Had partial gastrectomy two years ago, still having diarrhoea most days on mainly protein/ dairy diet recommended by dietician- HELP!

[Treetop]

Weight loss is big problem and would love more interesting diet. Have to eat ever few hours and take creon with all food. Also take high doses of loperamide and tried codeine,but no change. Dr's are stumped.

[patchworker]

I suppose you have tried avoiding all dairy products? I know it would be difficult if that is what you're mainly living on, but I would try it. Try eating mainly bland things, like rusks or crackers for a while, to see if it helps.

Good luck.

[yorkshirerose]

Hi, I still find nearly three years post op if I have too much dairy I have bad bouts of diarrhoea, so I avoid dairy as much as possible. Small amounts seem to be ok, and by that I mean no more than a yoghurt every couple of days. I have a long list of foods that now have a detrimental effect on me and I seem to be adding to it weekly. Pre op I was a vegetarian I now cannot digest beans and pulses, so I now eat fish and chicken which seems to be the only food that doesn't have a bad effect.

So, good luck in finding your foods, it is all trial and error for us

Edwina

[jay2908]

Hi,

I think we all have had similar issues. Generally dieticians are focused on 99% of people who have not had our surgery and thus high calorie from sugar works well. For people with our condition, we are not able to tolerate these diets/supplements. I used to take protein shakes but found they caused the same symptoms you are facing, because they contain large amounts of simple carbs (sugar). Also diary is a problem for shone people post surgery.

Options:

1. Try eggs instead of protein supplements. They are already well balanced nutrition.

2. Try low dose Imodium with meals to counteract the symptoms.

3. Keep your meals small, and have 6 smaller meals a day.

4. Keep to complex carbs.

I hope this helps.

Regards,

Jay

[Kiks]

Hi

Yes unfortunately I think the diarrhoea is a horrible part of the process but most people seem to get it. I used to have it about 4 out of 5 days. It is exhausting.

I had my op 11 years ago and for the first few years had lots of bouts but it did eventually improve after a few years. Not sure exactly why - whether I instinctively learnt to avoid foods which made it worse or whether my body gradually adjusted.

Certainly what Jay says above is good advice. Eggs are good. Fish is good. Sometimes too much exercise makes food go through too fast.

Hot drinks increase risk of diarrhoea too. Too much fruit or salad material is not good.

Take your time eating food and do eat what you enjoy (mmm steak and chips!) don't drink too much liquid with meals, sip a glass of wine and really enjoy it.

Avoid too sweet, or rich or very creamy things (dumping!)

Complex carbs are good but don't eat large portions. I have soya milk in my porridge for breakfast and love it now. I only very occasionally drink cows milk, but I do have cheese quite often. I get it now about 1 in 10 days and the actual bouts are not as bad as they used to be

In my case it did improve - but took about 4 years. I really hope it will improve for you. If it keeps on then just check with the doctor that everything is OK.

best wishes

Krysia x

[New-beginning]

Hello Treetop

I use a book called Cancer Fighting Kitchen, written by Rebecca katz with Mat Edelson, it contains a lot of recipes for cancer treatment and recovery, I found it very good for a variety of foods, sugar gives me an uncomfortable time so I try to do away with it, I lost 6 stone post surgery from 16 stone 7 pounds and have recovered to 12 stone 7 pounds now,

Mike

[Hidden]

Hi there all. I'm going to elaborate on my situation, where I suspect the diarrhoea is not at all diet related, just in case it may help one or more of you, and, indeed, in case anyone else is going through or has been through similar and can help me.

I was operated 4 1/4 years ago, and had several bouts of prolonged diarrhoea, getting more and more severe. In the latest bout I'm into week 6, and the last 11 days have been continuous. But worse than the diarrhoea is the vicious bubbling and explosive gurgling that goes on, with vast volumes of wind going both ways. I'm hardly eating, hardly sleeping and am a wreck.

All this while, after a previous posting I made on this subject and a very helpful reply from Spikey, I have been seeking to see a gastroenterologist. How hard can that be? Almost impossible, it seems, here in Grantham.

I got the referral and went along between Christmas and New year, only to find I was actually on the colorectal conveyor belt. They found a "few diverticulae" and so put the diarrhoea down to diverticulitis, and inflammatory condition of what could be described as small hernia like pockets in the colon. Fair comment, though, at least this ruled out anything darker going on down there.

The symptoms had actually stopped by the time this happened, but when they resumed 6-8 weeks ago, first thought was again diverticulitis and so a course of antibiotics was prescribed, even though my Dr thought it most unlikely this was the cause as there was none of the expected associated pain.

