November is IBD Awareness Month
November is Inflammatory Bowel Disease (IBD) Awareness Month in Canada, also known as Crohn’s & Colitis Awareness Month. IBD involves chronic inflammation of all or part of the digestive tract. The umbrella term includes two separate disorders that cause inflammation and ulceration of the small and large intestine: ulcerative colitis (UC) and Crohn’s disease (CD).
Canada has one of the highest rates of IBD in the world. Approximately 260,000 Canadians have this disease. People can develop it at any age, but more often inflammatory bowel disease is diagnosed in older teenagers and people in their twenties.1 Newly diagnosed with IBD? have a look at our newly diagnosed with IBD toolkit.
All through November, we will be sharing the most frequently asked questions on IBD from patients. Follow along by visiting our social media pages and following #IBDAwarenessMonth!
Let’s get into it!
1. How does ulcerative colitis affect someone?
People with ulcerative colitis (UC) may have:
- Up to 20 bowel movements a day
- Have false urges to go to the bathroom
- Loose stool that contains blood, pus and mucus.
IBD is a difficult disease to live with when it is flaring because the symptoms It causes can be painful, embarrassing and debilitating.
2. How does Crohn’s disease affect someone?
If someone you know has Crohn’s disease, they may experience periods of active symptoms (also referred to as a flare) and other times when symptoms are absent (remission).
When they are in a flare, symptoms of Crohn’s disease can be painful and debilitating.
They may experience:
- Abdominal pain and cramping
- Severe diarrhea
- Rectal bleeding
- Blood in stool
- Weight loss
- Diminished appetite
3. Why do people get IBD? Is anything known about possible causes?
While the exact cause of IBD is not fully understood, it is believed to result from a combination of genetic, environmental, and immune system factors. It’s important to note that that the specific causes can vary from person to person. Many researchers believe that IBD likely results from a combination of these factors, with genetics playing a significant role in determining an individual’s susceptibility.
Here are some insights into the potential causes of IBD:
- Genetic Factors: There is a strong genetic component to IBD. It tends to run in families, and individuals with a family history of IBD are at a higher risk of developing the condition. Specific genes, such as those related to the immune system and the gut’s barrier function, have been identified as playing a role in IBD susceptibility.
- Immune System Dysregulation: IBD is characterized by an abnormal immune response in the gut. In individuals with IBD, the immune system mistakenly attacks the gastrointestinal tract, causing inflammation. This immune dysregulation is thought to be a key factor in the development of IBD.
- Environmental Factors: Various environmental factors may contribute to the development or exacerbation of IBD. These factors include smoking, diet, infections, antibiotic use, and exposure to certain pollutants. However, the relationship between these factors and IBD is complex and not fully understood.
- Gut Microbiota: The composition of the gut microbiota (the trillions of bacteria and other microorganisms that inhabit the digestive tract) may also play a role in IBD. Alterations in the gut microbiota have been observed in individuals with IBD, but it’s not yet clear whether these changes are a cause or a consequence of the disease.
- Immune Response to Microbes: Some researchers believe that IBD may be triggered by an abnormal immune response to certain bacteria or viruses in the gut. This could lead to chronic inflammation and damage to the intestinal lining.
- Autoimmune Component: IBD is sometimes considered an autoimmune disorder, as the immune system appears to attack the body’s own tissues. However, the exact mechanisms of autoimmunity in IBD are still under investigation.
4. Will Inflammatory Bowel Disease ever go away?
IBD is a lifelong condition. While there is currently no cure for IBD, the disease can often be managed effectively with medical treatment and lifestyle modifications. The goal of treatment is typically to induce and maintain remission, which means reducing or eliminating symptoms and inflammation in the digestive tract. IBD is characterized by periods of active disease (flares) and periods of remission. Flares can be unpredictable and may require adjustments to treatment. On the other hand, many people with IBD can achieve periods of remission where their symptoms are minimal or absent, and their disease is under control. During these times, they may have a relatively normal quality of life.
