“I have been diagnosed with IBD - Now what?”

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KEY POINTS:

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• It is important that you understand whether you have Crohn’s disease or ulcerative colitis and where in your bowel your disease is located.  Your doctor has done some diagnostic tests on you. Ask him or her to explain what the results are.

• It is important that a treatment plan has been presented to you. Your doctor needs to inform you about what options are available for treatment and why the treatment being chosen is the right one for you. A plan should be developed for next steps of treatment in case the first choice is not fully effective.

• You should ask your doctor what the plan is for future investigations.

• The most important thing to know is that the vast majority of patients can be made to feel very well, many back to normal.

• You will have many questions about how you got the disease, what it means for your work and family, whether you need to change your diet, whether you need to change your lifestyle, whether it can become anything worse, what it means for the future. Your doctor may not have time for all these questions in one visit and you may not remember to ask them all. Below is a brief guide on what it means to be diagnosed with IBD

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What is IBD?

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• IBD includes Crohn’s disease and ulcerative colitis. Having one of these diagnoses means that you have inflammation in your bowel and it causes you to have any number of the following symptoms: abdominal pain, diarrhea, blood in your stools, nausea, fatigue, weight loss and possibly even some joint complaints.

• Nearly all people newly diagnosed with Crohn’s disease or ulcerative colitis need some type of medical treatment to settle down the active inflammation and by settling inflammation in turn settle the symptoms. You may need treatment forever; some people can stop treatment and remain well for very long periods.

• People with IBD generally have long life spans. You need not worry that a diagnosis of Crohn’s disease or ulcerative colitis will markedly shorten your life span.  However, the disease can become active at times and the best way to feel in control of the disease is to follow a treatment plan that you develop with your doctor.

• There are times you may need investigations even when you feel well. 

• There are times that you feel very well that you want to stop all treatment with the hope that disease is finally gone for good. Unfortunately, there is no cure for either Crohn’s disease or ulcerative colitis. Nonetheless, with the right treatment you can remain well for very long periods. Some people can stop their treatment and remain well for long periods. Stopping treatment has to be very well planned and timed to be sure it is safe and wise.  

• Sometimes surgery is necessary to get patients well either because a complication has arisen or the medications have not worked. Even if this should come to pass, surgery has left many patients very well for long periods.  

• The vast majority of patients with either Crohn’s disease or ulcerative colitis lead full and productive lives and fulfill their educational, career and personal goals. However as these are chronic diseases it is important to involve the people closest to you to help provide you with support should you have periods when you struggle more with the disease.

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How did I get it?

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• The causes of Crohn’s disease or ulcerative colitis are unknown. There is nothing you have done to specifically to cause this disease. Currently experts believe that the main culprit for the disease is a change in the microbes present in the bowel of affected persons. But what changes the microbes in the bowel? Is it diet? Is it taking certain medications like antibiotics?  Is it something else in the air we breathe or water we drink? Is it caused by an infection we somehow acquire? We simply do not know.

• We do know that there is a genetic predisposition to getting the disease.  This means that your genes help program whether you are going to get the disease or not. Both Crohn’s disease and ulcerative colitis run in families. But having someone with IBD in your family is not enough to put you at risk. Hence, it is widely believed something in the environment is key to triggering the onset of the disease.

• Are there dietary factors known to cause either Crohn’s disease or ulcerative colitis-NO but there are suggestions that having diets high in omega-6 fatty acids (like red meat or polyunsaturated margarines) may be relevant.

• Are there medications known to cause IBD? NO but there is research that shows that antibiotic use at specific times in life may predispose to developing IBD.

• Do stressful life events cause IBD? NO but there is research that shows that feeling highly stressed can be associated with symptoms experienced by persons with IBD.

• There are some factors that are known to affect the course of the disease even if they do not cause the disease. For instance, smoking is bad for Crohn’s disease. People who have Crohn’s disease who smoke have a worse course of their disease. High stress likely does not cause the disease but can increase symptoms in persons with the disease. Women who menstruate may have increased bowel and abdominal symptoms around the time of their periods; even more so than women who do not have IBD.

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What is the general approach to treatment?

