We are continuing to manipulate what Ellie eats and the drugs that she takes to boost what she absorbs in her small bowel and reduce what comes out of her ostomy. This is in hopes of getting her food to work for her and also to manage her hydration and electrolyte levels
The problem is that most days more comes out of her ostomy that she eats. This doesn’t make sense at the very basic level- what goes in should come out. The physiology of the upper part of her small bowel complicates things however when it puts a large amount of fluid into her bowel to help the food be digested. In a normal situation this fluid would then be absorbed by her large bowel. With an ostomy, most of the fluid goes into the bag and is lost which equals a net loss of fluid, salts and other chemicals.
We have added solid foods which are known to slow things down, tried drugs like immodium (which constipated her and slowed her daily poops down to every four days), and also manipulated her feeding rate. None of these have significantly decreased the amount of ostomy ‘output’. Some have increased it.
Which brings us back to the question of whether the food is the cause of the ostomy output or whether it is independent of the feedings.
Fortunately all signs are showing that Ellie’s hydration and electrolytes are within a good range. She is happy and pink skinned and drools a lot, all good signs. One possibly bad sign was that her weight went down over the last four days, the first time that that has happened other than surgery days it is only 150 grams but that is a big deal for us these days.
We are waiting on a urine test to give us the definitive answer about her ‘lytes but are only a bit worried in the meantime.
On goes the experiment in feeding the girl. Something makes me think that it will go on forever.