Post oesophagectomy (10 weeks ago) had dumping syndrome now experiencing chronic diarrhoea, for days on end.

[Jusjust]

My husband has recently had terrible bouts of diarrhoea, he had 6 fantastic days, was eating fine, pain free and then something clicked, he had dumping syndrome and then continued with diarrhoea for another 4-5 days. This has been the cycle for the last 2 weeks. I am at a loss, is this normal? It brings him down as he is so frustrated, you think you have turned a corner then your greeted with another wall to climb.

[SteveJ]

Hi Just

10 Weeks post op is really early days and it can take an awful long time for the digestive system to get back on track. If you thing about it your husband has had a bit of internal plumbing adjustment and it takes a while for the body to get used to it, so loose bowels and or constipation plus dumping are all part of new the way of life, but it does get better. I'm now 6 and a half years post op and still get problems from time to time. it is worth mentioning that you shouldn't just put up with something, it's always worth letting your GP or Specialist nurse know about things you are worried about. Hope this is of some help.

Kind Regards

Steve

[Jusjust in reply to SteveJ]

Hi Steve, this does help a lot, we have never been through this before so it is quite reassuring to have advice from people that have been through this. Thanks Justine.

[liz_crisp]

Hi as justine said 10 weeks is very early. The one thing i am always told is baby steps tiny portions at leat 6 times a day. The digesyive system has to learn all over again how to deal with food think how slowly we introduce babies to food to get their systems adjusting. Dumping is part of the passage but it gets better and you learn to deal with it. I am 3 and half years on and still have the odd problem. I also still eat smaller portions more often as 3 normal meals almost garauntees problems. Likr Steve said talk to your CNS or GP if you are worried or its causing you problems. Good luck lizzy

[Jusjust in reply to liz_crisp]

Hi Lizzy, thanks for your reply, it is so reassuring to get another persons advice. Justine.

[strangetimes]

Hi ,I'm 10 weeks post op as well .A little dragged down by feeling so much worse now than I did while in hospital or when discharged !

It's all so unpredicatable and unknown isn't it ? And the medical staff seem so cheery about one's symptoms and so quick to say the inevitable " it's early days ,everyone's different " .I keep asking mine for a magic wand -) .

What can I say that might help ?..... I think the feeds ( if on feeding through a tube ) cause diarrhea ,I think the fortified drinks definitely cause dumping and diarrhea , I think drinking liquid with meals and within half an hour of meals causes dumping /bloating .

With me I think it's sugar/glucose etc that will cause dumping and or diarrhea ,so if you eat anything sweet ( probably even fruit or mashed /baked potatoes and definitely those fortisip /fortijuice drinks ) try and have a complex carboyhdrates to slow down the body's response to sugar briancalkins.com/simplevsco...

livestrong.com/article/2739...

I have found that buscopan helps with the cramping that goes with the diarrhea ,and that Dioralyte can help you feel better generally .

Also of course that a lot of the painkillers - especially codeine and opiate ones - will quickly move you from diarreah to solid constipation .

That's my current situation .I have much more pain now than I had in hospital ( I suppose as nerves wake up ,cuts harden ) and I'm back on Dihydrocodeine with Laxido chasers .

Good info here

opa.org.uk/regional-shop/lo...

[Jusjust in reply to strangetimes]

Hi, thank you for your reply, I keep reminding myself that it is such early days for my husband, it just feels like a massive set back, but it's really just a blip, I just felt quite alone not in a family and friends sense as we have got an amazing support network, but none of them fortunately have been through this, so it was in a medical sense, even when the dietician assures you this is going to happen it doesn't make it any easier, and I know that my husband worries that there is something else wrong, so I am so glad that I found this website, and to clarify that we are not the only ones going through this. He really didn't get on with the feeding tube and stopped taking the feed quite early after coming home, as he was doubled up in pain, he also suffers with terrible tapped wind, I've bought some peppermint capsules which seem to help, but if anyone has any other suggestions please let me know. He started to ease off the pain killers but I'm wondering if it is early to do this as he shouldn't have to be in any pain. Thanks for your links and adviceI will have a good read up. Justine

[Hidden in reply to Jusjust]

You are entitled to get dozens of twinges after what the surgery has done to your insides - but it is also inevitable to worry that every single twinge means that the cancer is coming back. But you do regain confidence in your own body after a while.