5. Will I need an operation/surgery, and if so will it cure my IBD?
Whether or not you will need an operation for Inflammatory Bowel Disease (IBD), and whether the operation will cure your IBD, depends on various factors, including the type and severity of your IBD, your response to medical treatments, and the recommendations of your healthcare team. Here’s some information to consider:
Surgery for IBD:
Surgery may be considered in the following situations:
- Complications: If you have complications of IBD such as strictures (narrowing of the intestine), fistulas (abnormal connections between tissues), abscesses, or bowel obstructions, surgery may be necessary to address these issues.
- Medication Resistance: If your IBD does not respond adequately to medical treatments, your healthcare provider may recommend surgery to remove the affected portion of the digestive tract.
- Cancer Risk: In cases where there is a high risk of cancer or precancerous changes in the colon (particularly in long-standing ulcerative colitis), surgical removal of the colon (colectomy) may be recommended as a preventive measure.
Cure vs. Management
It’s important to understand that surgery for IBD is not a cure for the disease. While surgery can remove affected or damaged portions of the digestive tract and provide relief from certain symptoms and complications, IBD remains a chronic condition. After surgery, you may still require ongoing medical treatment and monitoring to manage the disease.
The decision regarding surgery should be made in consultation with your gastroenterologist or IBD specialist. They will consider various factors, including the specific type of IBD, the location and extent of inflammation, the severity of symptoms, and your overall health. They will discuss the risks and benefits of surgery and provide you with information to make an informed decision.
If you do undergo surgery, it’s important to follow your healthcare team’s post-operative care plan. Depending on the type of surgery, you may need to make dietary adjustments and take medications to prevent complications or manage residual symptoms.
It’s essential to have open and ongoing discussions with your healthcare team to determine the most appropriate treatment approach for your specific situation.
6. What are the available treatment options for IBD?
Treatment for IBD often involves medications such as anti-inflammatory drugs, immunosuppressants, biologics/biosimilars, and corticosteroids to manage symptoms and reduce inflammation. These treatments can help control the disease and promote remission. Watch our video on understanding the benefits and risks of IBD therapies here. Switching from a reference biologic to a biosimilar? View our biosimilar library.
Lifestyle changes, including dietary modifications, stress management, and regular exercise, can also play a role in managing IBD and preventing flares. More information on dietary updates and recommendations for the IBD patient can be found here.
People with IBD typically need ongoing medical monitoring and follow-up care to assess their disease activity and adjust treatment as needed. In some cases, surgery may be necessary to remove damaged sections of the digestive tract or address complications like strictures or abscesses. Surgery does not cure IBD but can help improve symptoms and quality of life.
It’s important to work closely with healthcare professionals, such as gastroenterologists, to develop an individualized treatment plan for IBD. While IBD may not go away permanently, many individuals with the condition can lead fulfilling lives with proper management and support. Advancements in treatment options and ongoing research continue to improve the outlook for people living with IBD, with the goal of achieving long-term remission and a better quality of life.
7. Are there any financial assistance programs available to help me pay for my medication?
In Canada, there are several financial assistance programs and resources available to help individuals with the cost of medications for Inflammatory Bowel Disease (IBD), such as Crohn’s disease and ulcerative colitis. Here are some options to consider:
- Public Drug Plans: Most provinces and territories in Canada have public drug plans that provide coverage for prescription medications, including those used to treat IBD. The eligibility criteria and coverage levels can vary by province or territory. For example, in Ontario, there is the Ontario Drug Benefit (ODB) program, while in British Columbia, there is PharmaCare. Contact your provincial or territorial health department or visit their websites to learn more about the specific drug plans available in your region by clicking the link below:
- Alberta Blue Cross
- British Columbia
- New Brunswick
- Newfoundland and Labrador
- Nova Scotia
- Prince Edward Island
- Private Health Insurance: If you have private health insurance through your employer or individually purchased coverage, check your policy to see if it includes prescription drug coverage. Many private insurance plans offer coverage for medications used to treat IBD.
