Welcome to the bathroom my son Benjamin has Hirschsprung's disease
Hirschsprung's disease means that
when his colon started forming his gastrointestinal tract
toward the end of his colon it did not form nerve cells properly and
so it doesn't function properly a colon is supposed to go like this and his was
just shot it didn't have movement it's supposed to so he had to have a portion
of his intestine removed when he was a child after the surgery we had a lot of
trouble with incontinence of his bowel movements up to eight to ten times a day
so we looked into options for managing that and what we came up with was going
to the bowel management program at Cincinnati Children's Hospital and they
recommended Malone Antegrade Colonic Enema what that means is that in Ben's
little body this was Ben, this was his little shadow buddy, but in Ben's little body
his appendix was pulled up to his belly button
so his appendix meets his belly button right here and we actually insert a
catheter into his belly button and flush fluid into his belly button every day to
keep him from having bowel movement accidents we use this bag to flush the fluid and
we hang it up in the bathroom and that's how we keep Ben having bowl movement
accidents all the time and actually has worked wonders for us the other thing
that Ben has is he is a leukemia survivor and during the early stages of
his leukemia treatment we were actually potty training him for urine but somehow
during the treatment his bladder had nerve damage so now he's not able to
relieve himself of urine we were looking into options for best management for
that and a big deal for us Ben has Down syndrome as well
and he doesn't understand you know who can touch where it's really hard to
teach him about good touch bad touch and all of those safety issues so one of the
things that we were really concerned about is catheterizing him through his
penis and touching his penis every day and having teachers or whoever else
might have to care for him grandparents touching his penis so that was a big
deal for us you know same with enemas a lot of kids with Hirschsprung's disease
get enemas but we didn't want people touching his bottom every day in that way
so when Ben had his Malone antegrade colonic enema surgery mace surgery we
also worked with a urologist who did mitrofanoff mitrofanoff surgery is they
actually use his appendix for that too so they have half of this appendix hooked
up to one side of its belly button and then on the left side of his belly button
his appendix is hooked up to his bladder so as a direct portal from his belly
button to his bladder and we catheterize him and drain his urine from the left side
of his belly button and that's kind of called them mitrofanoff which means that
they just use his appendix it's the name of the person who did that so um that is
something that we do every day for Ben several times a day to make sure that
he does not have major urinary incontinence accidents Ben is still in
pull ups but um this keeps him much cleaner and keeps him from having large
volume accidents we decided to have the surgery because his accidents were such
that he was making puddles on the floor and in school that's obviously a
problem so in the morning we mix up a glycerin and water solution put it in
Ben's bag and then we insert a catheter into his belly
button and flush the fluid into his belly button which it goes into his
large intestine that's enough fluid that was tailored to Ben by the people at
Cincinnati Children's Hospital bowel management program and it is enough
fluid to flush all the way through his large intestine and get all of the
bowel movement out of that so he will stay clean for quite a long time after his
flushes he usually a 24 hours he'll stay clean give or take a little bit we use a
lubricating jelly to do that and we have all the supplies right here by the potty and
then once we are done with that and his bowel is empty while he is still on the
potty it takes about an hour all to flush the fluid in and to
get him to have clean out his bowels so he sits there and we let him play with his
iPad because what else are you going to do on the potty for an hour then we take
a figurin catheter and we drain his bladder through his belly button and
that keeps Ben clean and dry and it's one of those really wonderful things we had
a lot of doubts about having the surgery it was a major surgery and you know when
your child's been through a lot he'd already had hirschsprung's surgery like I said he's a cancer
survivor we really agonized over whether or not have the surgery but at the end of
the day we decided that it's really important for Ben to get the divinity and
the quality of life that not soiling his pants or having major urine
accidents would give him so for us that has been an excellent thing it's been
extremely helpful and Ben has gotten to the point where he is used to it and
he knows that's part of his life it is still a struggle every day nobody wants
to sit on the potty for an hour and but he does pretty well with it and we're
very thankful so and Ben does like to play with his little shadow buddy toy
that helps him you know kind of cope to know that he can do the same
thing to his doll that is done to him so if you have any questions I'm sure I can answer
them on if you put them in the comments I will be watching for any questions you
have thanks