PEG and high fiber nutrition

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ccox

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Hello all,
My mom received her PEG yesterday. They are waiting on the home health nurse today to give them instructions on how to use it and take care of it.

My question---what are the "side effects" of using a high fiber liquid nutrition (1.5 cal Jevity)?
She had a bout with severe constipation and then the opposite after she was treated at the hospital. She is weak enough that cleaning herself up after the diarrhea was not possible alone. I'm sure she was horrified to have to have her husband help her. They didn't call us for help.

Everything I read on PEGs and liquid nutrition centers around the hows and whats, but not how you can expect a change in gastrointestinal activity. They are just focusing on making sure she gains some weight and making sure the site remains healthy. I know they aren't thinking of how it will effect her gut. Could you enlighten me so I can pass the word along to my mom and her husband.?
Many thanks,
Carla
 

Markbreton

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Hi,
My wife has had a PEG for about 4 months now and all she uses is the 1.5 cal feed. It was a bit tough at the beginning, a bit of the runs, but she soon got used to the food. She has gained of bit of the weight she had lost using this food and her stools are now solid. Funny thing is that the formula comes in vanilla flavour and Tammy can actually taste it. Also what Tammy does (it sounds terrible but she enjoys it) at times is what we have come to call, chew and spit. She will take small bits of foods she really enjoys and will chew it for awhile then spit it out. She has all of her taste buds so this is her way of getting a bit of the flavours she used to enjoy.
Mark
 

ccox

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Thanks for your reply. I noticed over on the PALS forum, someone posted about their PEG and how it wasn't all wonderful from the beginning. That will be helpful for me to know. Everyone has told my mother that "it's no big deal, you'll feel so much better". Just like anything new, she'll have good times and bad with it.

I was amazed that they placed it at all. Her FVC is 20. I was under the impression that most ALS clinics don't advise it with an FVC of less than 50.

BTW, I don't think the chew and spit thing is gross at all. My father had a PEG for two years before he died following damage done to his epiglottis during an emergency ventilator placement. He suffered so by not even being allowed to suck ice chips. NO food/liquid in his mouth whatsoever. He would have loved to "chew and spit." Luckily, my mom can still eat tiny bits of food. She'll save those times for something special like a bit of chocolate.
Carla
 

Markbreton

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There is no doubt that everyone will react differently to the PEG. My wife is a real fighter and she never complains. I guess her 28 years as an ICU nurse conditioned her.
I'm sorry to hear about your dad and mom. The key to the PEG is patience. Tammy, my wife is actually thinking about getting a "button" which would replace the long tube. I've not heard nor read any comments on this forum regarding the button. If anyone has any information please let me know.
Mark
 

Carolan

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Jevity and Fiber plus lots of other info

Our experience with Jevity is that my mom still needs more fiber. We crush Benefiber and put it down her tube. Benefiber is kind of difficult to dissolve, so I am going to try pulverizing it in my little Cuisinart MiniPrep (which I recommend that you buy). Our doctor said that Benefiber is good for her, and we also give her DanActive yogurt with live cultures. He recommended this because she has had a lot of diarrhea. Lactinex pills (must be kept refrigerated) will accomplish the same thing, but the yogurt is actually easier. Also get some cranberry juice. This is good for keeping the pipe clean--not quite like Liquid Plumber, but that's what I call it sometimes. I would use cranberry juice every day because it's also good for antioxidants. You might also look at V-8 with blueberry for antioxidants. V-8 has all sorts of new flavors. Coca-Cola is also good if you think the tube is getting clogged up.

Keep in mind that you can put lots of things other than formula down the PEG. Real food is better, which is why I recommend the Cuisinart mini-food processor. Just use good judgment, but our doctor even encouraged my mom to have a little bit of champagne on New Year's Eve. She had some black-eyed peas the next day for good luck in 2008 (although I'm not sure it worked--she wound up back in the hospital on January 2nd--but not directly because of the peas).

Other tips: another doctor recommended turmeric and cinnamon, which you can get in powder form. These are good for fighting the dreaded MRSA that is all over the news these days. He also suggested garlic.

If you are going to give meds down the PEG tube, be sure to get a pill crusher or use a mortar and pestle. We use a pill crusher because it's easier. Also, think about whether you want to use an enteral pump (which provides continuous feeding) or bolus feedings (pouring the Jevity down through a large syringe without the plunger). My mom prefers the bolus feedings because she doesn't like being hooked up to extra tubes (she is also on a ventilator).

