Inflammatory bowel disease
About Inflammatory bowel disease
In this section you or a loved one can find out more about medical treatments and alternative therapies for inflammatory bowel disease (IBD). Perhaps most importantly, it emphasizes the importance of having a network of people in your life (and online) who are informed, supportive and understanding. It also includes practical suggestions that may make it easier to live well with this condition.
What is inflammatory bowel disease (IBD)?
Crohn’s disease is named after Dr. Burrill Bernard Crohn, the person who first described the disease in the 1930s.
Inflammatory bowel disease (IBD) is the term used for two separate but similar conditions: Crohn’s (KRO-ns) disease (CD) and ulcerative colitis (UL-sur-uh-tiv koe-LIE-tis) (UC). Both are long-term (“chronic”) diseases that cause all or part of the bowel (gastrointestinal (GI) tract) – where food is digested in the body – to become severely inflamed (red and swollen) and ulcerated (with sores). An abnormal response of the body’s immune system plays a role in these two main forms of IBD.
These two conditions should not be confused with irritable bowel syndrome (IBS; also called “spastic colon” or “nervous colitis”), a disorder that affects the muscle contractions of the colon. Because it does not involve intestinal inflammation, IBS is a much less serious disease than CD or UC. But the symptoms are very similar, which often leads to misdiagnosis. In a Canadian survey of over 500 people with the more serious IBD, nearly one in two (48%) had been told by a medical professional that they were likely experiencing IBS before the true cause of their symptoms was discovered.
For some people, uncontrolled IBD can very negatively affect their quality of life with ongoing debilitating symptoms, reduced ability to work, social stigma (or fear of it), bathroom access issues, difficulty with physical intimacy and restricted career choices. Others, while sometimes bothered by discomfort and inconvenience, don’t find it as hard to live with CD or UC. How severely IBD interferes with life and livelihood varies a lot from person to person.
More than 1 in every 150 Canadians has IBD.
Approximately 233,000 Canadians live with inflammatory bowel disease (IBD): 129,000 with Crohn’s disease (CD) and 104,000 with ulcerative colitis (UC). Over 10,200 new cases are diagnosed every year in Canada – 5,700 with CD and 4,500 with UC. Canada is among the highest reported prevalence (number of people with CD or UC) and incidence rates (number of new cases per year) of IBD in the world. Prince Edward Island has the highest prevalence of IBD in Canada, and Ontario has the greatest number of IBD cases.
IBD needs to be managed for life. It is most commonly diagnosed in otherwise healthy active people in their late teens or early 20s, but it can appear at any age.
What causes inflammatory bowel disease (IBD)?
Inflammatory bowel disease (IBD), the umbrella disease category that includes Crohn’s disease (CD) and ulcerative colitis (UC), is still mysterious. Progress has been made in IBD research, but investigators do not yet know what causes it.
No one knows what triggers IBD, but there’s consensus as to what doesn’t. Researchers no longer believe that diet and stress are main causes, although stress, certain foods or inadequate nutrition may aggravate IBD symptoms. That’s why easing stress, maintaining a proper diet and good nutrition can really help reduce the frequency and severity of IBD symptoms.
Scientists suspect that IBD inflammation involves a complex interaction of factors: genes, the immune system and something environmental that is hard to specifically identify as a cause. Antigen (symptom-causing) particles in the environment may be the direct cause of the inflammation, or these may prompt some people’s immune systems to “go into overdrive” trying to protect the body. One way the immune system does that is via inflammation, and it appears that the immune systems of people with IBD produce over-reactive, poorly controlled inflammation in the GI tract. Researchers believe that once the IBD patient’s immune system is “turned on,” it does not know how to properly “turn off”. As a result, inflammation damages the bowel and causes IBD symptoms. This is why the main goal of medical therapy for IBD is to help patients regulate their immune system.
About 3 in 20 people with CD, and 4 in 20 people with UC have a close relative who also has it.
Most people with IBD don’t have a family history of the disorder. But because you’re more likely to develop IBD if you have a parent or sibling with the disease, scientists suspect that genes may play a role. It is not yet completely understood how or why certain genes or changes in genes are associated with CD or UC, but it is a major focus of current research.
CD and UC have one major feature in common: an abnormally reactive and long-lasting immune system response. Normally, the immune cells protect the body from infection. In people with IBD, however, the immune system mistakes food, non-harmful bacteria and other things that are supposed to be in the bowel, for substances that pose a threat. In response, it attacks the bowel lining and produces chronic inflammation. This inflammatory reaction continues without proper control, which then damages the bowel wall. This is when IBD symptoms occur, such as diarrhea and abdominal pain.
Some scientists think that UC may result from an interaction of a viral or bacterial infection of the bowel and your body’s natural immune system response. Normally, your immune system will cause temporary inflammation to combat an illness or infection, and the inflammation subsides as you recover. In people with UC and CD, however, this inflammation can persist long after your immune system should have finished its job.
It is important to note that, just because a risk factor (geographic location, for example) is associated with a greater prevalence of IBD, this does not necessarily mean IBD is caused by it. Nor does the absence of a risk factor necessarily mean protection from IBD.
Risk factors may include:
In most cases, IBD starts before the age of 30. However, it can show up at any age – some people develop the disease in their 50s or 60s.
There is fairly good evidence that the younger you develop the disease, the more aggressive it will be.
It’s also thought that if you develop the disease early in life, genetics are likely playing an important causative role. If disease onset is later in life, it is thought to be more due to environmental factors.
