Not for the faint of heart! PQI and more doo doo...

Hi there and Happy Friday!
Do people look forward to Friday when they're retired and not working? I'll let you know when I'm there.
Allright, sports fans, may I have a drum roll? It's the blog you've all been waiting for..a dissertation on bowel movements, poo, (not the bear) doo doo, cah cah or whatever polite euphemism you can think of.
Having a child with Down's syndrome, I discovered that regular bm's were going to be difficult. Most kids with Down's have hypotonia (low tone)and are often known as "floppy babies". They just don't have the same muscle you and I have. One of the problems associated with that is constipation. We tried adding fiber to Gavin's diet in many different ways...glycolax, fiber infused juice drinks, adding fiber to hot cereal, etc. but he would often become horribly constipated. He would then stop eating and only want drinks or yogurt. Gavin's never been a good water drinker, so milk with ovaltine and juice were the drinks of choice.
As a parent, if you have a child that can't poop, won't eat and is grumpy, you get concerned and take it to the next level. What would that be, you ask?
Well, we tried getting him to relax by giving him a nice bath at night. Sometimes this would work too well, and he would poop in the tub the second you left the room to grab a towel. One night my frustration level was high, coming into the bathroom to see more poop in the tub. This means grabbing some rubber gloves, getting the child OUT of the tub, cleaning up the mess, disinfecting the tub, rinsing the tub, rinsing the child off, adding clean water and starting the bath all over again. OMGOSH would you just shoot me already? Where did it mention THIS in the parenting manual??? and WHY did I sign up for this??? What was I thinking??? At this point, I was yelling at the little guy...NO POOP IN THE TUB! NO POOP IN THE TUB! I must have said that ten times.
Well, the next night at bath time there was someone at the door. After a very brief absence, I ran back in the bathroom expecting the worst. Gavin had pooped in the tub again, but thrown the poo balls onto the wall of the bathroom. In his mind, he had dutifully complied with the request NO POOP IN THE TUB! I was not happy.
There had to be an easier way. How about my grandmother's favorite...the enema?
Not MY favorite, but would it work? We tried these on several occasions, with great protest from Gavin, but they almost always resulted in the desired result of a bm.
The problem was the pain it inflicted on Gavin.
At one point Gavin was getting ready for some tests at Children's hospital and was given medication to "clean him out" before a barium enema. In doing the procedure, they found that he was so backed up, they ordered an NG tube and some "GO LIGHTLY".
They basically put a tube down your nose, into your tummy, and give you so much fluid you're constantly having bm's and diarrhea. This goes on until you are pooping the clear fluid they are putting into you. I have no idea where they got the name GO LIGHTLY because it's anything but that.
At a later date, after a rectal biopsy, the doctor noticed something wasn't right. We had a consult with a pediatric GI doctor, he ordered upper/lower endoscopy to rule out Crohn's, Irritable Bowel Disease (IBD) and other things.
They have the technology to take pictures of the intestine, and Gavin must have had 20 or 30 bleeding ulcers in his intestine. He was diagnosed with Crohn's disease at the age of 7...
I try not to get into details of our life with too many people. But, with some of my closer friends I mention some of my concerns, many of which have been related to bm's! So, for a Christmas gift this year one of our friends gave us a "POO LOG" which is a very funny title in and of itself! It's a little diary where you can rate the quality of the poo, using the Poo Quality Index (PQI)and even draw pictures if you want. What a thoughtful gift!
Needless to say, Gavin has been able to go pee by himself for years now, if you remind him or help him. He doesn't run and do this independently yet. And, ever since the invasive procedures, I can't get him to sit on the toilet to try to poop.
He's managing the Crohn's disease with 7ml sulfasalazine 3x a day and hasn't been on prednisone since he was diagnosed. He does have problems with the Crohn's after he's been on anti-biotics, or when he's ill. He also has a reaction after getting vaccines. The last vaccination was a booster for Chicken pox and we spent the weekend afterward with him having about 6 to 8 VERY LOOSE bm's a day, for 3 to 4 days. Poor kid would have it running down to his ankles.
SO, TO MAKE A LONG STORY SHORTER, we would love to have our boy potty trained completely and managing all this himself. For now, we are happy he hasn't been hospitalized for constipation lately, and is managing the loose bm's associated with Crohn's. The hard part is being in the middle somewhere, and being happy with it!
When people ask what I do in my spare time, I smile and laugh. If they only knew! :) Keepin' the gloves handy, Laura