What would you do? Orask the Dr. to do?

By stekcsf
Posted June 17, 2008 at 11:13 am · 4 replies
In Coping with chronic illness

Hi all!
My 11 yr. old daughter has GP. But the Dr just did the monametry study a few weeks ago and said her intestines look fine. Then they placed a J tube, kept the G tube open to drain. She is still on TPN's due to the fact that she says her J feeds hurt and she basically can't do it. She's on and off thoses J feeds at a rate of 20. She's on elacare and pedilight. which is very broken down formula. I know some of you can't tolerate our J feeds either, why? Shouldn't she have at least better weeks and do it at least at 20 every day? She doesn't have psydo intestianl obstruction.....or at least it didn't show on the study. What should i do? anything i should ask the Dr. to test her on? Maybe the capsel study? He just shakes his head and tells us to dot he best she can and to keep trying. I love him, but not sure if he's jsut thinking it's all in her head as far as intestines go. I don't know what to do!!!!

Hope all you hospital gals get out soon!!!
thanks tricia

4 replies

Oldest first
Newest first

By chewy1
Posted June 17, 2008 at 10:29 pm

Tricia,
I'm so sorry to hear your daughter is going through all of this and at such a young age. I can't offer any advice on the tubes and feeds because I have never had any but hopefully someone on here will have some answers.
I don't know what tests and such that your doctor has done but I really think you should persue more answers...it may require going to a big medical center or somewhere like Mayo but if your doctor is done all he knows to try, then it's time to look for the help somewhere else. Even if you love your doctor and have a lot of faith in him...it isn't wrong to get other opinions. I love my doctor too, but he, himself is the one who will reach a point he is out of ideas and will start trying to find someone else to help.
I really hope you can find help for her soon. No one should have to deal with this condition but it must be even harder to understand the "whys" when you are so young.
Good luck
Judy

By michdey
Posted June 18, 2008 at 12:24 pm

I have been doing tube feeds now for about two weeks and I thought it was just me but they do hurt. We tried to turn down the rate, dilute the Peptatmin (feed) and nothing seems to work. When it got real bad last week, I was having diarrhea after every feed. I also was vomiting everytime I tried to take in anything by mouth. I started to feel dehydrated and getting the room spins (Like when you are drunk) and finally called the ambulance to take me in to the hospital.. They determined I have C Diff which is a deadly bacteria that can get in your stool most of the time by overuse of antibiotics. So, they gave me Flagyl, another antibiotic, and after a few days I am feeling better. I am feeling a bit hesitant to pickup the tube feeds again because at the end they hurt did bad but I need to convince myself I was sick and that is why it hurt. We'll see tonight--wish me luck!

By stekcsf
Posted June 19, 2008 at 8:56 am

michdey
did you start tube feeds last night? curious to how you feel?

thanks tricia

By michdey
Posted June 21, 2008 at 5:46 pm

I have resarted the tube feeds and am having the same problems. I am having terrible cramping and diarrhea. I am just trying to get through them and sometimes, I skip them all together because I don't want to face the pain of them. I don't understand why they hurt--I have had CT scans and x-rays and there is no blockage, no infection around the tube site, the tube seems be going through the intestines fine. So, I am just trying to grin and bear it at this point--I haven't told my doctor about it again because I know there is not an alternative right now until I have the pacer surgery in July. I hope things are going better for you out there.

Michelle

4 replies

Add to the discussion

You