IBD occurs in all populations, but people of European and Nordic descent have the highest risk of the disease. If you’re of Ashkenazi Jewish descent, your risk is even higher.
People who have a parent, sibling or child with IBD have a much higher risk of developing it themselves.
Isotretinoin acne medication use
Isotretinoin is a medication sometimes used to treat scarring cystic acne or acne that doesn’t respond to other treatments. There is conflicting information as to whether isotretinoin use alone or in combination with antibiotics can increase the risk of inflammatory bowel disease. Some studies have suggested a possible link, while other studies have found no such evidence.
Smoking is a notable environmental factor for just one of the inflammatory bowel diseases: CD is more prevalent among smokers. Smoking actually puts you at a lower risk of developing ulcerative colitis (UC) - it is more prevalent among ex-smokers and non-smokers.
Not only is smoking one of the largest risk factors for developing CD, it also aggravates pain and other symptoms and increases the risk of complications. Smoking is the single most important controllable risk factor for developing CD, and if you already have CD and still smoke, quitting would very likely reduce the damage and suffering caused by the disease. Talk to your doctor and look into the many available smoking cessation and support programs to find one that works for you.
Some pain relievers
Ibuprofen, naproxen and Aspirin have been shown to cause gastrointestinal ulceration (sores in the lining of the GI tract) and may make IBD worse. Acetaminophen poses a much lower risk. Discuss the use of any pain medication with your doctor.
Where you live
It is very probable that environmental factors play a role in the development of IBD. CD, for example, is much more common in Western industrial nations than in other regions of the world.
People in urban areas and those who work white-collar jobs have a higher risk of developing IBD. For unknown reasons, people living in northern climates also seem to be at greater risk.
IBD affects both genders almost equally. However, UC is slightly more common in men and CD is slightly more common in women.
Inflammation of the appendix severe enough to require an appendectomy may increase the risk of developing CD within five years’ of having your appendix out. However, an appendectomy actually puts you at a lower risk for developing UC.
- IBD is a complex disease that results from the interaction of an individual’s genes with environmental factors and the immune system.1
- You certainly aren’t alone. There are approximately 233,000 Canadians living with inflammatory bowel disease (IBD): 129,000 with Crohn’s disease (CD) and 104,000 with ulcerative colitis (UC).2
- IBD is a “chronic” disease, which means it won’t go away. But that doesn’t mean you can’t have a long, fulfilling life.1
- Medication can be used to help control IBD.2
- Even though you have Crohn’s disease or ulcerative colitis, you can still lead a full and productive life. However, when your disease is active, it can have a significant impact on your quality of life.3
- Although IBD is a chronic illness, it doesn’t mean that you’ll be sick every day.1
- Most people living with IBD are healthy more often than they are sick.1
- Even though you’ll have IBD for life, it doesn’t have to take over your life. Many things can be done to make it much easier for you. Talk to your doctor about it!1
- The Crohn’s & Colitis Foundation of America (CCFA). About IBD. 2016.
- The Crohn’s and Colitis Foundation of Canada (CCFC). 2012. The Impact of Inflammatory Bowel Disease in Canada: 2012 Final Report and Recommendations.
- The Crohn’s & Colitis Foundation of America (CCFA). 2014. The Facts About Inflammatory Bowel Diseases.
What are the effects of inflammatory bowel disease (IBD)?
Although Crohn’s disease (CD) and ulcerative colitis (UC) have a lot in common, there are important differences between them, such as which parts of the bowel each affects; what depth of tissue in the bowel they affect, and the pattern of symptoms each tends to cause. A key difference between CD and UC that helps doctors distinguish between them is that CD can affect all the tissue layers of the bowel wall, while UC only involves the innermost layer of the bowel.
Sometimes CD of the ileum is referred to as ileitis. When it affects the colon, it may be called Crohn’s colitis. If it involves both the ileum and the colon, the disease may be referred to as ileocolitis.
The inflammation of CD can occur in the lining of any part of the gastrointestinal tract, from the mouth to the anus; the GI tract consists of the esophagus, stomach, small bowel, and large bowel. Most commonly – for half the people who have it – CD affects the end of the small bowel, called the ileum. Other parts of the small bowel and the large bowel are also often affected. While rare, CD can affect the mouth, esophagus and stomach. The inflammation caused by CD can involve different areas in different people.
UC that involves only the rectum is called proctitis. If the disease affects the left side of the colon, it is referred to as leftsided colitis. If it involves the entire colon, it is called pancolitis.
UC causes long-lasting inflammation (soreness and swelling) in the large bowel (which includes the colon and rectum). UC always affects the rectum and in 25% of cases its symptoms can be detected in that area only. In the other 75% of cases it affects the colon as well.
Another distinguishing diagnostic feature of UC is that, if it affects more than just the rectum (as in 75% of people with it), the inflammation appears there first then spreads up into the colon in a continuous line. Inflammation from CD, on the other hand, may appear in separate “zones” throughout the GI tract, affecting some sections and not others – which never happens with UC. The unaffected sections in the GI tracts of people with CD are known as “skip” areas. These pattern differences between CD and UC are important indications of which disorder is causing the inflammation.
Crohn’s disease (CD) and ulcerative colitis (UC) are both chronic, relapsing conditions. Chronic means they are ongoing. Relapsing means there are times when symptoms flare (periods called “relapse”), and times when there are few or no symptoms (periods called “remission”). People with IBD experience remission, alternating with relapses causing mild to severe pain and damage to the bowel lining.
