One of the most frequent worries for anyone with irritable bowel syndrome (IBS) is whether there could be anything else wrong. Could it be an ulcer, a cancer, a gall stone? Could I have another condition as well as irritable bowel syndrome? Is my irritable bowel syndrome ‘masking’ the symptoms of another condition?
These concerns are entirely understandable, and they are made worse by the fact that there is no specific test for irritable bowel syndrome. We diagnose irritable bowel syndrome by recognising a conglomeration of symptoms and by performing a limited number of tests to rule out other conditions. It’s never possible to completely rule out all possible conditions, so there will always be an element of doubt and uncertainty.There will always be symptoms that are not completely explained, and the question of what else could be going on is often still at the back of people’s minds. It may seem to be an impossible situation; no one can have all the tests every time they get somewhat different symptoms.
But in fact most abdominal conditions are recognised by the way people describe their symptoms. The physical examination and the tests are there largely to confirm the diagnosis. Doctors listen out for patterns of symptoms that suggest certain conditions and perform tests to confirm or deny their suspicions. There is no mystery to this. Most of the time, common problems present with common, easily recognisable patterns. The purpose of this information is to describe these patterns so that people can begin to answer for themselves the question ‘Could it be something else?’
Whenever I read about a disease, I can make my symptoms fit the description. I just make myself more worried.
Yes, that was also me as a medical student! It is the risk you take when you try to find out more. You may wish to write down your symptoms or to keep a symptom diary before reading the rest of this information. Or you could describe your symptoms to another, more objective person. Finally, remember that you are not alone; it’s very human to worry, and most worries turn out to be unfounded.
When I finally saw my doctor, I found it very difficult to give a coherent description of my pain. I’m afraid he thought me a bit of a fool.
It is not unusual for people to find it difficult to describe their symptoms. It’s partly a matter of nerves, and partly not knowing what is and isn’t relevant. Doctors expect this and make allowances. Surprisingly, if you have had symptoms for a long time, it can be even more difficult to describe them. We describe what is abnormal for us by contrasting it with what is normal for us; for some people, the symptoms of irritable bowel syndrome can become such a part of their normal life that it can be confusing to distinguish the ‘normal’ from the ‘abnormal’.
What do doctors need to know about the nature of the pain in order to make a diagnosis?
Think about your pain before seeing the doctor and prepare answers to these questions:
• How long have you been unwell?
• Where do you get the pain?
• Does it go anywhere else?
• Is it always the same pain, or are there several pains?
• When you get the pain, is it constant or does it come and go in severity?
• How long does it last?
• What makes it better or worse?
• How often do you get it?
• Are you well between episodes of pain?
• Are there any associated symptoms such as nausea, vomiting, diarrhoea, constipation, weight loss or bleeding?
• Have you had anything like this before? What tests and treatment did you have?
• Describe your diet.
• Is there any family history of bowel problems?
• What medications are you taking now? (it’s a good idea to take a list with you)
• What medications, prescribed or from the chemist, have you tried? (again, take a list)
GALL STONES
Gall stones floating in the gallbladder usually cause no symptoms. If a gall stone becomes stuck in the duct leading out of the gall bladder (the cystic duct), the resulting pain is called biliary colic. If stones within the gall bladder cause inflammation and infection, we get cholecystitis. If a stone passes through the cystic duct but gets stuck in the common bile duct, there is usually no pain, but because the bile cannot flow out to the intestine, the person becomes jaundiced.
Biliary colic
The pain begins unexpectedly in the upper middle abdomen. Because eating causes the gall bladder to contract, the pain may occur after a meal, but it can occur at any time and may wake people from their sleep. The pain builds up over 15 minutes to an hour and can become very severe. It is called a colic, which implies that it comes in waves. But biliary colic is actually almost always a continuous pain. It is very much centred in the upper abdomen, but the pain can spread to the right upper corner of the abdomen and to the back. There is no inflammation so movement does not make the pain worse. Indeed, people often try to move about in the hope of shifting the pain, usually to no avail.
Nausea and vomiting are frequently associated with biliary colic, and this, along with the position of the pain, leads people to think that there might be something seriously amiss with their stomach. The pain is sometimes so high in the abdomen that they wonder whether they are having a heart attack. The pain continues until the stone either disengages or passes through the cystic duct, usually in half an hour to several hours. Although people usually feel rather ‘winded’ for a few hours after an attack, they are back to normal by the following day.
Attacks of pain only occur if a stone is blocking the cystic duct. This may happen every few weeks or months, but importantly stones are just floating in the gall bladder between attacks and there are no symptoms. This episodic (on-and-off) pattern of biliary colic contrasts with the symptoms of irritable bowel syndrome or indigestion, which tend to occur to some degree on most days.