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• There are two main approaches to treatment. The first approach is to settle active disease and the second approach is to maintain disease in remission. Remission means there is no disease activity. Sometimes the same drugs are used to treat active disease and to maintain remission and sometimes different drugs are used for these 2 approaches.

• In settling active disease it is important to not just minimize or eliminate symptoms but also to heal the active inflammation. Sometimes patients will feel well but their doctor finds that there is active inflammation on endoscopy or by some other investigation. In this instance the doctor may encourage the patient to increase treatment in some way to settle the active inflammation so it does not lead to difficult symptoms in the future.

• Steroids like prednisone are used to treat active disease but are not used to maintain remission.

• Biological drugs like antibodies to tumor necrosis factor (infliximab, adalimumab, golimumab, certolizumab), vedolizumab and ustekinumab can treat active disease and maintain remission.

• A relatively new medicine used to treat ulcerative colitis and has been used for a few years to treat rheumatoid arthritis is called tofacitinib. It can treat active disease and maintain remission.

• 5-aminosalicylate drugs (5-ASA)  drugs can treat mildly active ulcerative colitis and also maintain remission.

• Drugs like azathioprine work too slowly to treat active disease but they can maintain remission.

• Other treatments are worthwhile. This includes taking multivitamins. This can include taking immodium to control diarrhea. This can include taking medications to treat pain. Be aware of starting to take narcotics for pain. Narcotics (like morphine or Percocet) should only be used for short term treatment like when having a bowel obstruction or abscess or when recovering from surgery. Long term use of narcotics is not helpful and may be harmful.

• Be wary of internet reports or even testimonials from friends of “wonder” treatments that have not been studied in IBD. There are lots of treatments that can be bought off the internet that will prove to be a waste of money. Many people see naturopaths or practitioners who recommend herbal therapies. Be aware that these therapies are not proven to work in IBD.

• Many people use probiotics like acidophilus, lactobacillus or other marketed probiotics. They are not proven to be effective in Crohn’s disease and there is only marginal evidence that any type of probiotic is effective in ulcerative colitis. There is a probiotic called VSL#3 that has been shown to be effective in pouchitis.  Pouchitis can occur in people with ulcerative colitis who have undergone colon removing surgery and then had a pouch placed at end of the ileum will get.

• Sometimes surgery is necessary to get patients through a difficult period when a complication arises or when treatment has not been successful. In Crohn’s disease surgery is usually limited to a short segment of bowel and does not cure the disease. Hence, after surgery, medication may be required to prevent disease recurrence. In ulcerative colitis surgery can cure the colitis because the entire colon is removed. Most often a pouch out of the end of the ileum is created and brought down to the anus. However, this does not return people to being “normal” They may have approximately 5 bowel movements per day as a best outcome. However, most of the time after this surgery, patients do very well and do not require medications to maintain their health.

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What do I do with my diet now?

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• Unfortunately there has not been research to guide us as to what foods to recommend to eat and what foods to recommend to avoid.

• When people have active Crohn’s disease or active ulcerative colitis they should have a low fiber diet because fiber makes the bowel work harder. Further, if patients with Crohn’s disease have a stricture (narrowing) high fiber foods (like asparagus, broccoli, might tend to get trapped at the narrowing.

• Patients with Crohn’s disease tend to be more likely to be lactose intolerant. This means they may get bloating or diarrhea when ingesting dairy products because they lack the enzyme lactase that breaks down the sugar lactose. Lactose is the main sugar in dairy products. Because dairy products can be healthy they should not be avoided but rather eaten while using lactase supplements. If people do not have at least 2 cups of milk per day they should take vitamin D supplements as milk is one of the few sources of vitamin D

• If your IBD is ever causing enough symptoms that you really reduce your diet intake then you should take liquid calorie and protein supplements like Boost or Ensure.

• Each individual with IBD typically determines over time what types of foods they do not tolerate. For some it is salads, for others it is red meat and for others it is spicy food. However, often when people are very well with their IBD they can eat anything.

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What other conditions might I be at risk for?

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• People with IBD are at risk of getting other chronic immune disease but it is the minority of persons that do.