The severity and frequency of symptoms varies from person to person, and symptoms may change over time. The first episode (“flare”) of symptoms is often the worst. Medical treatment for IBD is aimed at bringing the conditions into a state of remission; to keep a person symptom-free or as comfortable and healthy as possible for as long as possible.
Your specific symptoms will depend on whether you have UC or CD and, in many cases, on the location of the disease in your bowel.
The most common symptoms for both include:
- Diarrhea: the most common sign of IBD, with frequent visits to the bathroom – up to 20 or more times a day. Although diarrhea is the most common symptom of IBD, other people may experience constipation.
- Frequent and/or urgent bowel movements: in a Canadian survey of more than 500 IBD sufferers, 86% reported having more than five bowel movements or “false urges” a day during a disease flare (active period), and 14% reported more than 20 per day.
- Bloody stool.
- Abdominal pain and cramping: in the same Canadian survey, during a disease flare (active period), 44% of sufferers described their pain as agonizing and debilitating or as a steady pain that lasted for hours.
People with IBD may also report symptoms such as fatigue, lack of appetite and weight loss.
Because CD and UC are autoimmune diseases, meaning they are conditions that occur when the immune system mistakenly attacks and destroys healthy body tissue, people living with IBD also frequently suffer additional medical problems. In the Canadian survey of over 500 IBD sufferers, high percentages of these people also reported the following conditions:
- Joint pain: 72%
- Skin problems: 42%
- Eye inflammation: 23%
IBD can also take a toll on mental health. Of those surveyed, 66% had experienced depression and anxiety during a flare of their disease.
Contact a health care provider if you have:
- Persistent diarrhea
- Persistent abdominal pain
- Unexplained weight loss
- Blood in your feces (stools)
Family medicine specialists and general practitioners (GPs) are usually the doctors that diagnose IBD, but it is common for them to refer patients to a gastroenterologist for help managing UC or CD.
Crohn’s disease (CD) affects all the layers of the bowel wall – causing inflammation and swelling as well as ulcers. In turn, this irritation may lead to bleeding. It also prevents the bowel from absorbing nutrients from food.
If you have CD, you may experience any or all of the following symptoms:
- Diarrhea (sometimes bloody)
- Stomach cramps or pain
- Where the pain is felt depends on which part of the bowel is affected. The last part of the small bowel (ileum) is the part most likely to have inflammation and scarring. Consequently, a common area of pain is the lower right side of the abdomen – first time pain here is sometimes mistaken for appendicitis.
- A sudden change or worsening of pain may indicate a complication (see below), so you should speak to your health care provider immediately if one is suspected.
- Unexplained weight loss
The symptoms can be exhausting – and in addition to causing fatigue, may reduce your appetite. Diarrhea, cramping and pain can even become worse when you eat because of the increased intestinal activity afterwards. But Crohn’s disease is not the same in everyone. The severity of symptoms varies depending on the level of autoimmune activity and which areas of the bowel are affected. And symptoms may change over time.
Call a doctor right away if you have been diagnosed with CD and you have one or more of the following:
- Fever over 101°F (38.3°C) or shaking chills
- Lightheadedness, passing out or rapid heart rate
- Stools that are almost always bloody
- Severe dehydration, such as passing little or no urine for 12 or more hours
- Severe belly pain or severe pain and bloating
- Evidence of pus draining from the area around the anus, or pain and swelling in the anal area
- Repeated vomiting
- Not passing any stools or gas
If you have any of these symptoms and you have been diagnosed with Crohn’s disease, your condition may have worsened.
The inflammation of ulcerative colitis (UC) prevents water from being reabsorbed into the bloodstream. The result is diarrhea. As with Crohn’s disease, symptoms vary – largely depending on the amount and severity of inflammation in the large bowel.
The most common symptoms of UC flares are:
- Diarrhea (frequently bloody; may also be mixed with mucus or pus)
- Inflammation and ulcers in the lower bowel that sometimes bleed, producing bloody diarrhea.
- Stomach pain and cramping
- Urgent need to go to the bathroom
- A severe flare is defined as having to empty your bowels six or more times a day, as well as having additional symptoms such as shortness of breath, a fast or irregular heartbeat or a high temperature (fever). You may also notice that any blood in your stools becomes much more obvious.
You may also experience fatigue (extreme tiredness), loss of appetite and weight loss. The symptoms of ulcerative colitis tend to come and go, with fairly long periods in between flares in which patients may experience no distress at all. No specific trigger for flares has been identified, although medical researchers suspect stress can make them more likely.
During a flare, some people with UC also experience symptoms not related to the inflammation in their bowels, including painful and swollen joints (arthritis), mouth ulcers, patches of painful, red and swollen skin or irritated and red eyes. Uncontrolled UC chronically prevents essential nutrients from being absorbed properly during digestion, which is a serious problem.
Call a doctor immediately if you have been diagnosed with UC and you have:
- Fever over 101°F (38.3°C) or shaking chills
- Lightheadedness, passing out, or rapid heart rate
- Stools that are almost always bloody
- Severe dehydration, such as passing little or no urine for 12 or more hours
- Severe belly pain with or without bloating
- Pus draining from the area around the anus or pain and swelling in the anal area
- Repeated vomiting
- Not passing any stools or gas
If you have any of these symptoms and you have been diagnosed with UC, your disease may have worsened.
Complications of ulcerative colitis (UC) are less frequent than in Crohn’s disease (CD).