A week later, the symptoms were back with a vengeance. Seeking help from any direction, my surgeon and upper GI nurse agreed I needed to see a gastroenterologist, and I asked for a referral again, this time specifically to the named gastroenterologist at Grantham hospital. You know how long these things can take so we tried to hurry them along and managed to get an appointment for late April. I looked up the name of the Dr and to my horror found he was yet another Mr Colorectal.

We kicked up an enormous fuss and are now expecting a second referral to the right man, but still we wait and the symptoms, and my overall health just go on getting worse.

At the OPA committee meeting on Saturday I was talking to our treasurer, who had exactly the same, and in particular the vicious bubbling, for several years until it was controlled by two weeks of strong antibiotics, ciprofloxacin. He maybe gets it now once a year and this always controls it.

Dawn, on the OPA helpline, tells me that quite a few people on long term PPIs after oesophagectomy do develop acute and chronic diarrhoea and that this is much more likely to be the cause in my case than anything else.

An integrated cancer specialist in London says: "I must admit I see this quite regularly when people are on long term PPIs. The lack of acid in the stomach increases the risk of acute and chronic stomach infections, which cause gas, cramping, bloating, diarrhoea (sometimes explosive) etc. The best form of treatment is usually a course of antibiotics (2 weeks usually) with a probiotic/prebiotic course afterwards. In many cases, this can shift the balance and rebalance the gut."

So today, hurray, I have started a course of ciprofloxacin 500 and we'll see.

But my message to anyone suffering long term diarrhoea is to at least consider the possible long term use of PPIs as a cause, as well as, or instead of, diet.

Which brings me onto the latest problem in all this. Spikey's advice, and advice I found on a website about PPIs called "Gastro London", made me unilaterally decide to change my PPI usage, previously 15mg oro dispersable Lansoprazole, morning and evening - I stopped the morning one. Furthermore, the literature coming with ciprofloxacin makes it clear that it doesn't get on well with PPIs or antacids. But stopping the morning Lansoprazole has just added to all my symptoms with horrible burning up what's left of my gullet, from lunch time onwards.

I can't seem to win!

I shall post an update after we finally do see a gastroenterologist.

[jay2908]

Hello John,

Interesting point in regards to PPIs. I too felt that they were contributing to the symptoms. It took me many attempts before I was able to come off them. The main difficulty was the acid pain when you come off. In the end I moved down the Drugs effectiveness, esomeprezole, omprezole and then ranitadine. I then reduced the ranitadine dose. It took 3 months in total to come off the PPIs.

I also take amytriptaline, which helps with the pain and anxiety of digestion.

[gutlesswonder]

Hello everyone.

I have been wrestling with all the foregoing for 22 years .

This site contains more wisdom and insight than the entire NHS.

Some quick observations -

I found Creon to be disastrous - harsh and allergy inducing--great improvement when I gave it up and seemingly no problem of malnutrition.I make a very conscious effort to eat a little of EVERYTHING ,but with an emphasis on the traditional easy digesters like fish/fowl.

Codeine and Loperamide both exert a constipating action but this wears off over time despite increasing dosage.Most alarmingly you never know when the effect will cease and you will be caught short.

By getting my sleeping position sorted out I was able to give up Omeprazole -- again a significant improvement in Bowel habit and Reflux comfort.

But what has totally transformed my life was the discovery of QUESTRAN.Here is the Wiki : /en.Wikipedia.org/wiki/Cholestyramine .

By taking the minimal dose -2/3 sachets daily-on a strict schedule with meals I now have a regular habit with predictable frequency/timing/size/severity of motion.Hence it has become possible to lead a more normal existence.

Discuss it with your medical practitioner and if there are no contra-indications give it a try-there's little or nothing to loose and you just might get your life back.

Trial and error and try again.

Good luck.

[getoverit]

Have you had your gall blader removed?i am 3yrs 2 months post-op ivor lewis and have had constant dumping and diarrhoea ever since, and the two are different,The dumping we know mainly caused by to much to fast,and sometimes to wet,i have tried Loperamide but hate constipation and never knowing when it will wear off, have been caught short walking the dog and had to jump behind a hedge in the park!!!!! 1am i hasten to add , but yes it was that bad.Ever since my op i have been on 2x40mg Esomeprazole ( was on the lanz..for 4 yrs before that with Barretts) i also take 3x10mg Metoclopramide, and 2x (not sure of dose) 5/0.025mg? Co-Phenotrope, and a good swig of Gaviscon before bed, after a bad bout of diarrhoea i eat again as soon as poss.. i put on 2 stone since my op.But the most recent weight gain over the last year has been since my gastroenterolgist? put me on Cholestagel 3x2 635mg three times aday,Still get dumping after to much curry or chinese, but i just make sure i am not going anywhere after a good meal, my bed is raised 8inches at the head, ( done by MacMillan for free), good luck, kevin