November 21st, 2010
Sorry for such a long time in between posts. I’ve gone to update many times but as soon as I try to start typing my thoughts get all jumbled and I just end up staring at a blank screen. I’ve been waiting for my thoughts to clear up but I think if I wait any longer Nora’s blog may never get updated so I’m just going to push through it and hope it turns out legible.
So after Nora’s contrast enema at the beginning of Oct. we learned that her entire large intestine is dilated with poor motility. When we first discovered that she had bacterial overgrowth back in Sept. it was thought that it was the cause of the dilation and poor motility but in fact it could be the other way around. But there’s no way to know for sure, kind of like the age old question….which came first, the chicken or the egg? Although it’s hard not to wonder, which came first really doesn’t matter, just getting Nora back on track is what matters.
Basically her large and small intestine have opposite needs at this point. Food needs to stay in her small intestine as long as possible for maximum absorption but food needs to clear out of her large intestine quickly so she doesn’t get backed up. Her large intestine not clearing out correctly causes her pain, bloody stools, creates a nice home for bacterial overgrowth and ultimately makes it more dilated and motility even worse. Even though Nora easily poops 5-7 times a day technically she is constipated because her bowels are not emptying out as they should be. When she had a regular abdominal xray in Aug. the radiologist’s note read “does this patient have constipation issues?”. At time we actually laughed and thought he was an idiot – who can poop so often and be constipated?!? Well we’re not laughing now and he obviously wasn’t an idiot.
Initially, when we finally learned what’s going on and how the needs of her small intestine and large intestine are against each other it was really overwhelming, well I guess it still is, we’ve just adjusted to it more. Completely changing the way we’ve been thinking about and feeding Nora for the last 3 and 1/2 years is a big adjustment. All along we’ve been feeding her foods that will stay in her system as long as possible, even adding thickeners to slow it down and avoiding foods that go through her quickly. Which without motility problems that’s just what you want with SBS but now that she’s developed poor motility…..ok here’s where my mind starts to get boggled…..you can see our challenge. So now we’re trying to find the balance of getting food to stay in her small intestine long enough to absorb adequate nutrition but then quickly go through her large intestine. We have not found that balance yet.
Taking laxatives on a daily basis is usually the recommended treatment for poor motility but ultimately they make the problem worse because the colon starts relying on artificial stimulation and gets even lazier. With Nora still being so young we are hoping to only try laxatives as a last resort. So we’ve been trying different foods, supplements and treatments (which I will go into detail about with a later post) to try to get her large intestine working properly. At this point we are going through lots of trial and error hoping to find the right combination of treatmetns. Nora is still having some pain and bloody stools on a frequent basis but it’s no where near as bad as when this all started a few months back, and some days are better than others.
Nora’s GI doctors want us to continue on this trial and error path as long as her pain is “manageable” meaning that she isn’t in constant pain as she was a few months ago. If we can’t get the dilation in her large intestine down and get it working properly then at some point her doctors will want to discuss surgery to taper down her large intestine. Obviously that is something we want avoid at all cost. Nora’s weight has been down since all of this started so her TPN calories have been upped and she is still getting some supplemental hydration fluids. She may need more TPN than she’s needed in a while to get her through this and that’s ok, we’ll take all the help we can get.
Now on to the brighter side of life…….Nora’s first trip to the fair!