Feeding Tube to be inserted Today

Boston67
Boston67 Member Posts: 61
edited March 2014 in Esophageal Cancer #1
Hi,

I have surgery today to insert J tube feeding tube into my small intestine at Brigham and Woman's Hospital in Boston. It is an inpatient procedure with three days of recovery and training for the J Tube. I will begin Chemo Therapy once the incisions have healed properly. A J tube was needed because my cancer has reached my stomach which precludes the normal stomach G Tube.

This is a significant step for me along my treatment path at Dana Farber because it needed to inserted prior to my Chemo.

I have stuggled to eat enough to maintain or increase my weight so this is a welcome supplement (I hope supplement) to my nutrition. I am nervous about having this contraption with me all the time, and about how I will sleep, but recognize that since many others have done this, so will I. I seem to be getting used to odd contraptions

My family and my sweet Natthana will be all around me, which is a great comfort. This seems a more significant step to me then the duel power port I had inserted 10 days ago. Here we go, I guess.

Thanks William for preparing me for my hard trip.

Keith
Age 67 Boston
Stage IVb
Pre- Chemotherapy

Comments

  • cjmac49
    cjmac49 Member Posts: 100
    Good Luck Keith
    You'll find the J-tube to be a blessing. Once you get used to it - it will not bother you.

    Jim
  • Donna70
    Donna70 Member Posts: 852 Member
    cjmac49 said:

    Good Luck Keith
    You'll find the J-tube to be a blessing. Once you get used to it - it will not bother you.

    Jim

    it is not that bad
    Keith,
    I had an NG tube before surgery and a j tube after surgery and the j tube was much easier to maintain. It was a godsend and really helped with healing and nutrition. People cannot tell you have it on esp in the winter when you wear heavier clothes. My biggest problem was leakage and sores from that but this was after surgery so it may not be an issue with you. I found that the wound nurses usually had the best solutions to problems if you have any with the tube. It was easy to flush and maintain and mine never got clogged. I was given instructions not to put anything in it but the supplement and water. My original one had to be replaced because a nurse put meds in it. Think this depends on the size of the tube and mine was not big enough to handle crushed meds. Your instructions will cover this. It is not as bad as people think. Good luck and hope this helps with your nutrition. take care,
    Donna70
  • sal314
    sal314 Member Posts: 599 Member
    Praying All Goes Well Keith!
    Hope the procedure goes smoothly and your recovery is quick and non-eventful.

    I know a little bit about "contraptions" as I've had a few of my own from past surgeries. You will soon get use to them and think nothing of them! I think the fear of the unknown gets us riled up more than anything. I'm sure you'll do fine.

    Will be praying for you and your family. Hang tough and keep fighting the good fight!

    Blessings,
    Sally
  • ms
    ms Member Posts: 7
    In good hands
    We are so fortunate in the Boston area to have such excellent medical facilities and personnel available. It looks like you will be one of the first to experience the new facility at Dana Farber. Best wishes for your journey.
  • mrsbotch
    mrsbotch Member Posts: 349
    ms said:

    In good hands
    We are so fortunate in the Boston area to have such excellent medical facilities and personnel available. It looks like you will be one of the first to experience the new facility at Dana Farber. Best wishes for your journey.

    J Tube
    Good luck with the j tube. Vince has TPN and is getting all the great nutrients he needs when not able to eat as much as he should. You are forever in my prayers Boston. Boy do I love that city. Especially the North End and Mike's Pastry's


    Barb
  • unclaw2002
    unclaw2002 Member Posts: 599
    Good luck with the
    Good luck with the procedure. It will be helpful when you need to eat or drink and just cant take anything by mouth. Keep the faith you are in good hands.

    Lots of hugs,
    Cindy
  • cancersupport1
    cancersupport1 Member Posts: 11
    My husband had a J-tube put
    My husband had a J-tube put in at Brighams. He was nervous at first, but has gotten used to the"liquid" prime rib meals everyday.He still eats regular meals everyday, but this J- tube has been great nutritional help for him during the chemo treatment Take care and my prayers are with you and your family.
  • linda1120
    linda1120 Member Posts: 389
    j tube
    Hi Keith,

    I wish you the very best with your j-tube. You have learned from the best and have so many that have shared their experiences with you. Jim just had his j-tube put in the day of surgery (Jan 5th)and I have observed the nurses using it and I get my lessons tomorrow. I am thrilled he has it and know that he is getting nutrition for his body's needs. I am sure you too will be pleased once you get comfortable with it.