It is a good thing to wean yourself off the feeding tube if you can so he is probably doing the right thing. Pain is not compulsory; nor are pain killers, so if he can get by without them, that is a good thing.

[Animalmadwoman in reply to Jusjust]

Hi Justine , my husband is in exactly the same situation. He is 18 months post op, he managed well initially , but always had diarrhoea whilst on liquid feed. He came off that & things improved & he put on weight, the dumping always a problem but he managed that by spacing drinking fluids 30 mins after eating. About 2 months ago he started getting bad cramping /gut pain , then severe diarrhoea ( I called it the whoosh effect) . He has lost a lot of weight & had blood tests, stool tests( that worried him as it was the feacal blood one) it didn’t help that the doctor marked it as ‘unexplained weight loss’ . Hardly a mystery being that he couldn’t keep any food in! Both tests came back ok although he had high iron in blood & apparently the vitiamin he was taking ( Forceval) can cause diarrhoea , so now takes one with no added iron.

GP’s tend to be very uninformed about this surgery & post op probs.

It is starting to ease up, the GI specialist nurse is best to contact for advice.

It so worrying seeing him lose so much weight, he only weight 9stone 11lbs, pre op he was 14 stone.

He finds Deflatine helps with wind pain.

I hope you husband feels better soon & as everyone says it is in most cases a common complaint... makes me feel helpless though 😪

Keep us posted good luck. X

[Hidden]

Its normal at this stage of recovery.I was told to have diarrhoea tablets and that helped situation.It does get better over time

[Jusjust]

Hi Griff, thanks for the reassurance, i long for the days when he can have a nice normal time. Justine

[strangetimes]

Have you spoken to the dietiian about the reaction to the feed ? I run mine very slowly 50 ml an hour ,but was slower in hospital and that helped .

Also some of the feeds have fibre and some dont ,so one might suit more than another .

In hospital they offered peppermint water ,I think it was a few drops of peppermint ( oil ? ) in water ,but not sure .

As I said Buscapan helps me with the gut spasms and might help with the wind ,but there's another one called mebeverine. which might work if the Buscapan ( which you can get over the counter ) . And I found a hot water bottle soothing.

Has he a specialist nurse he could speak to ,or a hospital dietitian ? It is what they're there for ..

Good luck . Maybe just stick to paracetamol for pain if he can ?

[Hidden in reply to strangetimes]

Some people use gripe water - it is not dissimilar to the problems that babies have!

[valruss]

My husband is almost 12 weeks post surgery and often suffers diarrhoea for which he was prescribed immodium. He seems to have fallen into a regime whereby he has a normal bowel movement often followed by a bout of diarrhoea when he takes two immodium tablets. This seems to settle his bowels down for the rest of the day. He can take a further dose of immodium (1 tablet) if the diarrhoea continues but fortunately this doesn't happen very often. As regards an eating plan, he had a very severe and complicated journey after surgery and lost three stones in seven weeks but is now slowly recovering his strength by eating three very small meals a day interspersed with three snacks and sips two Fortisips throughout the day. Fortunately, he has very little pain but will take two paracetemol every four hours if he does. This forum has been extremely informative for us and helps to allay our fears about eating and the dreaded dumping syndrome. Because Russ suffered such catastrophic complications after his operation, he is unable to have the three rounds of post surgical ECX chemotherapy which leaves us hoping that the surgery was curative. It would be good to know if anyone else is still doing well without undergoing the post-op chemo.

