Bowel Management Bootcamp Day 2

This was a long day, which is why I didn't get to typing it up last night.  One of the things they do is a contrast enema to inject dye while doing x-ray to take multiple photos of the child's colon.  Basically they map out the colon to see if it is normal in length, in diameter, etc.  They look for poop in the colon to see how effective whatever bowel management measures you've been using up to this point are.  For us, this meant I needed to bring along an adult helper because I'm 27 weeks pregnant and can't be beside Mason during all the x-rays.  That meant Grandma came along for the day!  We left our house at 1pm and did not get home until 6:30pm - a long day for just two appointments.

During the contrast enema Mason did pretty well, he just wanted them to stop talking to him and get done what they needed to.  Before they begin the enema they take an x-ray to see what things look like (how much poop is there and where).  Then the process takes about half an hour between putting in fluid, taking repeated x-ray during that, draining out the fluid, and cleanup. 

What we found is that Mason's colon has some extra length with a few curves that is not typical but is also not crazy enough to need surgical intervention.  He does not have any unusual dilation, another good thing, because a dilated colon can't effectively empty until it overfills, which leads to constipation and complicates emptying.  What we have been doing (cone enemas) is decently effective and so there was not much poop in the left side of the colon, which is supposed to be emptied by our nightly enema.  (The poop on the right side is the poop on deck for the following day's bowel movements.  The things you learn!)

Once this was over we headed to clinic to meet with the doctors and nurses, who, I am happy to say, were helpful in focusing on our specific child's needs and plan.  They were also open to prescribing the Peristeen system for Mason in a month or two after we've found a good fluid mix for him using the foley balloon enema.  (Peristeen is a relatively new balloon enema system in the US that can be difficult to get.  They warned us that it will probably take multiple letters to insurance to get it approved but that it can be a wonderful option for children like Mason who have Spina Bifida (which affects nerves and muscles) and will be doing enemas for life.)

The starting plan for Mason is as follows:

• Continue taking 1/2 capful of Miralax per day.  They won't mess with this while we're working on other variables, knowing that up to now his body has required the Miralax to avoid constipation. 
• Switch from cone enema to foley balloon enema setup.  I promise to do a picture or two of this in a separate post.  For now, just know that it uses a catheter with a balloon near the end that can be inflated inside your child's bottom to hold the catheter in place while putting the enema fluid in and holding it there for a few minutes so it can travel up the colon.  We used it last night and had no trouble getting it in, inflated, or keeping it in for the time we needed to.
• Begin with a solution of 400mL saline and 20mL glycerin to agitate the colon and get it to expel the fluid and poop.  (This mix may be adjusted over the week of camp).
• Do the enema at the same time each evening.  Take notes in a variety of categories.
• Take Mason each morning for an x-ray of his colon.  Email our notes to the colorectal group.  Wait for them to check the x-ray and read the notes, then email us back with any answers to our questions, new adjustments to make to our process, etc.

During our meeting with the doctors Mason had had enough.  It had been hours of appointments and tests.  He wheeled over beside me and leaned over onto my leg and fell asleep.  Poor guy was worn out!  After our meeting with the doctor we went to the pharmacy for the fluids we needed and made the long drive home.  Our last stop before home was Dairy Queen - Mason had been great through the day's business and had earned himself a treat - vanilla milkshake. 

When we got home Mason played for a little while before it was enema time.  We tried out the new setup, which went smoothly enough.  The one thing I noticed is that if they are wanting the enema fluid to do the work of getting poop out (without Mason's assistance by coughing/using abdominals) we are probably not quite where we need to be.  We spent our hour on the toilet and moved on with our evening.  We're tracking accidents (because he is supposed to be cleared of poop if the enema was doing it's job) and we'll head for an x-ray this morning. 

Here is to a hopefully poop-free day!