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Why didn’t I do that sooner? Dietary changes
Do you ever know something isn’t quite right, but you don’t know what to do about it so you don’t do anything? That’s how I felt with my feeding tube. From the get go I hated it, but it’s one of those necessary evils. Frankly, I didn’t even know there were options. Options for the tube style and options for formula. Once I learned I didn’t have to live with this archaic tube hanging out of my belly I switched to a low profile one called a Mic-Key. So much better for me, but it started leaking a lot. After unsuccessfully trying a few options with the tube itself I was referred to a dietician. Apparently if the formula doesn’t digest properly it can cause those kind of issues. Who knew! Knowing those of us with SMA have more difficulty breaking down fats, dairy and animal proteins I told that to the dietitian. After doing some research we decided on a more elemental formula and a multivitamin. In just a few weeks its made a world of difference. Not only has the leakage almost disappeared completely it sits better with my tummy in general. So far even my bowel movements have improved. I haven’t had to call anyone for an unexpected bathroom break. Wish I would have done this sooner, but I didn’t know. Don’t get me wrong I still hate having a feeding tube, but at least it’s more tolerable.
Is there anything you’re unhappy with, but don’t know if there’s options? We may not have the solution, but I think this is a great place to put it out there. You never know, you might be the one saying, “Why didn’t I do that sooner?”
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