Your Name: Amanda Fleming
Your Age Group? 25-29
Where are you from? Muskoka, Ontario
Your Profession? Hairstylist/Homemaker
How many years since you were first diagnosed? 11
Diagnosis? Crohns and Ulcerative Colitis
What do you wish someone had told you when you were newly diagnosed?
I had no idea how this diagnosis would fully impact all the corners of my life. Learn to trust people who can share your experiences with you and support your journey. This will be imperative. It’s okay to have bad days and breakdowns. It’s not ok to unpack and live there. Surviving the struggle, no matter what state you end up in, means you’re winning. Finding my rhythm and balance has been many years in progress...
Letting things take their course, knowing it will always settle at some point, is something I’ve learned to make peace with. Never forget this is a life that was not chosen, that we are not responsible for this journey, but we do take responsibility for rest of this life and living it proudly.
What is a favourite go-to, safe food for you when you are feeling unwell?
Low acidity fluids, plain carbs, broths and apple sauce, mashed potatoes. I avoid all spicy, rich, or heavily seasoned foods, at all times.
Do you have a hot tip for how to get through a colonoscopy or a funny colonoscopy story you'd like to share?
I drink huge amounts of coconut water during prep, it's full of electrolytes to keep you hydrated, but is also a natural laxative to help the process along.
Describe your relationship with IBD:
Up/down, love/hate, better/worse. Overcoming life’s challenges while battling my disease sometimes feels impossible. However, this duality breeds strength that I am ever grateful for.
A serious flare will always kick you when you’re down. It will leave you weak and uncomfortable. But It also brings the doers; the people who drop everything to care, help and support you and your family. It’s a reminder to be gentle with your body and to KNOW YOUR BOUNDARIES.
I have learned, after all of these years, to meet challenges head-on. I have learned that I am strong, capable and have the will to achieve almost anything I set my mind to. This is an inner strength/determination I possess not in spite of, but because of, my disease(s).
What would you like to share with this community about your experience with IBD?:
My diagnosis was 11 years ago, after 16 years of feeling different. Since then, I have endured many, many medications including prednisone, biologic infusions, and injections. Each year I have multiple colonoscopies and am sent for blood work regularly. In addition to the pain and discomfort, the medication, the litany of appointments, I have to cope with endless side effects. Surviving each day is often achieved through a series of compromises; both my own and my family’s.
I have had countless hospital stays for antibiotic, steroid, iron and fluids infusions. Having been diagnosed with both Ulcerative Colitis and Crohn's, I’ve seen many specialists, in many places. I have found these experiences have created both a strong foundation of knowledge, as well as, an in-depth understanding of my condition(s). I’ve also learned a great deal about the healthcare system and the types of healthcare available.
My ground rules for healthcare are:
With all the hardships and triumphs that accompany life with Crohn’s, it is imperative we all share what happens behind closed doors. Advice, questions and experiences should be shared without stigma or fear. The initial diagnosis and then daily life are hard enough. Nobody should deal with this alone.
What has been the most helpful things for you as you manage your illness? (This may be the medication you are on, your hot water bottle, your support system, an alternative medicine therapy, a book.. anything!):