LOOP Blog

Much in the same way ImproveCareNow gets excited for World IBD Day (May 19th) and Crohn's & Colitis Awareness Week (December 1 -7), the National Council on Skin Cancer Prevention is excited about Don't Fry Day - which is today, the Friday before Memorial Day Weekend.  A day that is set aside as time to raise awareness and hopefully prevent skin cancer.

Skin protection and cancer prevention is serious business that everyone should be thinking about.  We are posting this message here today because it is important for kids who are taking, or have taken, immunosuppressants (thiopurines are an example) to treat their IBD to be extra careful in the sun - as the risk of developing non-melanoma skin cancer can be higher for them.  You can read more about this in the upcoming issue of CIRCLE - which will be released on May 29th.  In the meantime, in honor of Don't Fry Day, put on your broad spectrum sunscreen, grab a big floppy hat and your sweet sunglasses and enjoy a beautiful Memorial Day Weekend!

[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.

I was 8 years old when diagnosed with ulcerative colitis in 1975.  That was the dark ages.  Non-flexible scopes.  Months and months without a diagnosis.  Wait!  There’s still that months and months without a diagnosis problem.  That’s something we’re working on fixing.

After a fairly mild disease course for 20 years, my UC worsened significantly in 1994 resulting in a full colectomy in 1996.  Guess what, though?  This blog isn’t about me.

Because of those dastardly internet predators, all of the names that I use, other than that of the family dog (Izzy) have been changed to code names.

My daughter, Tinkerbell, then 6, was diagnosed with UC in 2004.  After her initial remission, she had a flare up in 2010.  While it took a while to get her under control, we learned a few things.  One, she cannot take 6MP.  Which bums me out because I like having all of the arrows in the quiver for treatment.  Second, her UC is low and localized.  That’s proven to be a good thing.  She’s back in full remission taking no medication except a 5ASA drug.

My wife, Sela, and I thought that IBD had hit us hard enough, but we were wrong.  In 2010, my son, Jedediah, was diagnosed with what I'll call an advanced case of UC.  He struggled mightily over the next 12 months as we watched one medicine after another not work.  Jed got sicker and sicker, in and out of the hospital.  After all of the arrows in the quiver had been fired, Jedediah had his first colectomy surgery in January 2011 and the next 2 months later.  Jedediah is doing great!

Our youngest daughter, Elly Mae, has escaped the family genetic lottery through her first 11 years.  She lives in constant fear that she’s next.  Sela and I take solace in the fact that the odds really are with us, but you never know.

I volunteer for several IBD organizations, and I speak at IBD education events.  I have many messages, but my main focus is to help parents understand the power they have over their children’s care.  IBD has a public relations problem—people don’t like to talk about poop.  Other chronic illnesses get all the pub.

As a result, I’ve talked with dozens of parents in recent years who have that shell shocked look on their face.  Many had never heard of “Crohn’s disease” or “ulcerative colitis” until the doctor delivered the diagnosis to them.  They are venturing into the unknown, and that scares the hell out of them.

I understand.  My parents were those parents.  I’ve lived through it as the ill child of parents who had to feel their way around, as an adult with IBD and no remission in sight and as a parent of two children—one with mild IBD and the other, well, not so much.

Knowledge is power.  Being a parent is power.  Acquire and uses these powers.  Your kids are going to need it and you.

Han (I’m a 45 year old Star Wars geek.  What other name should I use?  And since I get to pick the code names, I’m taking Han all day long and twice on Sundays).

ImproveCareNow Network Director and Physician Leader for the Vermont Children's Hospital at Fletcher Allen Health Care - Dr. Richard Colletti - in his own words. 

Like other pediatric gastroenterologists who care for children with Crohn’s disease and ulcerative colitis, I try to learn as much as I can about my patient, as much as I can about the disease, and to care about both.  But the care that a patient gets doesn’t just depend on how much a doctor knows, or how much a doctor cares—it depends on the system in which the doctor works.

May 19th is set aside as a day to raise awareness about two chronic illnesses that together affect millions of people worldwide.

Crohn's disease and ulcerative colitis.  Together known as Inflammatory Bowel Disease or IBD, these two chronic conditions affect the digestive tract - from top to bottom.  The causes are not known, and while research continues there is currently no cure.  However, there is hope and a whole lot of heart - in the ImproveCareNow Network.

Thank you for joining us here, on this special day - World IBD Day 2012!   ImproveCareNow, together with strategic partner - the C3N Project - is engaging a community.  We look forward to having you as a part of this community.  We have so much to learn from each other.  LOOP is a place to share information, to learn, to discuss and to work collaboratively.  Together we can co-design the best standard of care for kids with IBD.  It begins with awareness and understanding.

You can help raise awareness and understanding about IBD and ImproveCareNow (today, tomorrow and the next day) by simply using your voice.  Ask questions and learn more about IBD and ImproveCareNow on Facebook and Twitter, and watch our videos on YouTube. Have CIRCLE, our eNewsletter, delivered to your inbox.  Email your questions and stories to [email protected] so we can answer and share them on LOOP.  We have a fabulous group of clinicians, researchers, innovators, parents and patients all ready to write posts for LOOP and they want to hear from you.

Happy World IBD Day to you!  We look forward to seeing you back here on LOOP | the official blog of ImproveCareNow in the near future!

Welcome to LOOP | the official blog of ImproveCareNow.

We all have a voice - patients, parents, clinicians and researchers – and we want to share our stories, ideas and innovations with you. Through LOOP, we hope to further our impact in the pediatric Crohn’s disease and ulcerative colitis (IBD) community.

ImproveCareNow is an established network of pediatric gastroenterology care centers – 36 care centers, with 6,800+ patients in our registry and 300+ clinicians participating in the Network. We have raised the bar for the standard of care in pediatric Crohn’s and colitis. Our remission rates speak for themselves. ImproveCareNow kids' remission rates have climbed from 50% to 75% in the first five years. Our end goal is to spread ImproveCareNow to all kids in the U.S. with IBD – so that many more can feel well instead of sick.

Thank you for visiting LOOP. We are officially launching May 19^th in alignment with World IBD Day 2012. This is your invitation to learn more about ImproveCareNow and IBD; and to join us in improving the care and outcomes for all kids with Crohn’s & colitis. Spread the word!

Email [email protected] if you have a story to tell, a topic for our experts to blog about, or a question or comment share. It’s always great to hear from you!