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Total Gastrectomy

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totalgastrectomy
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Subject: Total Gastrectomy
Date: 01/21/2008

Patient: 

Age:  66 yrs. old

Operation:  Total Gastrectomy due to bleeding gastric ulcer

Patient underwent total gastrectomy, removal of total stomach and released 19 days after first admittance.  Home for a total of 32 days. 

Recovery details:  Patient has extremely low iron levels contributing to Anemia.  A B12 shot once a month is administered.  Opened wound with vac.  Eating wise she is eating smaller portions and intake.  Doctor appointments followed as directed.  

Complications: Patient can feel food as if it is 'stuck' in the chest area.  She has dry heaves and spits up white foamish liquid off and on.  Not on a constant yet much.  She feels abdominal discomforts.  She has diarrhea and no temperature.  She has emotional and mental confusion off and on and shows signs of being healthier at other times.

Ruled out: Any blockage through testing.  

To those who have experienced this, tell us where did this lead you to?  Any of these signs sound familiar? 

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francenao123
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Subject: RE: Total Gastrectomy
Date: 01/23/2008

 

On 1/21/2008 totalgastrectomy wrote:

Patient: 

Age:  66 yrs. old

Operation:  Total Gastrectomy due to bleeding gastric ulcer

Patient underwent total gastrectomy, removal of total stomach and released 19 days after first admittance.  Home for a total of 32 days. 

Recovery details:  Patient has extremely low iron levels contributing to Anemia.  A B12 shot once a month is administered.  Opened wound with vac.  Eating wise she is eating smaller portions and intake.  Doctor appointments followed as directed.  

Complications: Patient can feel food as if it is 'stuck' in the chest area.  She has dry heaves and spits up white foamish liquid off and on.  Not on a constant yet much.  She feels abdominal discomforts.  She has diarrhea and no temperature.  She has emotional and mental confusion off and on and shows signs of being healthier at other times.

Ruled out: Any blockage through testing.  

To those who have experienced this, tell us where did this lead you to?  Any of these signs sound familiar? 


Hi I am new to this and my husband is having his stomach removed the end of this month and 5 years ago he had 2/3 of it removed.  I hope you are ok and I hope to follow your progress and perhaps find ways to help Dave. God Bless you Francena

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totalgastrectomy
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Subject: RE: Total Gastrectomy
Date: 01/24/2008

Francena,

Our good wishes for a speedy recovery during Daves' post-op.  

I
am not the patient yet observing a patient.  My research is to help
others cope with what is about to happen as well as gather information
for this particular patient.   

This particular operation was
performed many times yet in the last twenty years the fatality rate has
lowered.  In this day and age, a total gastrectomy is a fairly common
operation to use in various situations.  Anxiety is common for the
family and patient of such surgery.  Education and patience can help
those avenues.  

Before the operation, the doctor will tell you
the risks as he should.  After the operation, the patient is wheeled
into ICU.  These are the common things that you will experience after
some or the total gastrectomy operation:

1.  Discomforting
watching your loved one with a tube in the nostil area and or throat. 
These tubes are normal in some operations but most likely are seen
after a total gastrectomy.   The patient would be given pain medication
to help with any throat of bodily pains to maintain any discomfort. 
What you will hear?

2.  The patient after some operations and
after a total gastrectomy operation will repeat the a few words such as
'help me' after surgery.  The brain is still getting over the fact that
an organ has been removed or the bodily changes that occurred through
an operation so mentally, the patient will appear scattered or
psychologically 'lost'.  The patient after a couple days to a couple
weeks should slowly 'come out of it' and as time goes on, even after
releasing of the patient, it may occur as if the patient is at times
forgetful, scattered or a dash confused.  This is fairly normal for the
human brain is 'rearranging' to adapt to the new 'you'.  If there are
difficulties with patients behavior then contact the doctor and your
primary doctor.  Medications for pain can be given as long as it takes
and with care, the patient will not become 'overly' dependent on them. 
At times the pain medicine is the culprit of feeling nausea.  

