diarrhoea: I am three and a half years... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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diarrhoea

JML62 profile image
20 Replies

I am three and a half years post op, Ivor lewis. No matter what i eat every three days i get diarrhoea.

I am at the end off my tether, What can i do ??.

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JML62 profile image
JML62
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20 Replies
brucemillar profile image
brucemillar

Hi

Warning!! I'm no expert here. I am post op and have now come to realise that not all my ailments are related to my "condition". I would suggest seeing your doctor as May have some other issue here. It does point (in my mind) to Cyclic behaviour every three days.

I wish you well. Try not to get upset as that will add to your stress.

Bruce

JML62 profile image
JML62 in reply to brucemillar

Hi bruce, thanks for your welcome reply, I did see my GP A while ago but it was not a positive meeting really, advised me to take imodeum which i think i am immune to now. I will have to go back to my Doc with the info I have now got off this post.

Kind regards

John

I am making an assumption (always a dangerous thing to do) that you have not had this problem until recently, and that you have been OK for the first three years or so?

It may (or may not) be that you have some form of bacterial problem in your bowel. Sometimes this happens partly because you have not got the same level of stomach acid running in your system (either because of PPI medication or not having a stomach to produce it). I would feel inclined to ring the specialist nurse where you had your surgery, run your symptoms past them, and then try and see a gastroenterologist.

There is something called SIBO (small intestine bacterial overgrowth) that can occur, and it can be difficult to shift. One person I know who did see a gastroenterologist was put on three different antibiotics on a cycle (ciprofloxacin, doxycycline and erythromycin), with probiotics VSL3 for the final month and then a FODMAP diet. As I say, this is all making a dangerous assumption, and one should not put the cart before the horse, but it is one of the things that might go through the doctor's mind when making a diagnosis.

I am also making as assumption that you have tried Imodium / loperamide without success?

I hope this helps - it is a very miserable thing to have to put up with.

JML62 profile image
JML62 in reply to

Hello Alan, As you say this problem has only cropped up in the last 2 months.

I have had problems in the past with the dumping syndrome but i could cope with that. I took 30mg Lanzoperole for reflux I stopped taking them as I read that they can cause diarrhoea.

I have tried Imodium, they do not stop the problem.

I will ring the specialist nurse at Aintree hospital where i had my op see if I can get to see a gastroenterologist.

I will repost with the outcome, hopefully positive.

Thanks for your reply

John.

victoria1000 profile image
victoria1000 in reply to

Here in the UK we are reading about a professor and his son who lived on fast food for 1 month and how it ruined the bacteria in the gut. They explained how we have 7 pounds of probiotics and eating a bad diet and taking antibitocs wipes that out. So therefore the bowel is unable to obsorb nutritions

Bobber profile image
Bobber

Hi JML - I am 5 years post-op and similar to yourself I was experiencing extended cyclical periods of diarrhoea (for about 4 years), creating lots of problems for me in relation to my employment and travel - what has worked for me, totally eliminating diarrhoea, is the complete elimination of sugar (in all its forms) from my diet - beyond the sugary obviousness products, I do not eat fruit, consume no fruit juice, only consume lactose free milk (readily available at all large supermarkets), only sugar free bread (I use Kingsmill 50/50)(watch out for all the malt variants in the bread ingredient lists), I do not consume alcohol in any form - I have increased greatly my consumption of vegetables thanks in the main to the use of a NutriBullet blender - why the elimination of sugar in my case has proved incredibly successful I am unclear, but maybe another member might be able to describe the chemical effects of sugar on the small intestine. I know it is a radicle step to try but give it a shot for a month and see if it works for you.

JML62 profile image
JML62 in reply to Bobber

Hi Bobber, thanks for your reply.

This problem does cause me problems with travel and employment, I have now retired 3 weeks ago, although i could have gone on for another 2 to 3 years, but the stress and anxiety got to me.

I must admit i do eat a lot of sugary things, inc 1 1/2 spoon sugar in tea and coffee, I do not eat a lot of fruit, and i eat a small amount of veg, but i could not drink it as a smoothie blended.

I tend to eat chocolate bars and bicuits to try and put some weight back on.

Think i will try eliminating all sugar products as you say and see what happens.

Thanks a lot.

Regards John

Bobber profile image
Bobber in reply to JML62

Hi John - I am 61 and if I didn't have a mortgage I would have retired - as it is I work 4 days a week as a social worker and when I get to 62 in June I am reducing my working week to 3 days. I have no problem with weight in fact at 5'8" and just over 13 stone I really need to lose weight! If you need to put weight on use a sugar free whey protein drink with lactose free milk in a blender (I get my powder off EBAY and it is chocolate flavoured!) - instead of chocolate try and get into nuts, high in fibre, protein and good fat (lots of calories - I eat about 500grams of raw cashews a week!) - use a sweetener in tea and coffee - honestly my condition had become a serious quality of life issue for me until it finally clicked with me that sugar consumption was the problem.

let me know how you get on.

Peter

JML62 profile image
JML62 in reply to Bobber

hi Peter, I am 65 now had my op in Sept 2011, I lost just over 3 stone after the op, down to 10st 2lb, I was probably half a stone over anyway. I have put on about 3 lbs since. I need to get more on. That whey protein drink sounds good, is there any particular one on E bay you use, I have had a look and there is a lot of different options there. I will look at changing Chocolate stuff for nuts and change sugar to sweeteners for tea and coffee.

Thanks for your reply and your advice it is much appreciated.