    Linda
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    Stay Positive!
    Hello Keith,
    You already have that positive outlook, I can tell by reading your posts. Good for you. I am praying for you that all goes well with the j tube. I have heard nothing but good things about them, and know that it will aid in you getting all the nutrition you will need during your chemo treatments. Know that we are all here for you. Let us know how things are going.
    Tina in Va
  • paul61
    paul61 Member Posts: 1,391 Member
    You will find the J-tube to be a great help
    Keith,

    I had a J-Tube put in after my Ivor Lewis surgery. It was a great source of additional nutrition during a time when eating was difficult. I was concerned about my ability to sleep while the pump put food into my body, but I found I got used to it very quickly and sleeping was not an issue.

    Once I got used to how to arrange it under my clothes, it was basically invisible. Maintenance was just keeping the area around the tube clean and flushing the tube three times a day. I was very fortunate that my wife helped me with that. It looks like you have some wonderful help and support as well.

    Best of luck with the surgery and recovery!!!

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • dwhite0002
    dwhite0002 Member Posts: 126
    My j-tube
    Keith,

    I am 37 yrs. old. I still have a j-tube after four years. I have tried to go without it, and just can't eat enough. I still suffer nausea after meals if I eat very much at all. I am MUCH healthier with the tube.

    I dissolve all my medications in hot water and have no trouble putting them through the tube. Some medications come as a liquid, also.

    I take 4 cans of carnation Instant Breakfast VHC (Very High Calorie) each night, over 8 hours. Each can is 560 calories and is lactose free!

    I sometiems have problems with the tube getting painful after several months. i am crossing my fingers this time. All in all, I have had 4-5 different placements on both sides.

    Again, the j-tube is my lifeline. I can eat small amounts of this and that all day and not stress over the calories. I am also slowly gaining weight. I reached an all time low of 137 lbs. this past Novemeber. I am 6'4'' and am up to 145 lbs. My goal is to be at least 165/170 by spring.

    I hope all this helps.

    -David
    Hillsboro, OH
  • My j-tube
    Keith,

    I am 37 yrs. old. I still have a j-tube after four years. I have tried to go without it, and just can't eat enough. I still suffer nausea after meals if I eat very much at all. I am MUCH healthier with the tube.

    I dissolve all my medications in hot water and have no trouble putting them through the tube. Some medications come as a liquid, also.

    I take 4 cans of carnation Instant Breakfast VHC (Very High Calorie) each night, over 8 hours. Each can is 560 calories and is lactose free!

    I sometiems have problems with the tube getting painful after several months. i am crossing my fingers this time. All in all, I have had 4-5 different placements on both sides.

    Again, the j-tube is my lifeline. I can eat small amounts of this and that all day and not stress over the calories. I am also slowly gaining weight. I reached an all time low of 137 lbs. this past Novemeber. I am 6'4'' and am up to 145 lbs. My goal is to be at least 165/170 by spring.

    I hope all this helps.

    -David
    Hillsboro, OH

    This comment has been removed by the Moderator
  • Boston67
    Boston67 Member Posts: 61
    J Tube Update - My observations
    Hi,

    Today is my first day at home. My J Tube was inserted 7 Days ago and I was hospitalized for 6 days. All went well and I am very happy with it. I write this to share my experience with others. This was not an option for me, and overall am very happy with the procedure and my current situation.

    My previous procedure was the insertion of a dual port for Chemo, which was done in one day as an outpatient. I was quite surprised that the J Tube procedure was very serious general surgery, quite a step up, and a bit of a shock. There were no complications and good healing, but it was much more significant then I expected.

