Yea, I don’t post much here huh. Seems like most folks are moving to Facebook and exposing way too much of their personal lives. Some folks have managed to get themselves fired from a job or have ruined chances at getting a new job due to, shall we say, intimate details found on social networking sites. Rather than spend time in a long dissertation of the pros and cons of other social networking sites, I’ll just say I’m content with controlling all my own content, for the most part on my own domains. Occasionally something in life changes and it creates emotions, physical difficulties or other problems or concerns in life that at some point friends, neighbors and even strangers should be made aware of. That kind of change came to my family recently.
For those who have followed this blog and not died of starvation, will recall my son Samuel was born with a condition called Hirschsprungs disease. To recap, he had two surgeries to correct a problem in his colon. Well, a new problem possibly related (or not) to this disease came up recently. Sam had been admitted to Hospital twice in the past few years for a distended abdomen. Basically his guts blew up like a balloon and he couldn’t get the gas out. Not being constipation we were confused as were the doctors. This last few weeks however have changed all that and resulted in another surgery.
Sam was again admitted recently, twice in two weeks. His original surgeon as well as a new Pediatric GI specialist both agreed, his colon was not working as expected. It had to come out. This was real shock to Mom, but I have to admit, I was nearly expecting it. With that kind of heartbreak sitting in our minds, the surgeon called during the surgery with what turned out to be good news.
The surgeon found that under sedation, Sam’s anus was relaxed enough to properly release the built up gas and soft stool that was blowing him up. This meant there might be a chance to save his colon but it was going to be a long haul. First, they would install an Ileostomy, bringing his small intestine outside his abdomen and he would now be pooping in a bag. Next, after some months of recovery, we will have to perform dilitation on his anus. Sounds lovely doesn’t it. This means we’ll have to insert increasing size rods in his anus to help the muscle expand -and- get him used to object passing through.
Next we’ll continue anal conditioning by putting him through some biofeedback session to help him understand how his back door works. Eventually, we hope to hook him back up so he functions normally, with stool coming out the anus rather than out his belly. Until then, we have a huge paradigm change.
Dealing with an Ileostomy is not easy. We now have to empty this bag hanging on his abdomen several times a day. The bag must be changed every one to four days. This means we have to buy these necessary bags, classified as medical appliances, and other supplies to support our son pooping in a different way.
It was initially a shocking and gut-wrenching experience. I’ve always tried to be a neat and clean person, so having to deal with someone else’s poop in addition to changing a bag on something that is outside the body that normally is found on the inside, was enough to freak me out for a day. Three days later we are beginning to deal with it better, but it’s still our little boy and it hurts to see him this way.
Prayers and good thoughts are appreciated. This condition is made all the more difficult because of his Autism, though Sam does seem to be coming to grips with the fact he has a bag for pooping now. We just pray the future is better, that we can successfully get his anus trained to pass poop, get his colon hooked back up, make sure it all works and he can lead a normal life. Until then, both Mom and I have a lot of work to do.
Thanks for listening,
Asa Jay
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