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In a message dated 6/18/2003 5:25:43 PM Eastern Daylight Time,

bsmiz@... writes:

> He is suggesting that we put in a J tube and go to an element diet

> that bypasses the stomach..thus giving both stomach and pancreas a

> chance to rest.

>

Hi I had a j tube and my experience was a negative one. The surgeon told me

before he placed the j tube in my bowel that it was my choice if I wanted the

j tube put in and I told him I had to try to do anything that I could since I

couldn't eat. He told me that the j tube being in the bowels would upset the

pancreas and I wouldn't be able to tolerate it. He said the bowel is a part

of the digestive system and with the nutrition passing through the bowels that

would effect the pancreas as well. I went for the j tube surgery and tried as

hard as I could to endure the feeding but I couldn't take the sickness from

my pancreas due to the j tube. If I kept the pump on a very low number and

only permitted the nutrition to go in very slowly then it wasn't too bad but if

I

upped the rate of delivery of the nutrition then I became very sick. I

didn't have a pancreas attack but I was very sick anyway. I tried to keep the

rate

low and live with the j tube but with the rate low I wasn't receiving enough

nutrition. Maybe others who have had a j tube didn't have the negative

experience that I had. I hope that Will will be able to tolerate the tube

feeding

much better than I. Good luck and I am sorry to give you my bad news about my

problems with the j tube. Shirley

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Hello all,

It's been a while since I posted. We've been at Boston Children's

since last Friday under the care of Dr.Fox for evaluation of pain,

pancreatitis and other GI issues.

After exhausting several tests and possibilities Dr.Fox believes

that Will's pancreas is the root of the continuing pain issue. A ct

scan showed the head of the pancreas as abnormal. His enzymes are

within normal limits. He still is considering this an acute case

that is lingering.

He is suggesting that we put in a J tube and go to an element diet

that bypasses the stomach..thus giving both stomach and pancreas a

chance to rest.

This seems like a huge challenge for Will's usual lifestyle, but the

pain has been intolerable.

Anyone have experience with this type of treatment?

Thanks,

Beth

mom to Will

pancreatitis first diagnosed 4/25/03

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Hi Beth,

I'm glad to hear that Dr. Fox is caring for Will. We did try the J-

tube feedings. Does Will have a G-tube? Please don't tell Dr. Fox

that I'm giving you advice. Joey had a G-tube already, so he changed

the G to a GJ tube. It only lasted a few days before the J-part of

the tube migrated back up into the stomach and we were pumping

formula right into his stomach which was what we were trying to avoid

in the first place. If Will does have a G-tube and you decide to go

the same route - be sure and check the g-tube on a regular basis for

formula. Just aspirate from the g-part of the tube. After Joey's

surgery he had separate G & J tubes and we started feedings through

the J-tube and he tolerated it very well. The risks involved with J-

tube feedings are so much less than TPN. I have read a lot lately

about this being the preferred method of nutrition. It's better to

keep the intestines working, too. I will be at Children's on

Friday. If there is anything I can bring you or do to help you,

please let me know. Hang in there!

Suzanne Wool

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