CSN Login
Members Online: 2

You are here

Total Gastrectomy - Need to chat

MICHELLEVH
Posts: 1
Joined: Jul 2014

Hi everyone. I am a little over 1.5 years out from my total gastrectomy and I am just looking for some people to chat with for support. I am having several nutrition, medication absorption and general problems and can't find any local support. I sould love to just chat with someone who is in the same situation. Thanks

aha263's picture
aha263
Posts: 3
Joined: Aug 2014

My surgery was performed on June 16 of this year so I'm still adjusting to the new stomach. I also started chemo about 3 weeks ago. Since surgery, I'm down almost 15 pounds. I have no appetite but I know I have to eat. I like Greek yogurt with fresh fruits. Turkey melts with tomato is my favorite new food now. My mom puts chicken and rice in a blender and add it to chicken broth. I've been trying differnt suppliments (protein whey, ensure, etc) but I can't drink any of it now. I used to when I was working out. But its like my tastebuds have changed and I can't stand the taste of artificial stuff, chemicals or sweetners. 

blondie_o0's picture
blondie_o0
Posts: 2
Joined: Dec 2011

Hi,

I had a complete gasterectomy in April 2011. I had gastric cancer stage 1b, after chemo, surgery and radiation I am now cancer free. After my gasterectomy I had a lot of difficulty learning to eat again. Today I have learned what works for my body and rarely experince any side effects. Many people on forums describe life after a gasterectomy to be unmanageable, I think it all depends, I am fortunate to say that I am ok :). Since my surgery I did have 1 complication, a bowel obstuction that landed me in to hospital (obstructions are usually rare side effects). This obstruction later cause an internal hernia which I may have to have surgery for. Overall I find life without a stomach to be managable. It is a learning experience, some foods will make you uncomfortable and it takes time for your body to heal and adjust. I have to take pancreatic enzyme with every meal to help me digest via my small intestine. I also need to take B12 shots every month to keep my energy up. Please feel free to ask me questions!!!

Geovanni
Posts: 1
Joined: Jun 2015

hi
It's been 2 weeks since the surgery
I'm having bad times
I would like to know how's life after the recovery
Do you have to eat every 2 hours?
Can you have beers?
You don't get hungry?
How do you know you have to eat or stop eating?
What is a normal menu for you?
Thanks a million

Ronnie C
Posts: 1
Joined: Feb 2016

I'm just wondering can you still drink as normal or do you have to take small amount at regular intervals

Artdog
Posts: 3
Joined: Jan 2016

Imtwnd to drink about 30 minutes after I eat seems to work best as for the amount I don't have any problems drinking a cup at a time

banoi
Posts: 2
Joined: Sep 2014

Hi. I'm a 9-yr total gastrectomy survivor. I checked with Kaiser Permanente in my area and found that they had Bariatric surgery support groups. Although a total gastrectomy isn't exactly a match to their elective weight reduction surgery, Kaiser let me attend classes because some of my anatomy was similar to their gastric bypass surgery. I found I also had similar difficulties with absorption of nutrients.  I gained knowledge and realized I was not alone in my struggles. 

Good luck. 

evelone1224's picture
evelone1224
Posts: 5
Joined: Feb 2016

had tg in August  2015. I have lost 35 pounds and have a difficult time finding things to eat Because I also have a hiatal hernia that was not fixed.  Anyone have any suggestions?

 

TexasRae
Posts: 1
Joined: May 2016

I just joined the CSN support group, and I am hoping to meet some other people that have experienced a Total Gastrectomy which I had as of Jan. 19, 2016.  This is a new world for me trying to figure how to adjust to eating and living with the lack of a stomach and new plumbing.  My surgery was performed by a bariatric surgeon and they keep advising me like I am on some kind of weightloss journey.  I have lost more around 25 pounds since January.  I need to stop the weightloss!  It would be great to have someone to talk to and get to know who understands and maybe together we can figure out what to eat and how to cope with our new bodies.

aurthor's picture
aurthor
Posts: 10
Joined: May 2016

I'am looking at possible having one of these procedures. I have found a ton of information on the net concerning diets after one of these procedures. And i will try them one by one until i get the reults I'am after. The strange thing is that I have seen a bunch of doctors so far and none of them have given me any advice about diet after one of these procedures. It does not matter to me though because i have never been the type to sit around and wait for somone else to do it for me and i'am not going to start now. This cancer caught me off guard the first day I was told i had it. But I'am back up and swinging.  May the lord bless you and  comfort you and I pray for all of you