The diagnosis of biliary colic is based on typical symptoms plus an abdominal ultrasound scan demonstrating stones in the gallbladder. The treatment is surgery to remove the gall bladder (cholecystectomy).
Cholecystitis
If the cystic duct is obstructed for a long time or the gall bladder wall is irritated by gallstones, the wall of the gall bladder will become inflamed. The pain is in the right upper corner of the abdomen, and that site will be very tender if someone presses it. The pain can be severe and may be, because there is inflammation, made worse by moving or deep breathing. Moreover, if the inflammation of the gall bladder irritates the diaphragm, the pain may also be felt in the right shoulder.There is often a fever, and people with cholecystitis usually look and feel unwell.
In contrast to biliary colic, which lasts for only a few hours, cholecystitis continues for days. It may settle on its own, but it may also require hospital admission. The diagnosis is confirmed by an abdominal ultrasound scan that shows gall stones in a thickened gallbladder.The treatment is to allow the inflammation to settle and then remove the gall bladder by an operation (cholecystectomy).
PANCREATITIS
Pancreatitis is an inflammation of the pancreas most frequently caused by drinking too much alcohol over a period of several years; less often, it is caused by gall stones. Acute pancreatitis occurs suddenly and lasts for a short period of time, usually resolving. Chronic pancreatitis does not improve but results in a slow destruction of the pancreas. Either form can cause serious complications that may be life-threatening.
Acute pancreatitis
The typical attack of acute pancreatitis begins with severe and persistent pain in the upper abdomen that often radiates (spreads) through to the back. It may follow a large meal and is associated with nausea, and persistent vomiting and retching. The pain is worse with movement, so people with it tend to lie still. It is not the sort of pain that allows people to carry on any sort of normal activity, and hospital admission is usually necessary. A simple blood test showing elevated levels of amylase, an enzyme released from the pancreas, confirms the diagnosis. Treatment usually involves intravenous fluids and pain relief for about a week.
Chronic pancreatitis
The pain of chronic pancreatitis may be identical to that of acute pancreatitis, but it may be continuous, intermittent or even absent. Although the classic description is of upper abdominal pain spreading through to the back, a different pattern is often seen: the pain may be worst in the right or left upper corner of the back, it may be spread throughout the upper abdomen, and it may even be felt in the front of the chest or on the person’s side. Characteristically, the pain is persistent and deep-seated, and does not respond to antacids. It can be made worse by alcohol or a heavy meal (especially one rich in fat). Often, the pain is severe enough to need frequent, powerful analgesics (painkillers).
The pancreas normally produces digestive juices, and chronic pancreatitis causes a gradual destruction of the pancreas. Consequently, in chronic pancreatitis there is often a failure to digest food properly, especially fat. This results in diarrhoea with loose, pale, offensive-smelling stools and weight loss. In the early stages of the disease, however, there may be a lot of pain but no other symptoms or signs. Diagnosis can therefore be difficult. In contrast to acute pancreatitis, blood tests are usually negative. Ultrasound or CT (computed tomography) scans of the abdomen may also be normal, and more sophisticated tests to show the ducts within the pancreas (called MRCP or ERCP tests) are usually necessary.
Chronic pancreatitis has been mistaken for irritable bowel syndrome. This is understandable as both cause persisting abdominal pain and diarrhoea, often on a daily basis. But there are a number of differences that help to distinguish the two conditions.
STOMACH AND DUODENAL ULCERS
The pain is in the upper abdomen. It is usually described as a sharp or burning pain that is disturbing but not severe enough to incapacitate someone in the way that biliary colic or pancreatitis might.
It used to be thought that duodenal and gastric ulcers could be distinguished by the timing of the pain in relation to food, duodenal ulcers being characterised by pain when the person was starving hungry, and relieved by meals, gastric ulcer pain being brought on by food, so that people avoided meals and lost weight. There is some truth in this, but the symptoms are often not as clear cut.
When all the many symptoms attributed to duodenal ulcers are carefully analysed, the one that discriminates best (although by no means 100%) is upper abdominal pain that wakes the person in the middle of the night and is relieved by taking antacids or milk. With gastric ulcers, the symptoms occur sooner after food, and vomiting and weight loss are more common, whereas they are rare with an uncomplicated duodenal ulcer.
Ulcers occur in the stomach and duodenum because of the acidic environment. Reducing the acidity with medication quickly abolishes the pain and allows the ulcer to heal. Traditional antacids that neutralise some of the acid in the stomach are only mildly effective. Drugs that reduce acid secretion into the stomach, such as omeprazole or ranitidine, are dramatically effective at reducing and then abolishing the pain within a few days. If these drugs have no effect, the pain is very unlikely to be due to an ulcer.