3. 
Biggest mistake of hospital nursing I find is when they ask the golden
question to the patient, 'are you confused?' upon release.   If someone
was confused, how would they even know that they weren't?  Patient
claimed to nurses that she was 'fine' and encouraged to 'go home'. 
Nurses decided to 'take her word for it' and released all information
to patient before release without speaking with the family members
about 'care after being at home'.  Upon our visit to the doctors office
to check on the wound after being home for two weeks, the patient told
doctor that she had felt weak and confused.  Then told the doctor that
she was ok.  The doctor looked at the feeding tube that layed outside
of her belly and asked if it were there just for decoration.  The
patient did not know what to say since she did not even know what it
was.  The doctor explained to her that it was a feeding tube to 'make
up' for any lack of nutrition that she occurred during recovery.  She
told the doctor that she would rather not use it and then confusingly
stated that no one told her what it was in the first place.  Ask to be
included in the process of release information.  Dave just may be asked
if he is capable of handling any release information when he too may
'forget' or you will miss an important skill to continue taking care of
him. 

4.  The patient will come home with an open wound that may
require a 'vac'...this continues the draining of the wound and it pulls
up any liquids that are pulled out of the wound to help heal the wound
faster.  Some female patients call themselves 'stepford wives' when
carrying these mobile boxes that connect to a tube that is connected on
the outer wall of the wound.  You borrow these boxes and return them
after you are finished with them.  Patients usually wear them from a
couple weeks to 6 weeks after being released from the hospital.  It may
bring the patient down using these boxes but it keeps them alive and it
would not be forever.  Just get their minds off of the box, it should
not harm nor hurt them in any way.

In time the patient I speak of
has changed her intake of food.  Limiting drink intake helped.  Most
problems listed above about patient is slowly going away.  Just
remember, Dave can not have fried foods, it takes food a while to 'go
down and pass through' since he would not have a stomach.  Spicy foods
cause problems too.  Six small meals a day or break it into Eight on a
lesser scale.  It is a lifestyle change and in order for the patient to
live a less hassled life without a stomach, it just depends on what
they 'find' that they can tolerate and 'process'.  Start with a
nutritionist and gather a list of foods that match proper care.  If you
find that a food is causing problems like more nausea and such, then do
not let Dave eat it because it will occur over and over again until his
system adjusts to the bodily change.  

Patient today had fried
chicken minus the skin.  Reaction was sickness.  Spice can soak into
foods and through the skins of the foods.  

Next update: 

 

 

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totalgastrectomy
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Subject: RE: Total Gastrectomy
Date: 01/24/2008
Note: Patient above received fried chicken when being told by another that it would be alright to eat it without the skin.  Once noted, patient was guided to NOT eat anything fried due to fried juices soaking inside of the food itself.
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VintageLadyJ
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Subject: RE: Total Gastrectomy
Date: 01/24/2008

Hello,

My mom is going through Exactly the same thing. The food getting stuck, the foamlike substance coming up. So far the doctor thinks it might be from...now an esophagus problem. Maybe it was damaged or something. If you would like to compare notes let me know.

Thanks, Jenn

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Kristennyc
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Subject: RE: Total Gastrectomy
Date: 01/24/2008
My father had Stage 4 gastric cancer, that was also in the esophagus. He vomited foam 100 times a day, and everything he swallowed got stuck in his chest. Please have them do an endoscopy.
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VintageLadyJ
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Subject: RE: Total Gastrectomy
Date: 01/25/2008

Hi,

They are doing that right now actually. She has all these tubes going through her nose down into her esophagus. Supposedly a dye they put in can tell if and how much of the esophagus is damaged. What really gets to me is how the doctors and specialists keep saying they are baffeled by whats going on with my mom. Yet, when you read everyones stories they seem to be going through very similiar situations. What is so baffeling to them? Don' t they research the enresults of taking out someones stomach. Is that it!! They remove it and tell you ...ok go live your life now. Sorry I am frusterated and nervous about what her results are.

Thanks for the info.

