Dumping Syndrome Woes : I am 3.5 years... - Oesophageal & Gas...

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Dumping Syndrome Woes

Janashlin profile image
23 Replies

I am 3.5 years post op Ivor Lewis with complications.

The last month my dumping has been extremely bad. Everytime I eat I get hit bad with the nausea , light headedness, passing out. Sometimes I pass out for an hour sometimes less.

Question 1. Do any of you experience dumping this bad this far post op? Any tips for how to handle?

Question 2. Someone told me that they have heard people say that using a feeding tube vs eating the food bypasses whatever causes the dumping syndrome. Do any of you have any insights or personal experience with this?

Looking for some help as this is really wearing me down.

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Janashlin profile image
Janashlin
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23 Replies
Mauser1905 profile image
Mauser1905

Hyperglycaemia symptoms.Excess blood glucose post meals.

Reducing carbohydrates to less than 40% in a single meal helps.

For like for like meal intake external feeding tube won't make difference to this case

Janashlin profile image
Janashlin in reply to Mauser1905

Thank you for your response.Carbs and mixture of food groups does nit affect my dumping. Same thing one day is fine next day it isn’t etc. all is random except for the fact that at least once a day I have it.

Brett77 profile image
Brett77

I’m 3 years post and dumping has been consistent over this time. I can eat the same thing 5 days in a row and maybe 2 of those days get it and 3 days I’m fine. Getting too full is the only pattern I can identify, rather than specific foods. Though refined carbs eg bagels probably cause it more often than not.

Might be worth speaking to your doctor for advice.

I find a quick burst of sugar eg 100ml cola brings it under control quickly.

Janashlin profile image
Janashlin in reply to Brett77

Thank you for your reply.I am like you, I can eat the same thing for days and all of a sudden what I could have one day sends me into a session the next day. I wondered about quantity and I also wonder if it is a touch of the vagus nerve somehow.

Impossible to sit and shave a meal with others. I just move the food around on my plate and eat later so if I pass out I am at home.

Brett77 profile image
Brett77

Is it safe for you to pass out? Sounds scary. Have you tried a sugar hit?

I feel mine coming on. First my heart rate jumps, then I feel tired and then I get sweaty. By then I’ve hit the sugar and I’m improving. If I get on it early with sugar I get hit less hard.

I eat out. I just don’t eat for a few hours prior and don’t overdo it while I’m out. If I think I have a problem I order a coke.

FKM100 profile image
FKM100

Hi Janashlin, I can't answer your questions directly, but I found this article very helpful in understanding dumping syndrome:

barixclinics.com/blog/when-...

It is written for people who have had bariatric surgery, so you need to make some allowances, but to my mind it explains it very well.

Just from my own experience over the past two years, I've found that dumping can be triggered by a host of factors, including how much and how fast I eat, the consistency and temperature of the food, whether I drink liquid with/soon after eating and, for some reason, the time of day (I am more likely to have dumping if I eat later in the day than in the morning).

There are so many different factors that it is almost impossible to pinpoint them with any real accuracy. But there is apparently medication that can help, so if this is becoming a serious problem for you, I would urge you to speak to your doctor. I don't think that passing out after every meal (or nearly every meal) is okay, or something you just have to put up with.

Bblue profile image
Bblue

Hi Janashlin,I had bad dumping six months after my operation in 2016.This would go

Into Hypoglycaemia. I would go into seizures. At the time nobody had heard of this, i was not aware of this forum. I kept a food diary for years.

It is just trial and error. Nobody is the same. I was given a glucose monitor, this helped but I still had the seizures. I now have a Libra continuous glucose monitor that sounds an alarm when my glucose is going low. I then take 4 jelly babies and sit for20 minutes. It is a game changer

You need to see a good Endocrinologist. Who knows about dumping, he may prescribe you tablets to help.

It is not doing your body any good passing out.

Good luck

Janashlin profile image
Janashlin in reply to Bblue

Thank you so much for your reply.I saw Libra being advwrtised and wondered if it would be any good for me.

Furiously searching the internet comes next!

Janashlin profile image
Janashlin in reply to Bblue

Hi,I have bought the libre 2 and it is great at showing me how low and how often my blood sugar is low. It is done to 3 for 20 percent of the day. I am now Working on how to get the right amount of sugar in without it jumping too high.

Scary how my system cannot regulate the sugar at all. Since I have started tracking it I have found out the levels are much worse than I expected. Seeing a specialist when I get back to Australia. Thank you

Janashlin profile image
Janashlin in reply to Bblue

I wanted to let you know that I have been using the Libre 2 for the last 7 days and I am already seeing a difference. Being able to tell when my sugars are dropping badly helps me to get some sugar in quickly.My sugar dips as low as a flat 3 and was down 20 percent of the day when I first tried the Libre. I now have it to 10 percent. Thank you for your advice about this one.