- Patient Assistance Programs: Some pharmaceutical companies offer patient assistance programs that provide financial assistance or free medications to eligible individuals who cannot afford their prescription drugs. These programs vary by medication and manufacturer, so it’s best to check with the specific manufacturer of your medication to see if such a program exists.
- Pharmacy Discount Programs: Some pharmacies offer discount programs or loyalty cards that can provide savings on prescription medications. Inquire with your local pharmacy to see if such programs are available.
- Tax Deductions: In some cases, you may be eligible for tax deductions or credits related to medical expenses, including the cost of prescription medications. Consult with a tax professional or visit the Canada Revenue Agency (CRA) website for information on tax-related benefits.
8. I have IBD, should I consider getting pregnant?
It’s important to recognize that each person with Crohn’s disease and ulcerative colitis will have different chronic symptoms related to their disease state, will have different history of surgery related to their disease, and may also be on different medications to continue treating their disease and to keep their disease in remission.
Due to this, it is important that if you’re thinking about having a family that you involve your gastroenterologist first. More importantly, don’t make assumptions that you shouldn’t get pregnant because of your disease! Together with your physician, and your gastroenterologist – you can have a discussion that is specific to your IBD. Watch our CDHFTalks on pregnancy and IBD here.
This campaign was made possible due to an unrestricted educational grant from Organon and Fresenius Kabi.
Resources for IBD Awareness Month
2022 IBD Nurse-Centred Care Impact Report
This report grew out of an increasing awareness, supported by global clinical experiences and guidelines, that Canada could provide better care to IBD patients. There is a particular need and opportunity to expand the use of nurses with special training in IBD. These nurses provide high value across several dimensions of IBD care, and studies continue to show that an enhanced role for IBD nurses improves the quality, outcomes, and cost-effectiveness of care. Lacking sufficient numbers, IBD nurses working in Canada today are left to “put out fires,” rather than making full use of their skills.
To capture the value of IBD nurses and identify gaps in how this resource is being used in Canada, the Canadian Digestive Health Foundation (CDHF) conducted in-depth surveys and interviews with four groups of IBD stakeholders: nurses, gastroenterologists, patients, and caregivers.
This report summarizes the findings from this original research, presents relevant literature from other parts of the world, and makes recommendations for a national strategy to improve IBD care that includes an enhanced role for IBD nurses.
CDHF Talks: IBD & Pregnancy with Dr. Yvette Leung
CDHF Talks: Benefits and Risks of IBD Therapies with Dr. Yvette Leung
Webinar: Transitioning from Pediatric to Adult IBD
Other Resources to View and Share this Month:
- IBD Toolkit for the Newly Diagnosed
- Transitioning from Pediatric to Adult IBD
- IBD Transition Checklist for Patients and Parents
Diet & Lifestyle
- Crohn’s & Colitis Canada. 2018 impact of IBD in Canada. https://crohnsandcolitis.ca/Crohns_and_Colitis/documents/reports/2018-Impact-Report-LR.pdf
- Crohn’s & Colitis Canada. Getting diagnosed. https://crohnsandcolitis.ca/About-Crohn-s-Colitis/IBD-Journey/Diagnosis-and-Testing/Getting-Diagnosed
- Walsham NE, Sherwood RA. Clin Exp Gastroenterol 2016;9:21.
- Crohn’s & Colitis Foundation. Understanding IBD medications. https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/understanding-ibd-medications-brochure-final.pdf
- Crohn’s & Colitis Foundation. Surgery. https://www.crohnscolitisfoundation.org/campus-connection/surgery
- Canadian Association of Gastroenterology (CAG) clinical practice guidelines. JCAG 2019;2:e1.