Newly diagnosed - need advice

Hi I was diagnosed few weeks ago 7cm in cecum with extended local nodes and possibly lynch syndrone. Surgery for right hemicolectomy and hysterectomy scheduled for Dec 3rd - waiting for genetic Lynch testing results to see how much to take. Looking for advice on how to deal with surgery recovery what should take for nausea, what to eat, how to cope at home after any advice welcome. Taking one step at a time ?

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Comments

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    Taking one step at a time

    It sounds like you are halfway there, knowing that you have to just take it one step at a time.  

    As you know, surgery affects each of differently, so you will get allot of different advice, all of which will be good, some of which you will use. 

    I had my Bowel Resection seven years ago yestreday.  Things are getting foggy - a wonderful place to be - but I do remember a few things post surgery.  FOLLOW ORDERS!  I have had many surgeries across the years, and I have always had problems following post surgery orders, and I can tell you now, I have suffered because of it.  The biggist is weight restrictions, sitting in baths, long walks, if you are told six weeks before you can do.....   then six weeks it is.  I feel every single day the results of doing too much after my liver surgery. EVERY DAY. If I could turn back the clock, but I can't.  

    So that would be my best advice. 

    You only have a full week before surgery, so look into what supplements you are NOT supposed to take before surgery, if you take supplements.  

    Be sure and take a nice comfortable pair of sweat pants - or a dress if you are a lady, so that nothing rubs away at your incisoin. 

    Once you are in your room after surgery, and they get you up for that first walk, you won't want to move because it hurts, but once you are up, and moving, it is so much better. After you have the all clear, then get yourself up and walking just as much as possible. The more you walk, the quicker the recovery, the better you feel. Walking is your friend.

    Once home, Eat a healthy diet but don't put off the occasioal - which for me is once daily - treats.  Lots of water to keep hydrated, keep the bladder moving and if you don't come home with 'the bag' then water keeps those bowels moving as well - for the most part. Some patients suffer from constipation no matter what. 

     I liked to air out my incision as much as I could. 

    I wish I had purchased my Bidet allot sooner than I did. I got one fairly cheap on Amazon ($26) and seven years later it is used many times a day.  

    Right, lets see what other folks have to say.

    I wish you the best on the 3rd.  And I look forward to getting to know you here on the forum. 

    Tru

  • KitKat3
    KitKat3 Member Posts: 17
    Trubrit said:

    Taking one step at a time

    It sounds like you are halfway there, knowing that you have to just take it one step at a time.  

    As you know, surgery affects each of differently, so you will get allot of different advice, all of which will be good, some of which you will use. 

    I had my Bowel Resection seven years ago yestreday.  Things are getting foggy - a wonderful place to be - but I do remember a few things post surgery.  FOLLOW ORDERS!  I have had many surgeries across the years, and I have always had problems following post surgery orders, and I can tell you now, I have suffered because of it.  The biggist is weight restrictions, sitting in baths, long walks, if you are told six weeks before you can do.....   then six weeks it is.  I feel every single day the results of doing too much after my liver surgery. EVERY DAY. If I could turn back the clock, but I can't.  

    So that would be my best advice. 

    You only have a full week before surgery, so look into what supplements you are NOT supposed to take before surgery, if you take supplements.  

    Be sure and take a nice comfortable pair of sweat pants - or a dress if you are a lady, so that nothing rubs away at your incisoin. 

    Once you are in your room after surgery, and they get you up for that first walk, you won't want to move because it hurts, but once you are up, and moving, it is so much better. After you have the all clear, then get yourself up and walking just as much as possible. The more you walk, the quicker the recovery, the better you feel. Walking is your friend.

    Once home, Eat a healthy diet but don't put off the occasioal - which for me is once daily - treats.  Lots of water to keep hydrated, keep the bladder moving and if you don't come home with 'the bag' then water keeps those bowels moving as well - for the most part. Some patients suffer from constipation no matter what. 

     I liked to air out my incision as much as I could. 

    I wish I had purchased my Bidet allot sooner than I did. I got one fairly cheap on Amazon ($26) and seven years later it is used many times a day.  

