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Dumping is real!

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

Just though I'd share this. I hadn't eaten much today so I decided to drink an Ensure to add a few calories. I took car to make sure it wasn't chocolate because that's on m no list. Well, bad idea. Shortly after I drank it, my stomach started cramping and I was sick for the next two hours. Post-op is a learning experience. :)

flmo's picture
flmo
Posts: 72
Joined: Jan 2011

My husband had the same dumoing problems with Ensure. He now drinks the new Boost with lower sugar content-4 grams I think or the No Sugar added Carnation Instant Breakfast. I think the dumping for my husband was caused by too much sugar. Best wishes as you recuperate and get back to eating!

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

This may have been your first experience with dumping, but maybe not the last! There's so much you learn by trial and error. After surgery my husband would often eat cereal for breakfast. It took him about a week to figure out he could eat the cereal just fine but if he drank the milk that remained in the bowl, he would dump. He's a year and a half out of surgery and very rarely dumps any more, thank goodness. Good luck in figuring out your triggers!

Mary, caregiver to Chad
Diagnosed stage IVa in October 2009

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Three years and I still have to be near a bathroom,no matter what I eat. It has gotten better, but I never know how I will do. Even my acid reflux meds. cause problems and I've tried several different ones.
Sandra

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
It sure is real. I had no problems with ice cream or milk but when I was so underweight I ordered the high calorie Nestle drink, I was so proud that I drank the whole can in one sitting and boy when the dumping started it might as well been Go lytely!!! I learned that I needed to sip Ensure and any high calorie drinks a couple of ounces at a time was fine but no whole cans. And believe it or not, if you are lucky, you may have to watch your weight like I have to now. Last year, 114 lbs, now my drs tell me to be careful of gaining anymore. Not complaining but just saying, a year and a half out plus you will be a different person. take care,
Donna70

BMGky
Posts: 666
Joined: May 2010

Bless your heart! It gets better, but if you're anything like my husband, you'll forget. Eat something you shouldn't. Eat too much of something. Drink fluids with it. And, then, oh, my! Does he ever feel bad. Stomach cramping, the whole nine yards.

It does get better. But, you must be ever vigilant. Take care and enjoy your eating always with a watchful eye. You may forget, but your new stomach won't.

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

You will learn what to eat and not eat. My first experience after my Ivor Lewis surgery was to try a root beer float, which I Love. Not a good idea. I was sick for two hours. Haven't had one since. Try small amounts first, you can always increase. It gets better, I think the stomach does adapt to the surgery. God Bless....

Gerry

Joel C's picture
Joel C
Posts: 168
Joined: Mar 2011

I’ve been following your post and I’m happy to hear you’re doing well. In regard to dumping, I can relate to that. Post surgery I had it pretty bad but as time went on (now 8.5 months out) things have improved significantly with the dumping. I still have to use some caution when picking my foods but I can eat almost anything. For me the issue is not so much what I eat but how much. If I overdo it I’ll pay for it. I’ve actually come up with a way of detecting if I’m getting close to eating too much. I find when I’m eating if I can make myself burp (just a little throat burp) then I’m still ok. If I can’t get a little burp then it’s time to stop eating. It sounds crazy I know but I’m telling you it really works for me. There are a couple of food types that even if I don’t over eat can still cause a problem. If I overdo the sugars or fried foods then I can get the dumping. Last night we went out for dinner and I had a piece of fried fish and some French fries with two beers and I was fine but if I have something like jalapeno poppers than there’s a problem. I find if I do get hit with dumping the best remedy is tiny sips of water.

Good luck moving forward and hang in there Jimbo.

Regards,
Joel

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

Well, I must have thought it was an isolated incident because I had some icecream yesterday and bam, there it was again. You really have to watch it. Like Donna said, it was like GoLitely. Plus hours of stomach cramping. For me, it looks like it is going to be dairy high in sugar to trigger it.

sammy123
Posts: 65
Joined: Apr 2011

Here is a good site. I guess it really comes down to personalyzed trial and error. I know from patients I have taken care of in the past that it does get much better over time and you realize what foods you can and cannot eat.

http://www.livestrong.com/article/302512-foods-to-avoid-with-dumping-syndrome/

Wish we had met up here on 7D. Take care we are all following your recovery.

