Friend of gastrectomy patient - Any suggestions?

[exfriend]

My friend was diagnosed with Desmoplastic Small Round Cell Tumor (extremely rare) back in March.  In order to save his life, he had a total gastrectomy two months ago.  He is doing well but is having problems with dumping and is generally not feeling well about the prospect of dealing with this for the rest of his life (He's only 38).  He also has to deal with this while he continues with chemo as well as a stem cell transplant.  I am looking for someone who might have had a total gastrectomy or knows someone who has dealt with it and has come up with an effective way of dealing with this.  The only solution is through diet, yet the dieticians that my friend meets with don't even seem to know how to address the problem.  Please help!

[kellieb]

Hello, I don't know much about this disease/procedure BUT...my daughter has a feeding tube and at one time they had it directly in her small intestines...a jejunostomy tube.It is about as big as i.v. tubing and some people need continuos feeding some can be fed at certain times. My daughter is on Osmolyte HN. Those nutrionists or dieticians are supposed to know about calories and things like that but not so much as how  you're fed. I have had the same problem. You would or should consult a GI Dr. they are the experts in this area. Don't worry it seems overwhelming but it really isn't. I wish your friend a complete recovery and please keep us updated on his condition. It will be hard at first but it gets better as healing takes place. They may even be able to make an artificial stomach out of his own muscle tissue...you'd be surprised what they can do to help people..it's just finding the right Dr. Anyway Good Luck! I hope I was of some sort of help!

[gramag]

I had a total gastrectomy 2 years ago.  Tell your friend to hang in there and take just 1 day at a time right now.  His system is going  through a lot.  I know nothing about his disease but would be willing to  offer any support I can.  As far as the dumping syndrome, I know how uncomfortable he is.  It does get more tolerable in time.  I'm assuming he still has his feeding tube at this point!  Sometimes the formula is even too rich!!  Besides not eating any sugar I sometimes sipped on warm peppermint water.  That seemed to help a little.  If nothing else, just to smell the peppermint.  Hope this will help a little.

[JackieG]

You might want to try the following WEB sites and see if they offer anti-dumping diets:

www.outputprinting.com/clients  

From Jackson Gastroenterology office in Pennsylvania:
www.gicare.com/pated/edtgs09.html

I also recommend that you access the Association of Cancer Online Resources ("ACOR") site listed below for additional information, including stomach cancer internet support groups.:

http://listserv.acor.org/archives/stomach-onc.html

best wishes,
Chicken Soup

[exfriend]

Thanks everyone for your suggestions and help.  Yes, he still has his feeding tube but after his last round of chemo, he had a bad infection surrounding the tube that put him back in the hospital for a week.  The doctors are considering taking out the tube if he has another bad experience with an infection but this is worrying him since he won't get the same amount of calories without the tube...especially since eating is giving him so much trouble.  I'll keep you all updated and pass along the information to him.  Thanks everyone!

[anti spaz]

http://www.iknowthecause.com/info/index.mv
go there ask