• The most common other condition is arthritis. It is common for patients with IBD to get joint pain when their IBD is active. Often the joint pain goes away when the IBD is treated. Some types of joint pains are from an arthritis that can be a problem even when the IBD is under complete control. It is common to treat joint pains with medications called non-steroid anti-inflammatory drugs (NSAIDs). This class of drugs includes Advil, Motrin, Aleve, Ibuprofen among others.  There is a consideration that excess use of these types of drugs in people with IBD could trigger a flare of the IBD. This has not been proven. NSAIDs if used to excess can cause stomach ulcers in anyone, including people without IBD. However, intermittent use of NSAIDs if you have IBD and joint pain is likely safe.

• Skin rashes are common in the general population and are common in IBD as well. People with IBD have a slight increased chance of having psoriasis, a common skin condition. There are a few skin conditions that may occur in IBD that do not occur in the general population. They are called erythema nodosum and pyoderma gangrenosum. The erythema nodosum typically goes away when the IBD is treated. The pyoderma gangrenosum may be active even when the IBD is not active. It is however, usually treated with the same drugs that treat IBD (like the anti-TNF drugs, like infliximab or adalimumab). Only 1-5 out of 100 patients with IBD get these conditions.

• Eye inflammation is uncommon in IBD but occasionally patients may get redness or pain in their eyes that need treatment with steroid drops. This is called iritis. It typically only affects one eye at a time. Only 1-3 out of 100 patients with IBD get this.

• There is an inflammatory condition of the ducts in the liver called primary sclerosing cholangitis. It affects only 3 of every 100 patients with IBD. This condition can either cause no symptoms or cause some problems related to the liver.

• People with IBD are at increased risk for getting blood clots in the leg veins. This is called deep vein thrombosis. If it occurs the treatment is anticoagulation medication taken either in pill form or as under the skin shots.  If a leg deep vein thrombosis occurs it can make the leg swollen and painful. It can also lead to a clot travelling from the leg to the lung which can cause chest pain or shortness of breath. When people with IBD are hospitalized there is an increased risk for developing a leg deep vein thrombosis (either because lying in a hospital bed is an inactive state, and the leg veins don’t pump blood as well, or because of the active inflammation the patient suffers from, or both). Hence, when hospitalized, all patients with IBD should get anticoagulant shots under the skin to prevent the development of leg deep vein thrombosis.

• People with IBD are at increased risk for osteoporosis or bone thinning. This condition does not cause symptoms but can lead to an increased risk of fractures of the bones. The risk of fracture in IBD is low. However, there are some things patients with IBD can do to ensure their bones are strong. If you do not eat dairy foods then you should take calcium supplements (1000 mg per day). If you do not drink milk you should take vitamin D supplements (1000 international units per day). If you are taking prednisone as treatment of your IBD then you should take calcium and vitamin D supplements. You should maintain a good exercise regimen. You should not smoke. If you are a woman and not having menstrual periods make sure your doctor knows this. For women, having estrogen on board strengthens bones. (Women who are past menopause are at increased risk of osteoporosis). If your doctor discovers that you have osteoporosis (this can be discovered on x-rays or on special bone scans) then there are other medications that may be prescribed.

• Stress is common in life for everyone. The usual life stressors of family issues, relationship issues, financial issues, work issues affect persons with IBD just like they affect everyone. Stress can also trigger symptoms in persons with IBD. If you find that you are having difficulty with stress you should discuss this with your doctor. Seeing a counsellor or a clinical psychologist can be extremely helpful.

• Depression and anxiety are also common in the general population and in IBD as well. If depression or anxiety are active then this needs treatment as actively as your bowel symptoms do.  The treatments may include medications but there are treatments that a psychologist or psychiatrist can provide that are called cognitive treatments that do not involve medications.

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Will my IBD turn into something bad like cancer?

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Colon cancer

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• People with colitis are at risk for getting colon cancer.  This is true if you have ulcerative colitis or if you have Crohn’s disease affecting the colon. If you have Crohn’s disease that does not affect the colon (it only affects the small bowel then you are not at an increased risk of getting colon cancer). It is the minority of people with IBD that ever get colon cancer. Persons with IBD over the age of 65 are most likely to get colon cancer but this is also true of the general population. Persons with IBD younger than 65 have less colon cancer than persons over age 65 however they get colon cancer at a higher rate than persons of similar age and sex in the general population. Because of this increased risk it is important for persons with ulcerative colitis or Crohn’s disease affecting the colon to undergo screening colonoscopies intermittently. While persons with IBD are at twice the risk of the general population of getting colon cancer the likelihood is only about 1 chance in 20 after 20 years of disease.