GASTRO-OESOPHAGEAL REFLUX (ACID REFLUX)
In this condition, acid from the stomach flows back (refluxes up) into the oesophagus. A hiatus hernia (a bulging of the stomach up through the diaphragm and into the chest) allows this to happen more easily, but acid reflux is very common and happens even with completely normal anatomy. Acid in the oesophagus causes a painful or burning sensation in the upper abdomen or chest, often described as heartburn.
Epigastric Pain – pain at this site can occur in a number of conditions, including gastric and duodenal ulcers, gastro-oesophagael reflux, dysmotility of the stomach, biliary colic and irritable bowel syndrome.
It can occasionally be felt in the back, but at other times there is no chest pain and it becomes difficult to distinguish it from ulcer pain. Sometimes the pain is only in the chest and can be severe enough to suggest a heart attack.
Symptoms typically occur after eating a large or fatty meal or drinking alcohol or coffee. Lying down, bending over or bending and lifting can all make it worse. Smoking, being overweight and pregnancy all contribute to reflux, but it can occur without any obvious cause and is the most common cause of indigestion. The frequency of symptoms varies. For most people, symptoms occur only occasionally, but there can be weekly or daily episodes of reflux. A gastroscope examination, in which a doctor puts a tube with a miniature camera on it down the person’s oesophagus, may show inflammation in the oesophagus from acid reflux, but in at least a third of cases the oesophagus and stomach look entirely normal.
As with ulcers, treatment with drugs that reduce acid secretion into the stomach, such as omeprazole or ranitidine, is dramatically effective at reducing and then abolishing the pain, usually within a few days. If these drugs have no effect, the pain is very unlikely to be due to acid reflux.
DYSMOTILITY OF THE STOMACH (NON-ULCER DYSPEPSIA)
The term ‘non-ulcer dyspepsia’ refers to indigestion symptoms in people who do not have simple reflux, ulcers, inflammation or structural problems in their oesophagus or stomach. It is thought to be mainly due to poor co-ordination of the muscles in the stomach (dysmotility) and responds only partly or not at all to drugs that reduce acid secretion. It is not irritable bowel syndrome, which is a mainly disorder of the large bowel, but can be thought of as an irritable bowel syndrome-type syndrome affecting the upper gastrointestinal tract.
Dysmotility (meaning bad movement) of the stomach is actually a very common disorder that few people have heard about. Poor co-ordination of the muscles in the stomach results in a variety of symptoms that can be misinterpreted as an irritable bowel. Mechanically, the stomach works as two parts. The upper part dilates to hold food coming down from the oesophagus. The lower part is controlled by a pacemaker that sends electric signals to the muscle, causing it to contract rhythmically and churn the food.
But both parts may fail to function normally. If the upper part fails to dilate to make enough room for the food, we feel full early on in the meal (‘early satiety’). Continuing to eat causes a feeling of pressure in the upper abdomen, which some people describe as bloating. There may also be some reflux of acid or food.
The lower part of the stomach may fail in several ways. The electrical signal from the pacemaker may temporarily stop altogether. It feels as though the food is just sitting in the stomach, and there may be upper abdominal bloating and nausea. We sometimes call this prolonged digestion, but it may feel worse than that name suggests. The electrical signal from the stomach pacemaker may also be too active. In this case, the stomach contractions may be too vigorous, causing pain, nausea and excess noise.
There is no specific test for dysmotility. Gastroscope examinations of the stomach and blood tests are normal. In retrospect, people usually realise that they have had the symptoms for a long time, but there is no weight loss and physical examination is normal. The combination of early satiety, bloating, prolonged digestion and often nausea and reflux strongly suggests the diagnosis.
Drugs that reduce acid secretion may be partly helpful but are frequently disappointing. Domperidone, a drug that increases the emptying of the stomach, helps over a third of people a great deal but may be ineffective in another third.
Most people find dysmotility disturbing but not incapacitating. It does not lead to more serious problems and usually gets better with time.
CROHN’S DISEASE
Crohn’s disease can easily be mistaken for irritable bowel syndrome and vice versa. In Crohn’s disease, there is lasting inflammation within the gastro intestinal tract, causing pain, diarrhoea, weight loss and sometimes obstruction or perforation of the bowel, which needs surgery.It can be a very serious disease, but in its milder forms physical examination and blood tests are normal, and the symptoms can be identical to those of irritable bowel syndrome.
Crohn’s disease can affect any part of the gut from the mouth to the anus. However, it most commonly affects the terminal ileum. This is the last part of the small bowel where it joins the large bowel in the right lower corner of the abdomen – the right iliac fossa. Pain at this site is therefore common in Crohn’s disease, but it is also the most common site of irritable bowel syndrome pain. Mild Crohn’s disease of the terminal ileum may show up with intermittent spasmodic pain in the right lower corner, sometimes with a disordered bowel habit. It can be indistinguishable from irritable bowel syndrome.
