Dumping syndrome

Hi, 

we are struggling with the same thing, my dad gets the cramps and then vomits. We have found dry cereal and ready salted crisps are staying down without causing any upset. Also eating and drinking apart, my dad can only have a drink an hour after eating. It really is a mind field and we haven’t really had much help from our GP. 

Are you taking any pain medication? My dad had to stop the morphine as it was making him feel too tired and unable to go toilet. He switched to Panadol extra  dissolvable and has been much better with the pain relief. 

I hope you start to feel better soon, sorry I can’t help anymore. 

Hi there! 

Sorry to hear that you are suffering from dumping syndrome.  I had my op in 2018 and didn't suffer like you are after the op so soon. I did however go through a period about a month or so of having many dumping syndrome episodes - this was about 9 months after the op though. The cramps are horrific - its as if someone is twisting your stomach in knots and the pain is unbearable. 

It did eventually calm down. However, I do still experience dumping syndrome to this day. Probably have maybe one or two episodes in a month now. I haven't quite established the reasons behind the episodes that I have but you do begin to recognise the signs of an episode coming on. This was one of the reasons why I was so hesitant in trying to return to work as it is so unpredictable. I noticed no pattern in my eating habits. I could sometimes eat lots of sugar ie chocolate cake etc and nothing happened or sometimes I could eat a packet of rolos and that would set me off. I have a sweet tooth.

I can only suggest you call the clinical nurse specialist at the hospital where you had the op for advice. They will be best placed to ascertain what would be better for you.

Kind regards,

Rf2k18

Hi Podgerina, 4 weeks is still very soon since the surgery. I had the oesophagus and the top third of my stomach removed and part of the stomach was made into my new oesophagus. That was in October 2016 and certainly for me things improved slowly but I am able to eat quite well now. I found the information I was given on diet and nutrition wasn't very good. I had a jejunostomy feeding tube fitted at the same time as the surgery, so I could get nutritional supplements pumped in overnight. Whilst in hospital I had to get the flow rate slowed down as the original settings made me feel sick. Anyway I learned to eat small amounts about 6 times a day, I avoided bread and things that I had found hard to swallow a few months before surgery. I learned the hard way to avoid sugary foods and drinks, some people become milk intolerant. I also had to avoid potatoes, seemingly simple starches are converted into sugars very quickly. For me eating just a spoonful too much of anything could give me the early dumping issues. I mainly felt weak, faint and like I was going to be sick. That lasted up to an hour, then I would get the sugar crash, sweating, weakness and confusion. I would have to eat a couple of small Mars bars or similar to sort that. I still occasionally get random dumping issues that are very unpredictable, but I know how to live with it. I had a phone consultation with my consultant surgeon 2 weeks ago and he got my GP to prescribe me Creon. It's an enzyme from the pancreas and although they don't touch the pancreas during surgery, a colleague of his found that it helped some of his patients with food dumping issues. It's frustrating I know but it might be worthwhile keeping a diary of what you eat that cause you the worst problems. It can be a bit of trial and error I'm afraid. I know it knocks your confidence, I didn't go out socializing in any capacity for at least a year, but I am still grateful to be here. Please ask anything else you want and I will try to help you. Good luck and kind regards Frank.

Hi there!

Eating and drinking afterwards is a mine field but persevere it does take a lot of time to settle down and it will get better.

We are all unique and experience different symptoms so what might work for you might not work for someone else and vice versa .It is such a big op to have and we need to appreciate that its life changing  - it was for me anyway. You will slowly but surely find something that will work for your dad.

To this day, I am still trying to get to a pre cancer stage in all aspects of my life - I will get there. It is just going to take time. 

I suffered from nausea and ate a lot of sickness tablets to get by. I found that my weight kept reducing for year and a half after the op but not now.

Re pain i also stopped taking morphine and ate Gabapentin and used Lidocaine patches. 

Don't worry. Be positive and keep your dad positive and you will get there.

Kind regards 

Rf2k18 

Hi thank you for your reply! It’s great to hear that is does get better, that’s all my dad wants to hear right now as he thinks this is it! Yes we are going to turn a page today and start being really positive that we will get there! This forum is prove that people overcome hurdles everyday with this disease! You have the right attitude and I am sure you will get back to your pre cancer stage aspects of life! We wish you well and thank you for taking the time to reply to us! 

