Dumping syndrome with 70% esophagectomy, 10% gastrectomy and vagotomy

Dr. Ruth
Dr. Ruth Member Posts: 2
in Esophageal Cancer #1
It is almost 6 months since 70% of my esophagus, 10% of my stomach (along with vagotomy) was removed for Stage Ia gastroesophageal junctional cancer. I have typical hyatal hernia symptoms (bloating, belching) which I can live with. What I find most difficult is the totally unpredictable symptoms which I attribute to dumping syndrome. I get this about once a week (sometimes more) and it starts with a severe headache in the left TMJ. The headache progresses to above and below the left eye socket and then the left side of my head. This is accompanied by abdominal bloating and epigastric discomfort. In addition, I feel just awful. If the cascade of symptoms progresses (which is not frequent), I get diaphoretic (sweaty), and my heart feels like it will jump out of my chest (even though the rate and rhythm are normal) If I get only the headache, my symptoms will last a few hours. If I get the full cascade of symptoms, I feel awful for many hours. I only get symptoms with dinner (no other meal) and if I eat the very same food the next day as leftovers, I do not get sick. (In addition, I can occasionally eat leftovers of a meal that I had no trouble with, and get sick.) Because these symptoms are so unpredictable, I am wary to have friends over to dinner or go out to dinner. I have tried the small multiple feeding regimen and have limited my liquids with dinner. Though web sites on dumping syndrome say to limit carbohydrates, I find that bread settles my stomach. The sites also suggest limiting milk and milk products, but I don't get symptoms when I have milk, cheese and yogurt (which are staples of my diet.) My surgeon and my gastroenterologist say they "have never heard of these symptoms," even though they are listed in articles and texts which describe dumping syndrome. My surgeon, in particular, seems disinterested and dismissive. Please help if you have any suggestions.

Comments

  • mlbrooks852
    mlbrooks852 Member Posts: 67
    #2
    Watching this one
    I will be watching this post closely. Dale has had many problems with this. It does happen, and there is no consistency to it so that you can pinpoint what causes it. It is very frustrating for him. He is nearly one year out from MIE.
  • paul61
    paul61 Member Posts: 1,391 Member
    #3
    Your symptoms are very familiar
    Hello Dr. Ruth,

    I am surprised your surgeon has said he is not familiar with the symptoms that you describe. It seems to be a classic case of late onset dumping syndrome with hypoglycemia.

    I had dumping syndrome on a regular basis for about six months after my Ivor Lewis surgery. Like you; I tried to tie the symptoms to specific foods, the amount of food I ate, or when I ate. It seemed to be completely random. Also like you, I became very wary of eating out, particularly if we had something planned after dinner like going for a walk or shopping.

    At about eight months post surgery things began to improve and now I seldom have dumping. Although I must admit I am careful about what I eat and items high in sugar or simple carbohydrates are not on my menu. I still have an occasional random event but I have decided that is something I have to live with.

    If I am going to be gone from home for a while I do take a precautionary Imodium just to be safe. That seems to help; or at least I have not had a dumping event in some time. I am also careful not to eat until I am completely full if I eat dinner out. And of course I am careful not to drink more than a few sips of liquid when I eat away from home.

    I am going to include a reference below for one of the better articles I have found on dumping syndrome and the potential management approaches. I think you will find the description of some of the symptoms and the progression of symptoms familiar.

    Many people who have gastric surgery have dumping syndrome that improves over time. I am not sure how much of the improvement is related to time and how much of the improvement is related to their learned diet management skills. Most patients find improvement over time. I hope this is helpful. Perhaps your surgeon would find it helpful to read the article below. Of course I am not questioning your surgeon’s abilities; this is just my personal experience. Please find below the reference to the article:

    http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/uklejaarticle.pdf

    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!

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