Either way, be sure to check for residual. You do this by connecting a large syringe to the PEG tube, with the plunger in the syringe. First push the plunger all the way into the syringe, then connect it to the tube, and then turn the valve on the tube so that it's "open." Pull the plunger out slowly to see if any of the Jevity comes back out of the tube. If it does, hold the feeding for an hour and then check for residual again. This is really important to avoid overfeeding.

One more thing: you can use the syringe (without the plunger) to "burp" the stomach. Connect the syringe, open up the valve, then turn the syringe sideways. Don't turn it too far or Jevity will end up all over the place. You'll often see and hear some gas come out--this will take some pressure out of the stomach. You can lightly press on the stomach in various places to help with the burp. You can also put a little water in the syringe to put a little pressure on the stomach and facilitate the burp. This sounds kind of gross, perhaps, but I really like the burping. In fact, I wish that I could do it to myself :-D (minus this dreadful disease :-( ).

Oh, and I guess that I don't really understand what a PEG tube has to do with FVC level. The FVC is the forced vital capacity when breathing. The PEG tube is for the inability to swallow. I don't think that my mom even has a measurable FVC now that she has suffered from respiratory failure. She can barely breathe without her ventilator. Her FVC was at 53% this summer when she went on bi-pap, but she got the PEG after being intubated and then getting a trach. Now she breathes "over" the vent, but she can barely breathe on her own--just a few breaths at a time.
 

ccox

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My goodness, what a helpful reply. I'm going to print it and give it to them.
The FVC concern comes from the fact that impaired breathing at that level (20) and sedation don't often mix well. Since the respiratory system is having trouble already, being sedated is dangerous to say the least.
Peace to you and your mom. Just keep chugging away.:)
Carla
 

Carolan

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Hi Carla,

That makes sense. Is the sedation/anesthetic from the PEG tube insertion? She shouldn't have to stay on a sedative forever just because of the feeding tube. Our doctor is really careful about muscle relaxants and that sort of thing for a number of reasons, including most importantly the one that you mentioned. This probably belongs in another thread, but stay away from Ambien. We do use Ativan for anxiety, which can be crushed and then put down the feeding tube, but we don't use very much or very often. Tylenol also seems to work well for pain. My mom doesn't use anything stronger.

Are you also dealing with a trach and/or ventilator? If not, this is the next issue that you will probably have to address. My mom is doing relatively well with hers, but it is definitely a commitment. You might want to look at past discussions about undergoing a trach. I posted about my mom's experience there, but that was right after the procedure. We are still as glad that she did it--my mother is an amazing person for what she has been through--but it does take a lot of work, training, and planning--much more so than the PEG tube, which is relatively easy. It's not a decision that everyone would make, and I don't blame them. Then again, neither is the feeding tube--it really is a personal decision that needs to be made by each individual in consultation with family.
 

ccox

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Carolan,
My mom was only sedated the length of time it took to insert the tube, but everything I've read says even that short of time could set an avalanche in motion regarding her breathing. That's behind us though. She did just fine.

She was against the tube at first---"don't want any holes God didn't put there", but thankfully she changed her mind. She was wasting away. As for a vent---definitely not. She's 69 and is unable to do most anything for herself. She doesn't want to live that way. Understandable. I respect everyone's choice.

Take care,
Carla
 

Trina

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Hi All,
My Mom has had her PEG tube since mid October and has done fairly well with it. The main problem we are having is that she keeps getting a buildup of yeast in her stomach. We think it is related to the relatively high sugar content of the Jevity. She was using Jevity 1.2, and we had the yeast under control using probiotics and oregano oil (sounds strange I know, but it worked). The nutritionist recently increased her to Jevity 1.5 and the yeast is back again. The doctors don't seems to have an answer, so my question for all of you is: is there any low sugar or no sugar feeding supplement, or can we make our own? Is there any reason we can't formulate our own liquid food as long as it contains all the necessary nutrients? Thanks in advance for any input.
 

CindyM

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I think we discussed on another thread how some folks liquify regular foods and put them through the food. At least that was my understanding...Maybe y9u can find something in our past topics by using the search feature on this site?
 
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