04 February 2014

Discovered: Why Potty-Training Has Been So Hard

Two weeks ago, we finally got some real answers for why Bennett has really struggled with potty training.

During our quarterly Cystic Fibrosis clinic visit at Children's Medical Center in Dallas, we had a chance to meet with a GI doctor who has a special interest in working with CF patients.

CF Clinic Kisses from Sister

For the very first time, I learned of some real solutions to this problem should Bennett continue to struggle with being able to potty train.  We are pretty confident he will not have issues potty training his urine but since Cystic Fibrosis directly affects the digestive system, we wondered if his disease was behind his inability to control his bowels.

First off, Dr. Sathe wanted to give Bennett a rectal exam to find out what kind of feeling he has in that area.  It was hard to see my four year old have to get a rectal exam but he was incredible.  I asked him how badly he wanted to wear big boy underwear.  With a large grin he said, "a lot!"  I then told him Dr. Sathe was going to help him to do that so it would be important for him to come up on the table and let her look at his bottom.  Because he is so motivated to be "like a big boy," he happily got on the table and let her examine him.

She used her finger to find feeling near his rectum.  And what we discovered: he does not have a lot of feeling there.

I was VERY surprised.  She kept asking him, "can you feel my finger here?"  He often answered, "no."

What we realized was some of the nerves in his rectum were likely severed during the two rectum surgeries Bennett had over the last few years due to his rectal prolapse issues, complications of his Cystic Fibrosis.

No wonder that poor child has been unable to control his bowels.  He cannot feel it when it's coming.

Of course, my mommy heart immediately felt sad for him and so sorry for all the times Brian and I inadvertently made him feel badly for going in his pull-up.  Although we eventually came to believe his struggle with potty training was something more than just a "will" issue, we really had no idea just how physiological it was.

Dr. Sathe explained to me that because Bennett does not have adequate feeling in his rectum, he will have to be taught how to use other bodily signals to tell him he needs to go to the bathroom.  She explained he cannot rely on just the "feeling" of having to "go."

This is likely why we did see big improvement a few weeks ago once I explained to Bennett that "passing gas" is a sign he needs to use the bathroom.

Well, somehow, something happened right after that appointment but our boy must have figured something out because the very day after that appointment, he began to show INCREDIBLE improvement with his potty training.

It was as if Bennett figured it out, that he couldn't feel.  And it is as if Bennett recognized he was going to have to pay attention to other internal signs he was having a bowel movement.  We don't know what exactly happened but he went for almost 5 days straight without even an accident!  (Of course, the one day we sent him to school with no pull-up on, he had a huge accident in his pants on the playground... :))

Nonetheless, although we now know of some resources we have at our fingertips (such as using a laxative to create "stomach cramps" to teach him one of the physical feelings of going to the bathroom, an enema that would create regular bowel movements or surgery to investigate further), so far it is looking like Bennett might just potty train himself in the next few weeks.

Of course, we have also implemented the potty chart and purchased the biggest bag of Jelly Belly jellybeans I could find.  But those things were useless without having first discovered what was causing his inability to control his bowels.

It makes me sad to think just how CF affects so many things in his life.  Poor kid confronted with GI issues at birth which then caused eating issues later.  And these GI issues at birth lead to rectal surgeries that have now complicated his ability to go to the potty.  But, this child is resilient and has (and will continue to) learned ways to overcome each challenge.

As I have said before, GI complications of Cystic Fibrosis are annoying.  But they are not our biggest concerns.  The lungs are always our biggest concerns.  Issues with his lungs are the ones that most affect his life expectancy.

So, it is with a grateful heart I write that we learned from the clinic yesterday that he once again had a clean throat culture!  Each time we get a "clean and clear" throat culture results, I mentally tick off in my head one more mark as though I'm keeping track of years on a prison wall.

We have made it to 4 years and 4 months with no signs of pseudomonas, no signs nasty infections in his lungs just yet.  Truly, in the world of Cystic Fibrosis, every single day of clean lungs is a day to celebrate!

Bennett gets a "throat culture" at the CF Clinic.  This involves getting two cotton swabs at the back of his throat.
Bennett spent time at Thanksgiving around his great grandmother who had pseudomonas so we were very concerned he might get it.  But, so far, so good.  It may rear it's ugly head in the future.  Well, we know statistically that it will at some point, one way or the other, but for now, we get to celebrate that pseudomonas is not our biggest concern.

For now, our greatest concern is getting that boy out of pull-ups and in to Superman underwear!  And, for the very first time, I actually expect that it will be really soon!

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