Dear Family and Friends,
I'm a Crohn's Disease Warrior...
(June 2016 & April 2017 posts are from my Gutsy Walk 2017 story)
October 2018 post is for my Gutsy Walk 2019 story)
- The question many people ask…What is life like living with Crohn’s Disease? I wake up every day feeling nausea, I am in constant pain (mild cramping to severe stabbing pains), my stomach flips often, I frequent the washroom way too often (from mild to severe diarrhea to filling the toilet full of blood), I can’t eat anything without having symptoms (gas, bloating, pain, running to the washroom, ALWAYS uncomfortable), I experience stomach pain, joint pain, headaches, chest pain, kidney pain, difficulty breathing and fatigue (I am extremely tired ALL the time and it is so hard to get out of bed most days, some days I sleep all day and still feel tired…I think that symptom weighs on me the most), I have anxiety and have been depressed many times (I have taken medication while depressed and nothing has ever helped because I never felt “good”), lastly I am always losing weight, even my hair breaks off (it’s as though it doesn’t grow because it breaks and I never need a haircut) and my eye sight has diminished significantly…Every day I have symptoms, some days are better than others and some days are pure hell…
I was officially diagnosed with Crohn’s Disease on Thursday, May 19, 2016 by the specialist Dr. Cooper in Ontario. I was unexpectedly given the diagnosis weeks earlier by my family physician during my daughter’s doctor’s appointment. The words “So you have Crohn’s” constantly echo’s through my head. They rolled off the Doctor’s tongue like it was nothing and my response was “Oh OK, how is it treated?" with the Doctor responding "There is no cure."
I’ve slowly started to put the pieces together from a life full of symptoms and never understanding why I never felt “good” now makes sense. Going back to the first unexpected diagnosis and my first take on everything. I was in complete shock, I didn’t fully understand what it was that I was dealing with, how it was going to change my life or what to expect next. With the specialist appointment being weeks away I did a bunch of online research, found a community support group, participated in a webinar, looked into counselling and tried to get a better understanding on my own of what Crohn’s disease is and how I was going to approach it. I also cried for days from fear of the unknown and the possibility of cancer in my future. Being diagnosed with an illness with no cure weighs heavy on any person. Knowing that you are going to be sick for the rest of your life is not easy to accept. My appointment with Dr. Cooper came and she explained more. She showed me pictures of where signs of the disease are located, answered questions, talked about medication and further medical procedures. She mentioned that the scope can only see the opening of the small intestine and an MRI would help see more. She also sent me for blood work to get a base line. She prescribed medication called Pentasa. During the appointment I felt strong and wasn’t emotional. Even while getting blood work, I joked around with the technician saying “At least I’ll always be skinny”. It wasn’t until the pharmacist started talking about the medication and the dosing that I felt emotional. I had to force back tears while he was explaining it to me. Medication makes being sick real and the thought of having to take 8 pills daily for the rest of my life was really hard for me. I don’t like taking any medication and I have always suffered horrible side effects from any medications I have taken. I went home and read more online about the medication and others who have taken it. Everything I read said “not taking medication is not an option with Crohn’s” and I reluctantly accept that truth…
I have tried my best to approach this positively and I owe my partner in life everything for that mindset he has instilled in me, I love you Matt. We already eat well and rarely eat a lot of junk. We both like to be active and started doing something together daily whether it be walking, hiking or biking. I know that the fresh air, sunshine and an active lifestyle makes me happy. We even booked a summer vacation and started a bucket list of places we would like to go. It has always been important to have things to look forward to.
- Almost a year since diagnosis…I have completely changed my life. I moved my family to BC and we are living what we call “the good life”. We have been enjoying skiing, biking, walking, hiking, swimming and all that this new lifestyle has to offer. I treat life much differently now and I remember that every day is a gift. I still go through many ups and downs, I have good days and not so good days and I do fight for my health every day in ways most people don’t understand. The rough days are less frequent on medication and I try very hard not to let those days get me down. It is my forever struggle. I also feel like I have a pharmacy in my purse and I take a dozen pills a day to help me feel “normal”. My daughter is my strength and I push myself for her. I constantly tell myself that Crohn’s is not my story and I focus my life on my family, work, activities and memories. I have hope for the future that a cure will be found and I am thankful for the treatment that improves the lives of those living with this debilitating disease.
– Two and a half years since diagnosis…It has been an incredibly challenging year and half health wise. As I look back on what I have written in the past, I realize that I truly was only at the beginning of dealing with this chronic illness. I used to think that the medication I was on was good enough but it merrily acted like a topical ointment which allowed the disease to progress. This past year I have had a colonoscopy (unfortunately the sedation did not work & I felt everything), I have been put on numerous medications including multiple rounds of steroids & supplements (at one point I was taking 30 pills daily), I have had 28 medical appointments (I have seen my family physician, walk in clinic doctors, my GI doctor, urologist, gynecologist & dietitian), I have had frequent blood work, an x-ray, a CT scan & iv contrast MRI, I had my first gastroscopy (the sedation worked for the first time too!), lastly I had all my medication tapered to nothing in the summer (doctors’ orders) and I experienced what I consider to be the worst of what I have experienced having Crohn’s thus far. As much as I try and have tried to not let this illness consume my life, it has taken over recently. At one point I was sleeping 16 hours a day and lost more days then I’d care to count. The struggle is real for those fighting a chronic illness and the strength that it takes far surpasses what I ever thought I would have.
It has been a long road to get to this point...This past month I have started taking an immune suppressant (oral medication weekly) and biologic medication (iv medication at an infusion clinic week 0, 2, 6 & every 8 weeks thereafter). I receive an analgesic, antihistamine and steroid as pre meds before each infusion. I take 8 supplements daily, visit a doctor weekly and get blood work done monthly. I now have a team of health care professionals along with my doctors monitoring & helping me through this difficult journey and I am extremely THANKFUL! After my first infusion within 24 hours I felt no pain, no nausea and had no diarrhea (I was up to going 8 times a day). It was amazing! I experienced a hiccup a week later with anaphylaxis but I am recovering and I have HOPE that I’ll feel better again after my next infusion. Every day I am getting STRONGER and I will never stop fighting for my health. My partner Matt has been an amazing support and my daughter Gabriella gives me strength. I desperately want to feel better for them as much as I do for myself. I'm praying for a cure and until then I hope everyday that I will experience remission soon.
This is only my story and others have it far worse. Did you know that 1 in 150 Canadians lives with inflammatory bowel disease? There are children as young as 5 years old being diagnosed and they have to go through the same challenges. There are teenagers requiring surgery and then needing to wear a diaper. These diseases take so much from so many people and we need to find a cure. This is why I support Crohn’s and Colitis Canada because they are making a difference in the lives of those children and thousands of people living with these debilitating diseases. On June 2, 2019, I will walk for myself and everyone fighting for their health…because losing is not an option.
Thank you for your support xo
Every hour of every day, one Canadian is newly diagnosed with Crohn’s disease or ulcerative colitis.
As it takes guts to find cures, I am getting gutsy by participating in Crohn’s and Colitis Canada’s Gutsy Walk on Sunday, June 2.
Today, I’m asking you to get gutsy with me by making a donation to my personal fundraising page.
How will your generous gift make an impact? Your donation will be invested in world-class research, empowering patient programs, advocacy efforts and elevating awareness.
Together, we can move towards a future free of Crohn’s and colitis.
Thank you for showing you have the guts it takes to find cures.