Doctors agree that regular check-ups with your gastroenterologist are essential if you want to keep on top of your IBD and curb any potential problems before they occur. This may mean having regular endoscopies, or simply discussing changes in your symptoms. It’s also important that you are disciplined in taking any medication you are prescribed.
Intestinal obstruction caused by a stricture
The most common complication of CD is blockage of the bowel. This happens when there is a stricture: a narrowing due to scar tissue that has formed in the wall of an inflamed part of the GI tract. Strictures may be mild or severe, depending on how much they obstruct the passage of the bowel’s contents. Sometimes a stricture can cause difficulty in food passing through (a blockage). Symptoms include cramps around the mid-abdomen, often accompanied by vomiting. The abdomen may also become bloated and distended. Medications may relieve the obstruction by reducing the local area of inflammation, but surgery may be required if the obstruction is severe and does not respond to medical treatment. Surgery may also be required if the blockage recurs frequently. Some cases require surgery to remove a scarred portion of the bowel.
Chronic IBD inflammation can lead to open sores (ulcers) anywhere in your GI tract, including your mouth, ileum (the part of the GI tract leading to the anus); in the genital area (perineum) and around the anus. These ulcers can be very uncomfortable and in the case of Crohn’s, may sometimes bleed.
Sometimes ulcers can be deep enough to go right through the bowel wall, creating a fistula. A fistula is an abnormal connection between different parts of your bowel, between your bowel and skin, or between your bowel and another organ, such as the bladder or vagina. When internal fistulas develop, food may bypass areas of the bowel that are necessary for absorption. With CD, an external fistula can cause continuous drainage of bowel contents to your skin. In some cases a fistula may become infected and form an abscess – this can be life-threatening if left untreated. Fistulas around the anal area (perianal) are the most common.
Anal fissures are cracks, or clefts, in the anus or in the skin around the anus where infections can occur. They are often associated with painful bowel movements, and can lead to a perianal fistula.
Diarrhea, abdominal pain and cramping may make it difficult for you to eat or for your bowel to absorb enough nutrients to keep you properly nourished. Anemia is common in people with IBD.
Having IBD that causes symptoms in your bowel increases your risk of colon cancer. This seems especially to be the case with CD or Crohn’s colitis (Crohn’s disease that only affects the colon). About 5% to 8% of people with UC will develop colorectal cancer within 20 years after diagnosis, and the risk increases with the duration and severity of the UC. (The risk of colorectal cancer in the general population is between 3% and 6%.) People with UC are often unaware they have bowel cancer as the initial symptoms of this type of cancer are similar – blood in the stools, diarrhea and abdominal pain. Doctors want UC patients to have regular check-ups to look for signs of bowel cancer from about 10 years after symptoms first develop.
Other health problems
In addition to inflammation and ulcers in the bowel, IBD can cause problems in other parts of the body, such as arthritis, inflammation of the eyes or skin, clubbing of the fingernails, kidney stones, gallstones and, occasionally, inflammation of the bile ducts. People with long-standing IBD may also develop osteoporosis, a condition that causes bones to become weak and brittle.
Support means everything
No man is an island: in other words, it is not helpful to try to cope with living with inflammatory bowel disease all by yourself. Your friends and family can help, along with your team of health care providers.
Living with any chronic disease can make you feel isolated – especially when you have to adapt or change your daily routine, see more doctors more often and learn medical terms. But you don’t need to do it alone.
Over time, IBD can indeed have its challenges. There may be physical discomfort to deal with; bouts of loneliness, depression, frustration and worry about sharing life with others. If signs and symptoms are severe, life may revolve around a constant need to run to the toilet. When this happens, you might worry about an accident, and this anxiety only makes your symptoms worse. Worry about sexual intimacy is also common. But friends, family and even a support group can help, along with your team of health care professionals. Speak up and ask your doctors and nurses whatever you want to know – their expertise can be a great help. Tell the people you trust how you’re feeling and don’t be embarrassed to accept their help or comfort. Try not to hide yourself away unless rest and solitude is what you really need.
Coping with a disease is always much easier if you accept loved ones’ support. Those that are closest to you will want to understand what you are going through and learn how they can help. Be honest about your condition and how you are feeling about it. The more they understand about your illness, the more it can help you feel less isolated.
Here are some tips and helpful insights we’ve learned from patients with IBD:
Ask those closest to you to learn about your condition
They’ll understand your symptoms better and how you feel about them. It may give them new ideas about how to make things easier for you in day-to-day life, and the awareness alone will make you all more comfortable dealing with IBD. Mutual understanding often arises from education. Friends and relatives can read this or other Web sites, look up reliable sources of information in libraries or go with you to some of your appointments. Contacting Crohn’s and Colitis Canada (CCC) is a good place to start: www.crohnsandcolitis.ca.
Let them know you need their support
This could be just some welcome empathy when you need to talk – even about things not directly related to IBD. Nourish your important personal relationships. Share how you are feeling physically and emotionally. There will be times, such as during a “flare,” when you experience more pain and/or limitations than usual, and are more anxious or frustrated. At other times, you’ll feel so good you won’t be thinking about IBD at all. Because inflammatory diseases like IBD tend to flare up and subside, life is full of unpredictable ups and downs – the ’good’ and ‘bad’ days your loved ones should know about so they can offer you support if and when you need it.
