spitting up after PEG, but only in the evening

[joemz200]

My wife has Bulbar onset and frontotemporal dementia. She has a feeding tube and gets two cartons of formula in the morning, and two in the evening. At both feedings she takes Levsin for saliva control

The morning feeding is around 7:30am and there are generally no issues with spitting up or vomiting
The evening feeding is usually around 5-6pm, and at 6:30 she takes a shower. Almost every evening around 8-8:30 she has a significant spitting event, with phlegm and/or brown material (feeding tube formula?) coming up, and she's in considerable distress while she's spitting up. She is ambulatory, and after both feedings she is generally sitting up, never lying down.

I can't figure out why the same quantity of formula and water in the morning has no reaction, but every evening is a problem.

 

[lgelb]

Try moving the shower to before the feeding? The stress of the shower could interfere with digestion.

 

[joemz200]

Thanks, that's a great suggestion, BUT, I forgot to provide a critical piece of info. Each morning, because she needs to be cleaned up, she takes a shower in the morning also.

The other thing that makes no sense to me is whether i do the feeding at 4, or at 6 (and the shower is almost always at 6:30), the spitting issue is around 8. That seems to indicate it's not related to the shower, but since it's not occasional, and not random, there's something that's causing it

Maybe her tummy problems are linked to the end of Wheel of Fortune at 8pm

 

[lgelb]

What formula is she getting?

 

[joemz200]

She was on Katie Farms 1.4 for the first year. Then she developed explosive diarrhea. The doctors didn't think it was related to the formula and thought she might have microscopic colitis. Rather than put her through the discomfort of a sigmoidoscopy they decided to treat it as colitis and began steroids about a month ago, and we have a few more weeks of that regime. The steroids, given only in the morning, have fixed the diarrhea. For purposes of the timeline, the spitting up began before the steroids.

In the meantime, we were told there was a shortage of Katie Farms and switched to Nestles Compleat 1.4

I've wondered if I diluted the formula more in the evening, causing a faster flow but increased volume, but I'm not aware that the two feedings are any different

In the evening, I re-use that morning's new syringe, which I thoroughly clean, so I don't think that's the difference

She doesn't eat anything throughout the day, so it's not that she's already full when she gets the evening feeding

Totally confused

 

[lgelb]

I am not saying the switch made a difference, since the problem already existed, but it could have been exacerbated -- for example, the Nestle formula has an artificial sweetener (Stevia) that the Kate Farms doesn't, and some people are sensitive to those.

But I will comment that both of these are based on brown rice syrup and pea protein, so it may be that neither one is really ideal for her. I really don't believe the statement that a given GI issue can't be traced to one's daily diet, and others here have experienced improvement with a new tube diet, whether a different formula or moving from commercial formula to regular blended foods through the tube, or a combination.

In addition, though, yes, steroids calm inflammation, but foods that are not our jam can cause it in the first place. Nor did most people pre-ALS eat only morning and night.

I would check out Whole Story if you want to stay with a formula. They have both vegan blends and not, at two levels of fortification, and are based on real instead of distilled ingredients.

 

[joemz200]

Thanks, at the next clinic visit I'll talk to the nutritionist about changing formula