Just found y'all

bonniesbill
bonniesbill Member Posts: 3
edited March 2014 in Esophageal Cancer #1
A little background. I began my journey with cancer in the early 1990's when my wife was diagnosed with breat cancer. Lost her in 1996. I had surgery for anal cancer in February 2008 and remain cancer free.
My fiancee was diagnosed with EC in January of this year (I'm my own little cancer cluster) and had her surgery June 30. Pre-op she had chemo (5FU) and radiation. Chemo nearly killed her. She is missing an enzyme that processes the chemo and the chemo stayed around and kept killing cells.
Right now, she is doing as well as can be expected, I think. We have a real concern about her wound from the feeding tube. The tube was removed in mid-August, but remains open and continues to discharge. Shortly after eating/drinking the discharge starts. In addition, she has abdominal pain and tends to be bloated late in the day and constipated. Her weight is stable, but she can't seem to gain anything (around 103 lbs down from 120/125).
We believe that she is not getting the require nurishment due to the leak.
Docs keep saying it will heal, be patient.
Any help would be appreciated.

Bill Leverage

Comments

  • Donna70
    Donna70 Member Posts: 852 Member
    #2
    welcome to this board
    Hi Bill,
    Welcome to the board, Bill and Bonnie.It is great that you are researching for Bonnie. I had a j tube for 3 months following surgery and during chemo. Now mine was removed in March and it took over 6 wks for it to heal, just had a minor discharge. I wonder if you could ask at the cancer center where she is being treated or hospital if a wound nurse could look at it and maybe give suggestions. They told me mine would heal in 2 days??? but it was 6wks plus. Maybe someone else can give you more suggestions. The weight gain is very slow and she should just try to eat as much fattening and nourishing food as she can. I did not start to gain weight till May and gained some of it by eating a lot of creamy peanut butter, pasta and ice cream etc. Milk of Magnesia works for me and if she is bloated and uncomfortable that would not help her appetite, so maybe she could take some of that for the constipation. She was just operated on in June and I don't know about others but it took a full 7 months before I felt like I was more myself again. Everyone here told me to be patient and they were right. Others will help you here too, it is the greatest place to ask questions and get some real life experience advice. take care, prayers for all,
    Donna70
  • BMGky
    BMGky Member Posts: 621
    #3
    Donna70 said:

    welcome to this board
    Hi Bill,
    Welcome to the board, Bill and Bonnie.It is great that you are researching for Bonnie. I had a j tube for 3 months following surgery and during chemo. Now mine was removed in March and it took over 6 wks for it to heal, just had a minor discharge. I wonder if you could ask at the cancer center where she is being treated or hospital if a wound nurse could look at it and maybe give suggestions. They told me mine would heal in 2 days??? but it was 6wks plus. Maybe someone else can give you more suggestions. The weight gain is very slow and she should just try to eat as much fattening and nourishing food as she can. I did not start to gain weight till May and gained some of it by eating a lot of creamy peanut butter, pasta and ice cream etc. Milk of Magnesia works for me and if she is bloated and uncomfortable that would not help her appetite, so maybe she could take some of that for the constipation. She was just operated on in June and I don't know about others but it took a full 7 months before I felt like I was more myself again. Everyone here told me to be patient and they were right. Others will help you here too, it is the greatest place to ask questions and get some real life experience advice. take care, prayers for all,
    Donna70

    Donna has some good information
    Donna's experiences are quite similar to what my husband experienced. The recovery is so slow that you get afraid you're not going to get any better. But as Donna, and as have others said, it takes a full seven months to start to feel better. You're still not like you were before the surgery as your body is still healing. My husband still has issues with how much to eat, how often, and what. We're getting better at figuring it out. Just keep asking questions here. Maybe keep a log of pain levels, stomach upsets, constipation, blood pressure, medicines, etc. This will help you inform your doctors as well as you will see the improvement and its small steps.
  • mlbrooks852
    mlbrooks852 Member Posts: 67
    #4
    Tube wound
    Hi Bill. Myhusbands took months to finally heal. Everytime he drank an ensure, it would start seeping. He found if he only drank an ounce at a time, the leakage wasn't as bad. The wound nurses at the Cancer in Tulsa packed it with some stuff called promogran.. It encourages healthy cell growth. It did finally close, but we know what you are going through. Dales belly was excoriated from the leakage. No matter what kind of dressing that we used, we were unable to keep it off his skin. He finally got to where he would just hold a clean paper towel and dab it every time he drank anything. It was a very difficult time. Please email me if you need more info.
  • bonniesbill
    bonniesbill Member Posts: 3
    #5
    BMGky said:

    Donna has some good information
    Donna's experiences are quite similar to what my husband experienced. The recovery is so slow that you get afraid you're not going to get any better. But as Donna, and as have others said, it takes a full seven months to start to feel better. You're still not like you were before the surgery as your body is still healing. My husband still has issues with how much to eat, how often, and what. We're getting better at figuring it out. Just keep asking questions here. Maybe keep a log of pain levels, stomach upsets, constipation, blood pressure, medicines, etc. This will help you inform your doctors as well as you will see the improvement and its small steps.

    Donna and BMGky Responses
    Thank you both for your replies. I guess we haven't learned to be as patient as we need to be. Each day brings an improvement to Bonnie physically and mentally. The fact that she is not the only one to have a leaky tube opening has helped her a lot. Reckon we will just keep on keeping on.
    We're well enough to head to Williamsburg, Va. for Thanksgiving.
    Thanks again for sharing your experience with us.
    Bill and Bonnie.
  • bonniesbill
    bonniesbill Member Posts: 3
    #6
    mlbrooks852 said:

    Tube wound
    Hi Bill. Myhusbands took months to finally heal. Everytime he drank an ensure, it would start seeping. He found if he only drank an ounce at a time, the leakage wasn't as bad. The wound nurses at the Cancer in Tulsa packed it with some stuff called promogran.. It encourages healthy cell growth. It did finally close, but we know what you are going through. Dales belly was excoriated from the leakage. No matter what kind of dressing that we used, we were unable to keep it off his skin. He finally got to where he would just hold a clean paper towel and dab it every time he drank anything. It was a very difficult time. Please email me if you need more info.

    Tube Wound
    Thanks for your encouraging post. Sounds like Bonnie is suffering from the same problem your husband did. We are trying to be patient and be good patients but sometimes get very frustrated with what seems to be very slow/little progress. It is wonderful to know that there is a light at the end of what seemed to be a very long tunnel.
    We are off the Williamsburg, Va. next week but will have my laptop along.
    Thanks again for sharing your experience with us.
    Bill and Bonnie

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