Always be open and honest about your IBD
It’s the only way people can help you. IBD is a difficult subject, associated with elimination, odor, lack of control and other taboo subjects we’re usually discouraged from mentioning. It can be hard to speak frankly about it to family, friends and even health care practitioners. But it’s important to not let embarrassment cut you off and stop you from talking about your IBD. Having a serious, chronic, uncomfortable medical condition requiring daily lifestyle management, medication and in some cases medical intervention, is not something anyone should deal with alone. Seek out medical and patient advocacy support (online if there’s no support group in your area). Don’t let IBD make you feel ashamed. And if you feel your doctor or loved ones “don’t know what it’s like”, perhaps that’s because you haven’t fully told them. Help them to help you – tell them what you’re experiencing and what you need from them.
IBD is different for every patient, with treatment tailored to each individual case. The key is to closely follow your health care team’s instructions for the steps and medications to take. Take medication exactly as instructed so it has the best possible chance of working. Be persistent in following your treatment, and be patient: it can take a while for some medications to work. Keep notes and communicate regularly with your doctor about your progress, the treatment’s effects, any side effects and how you can manage them. For example, you might be able to change the time you take your medication to when it’s more convenient. Your doctor and other medical professionals can help you manage symptoms such as bloating, gas and even stress, so don’t hold back from asking questions about any aspect of your health. As symptoms can change between appointments it can be useful to keep a symptom diary to record things like bowel movements, diet and any fluctuations in your weight. This helps give your doctor a more accurate picture of your health, and helps you pro-actively manage your IBD. Be involved in the decision-making about your health. There are many things to try, so don’t be discouraged if one treatment isn’t working: another might work much better.
One of the best ways to feel more in control is to find out as much as possible about inflammatory bowel disease (IBD). Organizations such as Crohn’s and Colitis Canada (CCC) have chapters across Canada to provide information and access to support groups.
Support groups aren’t for everyone, but they can provide valuable information about your condition as well as emotional support. Group members frequently know about the latest medical treatments or complementary therapies. You may also find it reassuring to be among people who know first-hand what you’ve experienced.
Some people find it helpful to consult a psychologist or psychiatrist who’s familiar with IBD and the emotional difficulties it can cause. Ask your doctor for a referral if you think counselling might help you. Many people, with or without a chronic disease, find that these caring professionals really help them work through emotional aspects of difficult life events and find coping strategies. And just speaking freely to someone you know will keep everything you say in strict confidence can be of tremendous benefit.
Having inflammatory bowel disease can sometimes be an exhausting and difficult situation to face. It is a very personal illness that affects everybody in different ways. But there are many things you can do to help control your symptoms and lengthen the time between flares – changes in diet and lifestyle habits are especially helpful. Once you know your IBD and what triggers it, and get professional support, you can definitely improve its effect on your life.
There’s no firm evidence that what you eat causes IBD. But certain foods and beverages do seem to aggravate symptoms in many people, especially during a flare. It’s a good idea to try temporarily eliminating from your diet anything that seems to make your signs and symptoms worse. Here are some suggestions:
Limit dairy products
If milk or other dairy products aggravate your symptoms, you may be lactose intolerant, meaning your body can’t digest the sugar naturally present in milk (lactose) and in dairy foods. There are two ways you can continue to enjoy dairy products: try an enzyme supplement called lactase to help your body break down lactose. This may keep your digestion comfortable. Or look for ‘lactose-free’ milk and other products that are widely available on the market. If you decide to limit your dairy intake altogether, make sure you get enough calcium from other sources, like leafy greens, seafood, nuts, etc., and if necessary, calcium supplements.
Experiment with fiber
For most people, high-fiber foods, such as fresh fruits, vegetables and whole grains, are the foundation of a healthy diet. But if you have IBD, fiber may make your diarrhea, pain and gas worse. If raw fruits and vegetables don’t agree with you try steaming, baking or stewing them. Check with your doctor before adding significant amounts of fiber to your diet.
Avoid problem foods
It’s a good idea to keep a diary of your meals and snacks, when you eat them and any symptoms that occur afterwards. This record can give you valuable insights about just what seems to make your digestion better or worse. You can then eliminate any foods that seem to aggravate your symptoms.
Some foods that commonly cause gas include beans, cabbage and broccoli; raw fruit juices and fruits; popcorn, caffeine and carbonated beverages.
Eat small meals
Try grazing. You may find that you feel better eating snacks and five or six small meals rather than two or three larger ones.
Drink plenty of liquids
Try to drink plenty of fluids daily. Water is best; it can only be good for you. Beverages that contain caffeine stimulate your bowel and can make diarrhea worse, while carbonated drinks frequently produce gas.
Because IBD can interfere with your ability to absorb nutrients and because your diet may be limited, vitamin and mineral supplements may need to play a role in supplying missing nutrients. They don’t provide essential protein and calories, however, so they are never a substitute for meals. Always take supplements under a doctor’s supervision.
Talk to a dietitian
If you begin to lose weight or you find you’re eliminating all but very few foods in order to keep your IBD under control, ask your doctor for a referral to a dietitian. You’ll get professional advice on other foods to try, how to prepare foods differently, and how to ensure a good balance between your comfort and ability to function and your nutritional needs.
Smoking increases your risk of developing Crohn’s disease (CD) and, once you have CD, smoking can make the condition worse. People with CD who smoke are more likely to have relapses, to need medications and to require repeat surgeries. Quitting smoking should be one of the first discussions you have with your doctor, whether you have CD or UC. Beyond helping you avoid or diminish negative effects, quitting smoking can improve the overall health of your bowel, as well as provide many other health benefits.