    Right, lets see what other folks have to say.

    I wish you the best on the 3rd.  And I look forward to getting to know you here on the forum. 

    Tru

    Thanks Tru. Some sound advice

    Thanks Tru. Some sound advice. Yes I am a 49 year old female so a dress will be in my hospital bag.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,256 Member
    More. . .

    A few thoughts of my own to add to Tru's wonderful advice:

    Bring a bathrobe and slippers to the hospital (they want to keep you in a gown, and walking in one is not too comfortable and dignified).

    Get up and exercise as soon as possible.  I was walking the hall when the doctor came to talk to the day of the surgery, although perhaps my situation was unusual.

    Even though surgery is imminent, train for it like a sports competition.  Exercise as much as humanly possible.  Eat heartily (they will drain you literally and figuratively in the surgery prep, so a few extra calories are helpful).  Sleep as well as possible.  Look into some elementary meditation.

    Enjoy every minute of every day.  Take time to watch the sun rise and set and watch the children play.

    Best of luck in the upcoming challenges.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    a few more things

    For any hospital stay, I suggest a nice soft warm blanket.  The ones hospitals have are not very warm and I personally get cold after having anisthesia.

    Check out the height of your furniture at home...chairs, sofa, bed...to make sure you don't have to stress abdomin muscles to get up and down.  If a bit low, for chairs or sofa you could at one or more pillows.

    The staff will want you up and walking as soon after surgery as possible, so take a robe to avoid that draft from the rear of the hospital gown.  

    They will also want to make sure the plumbing left is working.  I have been told chewing gum will help get things moving...why I don't know but folks say it works.

    At home have a pillow nearby in case you have to cough...holding it tight to your abdomen will help.

    It was recommended that I eat lots of protein foods to help with healing.  Eating small meals multiple times a day may be easier than just the regular 3.

    What to eat depends on what your doc says is ok and what you feel you can eat...I had a terrible time with the hospital food, but do your best.

    wishing you an easy time and quick recovery.

    Marie who loves kitties

  • KitKat3
    KitKat3 Member Posts: 17

    More. . .

    A few thoughts of my own to add to Tru's wonderful advice:

    Bring a bathrobe and slippers to the hospital (they want to keep you in a gown, and walking in one is not too comfortable and dignified).

    Get up and exercise as soon as possible.  I was walking the hall when the doctor came to talk to the day of the surgery, although perhaps my situation was unusual.

    Even though surgery is imminent, train for it like a sports competition.  Exercise as much as humanly possible.  Eat heartily (they will drain you literally and figuratively in the surgery prep, so a few extra calories are helpful).  Sleep as well as possible.  Look into some elementary meditation.

    Enjoy every minute of every day.  Take time to watch the sun rise and set and watch the children play.

    Best of luck in the upcoming challenges.

    Thank you

    Thank you

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    edited November 2019 #7
    Welcome

    Welcome to the board, but I'm sorry you have to be here.  You received a lot of good advice above.  My advice is walk, walk, walk, even though you don't feel like it.  It will help you heal more than you think and will give you some exercise without being too physical.  If you have loose bowels, get a barrier for your rectum like Calmoseptine (behind the counter but not prescription).  Make sure you are on your side before getting out of bed using your arms to prop you up while in bed. If you try to sit up from a laying position you will be in a lot of pain.  It's easier to be on your side and swing your legs over the bed using your arms to get you out.

    Most important - don't be afraid to ask for help.  You will have had major surgery and there is no reason to be a hero by trying to do to much.  If someone wants to help you when you physically are unable, just let them.

    Wishing you a very speedy recovery and let us know how you are doing.

    Kim

  • KitKat3
    KitKat3 Member Posts: 17
    edited November 2019 #8

    a few more things

    For any hospital stay, I suggest a nice soft warm blanket.  The ones hospitals have are not very warm and I personally get cold after having anisthesia.

    Check out the height of your furniture at home...chairs, sofa, bed...to make sure you don't have to stress abdomin muscles to get up and down.  If a bit low, for chairs or sofa you could at one or more pillows.