Pain in the right iliac fossa. This is the most frequent site of irritable bowel syndrome pain, but appendicitis, Crohn’s disease and constipation all cause pain here too.
Even with the usual tests such as a colonoscopy (putting a tube with a camera on up into the colon) to look at the large bowel, and a barium follow-through (swallowing a barium meal and taking X-rays while it is passing through the gut) to visualise the small bowel, Crohn’s disease in just a small segment of bowel can be missed. In time, the Crohn’s disease progresses and becomes more obvious. Weight loss, anaemia and a tender lump (your doctor may call it a ‘mass’) in the right lower area of the abdomen all suggest that something other than irritable bowel syndrome is going on, and this should be investigated further. It can, however, take time – months or even years – before the true diagnosis becomes apparent.
Even once the Crohn’s disease has been diagnosed and treated, the diagnostic problem recurs. irritable bowel syndrome frequently occurs in bowel that has been inflamed. As a result, it can be unclear whether residual or recurrent symptoms are due to ongoing inflammation or to irritable bowel syndrome that is also there. It is often a matter of judgement, and, as in many conditions, the doctor may need to try several treatments to see which works before being able to be more sure about the diagnosis.
APPENDICITIS
Acute appendicitis
Appendicitis is another cause of pain in the right lower corner of the abdomen, the most common site of irritable bowel syndrome pain. The initial symptoms of appendicitis are vague and not specific to this condition. People report feeling unwell and being off their food. To start with, the pain is usually in the middle of the abdomen and may even occur in the upper abdomen. There is often nausea and vomiting, and people may suspect an upset stomach. The pain becomes worse when the infection spreads through the full thickness of the appendix wall. The pain then localises to where the appendix is, in the right lower corner. This process usually takes 24–48 hours.
Chronic or recurrent appendicitis
The concept of chronic appendicitis, sometimes called a ‘grumbling appendix’, as a cause of ongoing or intermittent right lower quadrant pain had been discredited because many people had had an appendicectomy (a removal of their appendix) without their symptoms improving. However, some people being admitted to hospital with acute appendicitis do describe previous episodes of pain that were the same as their current pain in all ways except its severity. In more recent surveys involving over 3600 appen dicectomies, an average of 1.1% (range 0.01–3%) of people had had symptoms for at least 2 weeks before coming into hospital with more obvious appendicitis. When the removed appendix was examined, chronic appendicitis, as opposed to the usual acute appendicitis, was confirmed.
The concept of recurrent appendicitis is gradually being accepted, but many doctors still believe that similar prior episodes of abdominal pain make the diagnosis of appendicitis unlikely. So the very existence of recurrent and chronic appendicitis is still being debated.
ULCERATIVE COLITIS
In ulcerative colitis, the inflammation is confined to the large bowel and usually begins in the rectum and the lower bowel on the left side of the abdomen. It can cause diarrhoea and pain that comes in spasms in the left lower corner of the abdomen – the left iliac fossa. This is a common site for pain in irritable bowel syndrome, so mild ulcerative colitis can initially be misdiagnosed as irritable bowel syndrome.
However, there is usually, except in its mildest forms, some bleeding from the inflamed bowel with ulcerative colitis. Bleeding is not seen in irritable bowel syndrome, except when there are piles (haemorrhoids) as well.
Pain in the left iliac fossa. Pain from irritable bowel syndrome and constipation frequently occurs here, but pain can also be caused by uncomplicated diverticular disease, diverticulitis and any infection or colitis affecting the lower part of the bowel.
Persistent bleeding, particularly if there are also loose stools and the person needs to get to the toilet quickly (urgency), suggests a problem in the rectum. The rectum is easily seen by sigmoidoscopy. As ulcerative colitis nearly always affects the rectum, the diagnosis is rarely missed.
The inflammation of ulcerative colitis can usually be successfully treated by medication, but unfortunately even when this inflammation has been completely suppressed, people may continue to have irritable bowel syndrome-type symptoms. It can be difficult to know whether the loose stools, bloating and pain mean that the inflammation has come back or that the inflammation has caused an irritable bowel as well. In ulcerative colitis, the inflammation begins at the rectum, so, from a medical point of view, it is fairly straightforward to perform a limited examination of the rectum to assess how bad the inflammation is.
DIVERTICULAR DISEASE
The name ‘diverticular disease’ comes from the Latin word diverticulum, which means a ‘small diversion from the normal path’. Many people have small pouches in their colons that bulge outward through weak spots, like an inner tube that pokes through weak places in a tyre. These weak spots occur between muscle bands where the blood vessels go into wall of the bowel. Each pouch is called a diverticulum. Several pouches are called diverticula. The condition of having these diverticula is called diverticulosis or diverticular disease. When the pouches become infected or inflamed, the condition is called diverticulitis.
