Inflammatory Bowel Disease (IBD) primarily refers to Crohn’s disease and ulcerative colitis, and is an umbrella term used to describe conditions that result in chronic inflammation of the gastrointestinal tract. Patients can experience debilitating pain, fatigue and unintentional weight loss, which causes a significant impact on quality of life. One in 150 Canadians have IBD, giving Canada one of the highest prevalence rates in the world.
Sinai Health is a leader when it comes to treating IBD and digestive diseases in general. The Inflammatory Bowel Disease Program at Mount Sinai Hospital combines surgical, medical, pathology, radiology, nursing and nutritional IBD expertise under one roof. We asked a few of these clinical and patient experts to share their tips for surviving, thriving and supporting those with IBD.
Tips for caregivers, and those supporting loved ones with IBD
Jenna Rines, Social Worker, Gastroenterology and Surgical Oncology, and Brenda O’Connor, RN Research Coordinator at the Zane Cohen Centre for Digestive Diseases
- As a caregiver, the best thing you can do for your loved one is to just listen – without judgement or advice, unless this is asked for – and acknowledge how difficult it is to have IBD.
- It’s important to be informed as a patient and a caregiver and seek out information, but it’s also easy to overwhelm yourself with information, especially around the beginning of a diagnosis. Make sure you consider what you need and when you need it, especially when thinking about attending support groups or education sessions.
- It’s easy to become isolated with IBD, for both patients and caregivers. Try to support yourself as a caregiver with people who care for you and will support you.
- Anxiety and depression are common among patients with IBD, as well as caregivers. Find someone to talk about it if you are experiencing these symptoms, or encourage your loved one to talk about it too – normalize it with them and find common ground.
- Find activities that are nourishing for you, whether that is yoga, music, reading, painting, or hiking, or something else, and make time to do it – no exceptions.
Recommended resources for IBD patients
Dr. Hillary Steinhart, Medical Lead of the Inflammatory Bowel Disease Centre at Mount Sinai Hospital and Professor of Medicine in the Department of Medicine at the University of Toronto
- www.zanecohencentre.com/ibd This website has a wealth of information ranging from basic facts about IBD, to joining current research studies, as well as videos, events and more. An incredible resource for Canadians diagnosed with IBD.
- www.crohnsandcolitis.ca Includes inspiring stories from fellow IBD patients, free webinars, events, and many options for support and education.
- www.crohnscolitisfoundation.org This website is from a US- based organization, and contains a lot of information about medications, as well as resources directed for a teen audience and those who are newly diagnosed.
- For books, Dr. Steinhart recommends checking out the comprehensive, up to date list of both academic and popular books at https://www.crohnscolitisfoundation.org/living-with-crohns-colitis/bookstore.html. He’s also written two books, Crohn’s and Colitis: Understanding and Managing IBD and Crohn’s and Colitis Diet Guide that contain a wealth of knowledge.
Tips for those recently diagnosed with IBD
Steve Thompson, patient advocate, diagnosed with Crohn’s at age 20
- Take care of your mental health. It can be a large component of this disease and you may have moments you feel alone or cheated. Reach out and ask for support through Mount Sinai Hospital or speak to someone in a similar situation about your fears and concerns. It’s okay to vent, you are not in this alone!
- Enjoy your moments of remission, embrace and take full advantage of your health when you have it.
- Maintain regular check-ups and imaging so you can catch problems before they become overwhelming.
- Listen to your body, you know better than anyone else if something is wrong. Don’t be afraid to self-advocate with your doctor. If something isn’t working or is not right, speak up.
- Appreciate and thank your support team. Especially during a flare, make it known to your loved ones, friends, and doctors you appreciate they are all doing what they can to help YOU!