    The staff will want you up and walking as soon after surgery as possible, so take a robe to avoid that draft from the rear of the hospital gown.  

    They will also want to make sure the plumbing left is working.  I have been told chewing gum will help get things moving...why I don't know but folks say it works.

    At home have a pillow nearby in case you have to cough...holding it tight to your abdomen will help.

    It was recommended that I eat lots of protein foods to help with healing.  Eating small meals multiple times a day may be easier than just the regular 3.

    What to eat depends on what your doc says is ok and what you feel you can eat...I had a terrible time with the hospital food, but do your best.

    wishing you an easy time and quick recovery.

    Marie who loves kitties

    Thanks yes bit worried about

    Thanks yes bit worried about the food. Thanks for the advice.

  • KitKat3
    KitKat3 Member Posts: 17

    Welcome

    Welcome to the board, but I'm sorry you have to be here.  You received a lot of good advice above.  My advice is walk, walk, walk, even though you don't feel like it.  It will help you heal more than you think and will give you some exercise without being too physical.  If you have loose bowels, get a barrier for your rectum like Calmoseptine (behind the counter but not prescription).  Make sure you are on your side before getting out of bed using your arms to prop you up while in bed. If you try to sit up from a laying position you will be in a lot of pain.  It's easier to be on your side and swing your legs over the bed using your arms to get you out.

    Most important - don't be afraid to ask for help.  You will have had major surgery and there is no reason to be a hero by trying to do to much.  If someone wants to help you when you physically are unable, just let them.

    Wishing you a very speedy recovery and let us know how you are doing.

    Kim

    Thanks yes my husband will be

    Thanks yes my husband will be at home with me for 2 weeks after which will be a great help. Not much fun for him though. I will let you all know how I do and then will be asking advice for next steps. Trying to keep smiling and enjoying the holiday with family.

     

  • KitKat3
    KitKat3 Member Posts: 17
    Another question

    After surgery how long did it take to get back to normal food and drink?

     

  • AnneO1965
    AnneO1965 Member Posts: 182
    Hiya!

    Welcome to the forum, we have a great bunch of people here.

    I'm adding to the list a pillow for your drive home. It helps to keep your tummy from jiggling and hurting. The first 2 days after surgery, they had me on liquids and jello. After that, it was normal stuff. I didn't eat it because I was constantly sleeping from the morphine, but it was there if I wanted it.

    Good luck with your surgery, and keep us posted!

    Anne

  • shu273
    shu273 Member Posts: 44
    KitKat3 said:

    Another question

    After surgery how long did it take to get back to normal food and drink?

     

    Food and Drink

    My Husband had a right hemi also. It was about one week from the day of surgery. He was out of the hospital in 2 days and that was due to the fact that he was in very good shape physically when he went in and was up and walking the next day. He had trouble getting a good nights sleep the first night due to the fact that they come in and out it seems like every 15 minutes and since he was hooked up to the oxygen monitor and was not breathing deeply enough the alarm kept going off. We asked them to set the limit a little lower and that did the trick. Once they un hook you its much easier. Ask questions always, we had great nurses and doctors but sometimes just asking them to try something different like getting the machine to stop alarming or how to handle you when getting up to walk can make a huge difference. And as everyone has said DRINK, DRINK, DRINK!!! Stay in touch....

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    shu273 said:

    Food and Drink

    My Husband had a right hemi also. It was about one week from the day of surgery. He was out of the hospital in 2 days and that was due to the fact that he was in very good shape physically when he went in and was up and walking the next day. He had trouble getting a good nights sleep the first night due to the fact that they come in and out it seems like every 15 minutes and since he was hooked up to the oxygen monitor and was not breathing deeply enough the alarm kept going off. We asked them to set the limit a little lower and that did the trick. Once they un hook you its much easier. Ask questions always, we had great nurses and doctors but sometimes just asking them to try something different like getting the machine to stop alarming or how to handle you when getting up to walk can make a huge difference. And as everyone has said DRINK, DRINK, DRINK!!! Stay in touch....

