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Lost and confused

MinTN's picture
Posts: 2
Joined: Oct 2016

I just had a total gastrectomy about a month ago.   I was discharged without much follow up at all, other than the appointment to remove my staples.  I haven't met with a dietician or a nutritionist and I have no idea what I'm supposed to be doing.  The doc did say to eat 6 to 8 small meals a day.  A nutritionist in the hospital threw me a couple sheets of paper before discharge, but they are not very helpful.   I don't know portion size, though yesterday I DID manage to get a decent information sheet emailed to me from a nutritionist at UT so I think I'm on the right track..    but I don't know how many calories, how many carbs, how much protein I should have in a day.  My daughter had weight loss surgery about 6 months ago and they gave her all that information, so it would seem important for me to have that as well.  I have been going by what she does (to a degree) but I wish I had my own guidelines.   They said to introduce new foods a little bit at a time, but they don't say what and sometimes I just end up being really sick.   And no  :)  I'm not introducing cake and cookies..    the thought of sweets like that make me feel ill.   I've lost almost 30 lbs in the past month and while I am always grateful for some weight loss, I worry that it won't stop coming off.  I was told I had a stage 3 tumor but that they believe they got all of it yet I am terrified it is going to come back.   I have such a hard time sleeping because I can't stop thinking of dying and I just don't want to.   I don't know what anyone can say to help me or make me feel better, but if anyone has anything helpful to say, I am all ears..    Thank you for listening (reading).

Posts: 5
Joined: Aug 2016

I had a total gastrectomy back in April for cancer, and I found the book by Dr. Peter Thatcher "The Art of Eating Without A Stomach" to be the foundational information I needed. 

His Website: http://www.theartofeatingwithoutastomach.com/

His book on Amazon: https://www.amazon.com/Art-Eating-Without-Stomach-Gastrectomy/dp/1502509350

My life also has been shaken to the core with this cancer as well, and I am currently on a feeding tube (J Tube) to keep my weight stable (I have lost 85 lbs to date).  I'll be straight up with you, if it wasn't for my faith this whole thing would be confusing.  My advise is to get a group of friends around you if you haven't already, that will sit by you through thick and thin and put their arms around you and cry with you if need be.   For me that has been my local church and extended family.  

I hope this helps.  All the best!  

aurthor's picture
Posts: 10
Joined: May 2016


go to this web site tons of infor on diet and such. The book sykora recomneded is good to I have it

Posts: 2
Joined: Dec 2016

Hi. I felt the same you did.I had total gastrectomy back in March of this year. nurses were nice but they had no clue what to do with me. It helped me that I am a nurse .  everything about diet is learned through the Internet and listening my body. I was diagnosed stage 3b as well. I do wake up nervous about the whole thing. 

Posts: 6
Joined: Dec 2016

Hello. I hope you are doing well. First off, i was diagnosed with stage 3 gastric adenocarcinoma. im currently on my first chemo and will have to get two more before a total gastrectomy. Will they stage me again once they they remove the stomach? is it a possibility that they can upgrade me? The initial stage 3 was through a pet scan and laporoscopy.

How are you doing? Are you able to move around more? Are you able to eat a little bit more?

Thank you and wish you the best in your recovery.

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