Diverticular disease is so common as to be virtually a normal part of ageing. At least half of all 60-year-olds and most people over the age of 80 will have diverticular disease, predominantly affecting the left side of the bowel. Most will have minimal if any symptoms. About 10–25% of people with diverticulosis will get diverticulitis (infection involving a diverticulum), and about 5% will get bleeding from a diverticulum.
Uncomplicated diverticular disease
We do not know how many people have symptoms caused by uncomplicated diverticular disease (meaning that there is no infection or bleeding). Many people are entirely free of symptoms, whereas others will get symptoms that are indistinguishable from those of irritable bowel syndrome.The most common symptoms are left-sided abdominal pain that comes in spasms, with a change in bowel habit, sometimes constipation and often pellet-like stools. Right-sided abdominal pain is unusual as 95% of diverticular disease is on the left. Eating extra fibre in the diet may help with symptoms more than it would in irritable bowel syndrome.
Diverticulitis
Infection in a diverticulum has been described as a ‘left-sided appendicitis’. Pain starts in the lower abdomen and tends to localise in the left lower corner. There may be a lot of tenderness at the site of the pain, and movement may make the pain worse. Nausea, fever and a change in bowel habit are common. If the inflamed piece of colon is next to the bladder, there are also urinary symptoms. The symptoms tend to be continuous. If the diverticulitis is mild, it will settle over a week or two with or without antibiotics. More severe cases require admission to hospital and occasionally an operation.
ADHESIONS
Adhesions are abnormal bands of fibrous tissue inside the abdominal cavity.They can occur after abdominal surgery, or after any inflammation within the abdomen such as Crohn’s disease or endometriosis (deposits of tissue similar to the tissue that lines the inside of the uterus, but occurring in the abdomen outside the uterus). Adhesions are responsible for the majority of bowel obstructions in the Western world. They also show up as chronic abdominal pain and infertility. Up to one third of people who have undergone open surgery on their abdomen are readmitted to hospital to deal with problems related to abdominal adhesions.
Small bowel obstruction from adhesions
The muscles of the small bowel continually contract and relax to propel digesting food onwards, so the small bowel is in a continual state of activity and motion (termed peristalsis). In doing this, it may become wrapped around or kinked across an adhesion. This causes the flow to become blocked at that point. The muscles react with stronger and stronger contractions to try and force the food on. These contractions are felt as waves of severe pain that come and go in the middle of the abdomen. The accompanying nausea and vomiting are due to back-pressure.
Central abdominal pain. Obstruction to the small or large bowel can produce severe, colicky pain at this site. Pain here can also be caused by disorders of the stomach, duodenum or aorta.
It is usually necessary to go into hospital for pain relief and rehydration. The obstruction mostly resolves over 24–48 hours, but surgery is occasionally needed to cut the adhesions. This is only done if absolutely necessary as it can cause even more adhesions.
Occasionally, the obstruction to the small bowel is incomplete, and the pain and vomiting less severe. People with this problem learn that if they avoid food, and just drink for 24 hours, the problem will settle without having to go into hospital. Such episodes generally occur very intermittently every few weeks, months or years. Between them, bowel function is normal, unlike irritable bowel syndrome, which tends to have some symptoms on most days.
Chronic pain from adhesions
Ongoing pain can also be caused by adhesions if they exert an abnormal pull on organs in the abdomen, or if nerves become trapped within them. This problem is difficult to diagnose as there are no abnormal physical signs, blood tests or scans. It can be distinguished from irritable bowel syndrome because there are usually no other signs of abnormal bowel function. There is pain but no bloating, diarrhoea, constipation or abnormal stools.
RENAL COLIC
This is a pain caused by a sudden obstruction to the flow of urine from one kidney as a result of a stone getting stuck in the tube leading from the kidney to the bladder (the ureter) or just inside the kidney.The pain occurs only on the side with the obstruction. The usual course is for the pain to begin in the loin, in the side or in the upper abdomen, and travel down to the lower abdomen. It may spread into the pubic region, or into the penis or testicles in men. It occurs in waves and can be very severe. There is often also nausea and vomiting. Once the stone has passed, the pain goes away, and it only returns if the ureter is obstructed again by another stone. Between episodes, there are no symptoms. Bowel habit is not usually disturbed, except possibly by constipation from analgesics the person has taken to help the pain.
SLIPPING RIB SYNDROME
The slipping rib syndrome, sometimes also called costochondritis, may be caused by excessive movement of the front end of the costal cartilage. This is the cartilage that attaches the rib to the breastbone (sternum). It is usually the tenth rib that causes pain because, unlike ribs one to seven, which attach to the sternum, the eighth, ninth and tenth ribs are attached at the back to each other by loose, fibrous tissue. This means that there is more movement, but there is also a greater likelihood of trauma. Slipping rib syndrome is also more likely to occur in the lower ribs because the blood supply to the cartilage and ligaments is poor.