    Oxygen

    I had the same problem with that stupid oxygen alarm.  I am notorious for not breathing at night, and it went off constantly.  After what seemed like two months, probobly about 2 - 3 days - I was so exhauseted and I asked for them to turn it off.   They couldn't without a Doctor's order, so I told them to go find a night shift Doctor - I know they are around, albeit in a little room sleeping when they can - which they did. I slept like a baby after that. 

    So lets segway that into another bit of advice. Remember Doctor's and nurses, as special as they are, are not Gods. If you feel you need something, or don't need something, tell them. It is hard enough just being diagnosed with Cancer, having half your innards removed, that emotions are delicate and the last thing you need is a bully for a Doctor or Nurse - they are out they, and you nip it in the bud. 

    Tru

  • KitKat3
    KitKat3 Member Posts: 17
    shu273 said:

    Food and Drink

    My Husband had a right hemi also. It was about one week from the day of surgery. He was out of the hospital in 2 days and that was due to the fact that he was in very good shape physically when he went in and was up and walking the next day. He had trouble getting a good nights sleep the first night due to the fact that they come in and out it seems like every 15 minutes and since he was hooked up to the oxygen monitor and was not breathing deeply enough the alarm kept going off. We asked them to set the limit a little lower and that did the trick. Once they un hook you its much easier. Ask questions always, we had great nurses and doctors but sometimes just asking them to try something different like getting the machine to stop alarming or how to handle you when getting up to walk can make a huge difference. And as everyone has said DRINK, DRINK, DRINK!!! Stay in touch....

    Thanks I’m would not say I’m

    Thanks I’m would not say I’m the fittest person out there due to asthma but I walk every day. So expect a bit longer but hopefully not too long.

  • KitKat3
    KitKat3 Member Posts: 17

    Food

    The first day I was supposed to have ice only, the next day a soft diet, after that a normal diet.  But everyone is different.  I forgot about the hugging the pillow advice, it is a life-saver for sneezes and coughs.  Also, try not to laugh, it hurts like heck at first.

    SandiaBuddy - maybe laughing

    SandiaBuddy - maybe laughing while holding a pillow? I hope to be able to stay on the bright side - appreciate all insights thanks

  • abita
    abita Member Posts: 1,109 Member

    Food

    The first day I was supposed to have ice only, the next day a soft diet, after that a normal diet.  But everyone is different.  I forgot about the hugging the pillow advice, it is a life-saver for sneezes and coughs.  Also, try not to laugh, it hurts like heck at first.

    They had me wear a binder

    They had me wear a binder after both my surgeries, and it definitely lessened the pain from sneezes and coughs. I hated that thing, but I did need it

  • KitKat3
    KitKat3 Member Posts: 17
    abita said:

    They had me wear a binder

    They had me wear a binder after both my surgeries, and it definitely lessened the pain from sneezes and coughs. I hated that thing, but I did need it

    Good idea I have one but it’s

    Good idea I have one but it’s too large may need to invest in smaller one

  • abita
    abita Member Posts: 1,109 Member
    KitKat3 said:

    Good idea I have one but it’s

    Good idea I have one but it’s too large may need to invest in smaller one

    Mine was on me when I woke up

    Mine was on me when I woke up from the surgery.

  • Canadian Sandy
    Canadian Sandy Member Posts: 725 Member
    Lots of good advice above.

    Lots of good advice above. Let us know how your doing. 

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,256 Member
    KitKat3 said:

    Another question

    After surgery how long did it take to get back to normal food and drink?

     

    Food

    The first day I was supposed to have ice only, the next day a soft diet, after that a normal diet.  But everyone is different.  I forgot about the hugging the pillow advice, it is a life-saver for sneezes and coughs.  Also, try not to laugh, it hurts like heck at first.

  • KitKat3
    KitKat3 Member Posts: 17
    Post surgery

    thanks for all the great advice it served me well. I am home post surgery and on my way to recovery. Was in hospital for a week due to low blood pressure but all ok now. Results are in and margins are clear and 22 lymph nodes taken also clear - what a great Christmas present. Waiting now for next steps.