CancerCompass message board discussion started by Total Gastrectomy on 1/21/2008 http://www.cancercompass.com/message-board/message/all,19964,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Patient: Age:  66 yrs. oldOperation:  Total Gastrectomy due to bleeding gastric ulcerPatient 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?  Total Gastrectomy Mon, 21 Jan 2008 00:00:00 GMT  On 1/21/2008 totalgastrectomy wrote:Patient: Age:  66 yrs. oldOperation:  Total Gastrectomy due to bleeding gastric ulcerPatient 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 francenao123 Wed, 23 Jan 2008 00:00:00 GMT Francena,Our good wishes for a speedy recovery during Daves' post-op.  Iam not the patient yet observing a patient.  My research is to helpothers cope with what is about to happen as well as gather informationfor this particular patient.   This particular operation wasperformed many times yet in the last twenty years the fatality rate haslowered.  In this day and age, a total gastrectomy is a fairly commonoperation to use in various situations.  Anxiety is common for thefamily and patient of such surgery.  Education and patience can helpthose avenues.  Before the operation, the doctor will tell youthe risks as he should.  After the operation, the patient is wheeledinto ICU.  These are the common things that you will experience aftersome or the total gastrectomy operation:1.  Discomfortingwatching your loved one with a tube in the nostil area and or throat. These tubes are normal in some operations but most likely are seenafter a total gastrectomy.   The patient would be given pain medicationto help with any throat of bodily pains to maintain any discomfort. What you will hear?2.  The patient after some operations andafter a total gastrectomy operation will repeat the a few words such as'help me' after surgery.  The brain is still getting over the fact thatan organ has been removed or the bodily changes that occurred throughan operation so mentally, the patient will appear scattered orpsychologically 'lost'.  The patient after a couple days to a coupleweeks should slowly 'come out of it' and as time goes on, even afterreleasing of the patient, it may occur as if the patient is at timesforgetful, scattered or a dash confused.  This is fairly normal for thehuman brain is 'rearranging' to adapt to the new 'you'.  If there aredifficulties with patients behavior then contact the doctor and yourprimary doctor.  Medications for pain can be given as long as it takesand 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 goldenquestion to the patient, 'are you confused?' upon release.   If someonewas confused, how would they even know that they weren't?  Patientclaimed to nurses that she was 'fine' and encouraged to 'go home'. Nurses decided to 'take her word for it' and released all informationto patient before release without speaking with the family membersabout 'care after being at home'.  Upon our visit to the doctors officeto check on the wound after being home for two weeks, the patient tolddoctor that she had felt weak and confused.  Then told the doctor thatshe was ok.  The doctor looked at the feeding tube that layed outsideof her belly and asked if it were there just for decoration.  Thepatient did not know what to say since she did not even know what itwas.  The doctor explained to her that it was a feeding tube to 'makeup' for any lack of nutrition that she occurred during recovery.  Shetold the doctor that she would rather not use it and then confusinglystated that no one told her what it was in the first place.  Ask to beincluded in the process of release information.  Dave just may be askedif he is capable of handling any release information when he too may'forget' or you will miss an important skill to continue taking care ofhim. 4.  The patient will come home with an open wound that mayrequire a 'vac'...this continues the draining of the wound and it pullsup any liquids that are pulled out of the wound to help heal the woundfaster.  Some female patients call themselves 'stepford wives' whencarrying these mobile boxes that connect to a tube that is connected onthe outer wall of the wound.  You borrow these boxes and return themafter you are finished with them.  Patients usually wear them from acouple weeks to 6 weeks after being released from the hospital.  It maybring the patient down using these boxes but it keeps them alive and itwould not be forever.  Just get their minds off of the box, it shouldnot harm nor hurt them in any way.In time the patient I speak ofhas changed her intake of food.  Limiting drink intake helped.  Mostproblems listed above about patient is slowly going away.  Justremember, Dave can not have fried foods, it takes food a while to 'godown and pass through' since he would not have a stomach.  