Enteral feeding for my 15 year old

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55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 11/21/2009 7:40 PM (GMT -7)   
My daughter was dx just over a year ago adn seemed to be improving, but in October the severe nausea returned as well as all the other symptoms; exhaustion, weight loss, and abdominal tenderness.  She hasn't begun with diarrhea, though.  No matter what she forces herself to eat, she still loses approx. 2oz per day.  (though a month ago lost 5 in a weekend and hasn't gained it back).  Her doc is running some tests after finding a small mass where her large and small intestine meet.  Put her on an intestinal antibiotic.  All her markers indicate a moderate flare.  No obvious blood loss which is good.
Her doc has advised us to start enteral feeding this December at night.  He is trying veyr hard not to put her back on prednisone, but has discussed trying methotrexate in place of 6mp.  shakehead
Anyone else out there have tube feeding (through the nose), and want to share your experience? 
 
Thanks ,
Jen
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 11/21/2009 7:47 PM (GMT -7)   
I would ask about TPN via a PICC line rather than going the nasogastral tube route. It is one heck of a lot more comfortable and really doesn't interfere w/daytime activities. We ran mine from 6PM to 8AM.

I spent 6 weeks on a NG tube back in the late 70s and ended up w/3 very painful areas. When I complained about them I was pretty much told too bad, so sad. I finally pulled the darn NG tube out myself and sure enough, three bloody rings right where I had been complaining of the pain: the nose, the sternum area and the esophagus/stomach juncture. I refused to let them reinsert another.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 11/21/2009 7:53 PM (GMT -7)   
WOW!!!! THAT IS HORRIBLE. I WILL ASK about TPN INSTEAD. IS THAT SOMETHING WE CAN DO AT HOME?????
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/21/2009 11:35 PM (GMT -7)   
I don't think you should necessarily let one person's bad experience, from the 1970s, put you off.

There are good reasons to go with n/g feeding rather than TPN. TPN carries risks in itself, such as infection. There's also some evidence that the gut is more likely to heal with n/g feeding than with TPN... though both have good success rates, I believe.

You might like to click on the "nutrition" link in my signature to find some threads where other members have shared their stories with enteral feeding, TPN etc.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 11/22/2009 4:50 AM (GMT -7)   
I would agree. Make sure you consider several opinions, not just one bad one. Not to fault the previous poster for relating his/her experience. I think you need to find out what the "small mass" costitutes. You would want to rule out an abscess. It isn't likely, but did happen with my daughter. 
 
Tom
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/22/2009 11:46 AM (GMT -7)   
I echo Ivy. TPN is usually reserved for times when enteral nutrition can't be used (total bowel blockage, for instance), because of its potential side effects (infection, blood clots, liver problems). Plenty of kids find it perfectly manageable to insert their own nasogastric tube in the evening and take it out in the morning. The other option is to drink the feed by mouth, but patients who tend to have frequent nausea, like your daughter, often do much better with tube feeding because the formula can be pumped in very slowly, making it easier to absorb. Whether taken by mouth or by tube, enteral nutrition can be a great way of reversing weight loss and controlling a flare.

55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 11/22/2009 2:11 PM (GMT -7)   
I thank yoiu all so much.  All very helpful info.  My daughter is actually looking forward to the effects of the tube feeding and wants to start sooner than later.  I am so glad our doc doesn't just jump into prednisone every time she has a problem.
 
Thanks again,
Jen
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 

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