Diarrhea. Help Please ?

I should have said I am nine months post Ivor Lewis (oesophagus & Stomach)

I do not believe that this dumping syndrome (as such) as I have had and this different. NO cramps etc.

Hi Bruce,

Seems that you're going through a difficult patch. Sounds like you may have bacterial overgrowth. Doctors can prescribe a wide spectrum anti-biotic which you should also complement with a good bacterial supplement such as VSL#3, which can be prescribed.

I have also found "love life" bacterial supplement good.

amazon.co.uk/dp/B0096BW8YK/...

You might also put yourself on a simple food diet for a few days to let your gut settle down. Such as a typical stomach bug diet BRAT, bread, rice, apples, toast.

I hope that some of above helps. Best to see your GP to get better advice.

Let's know how you get on.

Jay

I had this a while back and was advised to go on a low fibre diet - this could be caused by food simply moving too fast through you so try white rice, pasta, bread etc no fruit or veg unless it's cooked really really well, potatoes. It sounds like a terrible diet (and it is) but you can start reintroducing the good / healthy stuff again once you get it under control - I hope it helps and I hope you feel better soon

If this is indeed small intestine bacterial overgrowth (SIBO) - and sometimes the instinct that you describe does turn out to be near the mark - it will probably need the advice of an experienced gastroenterologist to really crack it. One person I know was given three months on different antibiotics cyclically - ciprofloxacin, doxycycline and erythromycin - with probiotics VSL3 (as Jay mentioned) for the final month and then a FODMAP diet. I have also heard of questran / cholestyramine being helpful and also rifaximinin. Having given all these names of medications you will realise why having somebody who knows what they are doing is necessary to diagnose and prescribe the right thing for you.

If it is a problem with gut infection, it can be really difficult to shift, and it is serious enough to ask to be referred. My impression is that it might be one of the side effects of not having normal quantities of stomach acid to kill off the right bugs.

It can, as you will know only too well, really affect your quality of life. Persistent diarrhoea can be a serious health issue and I do hope you can get sorted out soon.

What a terrible business - sincere commiserations - I have had the same experience (roughly). My initial reaction on reading your letter was to say "just one of the joys of the post-Ivor Lewis procedure", but in any case you need to see your specialist gastroenterologist. Good luck - these things are ghastly.

Fortunatus

If this is undigested stinking yellow stuff then I have from time to time had the same. I was told it's steatorrhea and not diarrhoea. It's horrible ; the advice I had was that if it persisted I'd be referred to a gastro enterologist. It didn't persist but it happened for the first 2-3 months post op and it still happens from time to time and I can't track down anything specific.

During one of the first episodes I tried Immodium. That may have worked but I had vicious stomach cramps in the aftermath. Sometimes I got those without Immodium so it may be that the cramps aren't caused by the Immodium.

My strategy has been just to keep trying. Try not to place limits on yourself. Cause and effect are not always easy to assess. If something unpleasant happens try again. It's painful and unpleasant but it worked for me. I have kept on trying to eat something like a normal diet and despite occasional disasters this has worked for me. I am now two years post op and eating three meals per day. Sometimes I snack , sometimes I do four meals per day but I don't limit myself.

Hello Bruce

I think it may be a bug . If you can get a good probiotic and take 2 daily. Also slippery Elm made with Soya milk really settles the whole area of bowel & Stomach

Warm regards

Thank you to all for your thoughtful and helpful replies.

Here is the latest:

I stopped ALL food for 24 hours. Just drinking water and black tea.

The diarrhea stopped. I then developed a burning in my gut. This was more uncomfortable than painful. To be honest the diarrhea stopping was such a blessing I would have taken anything at that point. Unfortunately I also had a return of the stomach being blocked/massive chest pains. God I sound like a whinge.

Today I ate two bananas along with some water, with no ill effects. Tonight I has some Gluten Free oatcakes with some black tea - still no ill effects.

I am frightened to eat, but so hungry that I feel I must eat. I just want normality. Every issue like this leaves me feeling like its back. Then it passes and I hate that that i felt like that. I hope to wake up tomorrow with the diarrhea gone along with the other aches and pains. I also wish I knew what caused it, if only to try and avoid a repeat.

Starving it made a difference. Does that give any pointers?

Fortunatus is right about it being par for the course ......and I speak with 24 years experience !

Do not take Imodium.

It is very early days for you post-op.It is likely to take you several years before you really get the measure of this highly unpleasant side effect.Sorry, but that is the reality.

IMHO the clue to the diagnosis is the colour of your stool.Was your gallbladder removed ?

Hi

I did not have my gallbladder removed. Just my oesophagus and 75% of my stomach.

The diarrhea returned. On Tuesday night I had uncontrollable shivers all night, with no sleep due to the shaking. Yesterday the doctor came out and took a poo sample. I am back to no food at all. I simply cannot keep any solids in. By yesterday I was so de-hydrated that the doctor wanted me in hospital. I declined that, as my last visit to an NHS hospital saw me left in an outside corridor for 4 hours, given no change of clothing for 24 hours and having to ask for a blanket as I was lying next to the outside doors which were constantly open. I came home worse than when I went in.

I am now drinking 5-6 liters of water a day along with Dioralyte Relief. I feel fine, look ok have no temperature or other obvious signs of illness. But I know that if I eat solids it will start again.