Spicy foodscause problems too.  Six small meals a day or break it into Eight on alesser scale.  It is a lifestyle change and in order for the patient tolive a less hassled life without a stomach, it just depends on whatthey 'find' that they can tolerate and 'process'.  Start with anutritionist and gather a list of foods that match proper care.  If youfind that a food is causing problems like more nausea and such, then donot let Dave eat it because it will occur over and over again until hissystem adjusts to the bodily change.  Patient today had friedchicken minus the skin.  Reaction was sickness.  Spice can soak intofoods and through the skins of the foods.  Next update:    Total Gastrectomy Thu, 24 Jan 2008 00:00:00 GMT 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. Total Gastrectomy Thu, 24 Jan 2008 00:00:00 GMT 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 VintageLadyJ Thu, 24 Jan 2008 00:00:00 GMT 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. Kristennyc Thu, 24 Jan 2008 00:00:00 GMT 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 VintageLadyJ Fri, 25 Jan 2008 00:00:00 GMT  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.JennI 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.    claudia1 Wed, 30 Jan 2008 00:00:00 GMT 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 VintageLadyJ Thu, 31 Jan 2008 00:00:00 GMT  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?.JennYes, 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  claudia1 Mon, 04 Feb 2008 00:00:00 GMT Hi,I hear ya....our mom's are very similar. I just had a baby girl and she went in the hospital the day after I came home. She was so excited to be with me in the room while I gave birth. She is the type of mom that has so much energy and she sings and dances for all of us all the time and now she can't do that. She can barely hold my daughter and when she does and she sings to her its with such....tiredness. So far the doctor said they saw something but not sure what. A polyp, etc. Anyway they are doing further tests on her next week. She foamed all night the last two nights. So she has not eaten. She is down to 99 pounds. I bought Wii, the nintendo game, so I can play it with her in my house. I played Tennis and bowling with her. It kept her spirits up and she had fun. So I guess we will see next week. Thanks again..and please let me know how everything is on your end as well.Jenn VintageLadyJ Tue, 05 Feb 2008 00:00:00 GMT Hi! Thought I would share some of what I've been through with the endoscopy/GI stuff with my dad. He, too, had some difficulty swallowing and had numerous opinions and scans and always got that "blank stare". Even from specialists. After 6 months of growing difficulty swallowing and constant throwing up, another endoscopy was done and the doc finally ran into a blockage. Here's where the story takes a difficult turn... During the 6 month stint with all the issues, he had numerous scans that all came back clean. It was apparent the docs were looking for a significant tumor or blockage in the esophogas or small intestine. Although these scans were all fine and he was still considered in remission, there were tiny cancers growing all over his abdominal wall too small for the scan to indicate. So, when the GI docs came across this blockage, they could not biopsy as it was growing on the OUTSIDE of the esophogas. It was literally blocking the passage for food and all liquids (saliva, etc.) were building up and every hour he would have to spit up. Forceably. He opted for an exploratory surgery to see if teh mass could be removed but, as the surgeon suspected, the cancer was back and he could not even get to the mass causing the problem and recovery from any more surgery would likely have killed him. SO... stay faithful and expend ALL resources possible to find the problem as early on as you can. Be very persistant and if all else fails, consider an operation to find the problem. This seems to be a pretty common issue with no explanations. And I can promise you do not want your mom to live with such restrictions. Although my dad's cancer is back, it is the dehydration that is causing him to have no quality of life and I think it couls have been avoided to this extent, had we pushed for an operation eralier on. Just something to consider. Good luck Betz08 Tue, 05 Feb 2008 00:00:00 GMT Hi,Thanks for the advice Betz....actually my mom got a call today and supposedly now they don't think its a problem with her esophagus but with her small intestines. I don't know what to believe anymore. Any way she is taking more tests next week so I guess we'll see what the outcome is on those tests.  