• The risk for colon cancer is increased with increasing number of years with the disease (the risk starts to rise after 8 years of disease) and also if there is active inflammation that grumbles along and is not settled. Having a liver disease called primary sclerosing cholangitis increases the risk for colon cancer. Only 1-3 people of every 100 with IBD get primary sclerosing cholangitis. These people are at a particularly high risk of colon cancer. Having a parent or sibling with colon cancer also increases the risk for the person with chronic colitis to get colon cancer. Based on these facts screening colonoscopies in patients with ulcerative colitis or patients with Crohn’s disease that affects the colon will start to have screening colonoscopies at 8 years of disease. It is reasonable to repeat these colonoscopies approximately every 3 years if the colitis is under good control. If the colitis is very active at the time of colonoscopy then increased therapy is indicated and then the screening colonoscopy should be repeated. If a person has primary sclerosing cholangitis or a close family member with colon cancer then a screening colonoscopy should be every 1-2 years. In fact the risk is sufficiently high n primary sclerosing cholangitis that screening colonoscopy should begin as soon as this liver disease is diagnosed (do not wait until 8 years of disease duration).  If your doctor tells you that at colonoscopy there are many pseudopolyps (small lumps of tissue that are remnants of inflammation) he or she may recommend that you have a screening colonoscopy every 1-2 years because that is a situation where it is easier to miss true pre cancerous lesions.  Keeping up with screening colonoscopies at the intervals recommended by your doctor is the best way to prevent colon cancer from arising or if it does arise it is the best way to ensure it is found early enough and is still curable.

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Bile duct cancer

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• Bile duct cancers are extremely rare. However, in a person with primary sclerosing cholangitis they are much more common. Hence, only if you are diagnosed with primary sclerosing cholangitis do you really need to be concerned about this. Your doctor may intermittently get a MRI of your liver and bile ducts to assess for possible cancer related changes and he or she may even pursue a specialized endoscopy of your bile ducts called an ERCP, at times.

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Lymphoma

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• Lymphoma refers to a cancer of the circulating blood or lymphatic cells. It affects approximately 1 out of every 5000 persons in the general population.  Most of the medical literature suggests that persons with IBD are not at an increased risk for getting lymphoma over the general population unless they are using immune related drugs. Studies from Manitoba have suggested that persons with Crohn’s disease (especially elderly males) are at increased risk for developing lymphoma even in the absence of getting immune related drugs. However, it is known that using thiopurine medications (like azathioprine or 6-mercaptopurine) may increase the risk of getting lymphoma by a factor of at least 2. Even still the risk is very small- 1 out of every 2500 persons with IBD and on azathioprine or 6-mercaptopurine may be at risk for lymphoma. The use of an antibody to TNF (such as infliximab or adalimumab) may increase the risk for getting lymphoma. Despite the risks of getting lymphoma posed by these drugs the benefit far outweighs the risk. Hence, these drugs are widely prescribed in managing IBD.

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Cervical cancer

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• There is no increased risk of getting cervical cancer or dysplasia (the step before a cancer is already present) in women with IBD. However, users of immune drugs like azathioprine or 6-mercaptopurine are at risk for developing cervical dysplasia and cancer and doctors need to be fastidious in the group of users of these medications from preventing this by conducting regular PAP smears.

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Other cancers

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• People with IBD are not at a particularly increased risk of developing other cancers

 

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How will it affect my schooling or work?

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• The goal of therapy for people with IBD is to ensure it impacts on their life as little as possible. There are many people with IBD who are so well that they barely know they have it or forget that they have had it. There are many leaders of society; businessmen, doctors, celebrities, academics with IBD and people should maintain the goals they had set for themselves at school or at work before they were diagnosed. A study done in Manitoba on school age children showed that children with IBD are as successful on high school standardized English and mathematics exams as children without IBD. This is despite the fact that some children with IBD get hospitalized for periods.