Costochondritis is usually easily recognised because people can point to localised pain and tenderness in the lower chest. Occasionally, however, they feel their pain to be more in the abdomen and just under the ribs. The doctor will then initially look for a problem in the abdomen, but the diagnosis is helped by the fact that the pain is not related to eating but is worse with breathing or movement.
FUNCTIONAL ABDOMINAL PAIN SYNDROME
Functional abdominal pain syndrome (also called chronic idiopathic abdominal pain or chronic functional abdominal pain) is fortunately uncommon. It is a severe pain that occurs daily and disturbs normal daily activities. Unlike irritable bowel syndrome, the pain is not related to bowel function. Moreover, it can last into the night and disturb sleep, which is unusual with irritable bowel syndrome. There are often underlying psychological problems, which the doctor can see but the person may not be aware of so keeps trying to discover a physical cause for the pain. The cause of this syndrome is unknown.
WHAT SHOULD MAKE ME WORRY ABOUT CANCER?
Cancer of the stomach
Doctors recognise what are called ‘alarm symptoms’, which suggest a serious condition. These include anaemia caused by iron deficiency, weight loss, difficulty swallowing, persistent vomiting or bleeding. Bleeding from the stomach appears as blood in the vomit, or as a melaena stool (a shiny black, loose stool, like tar, composed of partly digested blood). But even in patients with these symptoms, cancer is found in fewer than 10% of cases. Stomach cancer is rare under the age of 50.
Cancer of the bowel
A change in the bowel habit to looser, more frequent stools that lasts for more than a few weeks may be the first sign of bowel cancer. People with this symptom, especially if they are over the age of 50 (as bowel cancer is rare under the age of 50) will usually need an investigation of their bowel; this will usually involve a colonoscopy (examination using a tube with a miniature camera) or a barium enema (which shows up the bowel on an X-ray). Anaemia due to iron deficiency, weight loss and bleeding from the back passage are also worrying symptoms that need looking into. Again, most people with such symptoms do not turn out to have cancer. Pain without any of the other above symptoms is unusual in early cancer.
Cancer of the pancreas
The symptoms of cancer of the pancreas are very similar to those of chronic pancreatitis. Pain in the upper abdomen that spreads to the back, weight loss and diarrhoea are typical symptoms. Sometimes none of these symptoms occurs and the first sign of the disease is jaundice.
ENDOMETRIOSIS
Endometriosis is a puzzling disease affecting women in their reproductive years. The name comes from the word ‘endometrium’, which is the tissue that lines the inside of the womb (uterus) and builds up and sheds each month in the menstrual cycle.In endometriosis, tissue like the endometrium is found outside the uterus, in other areas of the body. In these places, it also builds up each month and then bleeds at menstruation. The bleeding irritates and inflames adjoining tissues. It can cause pain and other symptoms associated with menstruation.
Endometriosis is a common finding during operations for other problems, so most of the time it probably causes no symptoms at all. It is, however, also known as a ‘great mimicker’, and if your symptoms are very closely associated with your periods, endometriosis should be considered. It is usually diagnosed by a laparoscopy, a small operation in which a telescope is placed into the abdominal cavity.
MEDICALLY UNEXPLAINED ABDOMINAL PAIN
What do you mean by ‘medically unexplained’?
This means that the symptom or symptoms do not fit any of the recognised medical conditions.
Does that mean that it’s all in the mind?
That is not a phrase we currently use. People readily accept that physical illness can cause psychological symptoms such as anxiety, depression and fatigue, and there is no stigma attached to this. It is also common for psychological distress to manifest as physical symptoms, for example a tension headache. Today, we recognise a psychological and a physical component to all illnesses.
But you’re saying that there’s no physical explanation for my pain! Therefore you must be implying a mental explanation! Do you mean I’m mad?
In a few people, there may be a psychological problem underlying their pain, but that is notwhat is being implied when doctors cannot find a physical explanation for a pain.There may not be a physical explanation for a headache. No brain tumour, no hangover, nothing wrong with the eyes. It may or may not be associated with stress, and it may or may not be a tension headache. Calling it such doesn’t imply that the pain isn’t real, nor does it suggest any form of ‘madness’. You could think of your pain as the equivalent of a tension headache in your abdomen.
I am not stressed or depressed. I sometimes get upset, angry and frustrated by this pain that nobody will do anything about. I’m fed up with being fobbed off with another scan, a different painkiller or another suggestion that I see a shrink. Why can’t you find out what’s causing it and give me the right treatment?
Unfortunately, modern medicine has its limitations. If you have seen a number of doctors and had the relevant tests, and your symptoms have not changed significantly over a long time, it is unlikely that any doctor will discover a precise diagnosis or a simple cure for you.