[Danko in reply to valruss]

Hi there. This is a very interesting thread and one can see that diarrhoea in the early weeks almost seems to be the norm, as it was with me following my op in July 2012. You are obviously taking great pains with your husband's intake and I know how hard it can be to manage this. I see that he can take Forsip. I found that Forsip didn't agree with me at all and triggered diarrhoea so I stopped taking it. It also took me a long time before I could take any milk, even in a cup of tea. I didn't have post op chemo and believe this was because the results of the biopsy on the tissue removed in the op were good. Regaining strength is a very slow process and I have regained very little weight, but recovery will gradually happen, especially with you giving your husband the care and support he will need. Best wishes.

[patchworker]

I'm three and a half years post op. and I still have almost constant diarrhoea, dashing to the loo up to five times a day.But it's been going on now for such a long time that I accept it as normal, and hardly think about it. You can get used to anything! Even the dreaded dumping you learn how to cope.

I also had bad complications after surgery,including anastomosis leak, subphrenic abcesses and pneumonia and a large area of necrotic tissue where the blood supply was cut off. I didn't have chemo, and I've been lucky, so far no sign of the cancer returning. I hope all goes well for Russ.

[valruss in reply to patchworker]

That's so reassuring to hear that you did not have the post surgical chemo and are free of cancer three and a half years later. Great to hear you have recovered from the dreadful complications and it is heartening to know that Russ has every opportunity to recover from his catastrophic set back too. Keep going forward and enjoy life.

[Jusjust]

Well things have improved, the doctor came out and prescribed a course of anti biotics, so far so good, still got stomach cramps but the diarrhoea has stopped,thank goodness. He has eaten today and it has stayed in, if you know what I mean. In reply to Valruss my husband didn't need to have any chemo after the op as the histology results were good, cells were only found in 2 of the 52 lymph nodes that were removed. I'm hoping that this week is a little better, but as everyone has said it is still early days. Thanks for all the replies, believe me it has really helped me and also given Peter some comfort in knowing that this is quite normal under the circumstances.

[valruss in reply to Jusjust]

Glad to hear things are settling down for your husband, Jusjust,. Also good to hear he didn't require further chemo. We are seeing the consultant this Wednesday for pathology results so are hoping the surgery provided sufficient clear margins and the lymph nodes that were infected were successfully removed. I must say this forum is so helpful and supportive - it really helps allay ones fears and anxieties.

[strangetimes]

"Some people use gripe water" .....gosh that takes me back .

My dad used to love gripe water ,but I think they've changed the formula now .He was never a drinker but the original stuff had some alcohol in it .

Mind you with 5 children under 5 ( two sets of twins plus 1 ) I'm surprised he didn't take to drink....

:))

[Hidden]

Just on the diarrhoea side of things - some people do develop small intestine bacterial overgrowth (SIBO) that needs antibiotics. It is because of the changes to the insides of the intestines, not least the lack of stomach acid (either because of surgery of because of PPI medication like omeperazole). Having diarrhoea for prolonged periods can be very debilitating, so although some of it can be 'normal', do not let it carry on too long without going to see your doctor.

[ccfc]

I had my op in November 2012 and in the early days i seemed to go through a constant cycle of 3-4 days diarrhoea then 3-4 days constipated. Now i go through a similar cycle but much less severe.

[Stevewellswood]

I had my opp in June 2012 and I had the same problems as you it gets better but still have bouts it's like you say you keep thinking you getting there then bang another set back and you think wow where did that come from

Steve w

[sallym]

Diarrhoea it comes when it thinks it will and stops of its own accord, I find taking an Immodium instant does help but know it will come back again when it feels like it.

To Valruss concerned about inability of post op treatment all I can say is while I was waitng for my operation the cancer spread to my stomach. Chemotherapy was not an option in those days, radium was ruled out so I had niether. I am still here and yesterday it was 19 years since my operation. Today I start on year 20. The surgeon at the time hoped he might give me 3 more years. So good luck sally

[Jusjust in reply to sallym]

Thanks Sally, and your story is quite an inspiration, I have only really had contact with people that are 7 years down the line, 20 years is amazing!!