Newbie post - Peg and J-tube do not work

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JRBonner

New member
Joined
May 24, 2011
Messages
1
Reason
Loved one DX
Diagnosis
07/2011
Country
Uni
State
AL
City
Birmingham
My wife has been unable to get adequate nutrition through a PEG or J-tube due to pain and nausea. The doctors (nutritionist and GI) have said the only other option is the IV.

Should we try a different nutritionist and/or GI? Should we go outside Birmingham (AL) to locate someone else?

Any and all advice welcome.
 
I'm so sorry your wife is having this trouble with the feeding tube. I suppose the doctors have considered a naso-gastric tube? This is the only other alternative I'm aware of. Thinking of you both.
 
So sorry. Is even water an issue through the tube?
 
Don't give up in your wait for ideas--some of our members don't do well until later in the day and are here in the evening. I don't have a peg, but in reading other folks questions know that aside from different formulas, there are also people who use a Vita-Mix, and simply liquify the normal diet, adding broth or cream, etc. to thin it. I've also read of opening the valve and letting air escape. Unfortunately, that's the limit of my knowledge, but your wife and you have my sympathy--it does sound so miserable.

Don't lose hope now, folks have this problem fairly often.
Ann
 
Can you explain a bit more about why she is having the pain and nausea. What kind of food is she taking through the tube and how long has she had the tube? Like Ann said many people use a blender to liquify regular food so maybe that would help. I've been on formula for over two years with no problems and would not be here without my peg tube so I hope that you can get her problem figured out.
 
I don't have to use a tube yet, but I am pretty much confined to a liquid diet. Has your wife tried Ensure? It works really well for me to make sure I get the nutrients and vitamins I need. My stomach is really sensitive too and because Ensure is lactose free and gluten free I usually do just fine with it. Best of luck...I know how hard it can be with a finnicky stomach :(
Kell Bell
 
Have the doctors tried to add medications that might help with the nausea. Maybe acid reducers or something like Reglan that move the food more quickly out of the stomach. This is just a thought and certainly I have no medical training that qualifies me for anything except offering possible questions for your doctor. My husband has a peg tube and we use the B'ham doctors. Thankfully, he is tolerating the Jevity with no problems. Do you go to the ALS meetings at the Hoover Library? We missed the May meeting, but they had a nutritionist as guest speaker. If you haven't connected with that support group, you should really consider talking with Janet Thorn. We have found them to be a good support resource. She might be able to point you in the right direction if you questions. Let me know if you need her number. Good luck! Janis
 
Which tube is she using right now? Or is it a hybrid G/J tube?

It is important to know because the wonderful locals of this site are almost to a man G-tube users, and J-tube nutrition is different. You are skipping a lot of important breakdown and absorption parts of the digestive system, so blended regular food isn't a good plan to rely on.

How does she do her feedings? Does she use one of those 12 hour night pumps? They seem like they would cut down on nausea/pain, she could sleep through it maybe?
 
My mom had a lot of nausea when she first got her g-tube. We were giving her only formula (we tried both jevity and ensure) and water and she would get bad hot flashes. We started blending her regular food with extra water to make it liquidy and she has been doing great ever since. Some of the nutritionist we talked to preferred us using the formula but we had to do whatever we needed to so that my mom wouldn't continue to lose weight and blending regular food has worked for us.
 
is she geeeting a bolus feeding of a drip feeding...the bolus feeding is all at one meal while drip is a slow feeding. I have heard of people with feeding issues to get drip feeding to get used to the tube. My dad has the peg tube....and really is his ony option to have anormal meal.

and is true the types of food affect , certain tubes are made for certain thickness of food.
 
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