Persistent Diarrhoea (plus Creon)

Every so often the problem of persistent diarrhoea comes up, and having had some discussions with people outside this forum about a particular example, I thought it might be worth setting out some ideas. It can be an enormous blight on one's quality of life. None of what follows is self-treatment, and it needs to be discussed with a doctor, preferably a specialist, and probably a gastroenterologist.

The issue arose with somebody who had had surgery to remove some sections of intestine ( about 30% of the total length of 6.9 metres), so it was not Upper GI tract, and, as it happens, the problem was not cancer-related. But they were taking 12 - 18 loperamide tablets a day (normal maximum dose is 6) and still needing to go to the toilet twice a day. And suffering from 'dumping syndrome'. Dietician had suggested haribo sweets as a binding agent but neither this, nor specialist diets were successful.

So what follows is a summary of people's thoughts as they tried to help:

'Overdosing on imodium / loperamide will make you, at worst, constipated, so perhaps having extra loperamide may be the better of two evils'? (Not sure about the overdosing bit, but I can see the logic). Having loperamide in liquid form may help.

Is this short bowel syndrome (SBS)? SBS means that you have less than 200cms of viable small bowel or losing 50% or more of small intestine If it is SBS, then teduglutide a new medication, may help.

The small intestine does, over time, work to regenerate itself and make itself more efficient.

One person had explored irrigation. Despite drawbacks, it did help to control the bowel - rather than the other way around. '... a seemingly drastic measure, and not always appropriate/suitable for everyone, but it has made a big difference to me. I do not enjoy the daily routine and mechanics of it, but l do enjoy the freedom and peace of mind it affords me.'

One hospital's oncology staff had started a clinic for diarrhoea problems. The things they found helpful for some patients were: Breath test for bacterial overgrowth, SeHCAT scan for bile salt malabsorption, CT if weight loss, Colonoscopy and biopsies, OGD and duodenal biopsies. In the clinic’s studies they found 39% had small intestinal bacterial overgrowth (SIBO), 21% had bile acid malabsorption, 18% had vit D deficiency, vit B12 deficiency in 14%. The Small bowel bacterial overgrowth had been treated in some with specific antibiotics for 7-10 days, oxytetracycline, augmentin, ciprofloxacin or rifaxamin. No good evidence for probiotics. The bile salt malabsorption can be treated with a specialist dietary assessment and either a carefully built up dose of Questran or colesevelam, very low fat diet, and other things a doctor would need to be carefully monitoring. '

The pelvic radiation disease website has information that might be helpful


The person had, apparently, also been prescribed creon (usually prescribed when there is trouble digesting fat):

Some people being fairly inventive with how they mix creon into different sorts of food.

'Calculating the amount of creon is a very tricky process because you have to work out what amount of fat is contained in what you are about to eat. '

And on alternatives to creon:

'CREON is basically an enzymatic preparation which helps in digestion of food and given to people who don't make enough of enzymes due to either some disease or due to removal of some or total of pancreas. CREON is a mixture of amylase,protease and lipase. Although there are various substitutes of CREON,but all of them contain these enzymes in various concentrations. A preparation called as VIOKASE 16 is available which has less quantity of these enzymes. The comparison of these two products is as below... VIOKASE 16 Lipase 16,000Units, protease 60,000Units, amylase 60,000Units; tabs. CREON 20 lipase 20,000 units, protease 75,000 Units and amylase 66,400 Units per capsule. In a nut shell you have to take these pancreatic enzyme preparations and there is no other product available which does the same work but doesn't have these enzymes. You must talk to your doctor for the detail and advise regarding usage of products having lesser concentration. I hope it helps,however you may revert to me for any further query.'

The Royal Marsden Hospital gastroenterologist Jervoise Andreyev has been doing some pioneering work on the long term digestive consequences of cancer treatment, and gradually other gastroneterologists are becoming more aware of the issues.

If you have reached this far on this post, you will probably be desperate enough to think about some of these possibilities to discuss with your doctor!

1 Reply

  • Such a life changing problem which is not discussed to an extent that it would be helpful, so thank you for this Alan. The best I can do to manage my life is to take industrial amounts of loperamide, not ideal, but it means I can go about my normal life, even so it sometimes doesn't work and can take several days for it to be present in my system to be effective again,being persistent and positiver really helps with all of the problems we encounter, so grit your teeth and look to the future.

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