Eating after a total gastrectomy - and dumping syndrome

LesLemon
LesLemon Member Posts: 2
edited March 2014 in Stomach Cancer #1
My husband underwent 3 months of chemo followed by a total gastrectomy, and then 3 months post surgical chemo. We are 7 months post surgery now. He finished chemo 4 months ago and has had three throat dilations since with another expected in the next few weeks. We are having a lot of difficulty with pain relating to eating/digestion. He was on hydromorophine post surgery and weaned off a few months ago, however there is too much pain and the latest pain med caused suicidal thoughts and DEEP depression.
We need some guidence on how to eat, what to eat and what can we take to manage the pain. Does it eventually lessen? He has 3 types of pain, gas pain, sternum pain and abdominal cramping. Your experiences would be most helpful :) For anyone reading that is having the excess saliva issue, this ended after a few months and he spit it out, do NOT swallow it, if you can avoid it!

Comments

  • Mary1944
    Mary1944 Member Posts: 5
    #2
    Pain Meds
    My wife had total gastrectomy in August, 2007. She still experiences stomach cramps after eating a meal. She takes 1-5mg oxycodone (immediate release) when the cramps start. It takes about 15 minutes for it to take effect, but it does the trick. She does not experience cramps when she snacks, which she does often. I think the secret, besides what you eat, is how much you eat. We are still learning.
  • Tomissimo
    Tomissimo Member Posts: 37
    #3
    Mary1944 said:

    Pain Meds
    My wife had total gastrectomy in August, 2007. She still experiences stomach cramps after eating a meal. She takes 1-5mg oxycodone (immediate release) when the cramps start. It takes about 15 minutes for it to take effect, but it does the trick. She does not experience cramps when she snacks, which she does often. I think the secret, besides what you eat, is how much you eat. We are still learning.

    Well sad to say that trial
    Well sad to say that trial and error is probably your best judge. My Dr's always told me it's generally around 10 to 14 months that the digestive system seems to get some stability. Took me around 18 or 19 months before my stomach settled out. For me it was dessert type items (cookies, cakes, candy, chocolate etc etc) and milk that have and still are a major problem for me. (Last chemo treatment was in Nov of 07 post Surgery as your husbands were).

    Spicy food well somewhat obvious of a food to stay away from sometimes I can eat with no problems and others it causes me loads of problems. Then again I had that issue pre-cancer too.

    Depression is obviously common. Quite simply put life sucks after this kind of treatment. I know if I didn't have my wife nor my 8 month old daughter at the time I am fairly confident I would not have had the motivation to continue. Even with that motivation there were still times when I wondered if it was truly worth it.

    2 yrs out however I still get depressed and go through rough times because of the treatment. However I can tell you it does eventually get better eating wise. Though it won't seem like it.

    It may be pretty late, but anything with a lot of sugar should be avoided. I had grape juice early on after I could eat again and I was sicking up for 18 hrs straight. Caffeine was anothing thing I was directed away from. I got conflicting answers from the nursing staff but I drank Herbal Teas. I always enjoyed tea and it didn't upset my stomach.

    In total however, your husband has to relearn how to eat again. It's not the same. The concept of 'Hunger' isn't there for us. The time to eat is clock based, or sometimes if it goes too long there is an empty feeling or a gnawing feeling in the gut. Just something telling you that it's empty but not the same hunger that normal people feel.

    Spitting was a bad habit that my daughter picked up on sadly. My surgeon put the fear of god into me not to swallow so I have a tendency to spit frequently. A minor psychosis I am willing to deal with to still be here today though.

    You can feel free to contact me anytime. I can offer input from my experiences while each case is different the treatments seem to be the same I went through. Hopefully my mistakes can help your husband with his recovery.
  • vijendrasnv
    vijendrasnv Member Posts: 15
    #4
    Tomissimo said:

    Well sad to say that trial
    Well sad to say that trial and error is probably your best judge. My Dr's always told me it's generally around 10 to 14 months that the digestive system seems to get some stability. Took me around 18 or 19 months before my stomach settled out. For me it was dessert type items (cookies, cakes, candy, chocolate etc etc) and milk that have and still are a major problem for me. (Last chemo treatment was in Nov of 07 post Surgery as your husbands were).

    Spicy food well somewhat obvious of a food to stay away from sometimes I can eat with no problems and others it causes me loads of problems. Then again I had that issue pre-cancer too.

    Depression is obviously common. Quite simply put life sucks after this kind of treatment. I know if I didn't have my wife nor my 8 month old daughter at the time I am fairly confident I would not have had the motivation to continue. Even with that motivation there were still times when I wondered if it was truly worth it.

    2 yrs out however I still get depressed and go through rough times because of the treatment. However I can tell you it does eventually get better eating wise. Though it won't seem like it.

    It may be pretty late, but anything with a lot of sugar should be avoided. I had grape juice early on after I could eat again and I was sicking up for 18 hrs straight. Caffeine was anothing thing I was directed away from. I got conflicting answers from the nursing staff but I drank Herbal Teas. I always enjoyed tea and it didn't upset my stomach.