• When the disease flares it is possible this will impact on work or school. An important marker as to how the disease is behaving and/or how well you are coping with the disease is whether or how much of work or school you are missing. Depending on the type of symptoms you have there may need to be accommodations made at work or school. At work this may include being near a bathroom or having a boss or coworkers that understand that some periods of absence may be required. Students should know that with doctors’ notes they can get special privileges regarding bathroom access during class or exams.

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Can I have children?

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• Women with IBD do not have lower fertility than women without IBD. The best way to ensure that a pregnancy is healthy and to enhance the chances that the baby will be healthy is for women with IBD to get pregnant at a time their disease is in remission.  There is a small risk of preterm delivery in women with IBD.

• Most drugs used to treat IBD are safe to be used during conception or during pregnancy or during breastfeeding. Women should not take methotrexate for treatment if they are planning to get pregnant.

• Women with IBD do not need to have cesarean sections unless they have Crohn’s disease with active perianal fistula disease

• Men with IBD can father children at the same rate as the general population.

• The drug sulfasalazine which is sometimes used in treating ulcerative colitis, can reduce sperm counts. However once the drug is stopped sperm counts returned to normal.

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Will my children get this disease too?

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• IBD does run in families. People with IBD have a 20% chance of having a relative with IBD. The likelihood of having a sibling or child with IBD is approximately 10%. Hence, there is a much greater likelihood of children of parents with IBD not developing IBD.

• If you have Crohn’s disease and one of your children gets IBD it is highly likely they will get Crohn’s disease and not ulcerative colitis. Similarly, if you have ulcerative colitis and one of your children gets IBD it is highly likely they will get ulcerative colitis.

• If one of your children gets IBD it is possible your other children will also get IBD but it is also possible that only one child would get it and the others would not.

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What should my goal(s) be now?

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• Follow your doctor’s advice for investigations and treatment. It is important to understand where your IBD is located in your gastrointestinal tract and it is important to get the inflammation settled and your symptoms resolved.

• Be vigilant with knowing when you should be investigated but also if you feel you are having too many investigations ask your doctor why. For instance, if you have had a recent CT scan of your abdomen and a doctor wants to order another one iform them that you just had one.

• You may need to make changes to your school or work schedule in the short term until your disease is settled.

• Do not change your long term goals for school or career. The overall goal is to get you feeling back to normal. It is the minority of patients that can not get back to a health state where they feel able to do what they did before diagnosis.

 

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References

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Ilnyckyj A, Blanchard JF, Rawsthorne P, Bernstein CN.  Perianal Crohn’s disease and pregnancy:  Role of the mode of delivery.  American Journal of Gastroenterology 1999; 94: 3274-3278.

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Bernstein CN, Blanchard JF, Rawsthorne P, Yu N. The prevalence of extraintestinal diseases in inflammatory bowel disease: A population-based study. American Journal of Gastroenterology 2001; 96: 1116-1122.

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Bernstein CN, Kliewer E, Wajda A, Blanchard JF.  The incidence of cancer among patients with IBD: A population-based study. Cancer 2001; 91: 854-862.

 

Singh H, Demers AA, Nugent Z, Mahmud S, Bernstein CN. Risk of cervical abnormalities in women with IBD: a population-based nested case-control study. Gastroenterology 2009; 136: 451-8.

 

Moffatt D, Ilnyckyj A, Bernstein CN. A Population based study of breastfeeding in inflammatory bowel disease: Initiation, duration and effect on disease in the post partum period.  American Journal of Gastroenterology 2009; 104:2517-23.

 

Singh S, Graff LA, Bernstein CN. Do NSAIDs, antibiotics, infections or stress trigger flares in IBD? American Journal of Gastroenterology 2009; 104:1298-313.

 

Bernstein KI, Promislow S, Carr R, Walker JR, Rawsthorne P, Bernstein CN. The information needs and preferences of recently diagnosed patients with IBD. Inflammatory Bowel Diseases 2011; 17: 590-98.