The painful episodes and emotional issues caused by IBD can, ironically, be stressful. While stress doesn’t cause IBD, it can make your symptoms worse and may trigger flares. It’s important to identify all your stress triggers, and then develop relaxation and coping skills that can improve your overall wellbeing and give you greater control over your IBD and your life.
When you’re stressed, your normal digestive process can change, causing your stomach to empty more slowly and to secrete more acids. Stress can also speed or slow the passage of contents through your bowel. It may also cause changes in the bowel tissue itself.
It isn’t realistic to eliminate all stress from your life, but even occasional deep breathing, muscle relaxation and mental and emotional calm can help a great deal and are worth pursuing. Some ways to reduce stress include:
Even mild exercise can help reduce stress, relieve depression and normalize bowel function. Talk to your doctor about an exercise plan that’s right for you.
This stress-reduction technique helps you reduce muscle tension and slow your heart rate with the help of a feedback machine. Eventually you learn how to produce these changes in yourself without the machine. The goal is to enter into a relaxed state at will, and to cope much better in stressful times. Many hospitals and medical centres teach biofeedback techniques to patients. Ask your health care professional about where to find biofeedback training.
Regular relaxation and breathing exercises
An effective way to cope with stress is through relaxation and breathing exercises. You can take classes in yoga and meditation or practice these activities at home using any of the available books, CDs or Internet sources to guide you.
Hypnosis may reduce abdominal pain and bloating. A trained professional can teach you how to enter a more relaxed state, with techniques you can use on your own to relax any time you want.
Set aside time every day for a relaxing activity such as listening to music, reading, gardening, cooking, playing computer games, talking with a good friend, playing with your pet, or just soaking in a warm bath. Your body goes through a lot – healthful, enjoyable pastimes take your mind off discomfort and can actually help reduce the tension and pain IBD can cause. Make it a priority to treat yourself to something nice and relaxing!
We don’t yet know what causes IBD, nor do we have a cure, but, there are fortunately many effective treatments to help reduce the severity of “flares” and to control the disease so your life doesn’t need to revolve around IBD.
The three main goals of treatments for IBD are:
- Achieving remission (the absence of symptoms)
- Maintaining remission (preventing flares of disease)
- Improving personal quality of life
For deep remission with IBD, the treatment goal is mucosal healing. These goals may be achieved either with a combination of over-the-counter and prescription medications, or surgery, depending on each individual case. For mild to moderate Crohn’s disease (CD), doctors usually try to treat first with medication. Surgery is only considered if all other options have been tried and symptoms remain uncontrolled. Two-thirds to three-quarters of patients with CD will require surgery at some point in their lives when medications are no longer effective and it would be too dangerous to the bowel not to remove some scar tissue build-up caused by chronic inflammation. In one-quarter to one-third of patients with ulcerative colitis (UC), drug therapy is not successful enough or complications arise – also circumstances where surgery may be considered.
When considering medication options, remember: Your symptoms may range from mild to severe, occurring in flares that alternate with periods of remission when your symptoms either disappear completely or lessen a great deal and good health returns for weeks, months or even years at a time.
Because each person’s IBD is different, the treatment used to control the illness is unique as well. There is no “one-size-fits-all” approach to IBD. Doctors will customize treatment to your individual needs based on what part of your bowel is affected, how severe the disease is and how you are coping with your symptoms. Medication may be given in different dosages, formulations and for different lengths of time. You might try a few different medications before you find the one that’s right for you.
Medications can be given in oral form (by mouth), intravenously (through a vein) or subcutaneously (by injection under the skin). Topical therapies are administered rectally, as suppositories, enemas, creams and ointments.
It’s important to keep in mind that a person’s treatment needs may change over time. What works at one point during the illness may not be effective during another stage. It’s a good idea to keep track of how well each medication works for you and if it has any side effects as this can help your doctor decide on the best treatment. Thoroughly discuss with your doctor which course of therapy you feel is best – bearing in mind that a combination of therapies may be the optimal treatment plan.
These include aspirin-like compounds that contain 5-aminosalicylic acid (5-ASA). These drugs (given either orally or rectally) do not suppress the immune system but decrease inflammation at the bowel wall itself, helping both in the short and long terms. They are used in treating mild to moderate episodes of IBD, UC in particular. They also are useful in preventing relapses (return of symptoms).
These medications work to keep an over-reactive immune system in check by suppressing activity across the whole immune system. Prednisone and prednisolone are used for people with moderate to severe CD and UC. Budesonide is used for people with mild to moderate ileal CD (i.e., ileitis), and right sided colon CD (i.e., right sided colitis). These drugs can be administered orally, rectally or intravenously. They are used for short-term control of flares. They are not recommended for long-term or maintenance use because of their side effects, which can include infection, bone loss, weight gain, cataracts, skin fragility, sleep disturbance and mood swings. If you cannot discontinue steroids without a relapse of symptoms, your doctor may add other medications to help manage your disease. It is important not to suddenly stop taking this medication.
This class of medications modifies the body’s immune system so that it cannot cause ongoing inflammation. Usually given orally (though there is one which is injectable), immunomodulators are typically used in people for whom aminosalicylates and corticosteroids haven’t been effective or have been only partially effective. They can be used to help someone taper off corticosteroids when necessary but when symptoms need to be controlled at the same time. Immunomodulators may take some time to begin working after first taking them.
