Dumping is real!

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Comments

  • JimboC
    JimboC Member Posts: 264
    TerryV said:

    Add my Nick to your numbers, Jimbo :)
    Nick HATED the Jtube. He (we) recognized its value as a life saver if needed, but the "leash" was mentally disruptive for him. His attitude and mood would go sour the close it came to being "hook up time". We believe our dislike of the Jtube was because it was our only visible sign of the EC and it became the *hated* thing in our home.

    He said he had dreams of catching the Jtube on something, or having a smart-alek friend grab it and tug, or even having the greeter at Wal-Mart grabbing at it thinking it was something stolen hidden under his shirt. He had many anxious moments because of that durn thing and the intimate pain caused by just a small misjudgement of movement.

    The Jtube was removed just 1 week after surgery. We both couldn't wait for the day. Funny though, but Nick's ability to eat went south once the Jtube was removed. It was a mental thing for sure. Eating was easy when he knew that he had a backup plan *just in case*. Eating became a bit more stressful and scary when he knew that it was up to him, and only him, to keep weight on after the Jtube was removed.

    It's been 3 weeks now without it and he's doing well. Finally starting to put the weight back on rather than just maintaining.

    Terry

    I lived Nick's nightmare... ;)
    I was sedated and on the vent for until 9:00AM the day after surgery. I had some problems being intubated so they couldn't risk extubating me immediately. I was sedated because I am horribly claustrophobic so I didn't realize they had used the clear plastic dressing over my j-tube site. Well, I had a horrible reaction to it so they had to remove the clear dressing leaving the j-tube exposed. When I went up to my final room the next day, I was a little to spry hopping into my bed (no doubt in a feeble attempt to impress the rather young nurse) and I got the j-tube caught. No words can express the pain I felt. It didn't pull out but it hurt. The nurse and finally the doctor examined it and for all intended purposes, it worked for the feedings but it was never quite right after that. It was painful the entire time it was in. Since I required post-op chemo, we elected to leave it in during my first round which didn't start until about a month after surgery. I ended up not needing it during chemo but all told, I had that painful thing in me for a little over 6 weeks. When the doctor went to pull it, all three stitches had pulled through the skin over the course of time it was in.

    To my surprise, that wasn't the last of the feeding tube saga. I woke up on Saturday, almost month after the tube had been removed to a raised spot where it had been. I watched throughout the day as that spot grew and finally ruptured that night. I ended up spending the night in the ER getting pumped full of antibiotics and having tests run where it had gotten infected even though it had healed over. Strangest thing I had ever seen. Granted my counts were down due to the chemo so I'm sure that contributed to it. It has now healed over again so I'm watching it. ;)
  • bingbing2009
    bingbing2009 Member Posts: 177
    jim2011 said:

    dumping syndrome
    Oh yes...it is a real deal. Ensure or other dairy products are a no-no for me. Even the drinks that say great for lactose intolerance. I can eat starbursts and chocolate but anything with milk gives me problems. Even pasta so whats up with that?? Pizza is out.
    The up-side here is that the cramping etc lasts for about 2 hours so maybe I will try some milk in cereal for breakfast on a day that I will be home. Risk it with a small amount. I like a quick breakfast and cereal has been part of my day for years. So many variaties that it is hard to get bored. Lately I have made eggs about everyway possible and bacon/sausages toast. Really miss the cereal. Cream of wheat is out. Red River Oatmeal is good. Butter does not seem to be a problem. I have tried gas-ex and lactaid with limited results. I need ideas...

    cereal
    For several weeks after surgery, I ate cereal frequently, too. My husband/care giver gave me soy milk with it, as I had problems with 'real' milk. I couldn't tell the difference between soy milk and 'real' milk. Now I can drink real milk, even with a squirt of chocolate syrup in it---19 months post-op, so there is light at the end of everything.

    Melinda

    p.s. It seems like the soy milk I drank was called Silk.
  • bingbing2009
    bingbing2009 Member Posts: 177
    jim2011 said:

    dumping syndrome
    Oh yes...it is a real deal. Ensure or other dairy products are a no-no for me. Even the drinks that say great for lactose intolerance. I can eat starbursts and chocolate but anything with milk gives me problems. Even pasta so whats up with that?? Pizza is out.
    The up-side here is that the cramping etc lasts for about 2 hours so maybe I will try some milk in cereal for breakfast on a day that I will be home. Risk it with a small amount. I like a quick breakfast and cereal has been part of my day for years. So many variaties that it is hard to get bored. Lately I have made eggs about everyway possible and bacon/sausages toast. Really miss the cereal. Cream of wheat is out. Red River Oatmeal is good. Butter does not seem to be a problem. I have tried gas-ex and lactaid with limited results. I need ideas...

    cereal
    Sorry if there's a double post.
  • Mazj
    Mazj Member Posts: 42

    cereal
    Sorry if there's a double post.