I am not going to allow her stop until we get an answer that makes sense. Thanks again. Jenn VintageLadyJ Wed, 06 Feb 2008 00:00:00 GMT Day : Feb. 9th, 2008Patient in time has less nausea yet doc has lined up one last test to see if patients gall bladder needs to be altered or taken out.  She is weak.  Mind you that she had taken Chantix, the 'wonder drug' shortly before this situation unfolded.  Her ulcer bled which led her to having her stomach taken out after one month of completing Chantix.  I did my own research to help others and started Chantix to see if it would show any signs of dangers to the takers.  I have all urges after taking them for almost two weeks...no difference.  The dreams I had before Chantix were many and I remembered them MOST of the time.  Last night I had a dream that the end of the world came.  THE END OF ALL, not just me and a selected few.  In the earlier days of those taking LSD, there were the same psychological dreams occurring.  I garentee that Chantix may have created this downfall of the bodies system and if it doesn't do that, it will 'awaken' a part of the brain in the same way LSD does.  It is a dangerous drug on many levels, you must beware.  I called Chantix company yesterday and taped the conversation with the pharmacist.   There are indications that it can cause gasterological problems as well as respiratory problems that may or may never go away.  I have done my research to find that people have had gall bladders removed during and after taking Chantix.  Reports of breathing difficulties, fluid build up, psychotic problems, confusion and etc...This is a very dangerous drug with life long results...the only reason you do not hear about this is due to the fact that they just started testing a few years ago to begin with.  They would have to test it for over ten years to know the long term damages yet when a patient has to have a stomach removed, a gall bladder removed, ulcers that start to bleed and etc...that is long term.  For those with total gasterectomy that have had Chantix before getting one, you need to contact an attorney.  We need to stop the supply of the contributor so that others do not hide the truth of how this all happened in the first place.  Smokers end up becoming victims of the cause and not the addiction in the end...don't let them fool you...withdrawals happen yet one does not go through such things without chemical additions in their systems.  No place for ignorance.  All the same, patient is healing yet weak. Total Gastrectomy Sat, 09 Feb 2008 00:00:00 GMT For the final chapter to this strange tale, patients skin is healed 99%, Nausea lessened by 50% and patient is now using the results from minor self physical therapy.  Once patient changed behaviors and lifestyle to accommodate no stomach, recovery became more tolarable as well as a healthier recovery.  My conclusions to quitting smoking remains the same in which that those who quit smoking before an operation, whether willing or not, will go through the withdrawals of cigarettes physically.  In return, can confuse a situation as to where the 'problems' stem from, 'the recovery process or the withdrawal process.'  All in all, to answer the problems of this patient, they all contributed to the system adjustments along with withdrawals from previous medicines and quitting smoking.  She changed what she ate and maintained her vitamins in liquid and pill form.  The intake of 'ensure' was 5 - 6 bottles daily.  After a week and a half, patient began to feel of herself once again with more energy and less nausea.  She still spits up a fluid type base yet the foamy textured fluid ceased.  She is still recovering yet it is plain to see that she is in the tail end of it.  Her weight finally maintains at 140lbs.. Conclusion to total gastrectomy:  A total gastrectomy can be successfully done if certain lifestyle changes are applied.  End of Story.  Total Gastrectomy Mon, 18 Feb 2008 00:00:00 GMT RE: Education is key to a family in this situation.All information was compiled through personal accounts and experience. Surgeon : responsible for surgery and recovery of the area of region of surgery alone.  Primary: responsible for all else, including the injections of B-12.   Always talk to the doctor (primary) about setting up B-12 shots.  Taking one bi-weekly can help and also is accepted by some insurance companies.  Communicate with your primary doctor.  Liquid vitamins as well as vitamin D, Iron and etc.. should be taken daily to maintain a vitamin intake since the patient doesn't get them as they use to.  Given time helps as well with a little bit of physical therapy.Do not stress out trying to figure this out.  Less stress is best.  Simply apply all instructed or helpful direction to better the situation you are going through.  Good luck and patience.   Total Gastrectomy Mon, 18 Feb 2008 00:00:00 GMT