CDHF’s My IBD Journal
Written by: CDHF
Updated: February 18th, 2025
The Canadian Digestive Health Foundation, in partnership with Organon, is excited to present My IBD Journal — an online journaling tool designed to help adolescents and young adults with Inflammatory Bowel Disease (IBD) manage their health as they transition from pediatric to adult care. This secure platform allows you to take control of your healthcare journey by maintaining a detailed, private record of your medical history and personal experiences with IBD. With My IBD Journal, you can continuously update your information or create multiple journals to reflect changes in your health over time.
What is IBD?
Inflammatory Bowel Disease (IBD) is a term used to describe a group of chronic conditions characterized by inflammation of the digestive tract. The two main types of IBD are ulcerative colitis (UC) and Crohn’s Disease.
- Ulcerative colitis primarily affects the colon (large intestine) and rectum, causing inflammation and sores (ulcers) along the lining. Symptoms often include abdominal pain, cramping, diarrhea (often with blood or mucus), and an urgent need to have a bowel movement. UC usually begins in the rectal area and may spread continuously to involve more of the colon over time.
- Crohn’s Disease can affect any part of the digestive tract, from the mouth to the anus, but most commonly impacts the end of the small intestine (the ileum) and the beginning of the colon. Unlike UC, Crohn’s can affect the entire thickness of the bowel wall and may cause patchy areas of inflammation. Symptoms can include abdominal pain, diarrhea, fatigue, weight loss, and malnutrition.
While UC and Crohn’s Disease share some similarities, they differ in their location and the way they affect the digestive tract. Managing these conditions often requires a combination of medication, diet, and lifestyle changes, along with regular monitoring by healthcare professionals.
Why Use My IBD Journal?
My IBD Journal is an online platform designed to support adolescents and young adults with Inflammatory Bowel Disease (IBD) as they transition from pediatric to adult care. This tool empowers users to take charge of their healthcare by offering a secure and accessible way to maintain a detailed record of their medical history and personal experiences with IBD. With My IBD Journal, you can continuously update your information or create multiple journals, reflecting the evolution of your healthcare journey over time.
My IBD Journal offers a variety of features to help you stay on top of your health:
Question and Answer Format
Journaling your health history is made easy by asking you specific questions that help you remember and journal your IBD experience. Try asking your parent, guardian, and healthcare provider to help you fill in your journal.
Private and Secure Cloud Storage
Rest assured your information is safe and secure. My IBD Journal stores your information encrypted so only you can view it. We use two-factor authentication and a QR code-based key system to keep your data private and secure.
Instant Access
My IBD Journal is ready when you need it. You can login to access your journal any day at any time so you’ll never have to worry. You can even download your journal as a PDF to print or share with your healthcare providers.
How to Use my IBD Journal
Create an Account
Start by creating an account with your email and password to keep your documents secure. Select ‘Create a New Journal’ from the menu on the left-hand side of the webpage. To help keep your journals organized, you can give it a nickname so you can easily refer back to it.
Document Your Health History:
Use your My IBD Journal to keep an accurate documentation of your past and present health history to help you communicate better with your physicians. You can fill in your diagnosis, date of diagnosis, perianal involvement, associated gastrointestinal diseases, skin conditions, liver/pancreas and joint issues.
Overall Health and Wellness
Understanding your general health and wellness can help you and your physicians understand and identify things that may impact your IBD outcomes. Take note of your height and weight, food and/or medication allergies, food intolerances, and if you follow any specific diets.
Family Health History
Having a history of IBD in your family is an influential risk factor for developing IBD. Answer questions that will help your physician understand your family health history, including:
- Do you have any immediate family members with IBD?
- Does anyone in your family have (or has had in the past) any of the following health conditions?
- Any other non-IBD related family medical history details you think are relevant
Vaccination History
It’s important to keep track of your vaccination history and that you provide this information to your doctors. This will make sure you remain up-to-date with your vaccinations. Here, you can fill out your most recent vaccination dates for Hepatitis A and B, COVID-19 among others.
Track Your Symptoms
Diagnosis History
This section of My IBD Journal will allow you to track when your IBD symptoms began, and the factors that led you to be diagnosed with IBD. Here you can describe the symptoms and events that led up to your diagnosis.
Symptoms Experience
Those diagnosed with Irritable Bowel Disease may experience symptoms unique to them. Help your doctor understand how they start and how you feel when they are occurring.
IBD Pain Experience
IBD symptoms can cause significant pain, but everyone feels the impacts of pain differently. Help your doctor understand how IBD pain impacts your life. In this section, you can describe the pain you experienced during your last flare up, track the time and how long the pain occurs, and impacts of lifestyle to IBD pain.
Ancillary Symptoms
There may be other symptoms that you experience that are related to your IBD. It’s important to understand the full spectrum symptoms that are impacted by your IBD. In this section of your journal, track:
- Nausea and Vomiting
- Bowel Movements
- Other related symptoms including fever and joint pain
Log Your Investigations and Treatments
IBD Investigation History
Have you undergone any investigations for your IBD like endoscopy, colonoscopy, gastroscopy, MRE or chest x-rays? Record any relevant investigations and their findings in this section of your journal.
Surgery History
Have you had any other surgeries that you should record? The surgeries or surgical procedures you track don’t need to be IBD specific. You can keep a record any other surgeries you have had in this section.
IBD Treatment History
It’s important for you to keep track of all the treatments and medications that you and your physicians’ have tried to help improve your IBD. Understanding your treatment history will help your IBD health care team to recommend new approaches to treatment.
Keep Important Contacts Handy:
It’s a good idea to make sure that you have the contact information of your health care team handy. List the contact information for your personal, health care providers and pharmacies in this section.
Download and Share Your Journal:
Once you’ve completed your journal, you can download a PDF of the journal to store on your smartphone or print a copy to give to your health care provider!
Need Help? For any further questions, please reach out to info@cdhf.ca
My IBD Journal is brought to you by Organon.
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