 

Graff LA, Vincent N, Walker JR, Clara I, Carr R, Ediger J, Miller N, Rogala L, Rawsthorne P, Lix L, Bernstein CN. A population-based study of fatigue and sleep difficulties in inflammatory bowel disease. Inflammatory Bowel Diseases 2011; 17: 1882-9.

 

Singh S, Blanchard A, Walker JR, Graff LA, Miller N, Bernstein CN. Common symptoms and stressors among individuals with inflammatory bowel diseases. Clinical Gastroenterology and Hepatology 2011; 9: 769-775.

 

Bernstein MT, Graff LA, Targownik LE, Downing K, Shafer L-A, Rawsthorne P, Bernstein CN, Avery L. Gastrointestinal symptoms before and during menses in women with IBD. Alimentary, Pharmacology and Therapeutics 2012; 36: 135-144

 

Targownik LE, Bernstein CN, Nugent Z, Leslie WD. Inflammatory bowel disease has a small effect on bone mineral density and risk for osteoporosis. Clinical Gastroenterology and Hepatology 2013; 11: 278-85.

 

Bernstein KI, Promislow S, Carr R, Walker JR, Rawsthorne P, Bernstein CN. The information needs and preferences of recently diagnosed patients with IBD. Inflammatory Bowel Diseases 2011; 17: 590-98.

 

Graff LA, Vincent N, Walker JR, Clara I, Carr R, Ediger J, Miller N, Rogala L, Rawsthorne P, Lix L, Bernstein CN. A population-based study of fatigue and sleep difficulties in inflammatory bowel disease. Inflammatory Bowel Diseases 2011; 17: 1882-9.

 

Singh S, Blanchard A, Walker JR, Graff LA, Miller N, Bernstein CN. Common symptoms and stressors among individuals with inflammatory bowel diseases. Clinical Gastroenterology and Hepatology 2011; 9: 769-775.

 

Bernstein MT, Graff LA, Targownik LE, Downing K, Shafer L-A, Rawsthorne P, Bernstein CN, Avery L. Gastrointestinal symptoms before and during menses in women with IBD. Alimentary, Pharmacology and Therapeutics 2012; 36: 135-144

 

Targownik LE, Bernstein CN, Nugent Z, Leslie WD. Inflammatory bowel disease has a small effect on bone mineral density and risk for osteoporosis. Clinical Gastroenterology and Hepatology 2013; 11: 278-85.

 

Nguyen G, Bernstein CN, , Bitton A, Chan AK, Griffiths AM,  Leontiadis GI, Geerts W, Bressler B, Butzner JD, Carrier M, Chande N, Marshall JK, Williams C Kearon C. Consensus Statements on the Risk, Prevention, and Treatment of Venous Thromboembolism in Inflammatory Bowel Disease: Canadian Association of Gastroenterology. Gastroenterology 2014, 146: 835-848.

 

Israeli E, Graff LA, Clara I, Walker JR, Lix LM, Targownik LE, Bernstein CN. Low prevalence of disability among patients with inflammatory bowel diseases a decade after diagnosis. Clinical Gastroenterology and Hepatology 2014; 12: 1330-7.

 

Singh H, Nugent Z, Brownell M, Targownik L, Roos L, Bernstein CN. Academic performance among children with inflammatory bowel disease: A population based study. Journal of Pediatrics 2015; 166: 1128-33.

 

 

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Last reviewed: March 2020

 

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For more information and fact sheets about IBD and its treatment please visit: http://IBD.informedchoices.ca

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You are free to copy and distribute this material in its entirety as long as 1) this material is not used in any way that suggests we endorse you or your use of the material, 2) this material is not used for commercial purposes (i.e., is used strictly for non-commercial purposes, such as education), and 3) this material is not altered in any way (no derivative works).

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Source: This summary provides scientifically accurate information.  It was prepared in a research review by researchers with the University of Manitoba IBD Clinical and Research Centre.  Last revised:  25 August 2015

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Acknowledgement:  Preparation of this material was supported by funding from the Canadian Institutes of Health Research.  The views expressed here do not necessarily represent the views of these organizations.

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Disclaimer: Information in this pamphlet is offered ‘as is’. It is meant to provide general information that supplements, but does not replace, information provided by your health provider.  Always contact a qualified health professional for further information in your specific situation or circumstance.