When you and your doctor should be concerned.

A woman came up to me at The Allergy and Free-from Show recently.  She looked embarrassed and deeply unhappy.  ‘Sometimes when I get an urge to go to the toilet, I pass clear water from my rectum.  I have told my doctor and he does not know what this is, though a few years ago I was diagnosed with some bowel inflammation.  My father and some members of my family have had colitis.  I have tried tablets for IBS and a low FODMAP diet and nothing seems to work. Is this normal for IBS?’  I assured her that although IBS can cover a multitude of ills, this was an unusual symptom.  My mind scanned the various diagnostic possibilities.  Did she have inflammatory bowel disease or perhaps diverticular disease?  Was this mucus she was passing?  Or did she have a fistula, a connection between her bladder and bowel?  I suggested that she collect a sample of what she was passing and ask her doctor to arrange further investigations.

Another woman, in her late fifties, wrote how over the course of a few weeks she had developed pain in her abdomen and become constipated for no obvious reason.  She had never had these symptoms before. ‘I can feel a hard lump in my tummy; it is always there, but my doctor tells me it is just faeces and nothing to worry about. But I am worried it could be something more serious.’  Again, I advised her to return to her doctor and demand to be referred for a colonoscopy.   I later heard she had cancer.

These two stories epitomize how difficult it is to know what to do if you have been diagnosed with IBS and have some new symptoms.  You don’t want to keep bothering your busy doctor for something trivial, but at the same time you don’t want to risk missing a potentially life threatening condition like colitis or cancer.

The problem is that none of the symptoms of IBS are specific.  They indicate that the bowel has been ‘irritated’ by something.  This could be an infection, inflammation, cancer, a change in bacterial population, a food intolerance or stress.  Doctors, whether they are GPs or gastroenterologists see their primary role to make sure ‘beyond reasonable doubt’ that their patients do not have treatable diseases that could be life threatening.

Common illnesses occur commonly.  One in every six people in the UK have IBS, whereas  only one in a hundred have coeliac disease and as few as one in 2500 (0.04%) have inflammatory bowel disease (IBD). The prevalence of bowel cancer is slightly greater (0.05%).  That doesn’t mean these relatively uncommon conditions should be ignored.  They must all be ruled out ‘within reasonable doubt, yet they often ‘show their hand’ by red flag symptoms, such as rectal bleeding or weight loss.  We haven’t yet reached the stage when everybody can book themselves in for a whole body scan as a ‘human right’ and if everybody with IBS had a colonoscopy it would break the health service budget.  Nevertheless, everybody with a new diagnosis of IBS should have samples of blood screened for anaemia, infection, inflammation or coeliac disease and their stools sampled for bowel cancer and inflammatory bowel disease (Faecal Calprotectin is a sensitive test for IBD but is not universally available in primary care).

A diagnosis of IBS doesn’t mean you can’t get other conditions.  So, if you subsequently develop symptoms that don’t quite fit with IBS, they should be taken seriously and not just assumed to be part of IBS.  This does not necessarily mean that the original diagnosis was wrong.  Crohn’s and  colitis are as common in people with IBS as in those without IBS.  Red flag symptoms like persistent passage of blood, or continued weight loss for no clear reason, must always be investigated promptly.  The two scenarios described above would to my mind constitute more than reasonable doubt; both require further investigation.  Both patients had a feeling that something was wrong.  This was not their usual IBS.  Passing water from the rectum is not normal for IBS; neither is a constant lump in the belly.

But the ongoing warp and weft of your Irritable Bowel, that bloats you every afternoon at work, that holds you up in the toilet every morning and sends your gut into spasm every time the children ‘play up’; this needs to be managed more than diagnosed.   Self care is not just knowing how to manage your symptoms, it is also about knowing your illness; what food or life situation may make your symptoms worse and what you can do to make them better.  You do not need to go to your doctor every time you have a flare up.  However depressing and frustrating it is, this feels much worse if your doctor is also frustrated and cannot help.   Many people with IBS gradually learn what to do from their friends, selected sites on the internet, The IBS Network and their own experience.

Self care is also about knowing when something is not normal for you and when you need further help.   So read up about your illness, understand what IBS is about, but most of all, get to know your illness and if things aren’t right trust your intuition and persist until you get the attention and the investigations that you need.