CorgiMom
Posts: 5
Joined: Jul 2016

I was diagnosed with esophageal cancer in Sept 2015 & underwent pre-op chemoradiation therapy.  My surgery was on January 12, 2016.  Originally, my surgeon thought he would be able to remove the lower part of the esophagus & upper stomach; however, he ended up doing a full gastrectomy.  I was on a feeding tube through the end of April.  I did have a scar-tissue stricture that was dilated & relieved by a stent; the stent came out just a few weeks ago.  I'm able to eat small, moist meals, but I have no energy.  I also suffer from extreme rib pain where my ribs were spread during the surgery.  I have just started B12 injections and am working with a nutritionist to develop a diet of calorie/nutrient dense foods.  I drink Ensure, but it makes my pulse race and saps my energy.  Has anyone else experienced a similar reaction to Ensure?  I've lost 24 pounds and don't want to lose anymore.  Any comments about your experiences would be most appreciated.

s_sykora
Posts: 5
Joined: Aug 2016

I have stage 3 stomach cancer, and had a full gastrectomy in mid April 2016.  I currently have a feeding tube to the small intestine, but I am able to eat pretty well with no big issues.  It has taken me a while (3 months) to start understanding and "reading" my body's signals on all apsects of eating.  I sometimes drink ensure type stuff, but stay away from it if I can as I have the same problem of feeling sort of dizzy and wierd.  I am told it is because your food hits your digestive tract right away, and you feel the effects of what you drink or eat almost immediately.  It even happens to me with no-sugar hot chocolate as well.   I have a book I found called "The Art Of Eating Without A Stomach: How To Thrive After Gastrectomy For Stomach Cancer", (by Dr. Peter Thatcher,a doctor from England) that has really helped me.  From what my surgeon has told me it is 6 months before a new sort of "normal" is achieved, with additional improvements by 1 year, and further improvements by 2 years.  All the best to you and your journey!   Scott

cancer2016
Posts: 2
Joined: Dec 2016

hi. I am also stage 3. my surgery was in March of this year. I had a jtube and removed it after 8 months. it gave me a lot of problem. my new stomach is cooperating now and I take digestive enzymes to help me absorb nutrients. good luck and I am thankful for finding this site. 

alsnals
Posts: 6
Joined: Dec 2016

Hello. im due to get a tg soon. First of all how are you doing today? I need information about the TG. I am very scare and worried about the pain after the surgery. How long did it take for you to heal. How long was the pain?

Thank you

 

 

s_sykora
Posts: 5
Joined: Aug 2016

I had a TG about 8 months ago, and things are going well for me.  I am so thankful for life.  I have completed all my cancer treatment for now, and at this point I am thriving, but it took a while to get there.  The first few weeks after the surgery were definitly the worst, with there being a slow and steady progression of progress to feeling better.  The progress can only be measured in weeks or months, not days.  The first days and weeks after surgery were somewhat painful, more like big dull aches for me with the abdomen area seeming to be in a sort of "war" inside as everything gets used to the new plumbing.  For me I had lots of unexplainable dumping syndrome, abdominal cramping and pains, etc that seemed to get less frequent as time went on.  As time passed everything seemed to get better and better at a slow and steady pace.  For me, I felt much better from the 6th month on with infrequent pains and with most pains and symptoms being more predictable and not as severe.  I took the heafty pain meds the first week after surgery, then mostly tylenol after that.  I have had no pain meds for 7 months now.  That has been my experience, but it seems to vary quite a bit from person to person with some folks having long term problems of many different sorts.  All the best to you as you face down this challenge!  

Gary'swife
Posts: 5
Joined: Nov 2014

My thoughts are with all of you who have posted recently or are just reading. My husband struggled with eating after he had a total gastrectomy. After he finally was back to eating almost normally, we put together a website with every tip and trick we learned about eating again and dealing with various digestive challenges. I hope you will find our site to be helpful: http://www.stomachcancersurvivorsguide.org.

Gary also wrote a blog about his stomach cancer journey. Our friends found his humerous writing about a grim subject to be entertaining, so I'll pass that link on as well: http://garyolson.info
 
Wishing you all the best.
deliall
Posts: 2
Joined: Jan 2017

Hello and thank you all for sharing so much of you, your experience and struggles and hope that I feel from reading all of your notes.  My dad just got diagnosed and I'm trying to do all my due diligence because I know that I will need to be strong and help him through the journey.  And will need to help my mom too.  I posted about needing to find good referrals to oncologists at Kaiser (that's what my dad's insurance) because I'm looking for a 2nd opinion so if any of you have thoughts/suggestions please let me know.  But above all, thank you...I'm glad I found this site! 

Subscribe to Comments for "Total Gastrectomy - Need to chat"