Jenn

Subject: RE: Total Gastrectomy
Date: 01/30/2008

 

On 1/25/2008 VintageLadyJ wrote:

Hi,

They are doing that right now actually. She has all these tubes going through her nose down into her esophagus. Supposedly a dye they put in can tell if and how much of the esophagus is damaged. What really gets to me is how the doctors and specialists keep saying they are baffeled by whats going on with my mom. Yet, when you read everyones stories they seem to be going through very similiar situations. What is so baffeling to them? Don' t they research the enresults of taking out someones stomach. Is that it!! They remove it and tell you ...ok go live your life now. Sorry I am frusterated and nervous about what her results are.

Thanks for the info.

Jenn


I know exactly what you mean, Jenn.   My mother had a full gastrectomy in Oct. 07 and is now on the last few days of radiation.    She's had one cycle of chemo a month ago which they said would be the only one she'd need.   Yesterday, they mentioned 4 more cycles of chemo (this means 20 more sessions).    When we asked why, the radiologist didn't have an answer except to show us something that explains that's usually the protocol.   We asked about our mother's particular situation and the doc just stared at us blankly.   We, like you, felt like "don't you guys do follow ups on your patients?  how can you not know these things, except in generalities?"

The surgeon who removed my mother's stomach told her while she was in the hospital recovering that she would have to have monthly B12 injections for life.   I was there at the time, but went back to my home (out of state) before she was released from the hospital.   I returned 2 months later and casually asked my mom about the B12 shots and who was administering them.   She said she hadn't gotten one.    I called her surgeon to ask "what gives?" and he said "she's supposed to have a B12 shot monthly."   And I thought, yes, we know that, so why wouldn't you good doctor give her the prescription for it before she left the hospital????!!  Here we are two months later and my mom had no clue.  He also didn't warn her about this esophagus issue that you've reported also, with gagging as the food tries to go down, and spitting up the foam.   All he's said about it is that the esophagus is just healing from the surgery.   Well, none of her esophagus was removed except to be connected to the small intestine, so the explanation doesn't make sense. 

Meanwhile, we tell the radiologist, the oncologist, and the surgeon repeatedly about this problem and they all look at you with blank stares.   It's simply unbelievable that these doctors do not have the answers or acknowledge these side effects and act like they've never heard of such a thing.    I, too, have been so frustrated about the doctors' lack of any information or help in dealing with these post surgery issues.   

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VintageLadyJ
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Subject: RE: Total Gastrectomy
Date: 01/31/2008

Hello,

 My mom has the B12 shots monthly as well. It sounds like all these doctors got together and decided that since they didn't know much they would tell all the patients to get B12 shots and eat very small meals. Yet they knew enough that the stomach has to come out. ?? Would you believe that she still did not get the results to that esophagus test. Now she keeps calling the office and they don't return her calls. Guess this doctor is now baffled. Thanks for listening. Sorry to hear you are going through the same stress. When it comes to our moms dosen't it feel like our whole world is crumbling?.

Jenn

Subject: RE: Total Gastrectomy
Date: 02/04/2008

 

On 1/31/2008 VintageLadyJ wrote:

Hello,

 My mom has the B12 shots monthly as well. It sounds like all these doctors got together and decided that since they didn't know much they would tell all the patients to get B12 shots and eat very small meals. Yet they knew enough that the stomach has to come out. ?? Would you believe that she still did not get the results to that esophagus test. Now she keeps calling the office and they don't return her calls. Guess this doctor is now baffled. Thanks for listening. Sorry to hear you are going through the same stress. When it comes to our moms dosen't it feel like our whole world is crumbling?.

Jenn


Yes, it does feel like that.   Mom was the ultimate of caregivers for the whole family and for anybody who walked through her home.   Never sat down, never quit.   Now, it's just heartbreaking to see such a strong and busy woman completely debilitated and unable to live the way she used to live.   Hopefully, these symptoms will subside over time and some normalcy will return to her life.   She says after all of her treatments she just wants to go to a beach vacation and relax with our whole family.

Please keep posting with news and updates and tips.

Claudia 

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