    In total however, your husband has to relearn how to eat again. It's not the same. The concept of 'Hunger' isn't there for us. The time to eat is clock based, or sometimes if it goes too long there is an empty feeling or a gnawing feeling in the gut. Just something telling you that it's empty but not the same hunger that normal people feel.

    Spitting was a bad habit that my daughter picked up on sadly. My surgeon put the fear of god into me not to swallow so I have a tendency to spit frequently. A minor psychosis I am willing to deal with to still be here today though.

    You can feel free to contact me anytime. I can offer input from my experiences while each case is different the treatments seem to be the same I went through. Hopefully my mistakes can help your husband with his recovery.

    Hi,
    It is important to first
    Hi,

    It is important to first avoid outside food and than go for fresh veggies and prepare it in less oil and go for salads without cheese or mayonese also, go for fresh fruit juices.

    But most of all, please, cheach the water you are consuming as, have filltered water only but I will strongly suggest you to have boiled water.


    Consult with your nearest doctor and with nutritionist also, so that, they will provide you with the chart of what to take and what not.


    Thanks!!
  • SusieCastle
    SusieCastle Member Posts: 1
    edited September 2018 #5
    I am curious of any feedback

    I am curious of any feedback you receive on this as I am 4 1/2 weeks post surgery and the last 2 days have been the worst for cramping pains that make me almost pass out, I tried to move from soft mushy food to soft regular food Mac and cheese, scrambled eggs and it went well I thought until last night now even swallowing water causes pain. Anything you find for relief I would love to hear. Thank you 

  • hansode
    hansode Member Posts: 1
    edited September 2018 #6
    SusieCastle said:

    I am curious of any feedback

    I am curious of any feedback you receive on this as I am 4 1/2 weeks post surgery and the last 2 days have been the worst for cramping pains that make me almost pass out, I tried to move from soft mushy food to soft regular food Mac and cheese, scrambled eggs and it went well I thought until last night now even swallowing water causes pain. Anything you find for relief I would love to hear. Thank you 

    Eating

    I had total gastrectomy in Jan of 2011.  Most of the discomforts that I experienced whenever I ate or drank was due to the food and or liquido getting stuck where they joined my esophagus and the small intestine together.  TOO FAST and TOO MUCH FOOD OR LIQUID at one time. 

    Even now, if I eat too fast or too much, I get a sharp pain in the middle of my chest, feel nauseous and shortness of breath. since it’s hard to vomit without a stomach, I use my finger and get rid whatever is stuck inside.  On drinking liquids, I still use a cup, never directly from the can or bottle. 

    Things take time, good luck

  • CKScitzs
    CKScitzs Member Posts: 1
    edited February 2020 #7
    hansode said:

    Eating

    I had total gastrectomy in Jan of 2011.  Most of the discomforts that I experienced whenever I ate or drank was due to the food and or liquido getting stuck where they joined my esophagus and the small intestine together.  TOO FAST and TOO MUCH FOOD OR LIQUID at one time. 

    Even now, if I eat too fast or too much, I get a sharp pain in the middle of my chest, feel nauseous and shortness of breath. since it’s hard to vomit without a stomach, I use my finger and get rid whatever is stuck inside.  On drinking liquids, I still use a cup, never directly from the can or bottle. 

    Things take time, good luck

    Eating--Thank you

    My hubby is 4 weeks out from his total gastrectomy.  He started on clear liquids with 6 ensure/day for 2 weeks; then went to soft foods 2 weeks ago. He was still to have the ensure, but cannot fit all of them in---since eating food with sustanance! Today, he is able able to try foods with some "chunks" since it's been a month. He had 1/2 cheeseburger and 4 hour later----he got heartburn and threw up!!!  Is this normal???

     

  • Lomitus
    Lomitus Member Posts: 4
    edited November 2020 #8
    CKScitzs said:

    Eating--Thank you

    My hubby is 4 weeks out from his total gastrectomy.  He started on clear liquids with 6 ensure/day for 2 weeks; then went to soft foods 2 weeks ago. He was still to have the ensure, but cannot fit all of them in---since eating food with sustanance! Today, he is able able to try foods with some "chunks" since it's been a month. He had 1/2 cheeseburger and 4 hour later----he got heartburn and threw up!!!  Is this normal???

     

    Is this normal???

    I know this is an old thread and I can't say if this is "normal", but I can tell you I did experience similar.  In my case, I went thru 2 months of chemo, followed by surgery, followed by another 2 months of chemo and yes, in that second round of chemo (after a full gasterectomy), I had experienced a pretty hefty bit of heartburn to say the least...in my case, mostly at night.  Fortunatly I had a supply of Tagamet on hand (cimetidine) because my cancer had originally been mis-diagnosed as "acid reflux" and that did the trick for me (and some Tums "Smoothies" helped as well).  In any case, I 'd talk to the oncologist and see if they can get your hubby on Pepcid, Tagamet, Prilosec, etc...in my case at least, it made a HUGE difference and yes...the heartburn did finally subside.

    Good luck and keep up the fight!

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