Under the hood

intestine-diagram-smallerAs I said in my last entry, I promised I’d share with you the findings of the Upper GI Fluoroscopy done last Thursday as we left the hospital.

To begin, let’s have a refresher course on what a normal, healthy set of intestines look like. (Thank you wikipedia for the image.)


As I’ve mentioned before, Patrick is missing most of this anatomy. Instead, he has only the duodenum and his descending colon. In the image above, that would be the little dotted line that goes from the stomach to the small intestine, and the long straight right side of the colon that connects to the rectum.

Now let’s have a look at an image taken a month after the surgery that reconnected Patrick’s small and large intestine in August of 2009.


Notice that the small intestine (duodenum) is enlarged while the large intestine (colon) is narrower than it should be. At the connection between the two is a very narrow surgical connection that is at best no larger in diameter than Patrick’s finger.

Ok – now let’s look at the image taken just last week.

uppergi-apr2011 copy

Can you see the problem? Yeah, the narrowing is just as small as it was, but the duodenum has been stretched and stretched and stretched until it fills half of Patrick’s abdomen. We know from sad experience in tummy draining and vomit that this can hold approximately half a liter of fluid. That’s about a soda can worth of bile. And since it can never empty completely, it’s always secreting trying to digest the fluid that’s already in it.

The good news is that the colon is a nice normal, healthy size now.

So you may be asking, what can be done?

Well, of course surgery would be an option. They could revise the connection… but intestinal surgery is painful and tricky and dangerous. A transplant would definitely be the very best solution. But, as we don’t know how soon a transplant will come, and we don’t want this problem to get any worse and risk bigger problems like total loss of motility (Oh my GOSH does this intestine move now!).. or worse yet, rupture.. we can’t afford to keep waiting for transplant to fix this problem.

So, we’re going to start with an attempt at the less invasive. A bowel dilation. Here’s what will happen. Patrick’s GI will put a scope down his throat and into his stomach and then intestine. When he can see the narrowing, he’ll follow with a guideware that will go through the anastamosis. (Vocab word: That’s a surgical reconnection of intestines). Then, he’ll run a balloon over the wire and slowly inflate it, hopefully stretching the narrowing to a more manageable size.

If all goes as hope, then instead of all that bile sitting in his small intestine, he’ll be able to pass it through his colon and he’ll start pooping… a whole LOT. But at least it won’t be sitting, and at least he won’t be vomiting. And the intestine will rest and be able to shrink back to a more normal size. Making it much healthier for transplant.

Or so we hope.

So, Dr. Jackson is talking to Patrick’s surgeon and to his transplant team about this plan and then, if they give the go ahead, then he’ll schedule for this to be done outpatient as soon as it fits onto the schedule.

Since he’ll already be sedated, we’re going to save Patrick another painful scary memory and will have them do the botox shots in his leg at the same time.

That’s the problem. And that’s the plan. It was definitely interesting to have a look under the hood at the cause for all the symptoms we’ve been seeing.

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