    I have a large incision above my belly button about five inches lone, with a million stainless steel staples to be removed Monday. A small incision where the tube exists by belly cavity. I am still is the "gosh don't pull it out stage", but expect that to diminish with time. The procedure exhausted me and I am still gaining strength. A short walk in the hospital was a big deal. I had around the clock nursing care, and needed it. Brigham and Woman's Hospital was fabulous. I could not imagine better care or more professionalism. But is was indeed a big deal. I got through it with humor and a good attitude!

    I had a visiting nurse come the first night I was home and the next day. They come again on Friday. That helped me build confidence, confirmed my ability and taught me the tricks of keeping the tube in place and safe. I think I will sleep on my back for a long time. The tube is on my belly and is better not to lie on it, I think, at least for now.

    I have a log for many things, including all medication. I now also have a log on the feeding tube and record all the cans of food used with the date and time I reload the bag. I record the date and time that I use a new bag since it is only good for 24 hours. I must flush the tube every six hours and record the date and time of each flush also I don't miss any.

    It seems very important to keep the tube clean. I left the hospital with a three way port and will switch on Monday at the hospital to a two way port, which is a little lighter. My doctors say no medication into the tube to keep it from clogging, so all medication is now liquid. Others confirm this as well.

    My feeding at a rate of 70 and a 7 can a day requirement. That actually takes about 24 hours so I am on the tube all the time. My doctors have told me that 100% of what I need for nutrition is from the tube. They encourage me to eat what I can orally, but that my consumption through the tube will not dimishish for awhile, if at all. That removes from me the phychological stress of worrying about the pain of eating, but does put me on the tube all the time. It is restrictive to me, but I am adapting to my new normal.

    I meet Monday with my doctors (oncology and J tube surgeon) to discuss status of healing and timing of Chemotherapy. The J tube surgeon was in my stomach cavity and was the second person to actually see my cancer. He took some biopsies which were positive for cancer. A CT scan after the surgery confirmed it's proper placement and allowed a comparison with the last CT scan several weeks ago. There is confirmed Metethasis and confirmed Stage IVB, so they are eager to begin Chemo. Since the cancer is near the J tube(can't define for you), proper healing is needed to assure that Chemo does not damage this area, which would be a big problem. At the moment, Chemo will begin the week of January 31, about three weeks after the surgery.

    Cancer was described to me as a cell's DNA being altered as so their normal instructions to grow, or die, or do this or that have been corrupted. We know that the tumors are cancer and that I have cancer and the beginning of tumors in a few other places, but not major organs. I am told that mathethis is cells corrupted and going elsewhere in my body. There may be millions of such cells that do not yet show up as cancer today and the point of the this first Chemo is to attack as many of those as possible.

    I have also learned that the statistics include everyone. Those that didn't have the right treatment, those that had no treatment, and those that are very sick in others ways. This hopeful news, and I think helps explain why I am finding so many people here and elsewhere who seem to beat the odds. God willing, that can be can be me as well.

    My job for the next two weeks is to prepared both mentally and physically for Chemo. I have a great family and loving support system, include all of you, and all sorts of plans for any need medical or other support.

    This feeding tube, while adding things I was not excpected (like a new freind that goes with me everywhere) has eased my mind a lot since I know I will get proper nutrition. For those on the fence, don't be afraid...in most ways it has freed me. I am sure I will quickly adapt to it.

    Thanks for you love and support.

    Keith
    Age 67 Boston
    Stage IV
    About to begin Chemo.
  • Boston67 said:

    J Tube Update - My observations
    Hi,

    Today is my first day at home. My J Tube was inserted 7 Days ago and I was hospitalized for 6 days. All went well and I am very happy with it. I write this to share my experience with others. This was not an option for me, and overall am very happy with the procedure and my current situation.

    My previous procedure was the insertion of a dual port for Chemo, which was done in one day as an outpatient. I was quite surprised that the J Tube procedure was very serious general surgery, quite a step up, and a bit of a shock. There were no complications and good healing, but it was much more significant then I expected.

    I have a large incision above my belly button about five inches lone, with a million stainless steel staples to be removed Monday. A small incision where the tube exists by belly cavity. I am still is the "gosh don't pull it out stage", but expect that to diminish with time. The procedure exhausted me and I am still gaining strength. A short walk in the hospital was a big deal. I had around the clock nursing care, and needed it. Brigham and Woman's Hospital was fabulous. I could not imagine better care or more professionalism. But is was indeed a big deal. I got through it with humor and a good attitude!