John

Bobber profile image
Bobber in reply to JML62

Hi John, the EBAY item number is 111362863876, this is Reflex Whey Protein, you chose the flavour you want as you check out (I have only ever had chocolate). It is about £46 for 2.5kg but at 25g a serving you get nearly 200 meals out of it. There is a scoop inside which measures out the 25g. If you want to put weight on have the shake with lactose free full fat milk. If you get to your optimum weight then cut down to semi or like me, lactose free skimmed milk. It is best mixed in a blender. You will see from the ingredient list it uses artificial sweetener and also has probiotics included for the digestion (stay away from probiotic drinks like Yakult or Actimel, they are full of sugar). I have mine in the evening as I try not to eat solid food after about 6pm which gives time to digest before lying down in bed. The beauty of using the shake later in the evening is that it is easily digestible by the stomach and also is really filling so prevents me from wanting to snack in evenings on solids which isn't good before going to bed. You could have 2 shakes a day but still eat at least 3 or 4 small meals. I even take the powder with me on holiday! If you need a chocolate fix in the evening go into Holland Barrett and ask them for a bar of their sugar free chocolate, I have the coffee flavoured chocolate which is rich and surprisingly tastes of coffee. Not cheap at about £1.40 a small bar but if you get them when HB are doing their offers you can get them for half price - just a little treat which given what I have been through I thoroughly deserve. Hope I am not teaching you to suck eggs with this? If I can offer any further advice please get in touch. Peter

JML62 profile image
JML62 in reply to Bobber

Hi Peter,

Thanks a lot for all your infomation, i appreciate the time you have taken to reply.

I have just started taking the actimel, i did not realise

they are full of sugar, I will ditch them.

I will be ordering the whey protein you have suggested,

I will keep in touch with the progress.

Thanks again

John

cherrybailey profile image
cherrybailey

I feel for you it is horrrible after my op (stomach too) everything I ate went straight through like water. I had tests, worked with dietitian recorded my diet everything I ate, times, colour of my poo! Outcome over active bowel. I have got used to it now 8 years.

Used to get down fed up don't go a day without stomach cramp, feeling rough all sorts eating and after. Alan's advice good hopefully get it sorted!!

JML62 profile image
JML62 in reply to cherrybailey

Hi cherrybailey.

Yes I have a meal i try to keep it small, then after 1 hour or so if i dont get the rumbling and gurgling i know everything is o/k. otherwise up the stairs.

thanks for your reply.

All the best to you

John

jay2908 profile image
jay2908

Hi JML, a point to consider is whether your body is absorbing sufficiently the medication you are taking. If food is passing through quickly, there is a chance that the medication is not being absorbed. You could try loperimide tongue tabs or some people spray a diluted loperimide liquid on their tongue.

Once the symptoms settle down, you can try and go back to regular tablets.

Hope you feel better soon.

Jay

JML62 profile image
JML62 in reply to jay2908

Hi Jay, thanks for that last bit of info.

Am I right in saying loperimide is only available on

prescription?

Thanks

John

jay2908 profile image
jay2908 in reply to JML62

It's the same as Imodium, so you can get it over the counter. All pharmacys will stock both liquid and tongue tab forms.

JML62 profile image
JML62 in reply to jay2908

Thanks Jay

John

gutlesswonder profile image
gutlesswonder

Hello JML62

I am 24 years post op and remain to all intents and purposes incontinent of faeces.

Loperamide (Imodium) is an opioid which acts to paralyze the smooth (involuntary) muscle of the intestines.As you have observed one quickly develops a tolerance to this and eventually a whole packet will have no effect.

For me vegetable fibre (both kinds) and live yoghurts are very beneficial.

Otherwise I eat and drink everything.

In addition I take Questran which is an ion-exchange resin (in powder form) which absorbs and neutralizes excess bile .Bile acid/salts diarrhea is a very complex mechanism which is only just being seriously researched by some in the medical community; who in general are completely unaware of this syndrome.

It's too early to speculate but recently I had what is known as a fecal transplant (yuk!)

The short term results appear to be well-nigh miraculous.

Now, with this relatively simple three component regimen I can be pretty confident of no more than four predictable motions per day; giving the possibility of a fairly normal life.

JML62 profile image
JML62 in reply to gutlesswonder

Hello gutlesswonder,

Thanks for your reply, my problem is nothing compared to yours.

Imodium yes you become immune to, I have taken them for quite a while and they now have no effect.

I have seen a television program on fecial transplant, and it has been reported as very successful.

I see my GP Wednesday I will discuss all the advice I have received on

my post and go from there.

all the best to you.

Thanks

John

listen profile image
listen

I have not had dumping syndrome since I quit eating a lot of sugar. When I was diagnosed with my cancer my doctor stated eat Lisa eat and I did! I ate so much junk food that I never allowed myself to do nor did my parents allow me to do expect for donuts on Saturdays and sugary cereal and cartoons,only on the weekends. Oh, how much fun did I have eating gelato, sugary cereals, butter bread and whatever. I can still hear my friend John the doctor stating eat Lisa eat! I lost weight in the beginning of my diagnosis went down as low as 103 pds. Highschool weight and was incredibly active my whole life exercising jogging, tennis, golf and working a lot. Am at 133 pds. sorry to do not know the conversion but do know that I cannot eat a lot of sugar or Carbohydrates and never did before. I crave protein! It was fun to gain weight before my surgery eating sugary carbohydrates, but that changed after my surgery! Do you eat a lot of sugary foods? I have maintained my weight and have to eat at least three meals a day. I love food more than I did before my surgery.

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