Jejunostomy feeding tube/Gastroparesis

[Jeannine]

Hello,

I have gastroparesis and I would like to know a
few things about J-Tube's.
Can you drink fluids when you have a J-Tube or
do you also get fluids through it?
What are the most common side effects to the solution?
Can you exercise for example: play tennis?
Is it possible to gain weight from it?
Are there any long term concerns about it?
How can you tell if you are ready to try solid
food again, do you have to have it surgically
removed to try?

Thank you so much for your time!

Jeannine

[HFHSm.D.-Gastro-rf]

A jejunostomy feeding tube is placed in the small intestine (jejunum) as opposed to a gastrostomy tube that is placed in the stomach.  It is possible to lead an active life with the Jejunostomy tube, but you must be careful not to have anyone pull on the tube.  WEight gain with the tube being used is quite likely if you take enough calories.

Having the tube in place does not prevent you from taking liquids by mouth or even attempting to eat solid food.  IF you can eat by mouth, then the tube remains an 'insurance' mechanism.  If after several months of eating by mouth it is evident that the tube is not needed, then it can be removed.

Complications of the tube relate to local risk of infection e.g around the tube.

This information is presented for educational purposes only.  Ask specific questions to your personal physician.

HFHSM.D.-Gastro-RF

[Wiley R.]

I've had a sub-total gastrectomy, ruh-en-y gastric resection; another 'replumbing' job which I can't rember the medical name for and lastest surgery was a job for severe gastric reflux. The reflux is gone! Problem now is that I am not able to eat enough qantity of food to maintain any weight. I am still loosing weight and am suffering from malnutrition and an inability to absorb any nutrients from the food I am able to take in. The surgeon put in a J-Tube when he did the anti reflux surgery which later became infected and popped out anyway. I am at a loss and it seems as though the doctors are too. I am slowy starving and also suffering from an increasing case of depression. Nothing I try to do which is suggested by the doctors seem to help and I am about ready to just give up and go on with what little quality of life I have before it gets any worse. I just hope Social Security Disability can approve my claim before it's too late!!!
What do any of you have to offer in the way of an alternative to another feeding tube and/or something/anything I can try? I am already taking all the supplements I can afford to buy so no more of those please.
Thank you;
Wiley

[Richard of Michigan]

I have jejunostomy.  I am currently on TPN IV nutrients therapy.  I have Groshong catheter which feeds me the TPN. The catheter is slightly prone to infection, which I have been unlucky enough to have four times and resultant replacements.  I am currently trying to get in a study program at the "Nutrional Restart Centers" in Boston, (1-800-867 6761).  They use growth horomes, glutamine, and modified diet to grow new small bowel cells and enhance nutrient & fluid absorption to where I poosibly get off TPN.  This is an alternative (I hope) to small transplant which I am also considering. Presently, without the TPN, I simply die. I hope this helps.  Albeit, try to have good day.

[[e-mail]]

My husband has just had a J tube inserted after tests found he had no motility and nerve function in his esophagus above the anastomosis joining his esophagus to his small bowel (after total gastrechtomy several years ago). My questions are:
1) whether there is a support group for J tube users in the Detroit Metropolitan Area.
2) Also, and related, is there a medical supply-home health service in this same area which anybody recommends over others? 3) What is the line for reporting problems when I get him home? (after two weeks in the hospital it is still not clear what the lines of reporting will be from the home health provider/medical supplier of the enterel feeding system and his doctors - the gastroenterologists seem to think that only the swallowing is their responsibility, the suregon thinks the site of tube entry and not tube is his, the oncologist overseeing the case doesn't have expertise on tubes). Help!

[carissa]

I am a 22 year old with ideopathic gastroparesis for six years.  When
I was 18 I had a J-tube placed because I had lost down to 74 pounds
and could not eat anything.  I also could not take any medication
because of a heart problem that sent me into cardiac arrest 3X from the
drugs.  My doctor at the University of Virginia Hospital placed it
in me along with temporary experimental pacing wires (I was one
of only 9 people in the world to participate in this study).  The pacing
study directly precended the permanent pacing study which is going on now.
Anyway, yes, you can eat and drink whatever you are able with a J-tube in.
My doctor encouraged me to try to eat as much as possible.  The J-tube will
help you gain weight and can be a life-saving measure (it was in my case).
I had the J-tube in for two years and then my doctor took it out.
My weight has fluctuated since, but so far I have not had to go back on it,
and hope I never have to.  It does not have to be surgically removed.  The doctor
can do it right in his office.  My happened to fall out about 10 times
over the two years and I had to go to the ER and get it replaced immediately so
my hole would not seal up.  It's perfectly fine for you to execise with it in.
Other than enduring nightly feedings while it is in, you can lead a fairly
normal life with it.  I have also been on TPN and that was a nightmare.  My main
complication from the tube was infections which can be very painful.  I also had
a probnlem with sever pain in my intestines from it, which was partly due to the
trauma placed on my body by having to have it replaced so many times.  I was
visited by Home health nurses for several months after my surgery,
but eventually they decided I could take care of it myself, which is what I
kept trying to tell them!  The J-tube is not a great experience, but
it's better than some of the other options. It kept me alive. If you
have any more questions, feel free to e-mail me at ***@****.

[FridaySunshine]

Interested in hearing from parents that have a child with a GJ-Tube - what are the pros & cons.

Child is 8 years old with a G-Tube and is unable to continue with normal feedings through the G-Tube at this time (vomitting etc.) Doctors are recommending that a GJ-Tube be implemented to replace the G-Tube and bypass the stomach completely.

Concerned - heard from other parents that this procedure had many cons - please provide your input ASAP

Thanks

[tracy in [a]

my daughter has been on ng tubes,g-tube, jtube and npo for 9 months then back on g-tube. she is three years old.  it becomes a way of life.  the j-tube was more of a problem because when it fell out or was pulled out we had to go to pediatric hospitals. even university of virginia waved us on to duke while we were on vacation.  once back on g-tubes you can change them yourself and the clock isn't running for the sight to close. you go everywhere with a spare set.  my daughter relies onit for 99.9% of her nutrition hand is on neocate one + formula very special.  thank god for insurance.

if there are any parents out there living this life i would love to hear from them ***@****