    I had a visiting nurse come the first night I was home and the next day. They come again on Friday. That helped me build confidence, confirmed my ability and taught me the tricks of keeping the tube in place and safe. I think I will sleep on my back for a long time. The tube is on my belly and is better not to lie on it, I think, at least for now.

    I have a log for many things, including all medication. I now also have a log on the feeding tube and record all the cans of food used with the date and time I reload the bag. I record the date and time that I use a new bag since it is only good for 24 hours. I must flush the tube every six hours and record the date and time of each flush also I don't miss any.

    It seems very important to keep the tube clean. I left the hospital with a three way port and will switch on Monday at the hospital to a two way port, which is a little lighter. My doctors say no medication into the tube to keep it from clogging, so all medication is now liquid. Others confirm this as well.

    My feeding at a rate of 70 and a 7 can a day requirement. That actually takes about 24 hours so I am on the tube all the time. My doctors have told me that 100% of what I need for nutrition is from the tube. They encourage me to eat what I can orally, but that my consumption through the tube will not dimishish for awhile, if at all. That removes from me the phychological stress of worrying about the pain of eating, but does put me on the tube all the time. It is restrictive to me, but I am adapting to my new normal.

    I meet Monday with my doctors (oncology and J tube surgeon) to discuss status of healing and timing of Chemotherapy. The J tube surgeon was in my stomach cavity and was the second person to actually see my cancer. He took some biopsies which were positive for cancer. A CT scan after the surgery confirmed it's proper placement and allowed a comparison with the last CT scan several weeks ago. There is confirmed Metethasis and confirmed Stage IVB, so they are eager to begin Chemo. Since the cancer is near the J tube(can't define for you), proper healing is needed to assure that Chemo does not damage this area, which would be a big problem. At the moment, Chemo will begin the week of January 31, about three weeks after the surgery.

    Cancer was described to me as a cell's DNA being altered as so their normal instructions to grow, or die, or do this or that have been corrupted. We know that the tumors are cancer and that I have cancer and the beginning of tumors in a few other places, but not major organs. I am told that mathethis is cells corrupted and going elsewhere in my body. There may be millions of such cells that do not yet show up as cancer today and the point of the this first Chemo is to attack as many of those as possible.

    I have also learned that the statistics include everyone. Those that didn't have the right treatment, those that had no treatment, and those that are very sick in others ways. This hopeful news, and I think helps explain why I am finding so many people here and elsewhere who seem to beat the odds. God willing, that can be can be me as well.

    My job for the next two weeks is to prepared both mentally and physically for Chemo. I have a great family and loving support system, include all of you, and all sorts of plans for any need medical or other support.

    This feeding tube, while adding things I was not excpected (like a new freind that goes with me everywhere) has eased my mind a lot since I know I will get proper nutrition. For those on the fence, don't be afraid...in most ways it has freed me. I am sure I will quickly adapt to it.

    Thanks for you love and support.

    Keith
    Age 67 Boston
    Stage IV
    About to begin Chemo.

    This comment has been removed by the Moderator
  • ms
    ms Member Posts: 7
    Boston67 said:

    J Tube Update - My observations
    Hi,

    Today is my first day at home. My J Tube was inserted 7 Days ago and I was hospitalized for 6 days. All went well and I am very happy with it. I write this to share my experience with others. This was not an option for me, and overall am very happy with the procedure and my current situation.

    My previous procedure was the insertion of a dual port for Chemo, which was done in one day as an outpatient. I was quite surprised that the J Tube procedure was very serious general surgery, quite a step up, and a bit of a shock. There were no complications and good healing, but it was much more significant then I expected.

    I have a large incision above my belly button about five inches lone, with a million stainless steel staples to be removed Monday. A small incision where the tube exists by belly cavity. I am still is the "gosh don't pull it out stage", but expect that to diminish with time. The procedure exhausted me and I am still gaining strength. A short walk in the hospital was a big deal. I had around the clock nursing care, and needed it. Brigham and Woman's Hospital was fabulous. I could not imagine better care or more professionalism. But is was indeed a big deal. I got through it with humor and a good attitude!

