that summer day in 1978.


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.


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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