7 weeks post surgery dumping syndrome

[Tighan]

Hi everyone my husband is recovering reasonably well from surgery 7 weeks ago but is trying to cope with a quite a few symptoms that can feel a bit relentless. He’s having 2 episodes of what we’re assuming is dumping syndrome each day, we’re keeping a food diary but can’t see any patterns yet. A couple of times these have knocked him for 6 for several hours.

He’s also having one or two bouts of horrible retching a day usually triggered by a cough (another symptom). He’s lost 11kg (he was already slim) and is now just managing to eat around 1400/1500 calories a day so we hope he won’t lose anymore. He’s having diarrhoea every other day. We were wondering if all this is what to expect at this stage and sounded familiar to people who’ve had the surgery?

The positives are the constant nausea he had for the first month which made eating so awful has mostly gone. There are now a few foods (mainly cheese!) that taste ok rather than tasting horrible. He’s sleeping really well, getting usually 8 hours a night and he’s now only taking paracetamol 3 times a day for the pain. He’s walking the dog each day for about half an hour. So lots to be grateful for but sometimes a day of all the symptoms is hard to cope with.

Any thoughts greatly appreciated

So glad I found this forum

Thanks

[over2you]

Hi Tiguan

So pleased for all the positives he is doing really well on that score. I’m over 9 years re Ivor Lewis surgery (now age 75) and initially I did get dumping and it does take time to settle down (and I get it occasionally now if I eat too late) and I think it is trying to eat slowly, often and not to think about food that will make you gain weight just keep trying different foods in my case not too surgery. It’s very early days for your husband and things will improve it is life changing but I can walk, cycle and am grateful that I have a life. Take care and there are lots of people on here that will support you xx

[Cavalier3]

Hi Tiguan, yes that’s all normal for where he’s up to. I’m just over 2 years post surgery and I rarely have any dumping now. It’s very early days for your husband and it sounds like he’s doing fantastic. We all seem to be different in foods we can and can’t tolerate after. In my early days the coughing, retching and sickness were awful. Dumping was frequent. I just ate something small every 2 hours and things slowly got better. I still eat 4-5 small meals a day. Getting up and walking our furry friends is the absolute best medicine. Sue

[telford-hiker]

hi ..he’s doin well for post op 7 weeks,it’s like starting again with a new body..so will take a while to find out what works and what doesn’t..I still get dumping most weeks ..dehydration is massive now ..as dumping drains all the water from your body to digest food..so have to keep topping up ..it’s a fine line between do I eat or do I drink ..as probably can’t do the two at the same time ..sugar and caffeine affect me terribly so I avoid at all costs

[Spikey]

Hi Tiguan,

I am 16 years post surgery and have to confess that, apart from the occasional bout of dumping, I did not suffer in the way that your husband is. Two episodes of dumping per day, coupled with diarrhoea every other day and a retching cough, is extreme. Have you contacted your husband's medical team for advice? They should be able to help.

All I can suggest in the meantime is that he avoids foods that are high in fat or sugar and stays well hydrated. I hope he starts to feel better soon.

[Von66]

sounds very normal to me I’m 2 years post surgery had all the same things for what seemed forever but it does get better never completely without a dumping episode even now but definitely not as much , 7 weeks is very early he’s doing really well x

[purplekey]

h

Hi, I completely sympathise it’s a complete onslaught at first but it is very early days. I am now 2years post op and still struggle with dumping but it now happens rarely. I cut out chocolate completely and very sweet food. I’ve had dumping after a very high fat meal sometime but not others. I speak to my dietician regularly. Occasionally it floors me too but I can often reduce the side effect by drinking a 100 ml can coke immediately I feel it coming on. I go everywhere with a can of coke! His taste will come back normally,it seems to takes time. There are things I used to love to eat which I now can’t tolerate ie fish. I needed paracetamol for my back for about 9 months but don’t take anything now. Initially I used to retch every morning and cough up spit (sorry) but that eventually topped. A small cuppa and banana first thing helped. I too had regular loose stools, but I had a bowel infection post op. I followed a low FODMAP diet and had lactose free milk and cream which I think helped. I occasional get loose stools now but it was bad at first but the Gp prescribed Imodium and Hyocine for cramps. I kept a food diary and a stool chart so I could work out trigger foods. I hope this helps. I wish I was fatter but don’t let your husband worry about about this, it’s just important to get back to enjoy eating and get over the trauma of the op at the present. Things will slowly improve. Keep in touch with your dietician and specialist nurse. Good luck. Xx

[grandylynda]

Yes, sounds quite good for 7 weeks actually. It is a long journey learning how best to treat you new digestive system. Nearly 6yrs on I still get ocaisional dumping but you learn to recognise it starting. For me dextrose and taking time out help to settle it before it gets too bad. As for weight loss, I found it very hard to regain weight until put on creon 1 Yr ago. Listen to your body, keep in touch with dietitians and note the positive steps each day brings. In my experience its been a bit of a roller coaster but I have a life well worth living again. Oh, the other thing you mention is retching. I think it is part of the territory. It seems to happen to me when I am otherwise unwell or stressed. You just learn to cope. Hopefully yours will go away. I also still find over production of saliva happens at times. I keep sugar free sulky sweets which seem to get it under control. Hope your progress continues.

[Tighan in reply to grandylynda]

Thanks so much for all the responses, really helpful and reassuring.

[kiddy]

wow he is doing really well. I was in hospital for a month. Came out was on soup and soft food for weeks. Took me weeks to walk any distance.

Remember it’s not only sweet and fatty food that causes dumping but drinking with food. Also portion sizes the body can’t cope with a lot eat like a baby progressing onto weaning . I am 7 years post op and eat child size portions . I eat every few hours up until 6.30.

I suffered terribly from retching and foam coming up when I began eating. The body is recovering from a major operation.

Bananas ,dextrose and digestive biscuits good when you do get an attack.

Sometimes you have to sleep it off. They say it’s like a hypo but not dangerous.

Good Luck

Debbie

[jay2908]

it sounds like your husband is doing really well. It’s early days and it will get better.

Try smaller meals with less carbs/sugar and a firmer texture. Or have a bite of a banana before eating.

My ‘safe’ foods were:

Thinly slice apples

Chips with cheese

Tiny bite of a chilly to stop nausea or breath some peppermint oil on a tissue.

Choc ices - half at time with no other foods.

cup of tea in the morning about an hour before eating to help clear the path for food.

Keeps us updated

Jay x