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

Bowel Management (part 1)

⚠️ 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.

The internet is a wonderfully useful thing.  When Mr. J was born and diagnosed with Hirschprung’s Disease (HD) the nurses told me that there were support groups on Facebook. You can bet that the first thing I did when we went home to sleep that night was hunt them down and join them.  The other parents were so supportive and helpful through his surgeries, ostomy, diaper rash, early potty training, and all the heartache and frustration in between.  Through this all and from our team of doctors I heard about bowel management; where we work with a team of colorectal doctors and nurses to determine how best to help Mr. J learn how to go on his own, rather than spontaneously eliminating waste as he had been doing previously.  In other words, it’s potty training boot camp with doctor support.  There are several hospitals that offer this kind of support, which is completely optional, and they each do it differently.  We are closest to Primary Children’s, so that is where we went.

Before I tell you what all we had to do let me back up a little and remind you some specifics about Mr. J.  HD can vary in severity from only effecting the rectum to effecting all of the intestines.  Mr. J has what is considered “short segment” and is missing about 1/3 of his large intestine (including rectum, sigmoid, and about half of his descending colon).  Because of this he has always had rather loose bowel movements and lacks control and some sensation of when he needs to go.  This is why we chose to get support and participate in bowel management.

We went into our first appointment not knowing quite what to expect.  To start they took and x-ray of  Mr. J’s tummy, then I filled out a long questionnaire about his bowel habits and why we were pursuing bowel management, then we met with a nurse. She told us that their usual process is to start with a daily large volume enema, take x-rays a few days in a row to determine how it’s working, and reevaluate after a few months. So that’s what we did.  We went home with our supplies a) an enteral gravity feeding bag, b) a 22 French balloon (Foley) catheter, c) an enema tip syringe, d) a 60 ml syringe, and e) a 10 ml syringe.  In addition to the items they gave us we picked up f) unscented puppy training pads (we tried to get chucks pads through insurance, but they wouldn’t cover them), g) glycerin, and (not pictured) lubricating jelly.

The procedure was this: Mr. J lay on his left side on top of a towel and puppy pad on the floor, I put the prescribed amount of saline (we mixed this ourselves with 4 cups tap water and 1.5 tsp. salt) and glycerin into the feeding bag, filled the large syringe with 35 ml of air and attached it to the balloon port, then lubed up the closed end of the catheter and inserted it.  When the catheter was in I inflated the balloon then attached the feeding bag and started the drip.  I found that if the water was cold or the drip was too fast it upset Mr. J’s tummy.  After all the solution was in I removed the feeding bag and stopped the open end of the catherter with the enema tipped syringe, then let him sit for 5-10 minutes. When the dwell time was up he got onto the toilet and sat for 45 minutes.

At first we did this at night just before bed, but over time it became easier to do in the morning, just after breakfast.  We learned that if we skipped an enema or had to do it later than usual Mr. J got a very upset tummy and usually threw up, thus we switched to mornings because those were disrupted less than evenings.


45 minutes is a really long time for a little kid to sit on the potty, so we did everything we could to make it as easy as possible on him; we got him a cuchioned potty training seat, and kept a TV tray handy for him to use while he sat. We tried having him play with toys, but he inevitably dropped them into the toilet, and after several extremely unpleasant fishing expeditions we put a stop to that and just let him have a tablet— he also got to use the tablet while we administered the enema as it helped him to hold still.  All in all he took this whole process pretty well. He was so patient and such a good sport through it all

I also found that using something to help settle Mr. J's tummy was helpful as the glycerin was an irritant and occasionally caused tummy upset even after he sat on the potty.  I added one drop of a digestive blend of essential oils to the saline and found that he didn't get as bloated by the end of the day, had an improved appetite, and fewer days with post-enema tummy upset when I did this.  As you can imagine this also made quite the stink, so I used a home-made, natural air freshener during and after each session to keep the smell to a minimum.  The nature of the enemas also made quite the mess in our toilets.  I found that using an in-bowl toilet cleaner (like scrubbing bubbles gel clings) and frequent cleanings helped make the mess a little easier to manage.  Mr. J even learned how to clean the toilet so he could help with this!

We wound up doing these large-volume enemas for a little over a year.  Stay tuned for what came next!

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