Easiest formula to tolerate for j peg tubes?

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lisa333
lisa333 Member Posts: 12
edited March 2014 in Esophageal Cancer #1
Hello All,

I wrote a long email to William that I have to retype,but for now I am sending out a quick email to touch base in just formulas for j pegs.

What formulas have you used with success for j pegs?

My father will be having surgery tomorrow to change his g peg that was put in place 4/16/10 to a j peg attached to this using the same main g/peg that is in place.

The only formula that he has been able to handle at all even on the g/peg is
"peptamen AF with EPA and DHA"complete elemental formula.
They keep trying to pull him off this because of the cost, but now I think that he must have the elemental type formula or am I wrong.

We have been in the hospital again since 4/29 and Really needed to be here, Dad had only been able to absorb 68 oz of the "HN with fiber source" in 5 days at the time of hospital admittance and was finally put on a pump as we had been requesting.

I am looking for any suggestions for a reference to a cancer hospital knowledgeable in esophageal cancer in the Detroit Michigan area, unless we need to go to Illinois.
This Hospital in Midland Michigan is clueless, I am bring more information to them then they have ever dealt with.
Thank you !
We have Henry ford,University of Michigan, in this area where a family member lives close to.

We are not giving up the fight to bring good care to him !

Lisa

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    #2
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    Cancer center in Detroit, Michigan Area
    Lisa,

    If I were going to try to find treatment easily accessible to the Midland area I would consider the Cancer Center at University of Michigan.

    See web site for Thoracic Surgery and Oncology department.
    http://www.cancer.med.umich.edu/cancertreat/thoracic/esophagus_cancer_resources.shtml

    I must admit I have no personal experience with EC and U of M but I know they have an excellent reputation and are listed as one of the top 17 Cancer centers in the US. I am originally from the Bay City, Michigan area so I know that it is right down I 75 and US 23 from you and much easier to access than some of the hospitals in the Detroit metropolitan area.

    Unfortunately I do not have a doctors name as a referral, although I do remember reading in this group of another individual that had positive experience with a surgeon at U of M. Hopefully they will see your post and respond.

    Hope you find something soon and things go well for your dad.
  • Unknown
    Unknown
    #3
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    This comment has been removed by the Moderator
  • paul61
    paul61 Member Posts: 1,391 Member
    #4
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    Sorry for the duplicate post
    Lisa,

    Sorry for the duplicate post but I found the name of the EC doctor at U of M.

    See website below:
    http://surgery.med.umich.edu/thoracic/clinical/faculty/morrin.shtml

    I would follow Bill's advice though and call the doctor that did his surgery and see if they are familiar with Dr. Orrin and if they would recommend him. I also agree with Bill that you are not going to find quality care at a regional hospital like Mid Michigan Medical center in Midland. I am surprised they are not referring you somewhere else.

    Hope this helps...

    Paul Adams

    AKA "paul61"

    McCormick, South Carolina
  • lisa333
    lisa333 Member Posts: 12
    #5
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    paul61 said:

    Sorry for the duplicate post
    Lisa,

    Sorry for the duplicate post but I found the name of the EC doctor at U of M.

    See website below:
    http://surgery.med.umich.edu/thoracic/clinical/faculty/morrin.shtml

    I would follow Bill's advice though and call the doctor that did his surgery and see if they are familiar with Dr. Orrin and if they would recommend him. I also agree with Bill that you are not going to find quality care at a regional hospital like Mid Michigan Medical center in Midland. I am surprised they are not referring you somewhere else.

    Hope this helps...

    Paul Adams

    AKA "paul61"

    McCormick, South Carolina

    thank you for the referal

    Dear Paul,

    Yes I think that U of M is our next stop.
    I will go to the website tomorrow, I have to leave my computer here with my sister tonight. She is spending the night here with dad tonight.
    We have been here around the clock to keep his needs met.

    Thank you, I will let you know what we find out.

    Lisa
  • lisa333
    lisa333 Member Posts: 12
    #6
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    unknown said:

    This comment has been removed by the Moderator

    G/j tube combo
    Hello William,

    I had investigated the tube combination issue before I even talked to the Dr's and knew that It is Extremely dangerous tho remove the g tube from it's placement before at least 4 to 6 weeks. This is the only reason why we are willing to let them do this here before going elsewhere for more investigation into Dad's situation. Right now he is only receiving from 0 to 400 ml a day tops of the peptamen Af without becoming nauseated and bad stomach ache. He can not handle more than a 30cc water flush at this time with this peg tube.

    This week we are going to get a portable pump and have him placed in a nursing home to start his Medicaid coverage application without the 3 to 4 month wait we would have otherwise.
    Then get him ASAP to another facility for care. I am going to call his insurance tomorrow before his surgery to insure that he is covered for additional surgeries and Dr consults as necessary.
    I would be so happy to talk in person to you, It would be so much easier for me than typing. I am so tired and the wireless email link here keeps dropping in the middle of my message and I lose it.

    Thank you for your offer,Please send me your contact info ,and we can talk. I have to go home now and get some things ready for tomorrow ..
    I know that the other message I spent so long writing is gone ,have to redo.

    Take care, you are a great blessing of support for us in this time of need
    Lisa
  • Unknown
    Unknown
    #7
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    lisa333 said:

    thank you for the referal

    Dear Paul,

    Yes I think that U of M is our next stop.
    I will go to the website tomorrow, I have to leave my computer here with my sister tonight. She is spending the night here with dad tonight.
    We have been here around the clock to keep his needs met.

    Thank you, I will let you know what we find out.

    Lisa

    This comment has been removed by the Moderator
  • halsons
    halsons Member Posts: 76
    #8
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    formulas
    Lisa, My husband used Replete with fiber and did very well on that with his J tube. The hospitial tried to change him several times and we always went back to that. It seemed to be good for him and easy for him to tolerate. He had the j tube for almost 8 months. You are right keep fighting. Haley

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