We all want a ‘magic bullet’ to sort out the cause of any illness, once and for all. Sadly, that is not always or even usually possible. If tests and treatments aren’t being any help, you may gain more by approaching things from a different direction, for example working on coping strategies or relaxation therapies.
But I am in pain. The pain is real. Something physical must be wrong.
Unfortunately, this isn’t necessarily the case. Most people’s concept of pain comes from the experience of minor injury, which we encounter all the time. A twisted ankle hurts. A cut on the finger hurts – and the bigger the cut, the more it hurts. We see the pain as representing physical damage.
The worse the pain, the worse the damage. But this concept is misleading. For starters, it isn’t even true of minor physical injuries. How much something hurts often depends on how much attention we pay to it. If we are distracted by other activities, we can ignore an injury. For example, footballers play on after a little dab from the physiotherapist’s sponge. Wouldn’t it be great if that sponge were available on the NHS? And what about badly wounded soldiers carrying on with apparently no pain? Yet at other times we can be disabled by headaches, or tummy aches, or back pain, when there is no discernable physical damage for anyone to see.The severity of pain is not proportional to physical damage.
I feel embarrassed that, after stridently complaining about my pain, nothing abnormal was found in any of the tests.
This is actually quite common, so don’t feel embarrassed. There is no stigma attached to having symptoms without physical signs, or test results that don’t show anything. Contrary to popular perception, there is often no relationship between the severity of the symptoms and the seriousness of the underlying disease.
If my tests are normal, will my doctor think that I have wasted his time?
Not at all. Most of the tests we perform today give normal results. This reflects the increasing availability of tests and our increasing inability to tolerate uncertainty. On the one hand, it can be argued that when symptoms have occurred for a long time they are unlikely to represent serious disease, and that tests to confirm that there is nothing amiss are unnecessary. On the other hand, if symptoms have persisted for a long time, they may well persist for a still longer time, and the sooner you know that there is nothing there, the easier the symptoms will be to deal with.
How is it that our perception of pain can so inaccurately represent what’s actually happening?
Our body is full of sensors that continually feed information to our central nervous system. These signals are processed and modified in the spinal cord and brain. Only a small proportion of the sensory signals generated actually reach our consciousness: most of the information received is processed subconsciously. When signals denoting pain reach the spinal cord, they compete with signals relaying sensation. So, if you cut your finger, it hurts less if you shake your hand or place it under a cold tap. This is also the principle behind TENS (transcutaneous electrical nerve stimulation), in which sensations produced by electrical stimulation reduce pain by competing with the pain signal at the spinal cord.
The signal can also be amplified or dampened down by nerve pathways coming down from the brain through the spinal cord. It is thought, for example, that stress or psychological distress can cause signals from the brain to amplify the pain signals coming into the spinal cord. So a signal that would previously have denoted a minor disturbance, or even normal function, and might not even have been registered consciously, now enters consciousness as pain.
I didn’t understand that. Can you give me an analogy?
Imagine playing your favourite music CD in your state-of-the-art hi-fi. The music is beautiful. You go to the kitchen for a cup of tea, and your young child plays with the controls on the hi-fi. When you come back, the music is awful! Is there something wrong with the hifi, or is it the CD? No, it’s to do with the way the knobs on the hi-fi are set – a signalling problem, if you like, between the CD and the speakers. How this happens in the human body is gradually being worked out. With irritable bowel syndrome, you can read bowel for hi-fi, food for CD, and spinal cord plus lower brain for hi-fi controls.
I still don’t want to see a shrink.
There are some people who would jump at the chance to have an intelligent and knowledgeable person help them to understand themselves and their reactions to the world around them. In some cultures, in fact, seeing a psychologist or psychiatrist is normal behaviour for normal people – the intellectual’s equivalent of a ‘lifestyle guru’. But it is expensive and time-consuming too.There are simpler alternatives you can try if you prefer, including hypnosis, meditation and other relaxation therapies.
I don’t want to take antidepressants. I’m not depressed.
I can understand how you feel. Some people feel embarrassed even by the suggestion of antidepressants. In the past, when anti depressants were relatively ineffective and full of side effects, they were reserved for really desperate cases. Taking an antidepressant labelled people as severely, even hopelessly, depressed. With the introduction of the tricyclic antidepressants, and more recently the SSRIs, this perception has changed. Anti depressants are necessary for some people in the way in which medication for blood pressure is necessary for others. Certain antidepressants are frequently used for ongoing pain, whatever its cause. They are used for back pain, cancer pain, irritable bowel syndrome and unexplained pain.
