PEG tube > now I can't control my bowels?!

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Now stay at home dad

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Joined
Oct 7, 2015
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33
Reason
PALS
Diagnosis
09/2015
Country
US
State
CA
City
Coarsegold
hello, I have had a feeding tube now for about a week. I am strictly on the formula diet (i haven't tried pureeing Foods yet) and I haven't been able to control my bowels,. Everyday, sometimes twice a day I'm having accidents. Is this how it is going to be from now on? I feel trapped now like I can't leave the house.


thanks for any advise.
 
You’ll undoubtedly get some great advice from tube-savvy PALS and CALS here about trying different formulas vs blenderized foods and slowing rate of feeding. I’ll just add that if you try these other things and still have runny stools, consider adding a clear (non-chalky) fiber supplement such as Benefiber.

People tend to think of fiber as a treatment for constipation, but it can also help bulk up runny stools. You need to increase water intake any time you add fiber.
 
I have been tube feeding for 2 years. Joyce puts regular meals, all home cooking, in a good quality blender. Even salads. I have to take some Miralax to avoid constipation.
 
need more info about feeding schedule.
I do well on total formula feeds, but had to change formula. And I need longer feed time by using gravity feeding bag twice daily. You may have to experiment because that formula definitely not working for you.
 
Definitely look at formula and when and how you are adminstering it. Do you have a pump?. Are you doing bolus feeds?

Which formula. My sister tried several before she could tolerate one. A lot of people have issues with jevity which is often the first one given

Blending reall food is great if it works for your situation
 
If your formula has corn syrup, you might want to try something that resembles real food. Look at the ingredients. Some cannot tolerate soy based or even dairy based. I think trying blended food in a Vitamix with added water might work.

I know some PALS who had bad problems with Jevity and kept blaming the tube delivery. Sometimes a mixture of formula such as Liquid Hope alternated with blended real food works.

I don't have a tube but I can't tolerate Miralax. I do tolerate psyllium well and it helped with both diarrhea and constipation (which I have every day I don't take it.) I didn't realize you could use pure psyllium in a tube but some PALS are doing it. You just have to make sure you use plenty of water.

You'll find a solution but it might take some trial and error.
 
thanks everyone! I'm doing bolus, letting it flow in naturally with some added water. I do have the jevity, I am only feeding two to three times a day
 
I would change both of those things. Slow feeding via pump may help. I am not a fan of jevity but to get something else paid for you may have to try longer than 3 days
 
The two PALS I know both got letters from their doctors (primary care) that they couldn't tolerate jevity. Medicare approved both to move over to Liquid Hope. It did take about a month.
 
Functional Formularies (the Liquid Hope Company) offers assistance with getting the paperwork done/approved.
 
Jevity gives me the opposite (constipation and gas). I really like Kate Farms, it's real food based like liquid hope and they can take insurance
 
thanks all. I get to start the liquid hope next week, it sounds like it is good stuff.
 
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