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Please HELP

alexisdanielle
alexisdanielle CSN Member Posts: 2 Member
edited March 2023 in Stomach Cancer #1

I had a total gastrectomy 12/21/22. I don’t have stomach cancer but I needed the surgery for a different life threatening issue. Anyways, I had surgery 12/21/22, and it’s been a nightmare ever since. I’m beginning to get so discouraged. 1/1/23, they found out I had a leak where they connected my esophagus to my small intestine. From 1/1/23 to yesterday 2/2/23, I was strict npo. I’m finally allowed a full liquid diet but I’m not tolerating it well at all. I don’t know what I’m doing wrong. I have a j tube for nutrition now but my j tube causes a lot pain and I want it gone but we can’t remove it until the doctors are convinced that I can tolerate a diet. It seems like no matter what I try I throw it up. Any tips or tricks, advice, or even encouragement would be greatly appreciated. Im in a headspace right now where I feel like I’m never going to eat food again.

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Comments

  • Craig48
    Craig48 CSN Member Posts: 34 Member
    #2

    You have not said if your Doctor believes the “leak” near the reconnection has healed.

    If the Doc wants you on a liquid diet, are you following that and able to keep it down?

    When does your Doctor say you can have the “J” tube removed?

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  • Craig48
    Craig48 CSN Member Posts: 34 Member
    #3

    Hi alexisdanielle,

    I sincerely hope you have had some improvement in the last five weeks. Can you share how your digestive comfort is going? I had no issues with my reconnection healing but it certainly took about six months for digestive comfort to not be a constant concern.

    Craig

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  • alexisdanielle
    alexisdanielle CSN Member Posts: 2 Member
    #4
    https://csn.cancer.org/discussion/comment/1703931#Comment_1703931

    Hi! The leak was repaired and the j tube is out. Eating is getting easier and easier but I still struggle with discomfort and anxiety around meals/snacks.

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  • Craig48
    Craig48 CSN Member Posts: 34 Member
    #5

    Well I am glad to hear that progress is being made. I will have to say that with my stomach removal I have had ups and downs as well. It has now been three years for me and each year is easier.

    I still have time I go back to old standbys that got me through it: Progresso broth soups like chicken noodle, mild pasta dishes like tuna casserole, and a ridiculous large variety of exotic tea blends with things like dried cherries added.

    The first six months was just adjusting as I would get bread and dry chicken packed into my small intestine as I ate and heave painfully. For the next year I was trying to stop weight loss as I went from 220 to 135 which is too skinny for 6'1. After that my gastro guy just got me to concentrate on small but frequent meals with lots of variety. I still get bile reflux which is more nasty then stomach reflux ever was.

    I think I am now stable at 155 and I am pretty strong and able to work hard at age 74 for which I am grateful.

    Be sure to take Bariatric Vitamin and mineral supplements as without a stomach you don't make Intrinsic Factor which is necessary to Make B-12 tp protect your nerves. I have permanent Neuropathy from the chemo but even without that the B-12 is an issue.

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