    It certainly is!!!!
    My husband had the symptoms of 'late' dumping and they started (we think) about a year after the surgery and continued for a couple of years before gradually easing off. We were never too sure about exactly what caused it (the triggers) because it was so erratic and unpredictable. However his first symptom was often a sudden and complete lack of energy (and I mean complete!)followed by an attack of sweating which sometimes meant rivers of sweat running down his legs and arms and soaking his clothes. Sometimes his blood sugar dropped very low and once, I remember, he sort of fell out of bed to keep the sheets dry following a sweat and could not move from the floor. He even had trouble recognising me and appeared confused. That was scary!
    Mostly the episodes lasted about 15-20 minutes and after sucking a Barley Sugar or eating something he would come back to normal.
    We had a few episodes overseas, (but that didn't stop us travelling) including one in a small town in Tanzania where all the locals crowded around wondering why he was sitting on a ledge looking incredibly weak and disinterested while they were trying to sell him something!
    It became such a part of our lives for quite a while and ranged from one or two episodes a week to once or twice a month. It has completely gone now but I thought those interested might like to read the following that I copied from the Mayo Clinic website. It is fairly consise.


    Definition
    By Mayo Clinic staff

    Dumping syndrome is a group of symptoms most likely to develop if you've had surgery to remove all or part of your stomach, or if your stomach has been surgically bypassed to help lose weight. Also called rapid gastric emptying, dumping syndrome occurs when the undigested contents of your stomach are transported or "dumped" into your small intestine too rapidly. Common symptoms include abdominal cramps and nausea.
    Most people with dumping syndrome experience symptoms soon after eating. In others, symptoms may occur one to three hours after eating. In either case, symptoms can range from mild to severe.
    Dumping syndrome often improves on its own without medical treatment or after adjusting your diet. In more-serious cases of dumping syndrome, you may need medication or surgery.
    When symptoms of dumping syndrome occur during a meal or within 15 to 30 minutes following a meal, they may include:
    • Nausea
    • Vomiting
    • Abdominal pain, cramps
    • Diarrhea
    • Dizziness, lightheadedness
    • Bloating, belching
    • Fatigue
    • Heart palpitations, rapid heart rate
    When signs and symptoms develop later, usually one to three hours after eating, they may include:
    • Sweating
    • Weakness, fatigue
    • Dizziness, lightheadedness
    • Shakiness
    • Feelings of anxiety, nervousness
    • Heart palpitations, rapid heart rate
    • Fainting
    • Mental confusion
    • Diarrhea
    • Low blood sugar (hypoglycemia)
    Some people experience both early and late signs and symptoms. Conditions such as dizziness and heart palpitations can occur either early or late — or both. No matter when problems develop, however, they may be worse following a high-sugar meal, especially one that's rich in table sugar (sucrose) or fruit sugar (fructose).
    Some people also experience low blood sugar (hypoglycemia), related to excessive levels of insulin delivered to the bloodstream as part of the syndrome. Hypoglycemia is more often related to late signs and symptoms. Insulin influences your tissues to take up the sugar present in your bloodstream.

    Hope this helps,
    Marilyn
  • TerryV
    TerryV Member Posts: 887
    JimboC said:

    I lived Nick's nightmare... ;)
    I was sedated and on the vent for until 9:00AM the day after surgery. I had some problems being intubated so they couldn't risk extubating me immediately. I was sedated because I am horribly claustrophobic so I didn't realize they had used the clear plastic dressing over my j-tube site. Well, I had a horrible reaction to it so they had to remove the clear dressing leaving the j-tube exposed. When I went up to my final room the next day, I was a little to spry hopping into my bed (no doubt in a feeble attempt to impress the rather young nurse) and I got the j-tube caught. No words can express the pain I felt. It didn't pull out but it hurt. The nurse and finally the doctor examined it and for all intended purposes, it worked for the feedings but it was never quite right after that. It was painful the entire time it was in. Since I required post-op chemo, we elected to leave it in during my first round which didn't start until about a month after surgery. I ended up not needing it during chemo but all told, I had that painful thing in me for a little over 6 weeks. When the doctor went to pull it, all three stitches had pulled through the skin over the course of time it was in.

    To my surprise, that wasn't the last of the feeding tube saga. I woke up on Saturday, almost month after the tube had been removed to a raised spot where it had been. I watched throughout the day as that spot grew and finally ruptured that night. I ended up spending the night in the ER getting pumped full of antibiotics and having tests run where it had gotten infected even though it had healed over. Strangest thing I had ever seen. Granted my counts were down due to the chemo so I'm sure that contributed to it. It has now healed over again so I'm watching it. ;)

    Jtubes - yuck!
    EDIT **sorry for going so off-track**

    I never did understand how both a hole in the jejudum (spelling?) and the skin insertion point can heal over without the healing jejudum having a bit of "intestinal leakage" into the abdominal cavity. Strange things, Jtubes....

    Nick had his Jtube placed before he began rads & chemo - way back on June 14th. It came out on Sept. 28th. Too durn long for sure - LOL. Nick's doc had used 2 stitches to hold it in. One still remained intact - stretched, but intact - on Sept 28th. We were surprised.

    During Nick's 1st inpatient chemo (June 27th, I think), he had a nurse that must have thought his Jtube had been there a while. She went to hook him up to a feeding during the chemo and grabbed the tube and bent it straight up causing the Jtube disk to go at an 90 degree angle to his belly. Son of a buck, he had some quality words for her. I think that was the day the 1st stitch broke loose.

    No wonder after the experience with the nurse that he was a bit "Jtube shy" after that.

    Terry