    I had a visiting nurse come the first night I was home and the next day. They come again on Friday. That helped me build confidence, confirmed my ability and taught me the tricks of keeping the tube in place and safe. I think I will sleep on my back for a long time. The tube is on my belly and is better not to lie on it, I think, at least for now.

    I have a log for many things, including all medication. I now also have a log on the feeding tube and record all the cans of food used with the date and time I reload the bag. I record the date and time that I use a new bag since it is only good for 24 hours. I must flush the tube every six hours and record the date and time of each flush also I don't miss any.

    It seems very important to keep the tube clean. I left the hospital with a three way port and will switch on Monday at the hospital to a two way port, which is a little lighter. My doctors say no medication into the tube to keep it from clogging, so all medication is now liquid. Others confirm this as well.

    My feeding at a rate of 70 and a 7 can a day requirement. That actually takes about 24 hours so I am on the tube all the time. My doctors have told me that 100% of what I need for nutrition is from the tube. They encourage me to eat what I can orally, but that my consumption through the tube will not dimishish for awhile, if at all. That removes from me the phychological stress of worrying about the pain of eating, but does put me on the tube all the time. It is restrictive to me, but I am adapting to my new normal.

    I meet Monday with my doctors (oncology and J tube surgeon) to discuss status of healing and timing of Chemotherapy. The J tube surgeon was in my stomach cavity and was the second person to actually see my cancer. He took some biopsies which were positive for cancer. A CT scan after the surgery confirmed it's proper placement and allowed a comparison with the last CT scan several weeks ago. There is confirmed Metethasis and confirmed Stage IVB, so they are eager to begin Chemo. Since the cancer is near the J tube(can't define for you), proper healing is needed to assure that Chemo does not damage this area, which would be a big problem. At the moment, Chemo will begin the week of January 31, about three weeks after the surgery.

    Cancer was described to me as a cell's DNA being altered as so their normal instructions to grow, or die, or do this or that have been corrupted. We know that the tumors are cancer and that I have cancer and the beginning of tumors in a few other places, but not major organs. I am told that mathethis is cells corrupted and going elsewhere in my body. There may be millions of such cells that do not yet show up as cancer today and the point of the this first Chemo is to attack as many of those as possible.

    I have also learned that the statistics include everyone. Those that didn't have the right treatment, those that had no treatment, and those that are very sick in others ways. This hopeful news, and I think helps explain why I am finding so many people here and elsewhere who seem to beat the odds. God willing, that can be can be me as well.

    My job for the next two weeks is to prepared both mentally and physically for Chemo. I have a great family and loving support system, include all of you, and all sorts of plans for any need medical or other support.

    This feeding tube, while adding things I was not excpected (like a new freind that goes with me everywhere) has eased my mind a lot since I know I will get proper nutrition. For those on the fence, don't be afraid...in most ways it has freed me. I am sure I will quickly adapt to it.

    Thanks for you love and support.

    Keith
    Age 67 Boston
    Stage IV
    About to begin Chemo.

    Home
    Keith,
    So glad to hear things have gone well. I have been concerned because of not seeing posts from you for a while. Yesterday I accompanied a friend to treatment at Dana Farber. Based on the traffic and number of people, cancer is certainly a growth industry. I was thinking of you while I was at Dana. Best wishes!
  • dwhite0002
    dwhite0002 Member Posts: 126
    unknown said:

    This comment has been removed by the Moderator

    J-Tube clarification
    I have a j-tube because I suffer from the extreme end of nausea. When I have NOT had the tube, I simply dont eat enough because I am sick most of the time. WITH the tube, I dont have to stress over the calories I consume.

    In adidtion, my thorat does close up when i am stressed. I have had frequent dilations.

    All is ok now, and has been for a month. however Nov-Dec. was bad.

    I feel better with the j-tube.

    I have seen several doctors in Cincinnati and have a consult to see someone in Columbus, OH.

    However, right now, this is the best solution.

    -David