I had my op in January this year. Like others have said it's still very early days 4 weeks post op so I wouldn't be rushing things on just yet. I had a lot of problems with dumping, starting probably 3 or 4 months post op and only settling down just recently. Mine is always late dumping, so 2 or 3 hours after eating and has no rhyme or reason to it. I could eat the same things for days and be totally fine but then one day the same foods would suddenly have a reaction for whatever reason. I'd get stomach cramps, feel sick (but never actually BE sick), racing heart, sweats, feeling faint. I did almost pass out completely once while I was out shopping, was very scary. Then afterwards I feel extreme hunger and could literally eat a mountain of food. I bought glucose tablets as I had read that they are good for dumping syndrome as it's a milder form of a diabetic 'hypo' and now carry them with me wherever I go. The second I start to feel any symptoms of dumping, I take one and it works wonders for reducing the effects, usually stopping them altogether. I wouldn't say my dumping has gone altogether but episodes are few and far between now, rather than 2 or 3 times a week like before. I haven't changed anything I eat or drink, I think it's just down to my body settling into it's new form and not objecting so much! I can pretty much eat normally now, I don't even have to eat small portions, I can eat a 'normal' meal without an after effects. 

You'll get there, it will take time, probably many months, but I see it as a small price to pay for still being alive

Hey Podgerina I had the same operation just over a year ago and a few weeks ago was able to return to manual work so take your time.  I find botox injections help and thats maybe something you can ask your surgeon about.  You will find over the next few months that as one symptom improves it knocks another out of balance but after a while it all settles down.  You bowl problems will also improve once you begin eating normal food again as long as you keep to small portions.  I eat a lot of rice dishes and try to avoid stews and things with to much liquid as this affects my dumping synedrium.  

Hi there I've just read most of the replies and everyone seems to struggle with this problem.   My husband had his operation a year ago last week it does get better but it takes a while unfortunately and its a real minefield.    As you say its like being hit by a truck we were told a train!   It's an horrendous operation isn't it ?    You will improve gradually,  take each day as a new day, as every day you will eat the same food but have a different reaction.   My husband will say to me but I ate that the other day and I was fine.  You will gradually learn what not to eat that may set you  off.   We wish you all the best for the future.    You will get there!           

Hi there,

My first time responding here even though I've read posts quite often. My treatment ended 2 years ago today. I had same operation as you and the way your feeling brought it all back to me! I had to travel 2hrs on a bus (& back) for 20 radiotherapy sessions 6wks after my operation, the terror and feeling that my insides were going to explode was horrendous! They didn't by the way, just once it got very close! I remember feeling like you that you just want to know it'll get better because it's so hard to imagine it will. Also, no medical professionals know that particular kind of sickness, nausea, cramping, only we who've had that major operation can know it. It's such an individual case of trial and error as to what we can eat and what doesn't cause a bowel reaction or sickness. I can't remember what I could and couldn't eat to be honest but I so much needed to know things would improve overtime and they did, gradually. I still feel tired after eating anything though so I tend Ito eat mostly when I'm home and can lie down if needs be after. Others do the little and often routine. hope you let yourself have all the time you need to feel your way into recovery. Macmillan provided me with a key for all the disabled toilets in town which I've never needed but it's reassuring to have. Test the waters gradually with little trips out now and then to build confidence. The tiniest trip can feel like you've climbed Everest but I found it felt great to begin to do anything, no matter how small again. It such a massive operation you've come through, I really can assure you you're doing great and it will get better. 

Hi Podgerina

As everyone on here says, dumping is a pain. But rest assured it does get better with time. For some it takes longer than others. I’m nearly seven years post op and late dumping can still catch me out, although I can usually trace it back to something starchy, and I know how to minimise the effects (I simply eat 4 jelly babies when I feel my sugar level dip).

Everyone has a different experience, which makes advice from dietitians less useful. For me I found that having a drink before eating so much better than during or after. Obviously small meals and loads of snacks. Things improved with time and soon the steatorrhea (pale runny stools) abated and frequency eventually normalised. Things continued to improve for almost 2 years (for some people it’s sooner).

I could write a book on my experiences with dumping and bacterial overgrowth (it wouldn’t be a best seller), but as they affect different people in different ways it would be of limited usefulness. But as I live a reasonably normal existence I’m happy to share what works for me.