Biologic response modifiers, or “biologics” for short, are medications designed to target your body’s immune system. Biologics are administered in two ways: intravenously (through a vein) or by injection (a shot/needle). They can take some time to work.
These medications are indicated for people with moderately to severely active disease who haven’t responded well to conventional therapy. Biologics may help reduce steroid use. They may also be used for reducing fistulas.
Common side effects with biologics include mild skin reactions at the injection site, nausea, abdominal pain, respiratory tract infections and headaches. Rarely, people who take biologics may develop serious infections, lupus-like reactions, nervous system diseases and cancer.
Understanding biologic and biosimilar medications
Most people are familiar with conventional medications such as pain relievers. These medications are made from chemicals (chemically synthesized).
Some of you may also have heard about biological or “biologic” medications which are used to treat serious illnesses, such as cancer, inflammatory bowel disease, psoriasis and rheumatoid arthritis. Biologics are special medications created using the biologic processes within liviarthritis. Biologics are special medications created using the biologic processes within living cells.
Conventional medicines and biologic medicines have important differences.
|Conventional medicines||Biologic medicines|
|Made from chemicals||Created in living cells|
|Generally small molecules||Complex large molecules|
Some history on biologics…
It is common knowledge that when the patent expires on a conventional medication, other companies are allowed to make copies called generics. Although the active ingredient in a generic is exactly the same as the active ingredient in the original conventional medication, non-medicinal ingredients, like fillers and colouring, may be different.
When the patent on a biologic medication expires, other companies are allowed to make copies. However, since it is impossible to make exact copies of biologic medications because of the way they are made, the copies are not called generics or even biogenerics. The correct term is biosimilar since it can only be similar and not identical to the original. In Canada, the official term for a biosimilar medication is Subsequent Entry Biologic or SEB.
Is a biosimilar a generic version of the original biologic drug?
No, biosimilars are similar to, but not identical to the original biologic drug. This is because the group of cells used to produce the drugs (the cell line), the actual drug molecule and the manufacturing process are different.
In Canada, manufacturers of biosimilars are required to show Health Canada that their product is similar to the original biologic and that the benefits of their product outweigh the risks. SEBs must have a label that is different from the original biologic medication.
Does the difference between a biosimilar and the original biologic matter to me and my care?
Yes, original biologics and biosimilars may act differently in your body and could have different side effects.
Since original biologics and the biosimilar versions are not identical, it’s important that you review your prescription with your doctor so you know which one is being prescribed.
Health Canada does not support automatic substitution of a biosimilar for an original biologic at the pharmacy.
For more information about biosimilar medicines, visit:
Alliance for Safe Biologic Medicines (USA) www.safebiologics.org
Metronidazole, ciprofloxacin and other antibiotics may be used when infections, (such as an abscess) occur. They treat Crohn’s colitis and perianal Crohn’s disease. They are also used for post-surgical problems such as pouchitis (an infection in an ileal pouch).
In the absence of a cure, current therapies are directed at achieving and maintaining freedom from symptoms. Most people require ongoing medication; when this fails, surgery is often required.
Prescription medications reduce inflammation of the bowel and form the core of IBD treatment. Even so, they may not relieve all of your symptoms, and you may want to take over-the-counter (OTC) medications in an effort to feel better. Before taking anything, talk to your doctor or other health care professional – these symptoms may indicate the inflammation is getting worse and you may need to go to the hospital, or that you need a change in your IBD medication. Or, the symptoms may be nothing to worry about and it’s fine for them to be treated with over-the-counter medications.
Your doctor may recommend medicines to relieve diarrhea, or anti-gas products for bloating. To reduce joint pain and fever, your doctor may recommend acetaminophen or non-steroidal anti-inflammatory drugs (NSAIDs). These work to alleviate joint symptoms but can irritate the small bowel or colon, thus promoting inflammation, so they must be used with great care. Make sure you follow instructions with all OTC products, but again, speak with your health care professional first before you take any medications.
Medications are the treatment most patients and their doctors like to use for IBD, but sometimes they stop working. If that happens, surgery might be your best alternative for living better day-to-day. While no one wants to have an operation, sometimes it’s the only way to control symptoms when medication is no longer effective.
Different surgeries are appropriate for the different forms of IBD described below. Once you’re informed, you can feel free to ask your doctor questions about what kind of surgery might be appropriate for you at some point, and feel less anxious about the possibility. There may well be fewer things to worry about than you think when it comes to having an operation, recovery, or using any special devices afterwards.
Severe inflammation and scarring caused by Crohn’s disease (CD) sometimes leads to narrowing (a stricture) or blockage in the bowel. If a part of the bowel narrows enough to cause severe discomfort and interfere with digestion this procedure can widen it and provide relief without removing any of the small bowel.
Surgery for abscesses and fistulas
Sometimes abscesses (pus-filled masses) can only be removed surgically. If a fistula (abnormal tract) causes symptoms that medication can’t control, surgery may be the best option.
Resection (removing portions of the bowel)
For a lot of people, surgery to remove sections of the bowel that are permanently or chronically damaged by CD may reduce or eliminate many symptoms. During a resection, the surgeon removes the affected area of the small bowel and then sews the two healthy ends of the small bowel back together, in a procedure called anastomosis. (It’s important to note, however, that CD tends to come back even if someone has had an operation for it). People who live with CD for a long time may need several resections of their small bowel over their lifetime.