Kathy

swagner
Posts: 21
Joined: Sep 2011

I'm new to this site but it already has helped me. I still have dumping and I too cannot handle ensure - my doctor wants me to weigh more and God knows I try but painful to eat and its gotton better. I was operated on Jan 11, 2010. Grateful they got the cancer but some days I feel like "hump dee dumpty" -

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

My weight is starting to stabilize somewhat. I still have a bit to go to get it completely under control but what I do is eat several smaller meals throughout the day. If I get hungry, I grab a snack instead of waiting for a meal. I still try to make healthy choices but I don't worry about the calorie count any more. I still have problems with dumping if I eat too much dairy or sugar so there is no way I would try an Ensure again. I have heard several people mention they don't have as much problems with the Boost brand supplement.

Good luck

ham6789's picture
ham6789
Posts: 30
Joined: Apr 2011

Hi JimboC, I am experiencing real dumping problems too. Glad to hear that your weight is stablizing. I can't say that for me.
I havegone from 151# when I was released from pittsberg to 135#.I too can not drink Ensure. I have have some sucess with Replete.
Each day is an new experience with food. I am hopefully that your suggestions will help.

Keep up the good fight Ham

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Ham,
Just wanted to remind you that sometimes you won't be able to tolerate a cup of supplements but you will be able to avoid dumping if you just take a couple of sips at a time. It takes time to gain weight, it was over a year after my Ivor Lewis surgery that I really started picking up weight. But again if you keep your supplement in a cup in the fridge and just sip it during the day it helps. Also if you are not afraid of protein but high fat, creamy peanut butter helped me gain. take care and good luck!!
Donna70

adube's picture
adube
Posts: 66
Joined: Sep 2011

Hey, can I ask a couple stupid questions? First, what is dumping? Is it the obvious or does it mean something else? Also, why is chocolate ensure on your don't list?

-alissa

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Alissa,
Welcome to a newbie. There are no stupid questions, dumping is cramps and diarrhea following eating too much or something too fast. Rich liquids like supplements seem to be a regular culprit. I personally do not believe in don't lists only because some of us are lucky enough to do dairy with no problem and also chocolate Ensure, just have to have small amounts. Now that is not true of everyone so you kind of have to experiment with what works and doesn't. Good luck and ask away, we are all here to help and assist and nothing like personal experience to guide you. take care,
Donna70

adube's picture
adube
Posts: 66
Joined: Sep 2011

Thank you so much Donna! I feel a little silly trying to decipher all these acronyms and terminologies, so I thought I'd just ask. You guys are all so welcoming and helpful, I'm so glad I found you all here!

Thanks for the breakdown. My dad's been doing ensure, carnation instant, and boost to try and see what works best for him (his dietician suggested those, but we're open to other suggestions if you have any). I think we're of the "eat whatever you can eat" mentality. Luckily, he hasn't had too much pain yet and can still eat solid foods if he chews them really well, but he doesn't start chemo until tomorrow. So we'll see what happens after that. My mom is his primary caregiver at this point, but I've been trying to help him find more information on what to expect so that he can get ouf his own headspace for a bit. Or maybe it's my head I'm trapped in. Either way, I'm so grateful to have found this site and you guys... boy. I just... It's amazing how strong you all are. I'm sure everyone has an occasional breakdown for sure, but man, you all are an inspiration and you give me such hope. And, while my dad is a little shy when it comes to talking about his private stuff, I hope that I can help translate from you to him. Thank you all so much for sharing your journeys. I look forward to getting to know you all in the coming months. ... here we go...

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

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...

sammy123
Posts: 65
Joined: Apr 2011

Just wanted to let you all know that there is a drink out there "Nestle Carnation", you can get it on Amazon. When we were up in Pittsburgh they introduced it to us. It is sugar free, lactose free, and one can has 560 calories. It's amazing. Jimbo, do you still have your J-tube?

Carnation Instant Breafast VHC, Lactose Free, Vanilla Swirl, 8.45-Ounce Cans (Pack of 24) by Carnation

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

I am happy to say the J-Tube is long gone. I was one of the few people who had a miserable experience with the J-tube. Nice to know about the drink. As long as I don't overdo the sugar or dairy, I have dumping pretty much under control. I can actually eat an ice cream sandwich now without dumping.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

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

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

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. ;)

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

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

bingbing2009
Posts: 179
Joined: Feb 2011

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
Posts: 179
Joined: Feb 2011

Sorry if there's a double post.

Mazj's picture
Mazj
Posts: 42
Joined: Oct 2011

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

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