⚠️ 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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I am a snuggle on the couch while we watch shows kind of mom (excuse me while I sneak in a nap).
I am an oily (as in essential) kind of mom.
I am a sometimes lose my cool over something seemingly silly kind of mom, because sometimes I let lots of little and big things build up and a needle just breaks this camel's back.