Cosmobabe profile image
Cosmobabe

Hi there!

My dumping was mostly due to a faecal impaction if my bowels. The symptoms were caused by constipation and the diahorrea experienced was overflow diahorrea. After I would have an episode, my bowels would have a total clearout. I also kept a food diary trying to workout what caused these episodes. But the number of episodes have decreased in number as I tried to cope with the differing symptoms of my stomach and bowel. Please speak with your clinical nurse specialist for more advice even if it has been a wee while since you had your op. I kept going to my gp who told me that he didn't have a solution for me and then I contacted the hospital where I had the op.

I also suffer from delayed hypoglycemia for which I eat Acrobase - just for info.

Kind regards,

Cosmobabes

Janashlin profile image
Janashlin in reply to Cosmobabe

Thank you for this response.I find every two weeks like clockwork I will have the forced bowel clean out. Like having a prep for a colonoscopy only it’s spontaneous and dreadful.

I have added the Libre 2 monitoring system and my sugar levels are extremely low way too often. Little wonder I am so tired

Cosmobabe profile image
Cosmobabe in reply to Janashlin

How are your bowels otherwise? I am also anemic so I have been eating iron tablets for this and this is why I am really tired.

My endocrinologist told me that my sugar levels dip because of a high carbohydrate or sugar intake and the body compensates this by producing high levels of insulin causing the sugar level to dip quickly. Taking 2 Acrobase tablets have helped me but I don't know how long this will help me.

As time goes on I have found that I am better at managing the issues that I have been left with.

I have been working from home but dreading going back into the office.

There are do many health issues that you need to deal with after having the op but I am grateful to be alive 😊.

Take care,

Cosmobabe

Janashlin profile image
Janashlin in reply to Cosmobabe

Mine are good other than the fortnightly forced cleanse!

I am with you, very grateful to be alive but some horrendous after effects to deal with for sure.

All the best to you.

Molly14 profile image
Molly14

Hi Janashlin - I feel for you so much - I’m nearly 7yrs on from the full Ivor Lewis and I had a terrible time with dumping for 4yrs and still do occasionally - I don’t go into all the blood sugar technical stuff but I think it’s just the way it is after the surgery - I think there’s things we can do to help - eat less, eat slower etc - regular sugar snacks - I also think after this surgery having a great hobby to be less focused on food is a brilliant answer - I’m back to my full time hobby of my horses - I can’t showjump anymore due to not enough stamina but I’m back to being busy all day and outside - another thing I think helps is being outside - I think what I’m trying to say is thinking about it all less has helped for me and I eat pretty well now - I will say that I do no social eating at all -I still suffer with pain and bad nausea so it’s to much anxiety - worrying about what might happen - so I take that stress away by not doing it - i really enjoy just coffee dates with friends or a cheeky wee glass of wine 😁 - I do have a friend who had the surgery to and dumping was a real problem for her so she tends to just graze all day and skip with the meals - this seems to have helped her - one things for sure this surgery keeps us on our toes and you’ve got to keep smiling 😊 - all the best

Janashlin profile image
Janashlin in reply to Molly14

Thank you!!I hear you, if I never had to eat life would be almost normal bar the lack of energy!!

I had hoped I would get back to work but that is not going to happen .

I envy you the horse riding, I always said I would own a log cabin and have a horse as my companion. Not in this life!!

Molly14 profile image
Molly14 in reply to Janashlin

To be honest - there’s no way I’d of been able to go back to work - not without a toilet and sofa strapped to my back 😂 !!! You hang in there !!

Janashlin profile image
Janashlin in reply to Molly14

I hear you!!

Bblue profile image
Bblue

Hi JanashlinPleased that you found the libre 2 helpful. My endocrinologist tried me

on acrabos but I found it did not work for me. I then tried Diaxoxide brand name Proglycem.

at first it worked well no blood sugar drops. However because of adverse effects I am on a low maintenance dose. This works well for me, with the jelly babies.It is trial and error what works for you

Good luck

Janashlin profile image
Janashlin in reply to Bblue

Thank you, I will ask my doctor about this one. The acarbose does not help me but perhaps this one will.

jay2908 profile image
jay2908

Hi Janashlin,

Sorry to hear you’re having a hard time with dumping. In regards to a feeding tube, yes this will reduce dumping as it is a constant drip feed. I’ve had 3 NJ tubes over the years to help with my weight.

In terms of dumping - after you have eaten your meal, wait 10-15mins and then have something small but sugary. Half a banana or a few small sweets. This will counteract the low blood sugar.

I hope that helps.

Jay

Janashlin profile image
Janashlin in reply to jay2908

Thank you for this information Jay. I have been trying the additional sugar like you said and that seems to help sometimes.

jay2908 profile image
jay2908 in reply to Janashlin

Try a slower release sugar. Banana/boiled sweets….

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