Recent MIE at USC in LA

jhaynes
jhaynes Member Posts: 14
edited March 2014 in Esophageal Cancer #1
I have posted a few times before regarding my EC. The MIE went well (91/2 hours)with Dr. Stephen Demeester on Dec. 14. scopes went in through abdomen and right chest, with incision left neck. In hospital 10 days. Excellent care and pain management. I am back home in El PAso, Texas learning how to eat. Have lost 25 lbs. but stabilized with 600 kcal nightly suppliments through j-tube. Any suggestions to help adjust to my mew anatomy as far as eating is concerned?

Comments

  • This comment has been removed by the Moderator
  • paul61
    paul61 Member Posts: 1,391 Member
    Great to hear from you again!!!!!!
    John,

    So nice to hear from you and happy to hear things went well!!!!

    First of all, I assume you have a dietary guide but just in case:

    http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf

    One of the challenges that I had post surgery was “dumping syndrome” so in case that may be an issue:

    http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf

    I also found the following rules helped me avoid abdominal discomfort after eating:

    1. Chew all food thoroughly (In my case about twice as much as I did before surgery)
    2. Start out with foods that are easy to swallow and digest (see Esophagectomy diet)
    3. Focus on foods that are high in protein and carbohydrates
    4. Eat small meals at least six times a day
    5. Sit down (in an upright position) for at least a half hour after eating
    6. Avoid eating two hours prior to bed time
    7. Do not drink significant amounts with meals, drink at least an hour after meals
    8. Avoid items that are high in simple sugars
    9. Avoid very spicy foods and carbonated drinks
    10. Avoid drinking high calorie supplements like Ensure or Carnation Instant Breakfast in one sitting (can cause dumping) keep them in the refrigerator and sip them slowly over a few hours.

    I have found sleeping in an elevated position helps to avoid reflux. I started out with a wedge but later invested in an adjustable bed that allows me to elevate both my upper torso and my legs so I do not have a tendency to slide down when I sleep. I also found that sleeping in that position caused lower back pain so I put a 3 inch memory foam topper on my bed and that gives me the support I need to eliminate the back aches.

    I seem to have become a bit lactose intolerant after surgery but I find that I can eat frozen yogurt with no issues. I find frozen yogurt makes a great replacement for ice cream in treats and in shakes.

    It has now been about 13 months since my Ivor Lewis surgery and I can now eat more at a single sitting then shortly after surgery and I can now eat almost anything I want. The only thing I still need to avoid is items high in sugar.

    Great to hear things are progressing John.

    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!
  • Bobs1wife
    Bobs1wife Member Posts: 150
    Good to hear from you with good news
    John, I had been wondering how your surgery had gone. It's wonderful news to hear it went well and you are well into recovering. Keep up the good work! Linda
  • unclaw2002
    unclaw2002 Member Posts: 599
    John,
    Wonderful news. Happy

    John,

    Wonderful news. Happy you are back home recovering and regaining your strength. I will keep you in my prayers.

    Best,
    Cindy
  • This comment has been removed by the Moderator
  • linda1120
    linda1120 Member Posts: 389
    So glad it went well
    I am so happy to hear your MIE went well and you are back home. I am sure you are relieved to have this behind you. I have thought about you and prayed your surgery was successful. Did you get your pathology reports? I hope there was no more cancer and you can work on healing.

    My husband Jim just had surgery 4 days ago in Portland, Oregon at OHSU and is supposed to be moving to a normal room tomorrow. He is waiting for those chest tubes to come out. He has had some complications due to his heart issues, but the surgery went very well, about as long as yours. I am glad that is over! I am anxious to see the responses you get as we will be facing the same thing.

    God Bless!

    Linda
  • linda1120 said:

    So glad it went well
    I am so happy to hear your MIE went well and you are back home. I am sure you are relieved to have this behind you. I have thought about you and prayed your surgery was successful. Did you get your pathology reports? I hope there was no more cancer and you can work on healing.

    My husband Jim just had surgery 4 days ago in Portland, Oregon at OHSU and is supposed to be moving to a normal room tomorrow. He is waiting for those chest tubes to come out. He has had some complications due to his heart issues, but the surgery went very well, about as long as yours. I am glad that is over! I am anxious to see the responses you get as we will be facing the same thing.

    God Bless!

    Linda

    This comment has been removed by the Moderator
  • jhaynes
    jhaynes Member Posts: 14
    paul61 said:

    Great to hear from you again!!!!!!
    John,

    So nice to hear from you and happy to hear things went well!!!!

    First of all, I assume you have a dietary guide but just in case:

    http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf

    One of the challenges that I had post surgery was “dumping syndrome” so in case that may be an issue:

    http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf

    I also found the following rules helped me avoid abdominal discomfort after eating:

    1. Chew all food thoroughly (In my case about twice as much as I did before surgery)
    2. Start out with foods that are easy to swallow and digest (see Esophagectomy diet)
    3. Focus on foods that are high in protein and carbohydrates
    4. Eat small meals at least six times a day
    5. Sit down (in an upright position) for at least a half hour after eating
    6. Avoid eating two hours prior to bed time
    7. Do not drink significant amounts with meals, drink at least an hour after meals
    8. Avoid items that are high in simple sugars
    9. Avoid very spicy foods and carbonated drinks
    10. Avoid drinking high calorie supplements like Ensure or Carnation Instant Breakfast in one sitting (can cause dumping) keep them in the refrigerator and sip them slowly over a few hours.

    I have found sleeping in an elevated position helps to avoid reflux. I started out with a wedge but later invested in an adjustable bed that allows me to elevate both my upper torso and my legs so I do not have a tendency to slide down when I sleep. I also found that sleeping in that position caused lower back pain so I put a 3 inch memory foam topper on my bed and that gives me the support I need to eliminate the back aches.

    I seem to have become a bit lactose intolerant after surgery but I find that I can eat frozen yogurt with no issues. I find frozen yogurt makes a great replacement for ice cream in treats and in shakes.

    It has now been about 13 months since my Ivor Lewis surgery and I can now eat more at a single sitting then shortly after surgery and I can now eat almost anything I want. The only thing I still need to avoid is items high in sugar.

    Great to hear things are progressing John.

    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!

    Post prandial cramps
    Thanks for the helpful suggestions. Iget a lot of cramping after eating. Seems to be related to amount more than type of food. I am one month out and have not used the j-tube for the last week. Weight holding stable. The cramps can be very uncomfortable! I am walking a mile each day, but am impatient with the persistent weakness and fatigue.

    Overall, I am thanking God daily for the blessings of a good prognosis that He has granted me.

    Dr. John Haynes
  • linda1120
    linda1120 Member Posts: 389
    unknown said:

    This comment has been removed by the Moderator

    missed this post
    Hello to you William and Loretta, Thank you for your continual prayers. We know Jim's good recovery has been in God's hands. He continues to gain strength and is doing well with the feeding tube. He has no desire for food and I am not pushing it. I look forward to what you put together for John.

    We see Dr. Dolan on Thursday and I can't wait to give him another big hug. I met the whole team while at the hospital and I see why Dr. Dolan is the one who talks with the patients. He is very personable and confident! Dr. Hunter got a big hug from me too. They are both from Ireland and have quite the brogue.

    We will talk again soon.

    Linda