These medicines are often effective at very low doses. For example, the antidepressant amitriptyline is commonly used for pain at a dose of 10–40 mg a day, whereas the dose for depression is higher, at 75–150 mg per day. In the context of pain, antidepressants are not used to cheer people up and will work equally well whether or not the person is depressed. Moreover, the smaller dose means minimal if any side effects. Antidepressants are thought to work by altering processing of the pain signals in the spinal cord, but no one knows exactly how. Antidepressants take about 4 weeks to help depressed patients but can help immediately in pain syndromes. Some people take low-dose amitriptyline on and off depending on the severity of their pain.
It’s also worth considering that you might just be depressed. Depression is an illness, not a stigma, and like all illnesses, it can present in atypical ways. It is possible for the physical symptoms of depression to outweigh the psychological symptoms. You may benefit from taking the full dose of a modern antidepressant; these are now effective, with minimal if any side effects. It could take about 1 month of treatment before you see any benefits, but years of suffering might be relieved.
If I am depressed, it’s because of my illness. Depression is not the cause of my pain. Is there really any point in taking antidepressants?
You may have what is called a ‘reactive depression’. This is when the depression follows a life event or events, and would not have occurred without that event. With support, most people can face life’s crises, adjusting to their new circumstances. Hence, in most people, reactive depression tends to stop of its own accord.
But if you have ongoing ill health, especially when there has been no clear diagnosis or treatment, adjusting can be very difficult. Failing to adjust leads to a prolonged depression, and this depression itself makes adjustment more difficult. It is easy then to feel that any solution or help that’s offered won’t help. You can become trapped in a vicious circle. By lifting the depression, antidepressants can break this. You may still not have an explanation or a treatment for your original illness, and the uncertainty will still be there, but the symptoms will have less of an effect on your life.
I still don’t want to take antidepressants. Is there anything else to try?
Cognitive behavioural therapy is a short-term psychological treatment that is particularly suitable for specific, focused problems. It is based on the assumption that ‘thought intercedes between stimulus and emotion’. In other words, whatever is causing the initial pain provokes thoughts, assumptions or interpretations, which then lead to emotions. The emotions will interact with whatever has caused the reaction in the first place, amplifying it, making it worse, and so on into a vicious circle. For example, the pain may generate thoughts such as ‘I’ve got cancer!’, or ‘I can’t cope today’, or ‘Those doctors are bloody useless.’ These thoughts generate negative emotions such as fear, hopelessness and anger, which in turn make the pain worse.
Cognitive behavioural therapy aims to understand the thought processes that the symptoms produce and how they can make things worse. It then aims to teach you to substitute more positive thoughts to break the circle of negative thoughts leading to negative emotions, leading to more symptoms.
Is this another way in which doctors try to blame what they don’t understand on their patients? You don’t understand my illness, you can’t do anything about it, and that must be my fault! Isn’t that what generations of doctors have done?
I have some sympathy with this viewpoint. Since the dawn of history, people have reported symptoms that their doctors could not explain in terms of actual physical findings. The theories dreamed up to explain such symptoms in the past appear ludicrous today, and no doubt today’s offerings will amuse future generations.
In the Middle Ages, for example, much was blamed on the uterus. In fact, the word ‘hysteria’ comes from the Latin hystera, meaning womb. The treatment of ‘hysteria’ centred on ‘physical’ treatments for the uterus, such as massaging the pelvic area, applying various creams and ointments to the female genitals, and even manual stimulation of the woman’s genitals by the doctor to ‘hysterical paroxysm’, presumably orgasm! Indeed, the vibrator was originally developed as a medical treatment for hysteria. As these treatments didn’t work, the word ‘hysteria’ came to mean symptoms caused by wild and uncontrollable emotion. The same thought process sometimes happens today too, but I think our explanations and treatments are more scientifically based and objectively tested than ever before.
More of a problem is some people’s great focus on the mind–body problem. They are unable to perceive how the two interact. Any suggestion of a psychological component for their symptoms is utterly rejected and seen as an insult, when nothing could be further from the truth. This approach unfortunately means that they deny themselves a huge avenue of help and self-understanding.
I’m still worrying that my pain represents a cancer. Could the doctors have got it wrong?
No doctor or medical test is perfect. But for cancers to cause pain, they usually have to be large enough to obstruct the bowel or seriously disrupt an adjacent organ. And such large tumours are unlikely to be missed. In my experience, when people have pain, either the cancer is obvious or there is no cancer.
SUMMARY
Most abdominal conditions are recognised by the way in which people describe their symptoms. Doctors listen out for patterns of symptoms that suggest certain conditions and perform tests to confirm or deny their suspicions.
To make use of your doctor – and this book – it is vital to give a clear description of your pain especially in terms of:
• the site of the pain;
• its timing, how often it occurs and for how long;
• what makes it better or worse;
• associated symptoms such as nausea, vomiting, diarrhoea, constipation, weight loss or bleeding.
Pain does not necessarily mean physical damage or disease.
Pain caused by cancer is usually associated with other symptoms, especially weight loss.
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