Bowel Management (part 2)

⚠️ WARNING ⚠️ this post is about poop, or rather teaching a child how to do it, and keeping him clean and healthy. If you’re squeamish at all please skip this post. This post is not meant to provide medical advice in any way, shape, or form; it is merely a documentation of our experiences and meant to serve as support for other families in similar situations. If your child has severe issues with bowel movements, tummy troubles, urination, or other elimination for any reason please seek medical advice.

4 months after starting bowel management we had a follow-up appointment, at which they told us to continue daily enemas for a whole year.  This was not what I was expecting/hoping to hear.  Not going to lie, I cried about it.  The enemas were hard on Mr. J, on me, and on the rest of our family.  We had to be home by a certain time each night to do them.  We had to re-arrange events and schedules or administer the enema early.  If we didn't make special arrangements Mr. J got violently sick, which was even less fun.  we were 8-ish months in when I decided mornings would be easier because we rarely have anywhere to be in the mornings.

After about a year of the enemas Mr. J asked me when he would be done with his "washouts."  He was noticing that he was different and I wouldn't be surprised if he was also noticing the stress it was causing me as well; he's a perceptive boy.  When we had a travel mishap with his catheter I reached the end of my rope and called the colorectal clinic to ask about the next step, it took them 6 weeks to get us in.

When the appointment finally arrived we went through the usual x-rays, paperwork, and interview with the nurse.  They agreed that it was a good time to move-on in the process.  We were prescribed 2 squares of chocolate x-lax each evening and 1 tablespoon of pectin three times a day.  The next week was daily x-rays and phone calls to make sure everything was working the way it needed to.

Here's where we started to go off book.

I tried everything they suggested to get Mr. J to take the pectin.  I mixed it with water for him to drink, I mixed it with juice, I mixed it in applesauce, used a dosing syringe to give it to him straight, in yogurt, on sandwiches, and smoothies.  I asked for more suggestions from other parents and came up empty.  Mr. J said that the pectin made everything "taste slimy" no matter how much I diluted it or what I mixed it in.  To compound the problem, any time he had the pectin at night he vomited in the morning.  Add to the pectin issues his complaints of tummy aches starting 30-60 minutes after having his laxative made me sad.  I reduced his dose to 1.5 squares after consulting with the nurse, but we still struggled with the pectin.  I tried working up to the correct dosage, but Mr. J refused to eat anything he even suspected I had put pectin in.  So I gave up.  He was still taking the ex-lax, but had had lost any control he had had of his bowels.  He was back in pull-ups full-time, and going through 3 or more most days.  So I cut his ex-lax to one square per day.  This helped some, but he was still smearing through the day and getting an even bigger mess at night.

At this point we worked it out that he would go to the bathroom every morning before breakfast followed by a rinse in the shower because he's just too big for me to be wiping him.  Unfortunately this whole process was taking nearly as long as the enemas did.  Equally unfortunate were the times when he had larger accidents during the day and had to be changed like a baby.  It was during one of these that he tearfully asked me when he could wear big boy underwear again.  It broke my heart to see him so sad and feel so broken.  I was determined to find a way to get him what he wanted.

This is where we are now.  Mr. J is completely off the ex-lax and we are taking it one day at a time.  If ever he goes a day without pooping He gets a square.  More than one day and he gets an enema.  He is still struggling with control, but it isn't as bad as it was.  He is still in pull-ups full time but sometimes makes it through a day without an accident or smear.  He's not in big boy underwear yet, but we are working towards it and are closer than we were even a month ago.

Stay tuned for another update in a few months. :D