Saturday, July 27, 2013

Going Nowhere Fast

*** This is a poop post. The vast majority of you will want to just skip on over it. It's okay. Come back soon, I'll have something less gross to talk about, like swimming or my nieces visiting or anything that isn't brown. For those of you walking this walk, carry on. ;)

seriously, mom, this is so gross

So, the ongoing frustration continues. After being referred to the new GI doctor, I had high hopes about finally coming up with some great plan to deal with bowel business. I spoke with his nurse practitioner who said she wanted us to do a full clean out before the next step. 

Let me tell you, we've done clean outs before, but never to this degree. I wanted to vom on an hourly basis. Once again, both King and I were traumatized by poop. I will spare you the gory details, but Rachel and Cordelia are more than willing to describe the puddles. 

Puddles, people. 

I now have a toothbrush reserved specifically for the task of scrubbing itty bitty crevices in King's wheelchair. 

Anyway, once that was done, we found out the answers we wanted (there are no little caves or cavities made in his colon anywhere created from constipation and holding stale poop for endless amounts of time. yay.) and Kinger was all cleaned out. And then some. I called up the nurse, eager to hear what the next steps would be. 

Give him fibre so he's not constipated. (he's not constipated)
Give him other fibre so his poop is solid (his poop is solid)
[insert review of King's diagnosis and what neurogenic bowel means for him. for the second time since apparently it wasn't written down the first time. reminder that we want surgery. in the meantime, we want something else to do so he's not going all day, every day]
Try to train his bowel to go at the same time every day (November. Every night since November)
Have him sit on the potty multiple times a day (haaaahahahahahahaha!!! 30 min/day, multiple times a day?? good one)
OK, have him sit on the potty in the morning before breakfast, instead of at night (sigh. really? ok, we'll try)
Ummm.... (ummm??)
Maybe when his lower ab muscles are stronger he'll learn to push. (*crickets* uh... yeah and when his leg muscles are stronger he'll learn to walk, right? kthxbai)

And that's where I hung up and put my head down on my kitchen counter and King rolled up and asked me if I was sad. Oh, buddy. 

I don't know where we go with this. No one wants to talk about enema's, no one has any other suggestions. No one other than his urologist and I seem at all concerned that the train doesn't stop. I'm frustrated. 

A couple of interesting things DID come out of this experience though. The first was that just before we did the clean out, King did get constipated. Nothing changed - his diet, his liquid intake, his liquid output, his health, his activity level, his medicine - other than this. It's just one of those odd things that happened, but it's never happened before without some ominous reason.

The other was that Kingsley is acutely aware of every time he poops, toots or has a stomach gurgle. This is also new. He gets a look of absolute panic whenever it happens also, which makes me sad. I'm glad that he's aware of it, so that he can be changed quickly. I am not glad that he is so bothered by it. 

 are you STILL talking about this??

That's it, I'm all done. We have been having a great summer other than this nasty bit. Hopefully, it'll be our only blip! 



6 comments:

  1. I think that it is great that you post about this issue. Being frank about certain issues really helps form community and I am betting will be of great service to some other parent out there googling this same topic!

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  2. So sorry to hear Kingsley is still having troubles and there does not seem to be an end in sight. It is frustrating not to get on top of the poop situation. E has some similar issues where his consistency changes but his diet/meds/fluid intake doesn't. We give him a daily probiotic...but I bet you've tried those too... For E, we find that fibre makes him more loose, we haven't really given him any since he got C. diff in April. He too withholds and tries not to go...would love to see the day that ends...

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  3. Hands down the most frustrating part of SB. Oy. That last pic of King shocked me. Seriously Jill, he looks so grown up all of a sudden. What happened? Where's the baby? All I see is a big boy.

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  4. Oh my! When did Kingsley get so grown up looking! I can totally see him as a teenager with that same look saying "mom you are taking another picture!"
    So you did all this clean out and they didn't even talk about enema?! So why did you do the clean out?
    Our nurse kept trying to tell me we hadn't tried X Y Z for enough time. In the end, I went online and bought my own supplies, googled what to do and then talked to her about the results.
    That's odd they said in the morning before breakfast, they've always told me about 20 minutes after a meal.
    Good Luck! You can PM me if you want to vent or if I can help

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  5. So glad you're blogging about all this because we've got the lovely neurogenic bowel going on with Mason too. I think I would have blown a gasket at the 'when his abs get stronger' comment. Seriously people? Hang in there and keep sharing as things go on. I'm hoping you all figure out some magical system before Mason is too much older so we can shortcut to something that works...hahaha. Never hurts to dream, right?

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  6. This may be double not sure if my first comment posted but how about the ACE? Not sure if he is old enough but my son had embarrassing accidents all through elementary and middle school. We had the ACE done when he was 15, and have enjoyed 2 accident free years so far. He does it himself (yeah!) every other night. Just wish we had done it 10 years ago!

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