Colectomy (removing the colon) or proctocolectomy (removing the colon and rectum, i.e., the large bowel)
If only the tissue of the colon has become severely affected by CD symptoms, a colectomy may be what’s needed. But if the tissues of the entire large bowel (i.e., the colon and rectum) have both been severely damaged, a proctocolectomy might be the best solution. A proctocolectomy consists of two parts: the first thing the surgeon does is remove the colon and rectum. The second part is called an ileostomy, where the ileum (end of the small bowel) is brought through a stoma (opening) in the abdomen, which will allow digestive waste to pass out of the body and directly into a well-sealed, sturdy plastic colostomy bag. After the operation a colostomy bag is worn firmly attached to the body at all times. The bag covers and protects the ileum opening and collects digestive waste until it is time to be emptied.
|Potential benefits||Potential risks/side effects|
|Long-term relief of symptoms||Surgery-related complications (as with any surgery including an increased risk of death between 2-4.5%)|
|Long-term lower frequency or dose of medication||In 5 years or less, disease symptoms will return in about 80% of patients who’ve had a resection (usually at the site of anastomosis or ileostomy)|
|Healthier, more active lifestyle is possible||About 50% of people whose symptoms have returned will need another surgery|
|Combining medication and surgery often significantly improves quality of life for people with CD||Having an ileostomy is hard on some people psychologically, i.e. impacts body image|
Proctocolectomy (removing the colon and rectum, i.e., the large bowel) with ileostomy
If ulcerative colitis (UC) is severe, surgery may be required to remove the entire large bowel (i.e., the colon and rectum), and to bring the ileum (end of the small bowel) through a stoma (opening) in the abdomen to allow digestive waste to pass out of the body and directly into a colostomy bag. After the operation the colostomy bag is worn firmly attached to the body at all times. The bag covers and protects the ileum opening and collects digestive waste until it is time to be emptied.
Restorative proctocolectomy, also known as ileoanal pouch anal anastomosis (IPAA)
This surgery involves removing the large bowel (i.e., the colon and rectum), then making a pouch inside the body with the end of the ileum (small bowel) and then attaching the pouch to the anus. This means the restructured tissue of the ileum becomes a replacement for the damaged bowel that needed to be removed. After a restorative proctocolectomy, the person can pass stools through the anus in the usual way.
|Potential benefits||Potential risks/side effects|
|Long-term symptom relief||Surgery-related complications (as with any surgery, including an increased risk of death between 2-4.5%)|
|Symptoms are mostly gone||Potential IPAA problems:
|Normal digestive functioning may be restored||Having an ileostomy is hard on some people psychologically i.e. impacts body image|
|Reduced or even eliminated need for ongoing medication|
|Healthier, more active lifestyle is possible|
Although not considered surgery, routine colonoscopies are strongly recommended over the years to monitor any internal changes your IBD may cause in your lower digestive tract. The colonoscopy is the best way to see whether there have been changes to your large bowel.
The procedure uses a small device and camera at the end of a narrow cable to very gently enter the rectum and then the colon to look for any signs of cancer and to take a very small tissue sample to be examined under a microscope. Colonoscopies are preventive measures that are usually done 8 to 10 years after the UC or CD diagnosis, when the risk of developing colorectal cancer increases. If any irregularities develop or if your doctor feels you should be monitored, he or she might recommend regular colonoscopy check-ups to take biopsies (small tissue samples) from different areas of your bowel. These biopsies can help identify any pre-cancerous growths.
Complementary and alternative treatment
In many cases, treating inflammatory bowel disease (IBD) can be tricky. Therapies may not work or offer the extent of relief patients and their health care teams hoped they would. Treatments may work well at some times but not as well at others. That’s why some people with IBD look to complementary and alternative therapies (treatments that fall outside the scope of traditional Western medicine). For some, these less common techniques and preparations may work well for easing symptoms or preventing new flares. Ask your health care professional about alternative therapies – there are many you can try.
Below are some of the most popular alternative therapies for IBD:
Because bacteria in the gastrointestinal (GI) tract have been implicated in ulcerative colitis, researchers suspect that adding more of the beneficial bacteria (probiotics) that are normally found in the bowel might help combat the disease. Ask your health care professional about this.
Even though herbal remedies are “all-natural”, they can still have side effects, and many can interact with medicines you’re already taking. Always be cautious when taking any herb – educate yourself about it beforehand and explore the options with your doctor so you’ll know what would be safe to try.
Please note that the information on this Web site should not be used as a substitute for seeking medical advice or treatment from a physician. You should not use this information to diagnose or treat a medical condition or health problem. Speak to your health care provider if you have any questions about your medical condition, symptoms or treatment options.
Crohn’s and Colitis Canada (CCC)www.crohnsandcolitis.ca/
Crohn’s and Colitis Canada (CCC) is a voluntary, not-for-profit, medical research foundation that raises money for IBD research. The CCC also provides education about IBD.
The Canadian Society of Intestinal Research is a charity dedicated to public education and awareness of gastrointestinal diseases and disorders. CSIR also helps fund medical research.
Robbie’s Rainbow is a registered charity with a sole focus on childhood Inflammatory Bowel Disease (IBD). It provides access to medical treatments, procedures and care not covered by private or public health plans and builds educational resources for IBD children and their families.
The Canadian Digestive Health Foundationwww.cdhf.ca
The Canadian Digestive Health Foundation supports the millions of Canadians who suffer from digestive disorders every year. As the Foundation of the Canadian Association of Gastroenterology, they are directly connected to Canada’s leading digestive health experts, physicians, scientists and other health care professionals.