Doctor thinks it's a "bug" and needs to await the results from the sample to come back before he can treat it.

He has advised to continue the fluids and no food till then.

I can drink tea and skinny milk with no side effects. That rules out any lactose intolerance?

I can only repeat what I said earlier - you need to see your gastroenterologist as a mater of urgency. All the diagnoses/advice posted her are fine up to a point. But we are not medical experts and this does not sound "normal", i.e. within the parameters of what all of us who have had this drastic surgery experience as part of the aftermath of a terrible invasion of the organism. My heart goes out to you

Fortunatus

Dear Bruce,

I assume that if you had your operation 9 months ago, that you have only been experiencing diarreah recently and not continuously for 9 months?

Whilst you're waiting for the GP to get the results, you could also try 'bowel calm' supplements which you can find at any health food shop. I also found aloe Vera juice settled my cramps.

I would also recommend calling your nurse specialist to see if they can provide advice.

You could try eating wafer thin slices of apple very slowly. Say 1 piece every 5 minutes.

Also try miso soup.

Hope that helps and keep pushing for the GP to get the results and consider antibiotics.

Jay

All

It's gone! Nothing changed, it just went. Jeez it was so bad I was really starting to fear the worst. My skin had actually gone orange peel all over. I have lost about a stone in weight. But it has gone and I am left feeling tender and a bit bloated but am able to keep solid food in. I am taking it easy on all foods, frightened of triggering it off again.

I am still waiting on the results from the sample to come back. I really hope that they give a clue to what the possible cause was/is.

My GP and Surgeon are both saying Gastroenteritis, magnified by the chemo and surgery. I DO NOT WANT TO REPEAT THAT>>>>EVER.

Thank you all for taking time to respond with very good sound advice.

What a relief .... we were all on tenterhooks ...as it's not usually so extreme for so long.Congratulations.

Your task now is to build yourself back up,gradually reintroducing the foods you are comfortable with and crucially, re-establishing a healthy gut flora. This is a slow process....bio yog is great but obviously not enough on it's own as it only contains 2-3 species. The normal intestinal tract contains up to a thousand species, most of which were acquired at birth from your mother.Each species is choosy about where in the intestines it sets up home and what it eats.So as varied a diet as possible is indicated,not just for you but also for your fellow travelers ! In toto they number at least ten trillion,rather more than the cells of your own body and collectively weigh 3-4 pounds.

An healthy population is the best defense by crowding out any nasties --but we all need to take special care with food hygiene given that we lack most of the protection previously afforded by plentiful stomach acid.

If you worry that any of the foregoing is fanciful/quackery; I have been awarded seven patents covering the bio-engineering of micro organisms.

It will be interesting to hear which bug was responsible.

Good luck.

Hi. The results came back. Nothing found!!

This is disappointing as I wanted to know what was causing the issue. I guess I never will find out.

Eating is now a big problem. I can swallow and it gets to my stomach at which point it feels like it is stuck. I get a constant back pressure up to my chest. It feels like I swallowed a bowling ball, even with the smallest amount of food or drink. The only way to get to relief is make myself sick and that can't be right. I have not felt this ill since my surgery and am getting really down now. I wake up and think, this will be good today. Then I try to eat or drink and that is it for the day, constant pain. Is this just a hangover from the "gastroenteritis" or could it be more sinister? Just now I ate two small oatcakes with a film of cheese. Went down fine, two minutes later, pain.

I have a scheduled CT scan this afternoon. But will not get the results from that for a week. I fear the worst.

Hi Bruce-- I'm just now reading this thread and you have my empathy! I went through a very (VERY!) similar episode last month. Almost everything you have described, I experienced. Lost over 10 pounds after continuous weight gain since October (my surgery was May 2014). All of my scans have been clean, I am ecstatic with all of the results, but this diarrhea episode really knocked me down! Then it went away as quickly as it came on. Doctors could find no concrete reasons. I just ate light, drank a lot of Gatorade (I prefer it to water; I can drink more of it and it seems to offset the dehydration better), and waited for it to pass. It did and now I feel great again, just one month later. I'm glad you seem to be doing better as well.

Matt

My husband was told by his oncologist to take papaya enzymes prior to meals. GNC has it very reasonably priced. This helped tremendously. Naturally helps break down food which without the entire digestive system the food is dumped into the intestine without being broken down.The body responds by wanting to just get rid of it leading to dumping syndrome. It's not a cure but it did help his symptoms on first dose.

My wife had pretty much the same thing happen to her, after various investigation's she was diagnosed with diverticulitis, she has to be so careful with her diet now , she sometimes has to have antibiotics for a prolonged bout.

Hi

I thought I should should provide an update. Thank you to all who took time to respond to me.

The general consensus from my doctors is that I had “viral gastroenteritis” that is why it went as quickly as it arrived and left no trace.

A routine CT scan showed some abnormality near the “pull up” so this required an endoscopy and further PET Scan. Both of which have shown heavy scarring and some inflamation from the gastroenteritis. Most importantly neither showed a return of my cancer. My stomach exit required a further dilation which was dome with the endoscopy. I am happy to say that I am now back on-track and feeling good. The weather helps a lot with this as I can get out and walk the dogs etc.

I am going try some Papaya Enzyme Tablets (thank you Caringwife) as I figure anything that helps can't be bad.

Thank you again to all who offered sound words.

Bruce